The University of
This handbook has been prepared
by the Hospital Ethics Committee to provide staff with easy access to
information about the Committee and its subcommittee, the Pediatric Ethics
Committee. It also provides information regarding guidelines and policies that
have been adopted by this institution for responding to ethical issues in the
care of patients.
The handbook will be revised and
expanded as needed. Suggestions for revisions or additions are welcome.
Requests for ethics case review
with the Hospital Ethics Committee can be made by contacting the hospital page
operator (ext. 85155) and asking them to page the Ethics Committee team member
on call, as further described in section A1, below.
For your convenience, the
Handbook has been divided into two sections. Part A includes guidelines and
policies adopted by the Hospital Ethics Committee and the Pediatric Ethics
Committee. Part B includes guidelines and policies adopted by other entities at
this medical center (such as the University of Kansas Hospital).
1.
Accessing the Ethics Committees
2. Ethics
Committee
3. Policies
and Procedures of Hospital Ethics Committee
4.
Policies and Procedures of Pediatric Ethics Committee
5.
Patient Rights and Organizational Ethics Committee
6.
Advance Directives
7.
Guidelines for Do Not Resuscitate (DNR) Orders
8.
Pre-Admission and Post-Discharge DNR Orders
9.
Honoring DNR Orders During Invasive Procedures
10.
Ethical Guidelines for Decision-Making: Withholding or Withdrawing Life
Sustaining Treatment (Adults)
11. Ethical Guidelines for Decision-Making: Withholding or
Withdrawing Life-Sustaining Treatment (Children)
12.
Guidelines for Withholding or Withdrawing Life-Sustaining Mechanical
Ventilation
13. Care
of Patients in a Persistent Vegetative State
14.
Recommended Procedures for Determining Brain Death
15.
Research Involving Human Subjects
1.
Patients’ Rights
2. Code
of Ethics and Professional Conduct
3.
Requests for Relief from Participation in Aspects of Care
4.
Privacy/Confidentiality
5.
Release of Information
6. Patient
Denial/No Information Status
7.
Resolution of Professional Disagreements
8.
Donation of Organs, Tissues and Eyes
9.
Informed Decision Making
10.
Refusal of Blood Transfusions
11.
Management of Patient/Family Complaints
12.
Support Services for Patients who are Deaf, Hard of Hearing, or Do Not Speak
English
13.
Patient Self-determination Act of 1990
___________________________________________________________________________
A1. Accessing
the Ethics Committees
The Hospital Ethics Committee
and its sub-committee, the Pediatric Ethics Committee, may be accessed 24 hours
a day by calling the Hospital’s page operator at 588-5155, and asking the page
operator to page the designated team leader (or alternate) of the on-call case
review team. Please be sure to specify which Committee you need (in general, if
you have an issue relating to someone who is under age 18, you probably want
the Pediatric Ethics Committee).
Every member of both committees
welcomes any questions or requests for informal discussion of clinical ethics
at any time. A number of members of these committees have formal training in
clinical ethics and most have served for several years on these committees. A
roster of current members can be obtained from the Chairs or Vice-Chairs of the
respective committee (in the case of the “adult” committee, from Jerry
Menikoff, jmenikof@kumc.edu,
588-7662, or Noreen Thompson, nthomps2@kumc.edu, 588-2038, and in the
case of the pediatric committee, Kathryn Veal, kveal@kumc.edu,
588-5908 or Martha Montello, mmontell@kumc.edu, 588-7432).
A2. Ethics
Committees Mission Statement
The Hospital Ethics Committee of
the University of Kansas Hospital and its subcommittee, the Pediatric Ethics
Committee, serve the entire medical center community by encouraging and
supporting: ethical reflection, mutually respectful dialogue, critical analysis
and, most importantly, standards of conduct which reflect this institution’s
commitment to patient-centered care.
A3. POLICIES AND PROCEDURES: HOSPITAL ETHICS
COMMITTEE
I. Function
The Hospital Ethics Committee (hereafter referred to as “the committee”) will have three functions or roles:
In cooperation with the hospital
administration, its various departments and divisions, and its medical/nursing
and allied health professional staff, the committee will undertake educational
efforts in clinical ethics. Depending on
the availability of resources, the committee will develop or assist others in
the development of lectures, seminars, workshops, courses, rounds, in-service
programs and the like in clinical ethics.
The aims of these educational efforts will be to provide participants
with access to the language, concepts, principles and body of knowledge about
ethics that they need in order to address the complex ethical dimensions of contemporary
hospital practice.
The committee will assist the
hospital and its professional staff in the development of policies and
procedures regarding recurrent ethical issues, questions or problems that arise
in the care of patients. In this role
the committee may provide analysis of the ethical aspects of existing or
proposed policy or assist in the development of new institutional policy in
areas of need.
An important function of the
committee will be its role as a forum for analysis of ethical questions which
arise in the care of individual patients.
In most circumstances these questions concern appropriate care of
patients with diminished capacity to participate in decision making regarding
their care. In this role the committee
will attempt to provide support and counsel to those responsible for treatment
decisions including health care providers, patients, surrogates and members of
the patient’s family.
Case review is particularly
recommended in three specific categories of decision making:
1. decisions
involving significant ethical ambiguity and perplexity in which case review may
provide insight into complex ethical issues;
2. decisions
involving disagreement between care providers or between providers and
patients/families regarding the ethical aspects of a patient’s care; or
3. decisions
that involve withholding or withdrawal of life-sustaining treatment which are
not adequately addressed in policies and procedures included in this Handbook.
In this role the committee will
not act as a decision-making body, but will attempt to assist and to provide
support to those who do have this responsibility. Its role in all such cases shall be advisory.
II. Appointment
and Membership
The committee membership will be
multidisciplinary. A majority of the
membership will be non-physicians.
Additional membership will include as available at least the following
disciplines: nursing, social work, pastoral care, clinical ethics, law,
respiratory care, and dietetics and nutrition.
In view of the unique ethical problems involved in situations involving
pregnant women, one physician member shall be from the Department of Obstetrics
and Gynecology. The Chief Executive
Officer of the Hospital (or designee), the Chief of the Medical Staff (or
designee), and an attorney employed by the
Members will be approved
Committee and the Chief Operating Officer of the Hospital. The Medical Director of Hospital Ethics will
serve as the Chair. The Vice-Chair of
the committee will be chosen by the membership of the committee. It is recommended that the Vice-Chair be
identified from among those who have served on the committee at least one year.
III. Jurisdiction
In view of the establishment of
a Pediatric Ethics Committee as a standing sub-committee (see “Policies and
Procedures of the Pediatric Ethics Committee”), the mandate of the committee
will be to engage in its functions of education, policy development and case
review as these relate to the care of patients who are adults, i.e. 18 years of
age or older. The committee’s jurisdiction will also include the unique ethical
issues involved in decision making involving pregnant women when gestation is
felt to have progressed to the stage of fetal viability. Policies and procedures and all non-case
review activities of the Pediatric Ethics Committee are subject to the review
and approval of the Hospital Ethics Committee.
IV. Procedures
A primary educational emphasis
for the committee is its own education and mechanisms to ensure its continuing
education. The field of clinical ethics
is a new, broad and rapidly evolving one.
In order to maintain an appropriate level of expertise, the committee
will develop means of providing members information about clinical ethics and
access to the rapidly expanding body of literature in this field. Methods may include orientation of new
members, specific reading assignments, an annual retreat, seminars, mock
case/policy review exercises and the like.
In addition, the committee may participate in networking with other area/regional
ethics committees, such as the Greater Kansas City Ethics Committee Consortium
of the
Any educational efforts
undertaken by the committee for members of the hospital staff will be
coordinated with existing educational efforts as much as possible. Primary emphasis will be on assisting
departments and divisions to incorporate material about the committee and the
field of clinical ethics into their existing educational programs and
activities.
At the request of the Chief
Operating Officer of the Hospital, the Chief of Medical Staff, or the Executive
Committee of the Medical Staff, the committee will undertake review of any
existing policy, protocol or procedure; provide analysis of the ethical issues
involved; and, provide recommendations regarding appropriate modifications,
where needed. With the approval of the Chief Operating Officer of the Hospital,
the committee may also undertake such review at the request of any member of
the hospital staff.
In addition, when requested, the committee will assist the
hospital and/or its staff in the development of new policies in areas that
involve significant ethical questions or problems. If the committee feels that
there is a need for policy development in order to address a significant
ethical issue, it will submit a written recommendation to this effect to the
Chief Operating Officer of the Hospital and request permission to develop a
policy statement. Any recommendations for modification of existing policies or
development of new policy must be submitted in writing to the Chief Operating
Officer of the Hospital.
1. Access to
Committee. A case review
team will be available on-call to respond to requests for case review at all
times. A roster of team leaders and
members will be available through the Hospital Operator. A member of the committee will attempt to
have an initial discussion with the person making the request within
twenty-four hours of the request, whenever possible. The Team Leader will
undertake case review only in response to a reasonable and appropriate request
for review by either (1) any of the following persons who is involved in the
case: a member of the medical staff, house staff, hospital staff, or hospital
administration, or (2) the patient, patient’s guardian, surrogate or a member
of the patient’s family. Prior to
proceeding with the consult, the Team Leader will notify the patient’s
designated attending physician of the request for review, discuss the possible
basis for the review and request his/her support and involvement.
2. Informal
and Formal Case Review. Committee
members will be available to provide advice
regarding a case in both an informal and formal manner. The remaining
portions of this section (C) relate only to requests for formal case review. In
the case of a request for informal case review, no documentation of the
comments of any committee member will be placed in the patient’s medical
record. Informal requests for case review will, however, be reported by the
involved committee member to the full committee at the next regularly scheduled
meeting of the committee.
3. Determination
of Need for Review by Full Team. Following the receipt of a
request for case review, the Team Leader will determine whether or not there is
a need to present the case before the full team. In most situations, there is
likely to be no such need, and the Team Leader can, on his or her own, proceed
to review the case, and provide a recommendation, as is otherwise described in
the remainder of this section. Formal case review by the entire team will most
likely be advisable in cases that involve especially complex ethical issues.
4. Preparation
for Review Team Meeting. Following
a decision by the Team Leader that it is appropriate to have review by a team,
the team will consist of two to five members of the committee and will reflect
the multi-disciplinary composition of the committee. The team leader will review the request to
determine the nature of the case, the status of the patient, the ethical
question(s), concern(s) or problem(s) prompting the request and any other
information needed in order to determine if review is appropriate.
If in the judgment of the leader of the case review
team the request is appropriate, he/she will contact the patient’s physician to
discuss the request, to request his/her participation and to schedule the case
review meeting. In addition, absent special considerations, the patient or the
patient’s family or surrogate decision makers, as the case may be, should also
be notified that the case review will be taking place, and invited to
participate. Their decision not to participate, or their objection to the
consult, should not prevent a formal ethics consult from taking place, assuming
the consult is otherwise determined to be appropriate by the team leader. If
the patient’s attending physician believes that ethics case review is not
appropriate, this conflict should be referred immediately to the Chief of
Medical Staff for resolution. In the event of a persistent conflict, the Chief
of the Medical Staff will assist in the orderly transfer of responsibility to
another attending physician who is willing to permit the case review to go
forward.
The members of the team may
determine that it is appropriate to invite other participants to some or all of
the meetings in which the team discusses the case. Among those persons who
might be invited so such meetings are: members of the professional staff who
are directly involved in providing care to the patient; resource personnel with
special expertise; and the patient and/or members of the patient’s family.
If in the judgment of the case
review team, the request for ethics case review is inappropriate, the team
leader will so inform the party requesting review and/or the attending
physician. This action will also be
reported to and reviewed by the full committee at its next regularly scheduled
meeting.
5. Conduct
of Case Review Meeting. At the
meeting the leader of the team will instruct all non-members present regarding
the advisory role of the committee; the intent of the committee to serve as a
supportive forum for those who have the primary decision-making responsibility;
and the need for strict confidentiality of all material presented and
discussed.
If the patient’s attending physician and other
health care providers are present, it will likely be appropriate for them to
present information to the review team regarding the history of the patient,
the present condition of the patient, the prognosis and any other material
believed to be relevant to the case review.
The leader might then find it useful to ask those involved, including
patient/family members if present, to describe what specific ethical questions,
problems or issues prompted the request for case review.
Following appropriate discussion
of these and issues identified by members of the team, the team leader may, if
non-members were present during the earlier portions of the meeting, convene a
“closed” (members only) session in order to develop a specific recommendation
if appropriate.
Members of the case review team may also decide before or after the case review meeting that formal review of the case by the entire ethics committee is appropriate. In this case, the leader of the review team will notify the Chair (or designee) who will convene an emergency meeting of the entire committee as soon as possible.
6. Recommendations. The results of the case review and any
recommendations will be communicated to the individual who requested case
review; to the attending physician; to other members of the staff; and, to the
patient/family as appropriate. Following
these discussions, and with the concurrence of the attending physician, the
team leader will record the results of the ethics case review in the patient’s
medical record. These results will also
be reported to, and reviewed by, the full committee at its next meeting.
V. Meetings
The committee shall meet monthly in addition to any
meetings called for specific case review.
An agenda will be developed by the Chair and distributed one week prior
to the meeting. Meetings which do not
involve discussion of specific case material will be open to any member of the
hospital community. Guests and other
interested parties will be allowed to attend at the discretion of the
chair. For purposes of conducting
business, seven members shall constitute a quorum. Actions of the committee shall be taken by
the vote of a majority of the members attending the meeting. Each member will
be required to attend at least five of the committee’s regularly scheduled
meetings each year. Failure to do so can
be considered to constitute a resignation and the vacancy shall be filled by
appointment of a new member.
VI. Record
Keeping
The committee will maintain
minutes of all of its meetings which will include summaries of all case reviews
and recommendations. Minutes will be
submitted by the chair for approval by the committee and forwarded to the Chief
Operating Officer of the Hospital. Records will not include identifying
information about specific patients, family members, individuals requesting
case review or professional staff participating in the case review process. These records will be maintained in
accordance with hospital policy and applicable law governing the
confidentiality of records of medical review committees.
VII. Liability
The Hospital will take whatever
steps are necessary in order to provide liability protection for committee
members who do not have such protection by virtue of their status as members of
the professional staff.
VIII. Adoption
and Approval of Policies and Procedures
Policies and procedures of this
committee will be reviewed as deemed appropriate by the membership of the
committee. Proposed modifications of
approved policies or procedures will be submitted to the committee in writing
at least four weeks in advance of a regularly scheduled meeting. Following approval by the committee, they
will be forwarded to the Chief Operating Officer of the Hospital for review and
approval.
A4. POLICIES AND PROCEDURES: PEDIATRIC ETHICS
COMMITTEE
I.
Introduction
The Pediatric Ethics Committee (PEC) is a standing
sub-committee of the Hospital Ethics Committee.
The development of such a committee was recommended in federal
legislation (Child Abuse Amendments of l984: P.S. 98-457) dealing with
so-called “Baby Doe” cases, i.e. treatment abatement decisions regarding the
care of imperiled and/or handicapped newborns.
Other than in its case review function, all actions by the PEC must be
submitted for review and approval by its parent committee.
II.
Jurisdiction
The jurisdiction of the Pediatric Ethics Committee includes
clinical situations involving: (a) infants: children from birth to less than
two years of age; (b) children or "minors:" of age at least two
years, and less than eighteen years, unless otherwise "emancipated." Emancipated minors include individuals who are
self-supporting and/or not living at home; any minor who is pregnant or a
parent; or any minor who has been declared emancipated by a court. Minors may also be treated as "mature
minors” in some situations (rarely applies to a hospitalized minor); or, can be
“medically emancipated” in situations involving selected legally designated
medical disorders, e.g., sexually transmitted diseases, drug or alcohol abuse,
and the like.
III. Purpose
A.
Educational
To assist the Department of Pediatrics and other
departments and divisions which provide services to children in development of
appropriate educational programs in clinical ethics for all providers of care
to pediatric patients. Such programs
would have as their goal the fostering of a sensitivity and an ability to
respond appropriately to the ethical aspects of the care of patients and
families.
B.
Policy Review and Development
To assist the medical center and it’s component
institutions in the review and development of institutional policies relating
to the care of patients under the jurisdiction of the PEC.
C.
Case Review
To serve as a forum for discussion and analysis of complex
individual cases, particularly those involving withholding or withdrawal of
life-sustaining treatment; and for discussion and resolution of conflicts regarding
the ethical aspects of a patient’s care among members of the staff providing
care to the patient; or conflict between staff and patient or family members.
The committee will also undertake retrospective review and analysis of selected
cases as further described herein.
D.
Responding to Reports of Medical Neglect of
Disabled Infants
To serve as a mechanism by which cases can be reviewed in
which a report of “medical neglect” has been received by the Kansas Department
of Social and Rehabilitative Services (SRS) regarding an infant patient
hospitalized at KUMC. (See Medical Neglect of Disabled Infants; Policies and
Procedures; Kansas Dept. SRS and Child Abuse and Neglect Amendments of l984;
P.L. 98-457; Fed Reg 50, No. 72)
IV. Committee Structure
A.
Membership
Membership shall be representational of the pediatric care
community and shall be multidisciplinary.
The PEC will have at least twelve members. Physician members will
include: one from the Division of Neonatology; one from the Division of
Oncology/Hematology; one from the Division of Cardiology or Intensive Care; one
from the Ambulatory Division; and a Pediatric Resident. Nurse members will include one from Nursing
Administration; and one each from neonatal and pediatric nursing staffs. In shall also include as available the
following disciplines: social work, pastoral care, and clinical ethics. The committee will also identify and nominate
for appointment at least one community representative who is not an employee of
the
B.
Meetings
The committee will meet monthly in addition to any meetings
called for specific case review. Written
notice of regularly scheduled meetings and an agenda will be distributed one
week prior to the meeting. For all
regularly scheduled meetings, a quorum shall be six members. Meetings which do
not include review and discussion of specific cases will be open to anyone
expressing an interest in the subject being discussed.
C.
Minutes/Records
The chair (or designee) shall keep minutes of all
meetings. Minutes of the meetings will
be maintained by the Chair of the committee. In order to maintain the privacy
of patients and their families, patients will be identified by initials only.
The Chair will maintain a master list of all reviewed cases should more
complete identification of cases be necessary.
Copies of minutes will be distributed to all members for review and
approval and sent to the Clinical Ethics Committee. Any other request for
access to committee minutes or materials shall be considered by the Chair in
consultation with the Office of Legal Counsel.
D.
Administration
Administrative support for the committee will be provided
by the office of the Chair of the Department of Pediatrics. In addition to its minutes, the committee will prepare an annual
report of its activities which will be submitted to the Department of
Pediatrics and to the Hospital Ethics Committee.
V. Procedures for Case Review
A.
Prospective Case Review
Prospective review—review prior to the undertaking of a
particular course of action in the treatment of a patient—will be conducted by
the committee when indicated.
1.
Mandatory Case Review
Mandatory review will be undertaken in response to a report
received by the Kansas Department of Social and Rehabilitative Services,
Division of Child Protection which alleges “medical neglect” of a hospitalized
infant. Following its review of the
case, the Chair will report the findings and recommendations of the committee
to the designated hospital liaison to the Department of SRS.
2.
Recommended Case Review
Case review may be appropriate in situations in which a
proposed course of treatment of a patient involves the withholding or
withdrawal of life-sustaining medical or surgical treatment. [See section A11,
“Ethical Guidelines for Decision Making: Withholding or Withdrawing Life
Sustaining Treatment in the Care of the Pediatric Patient.”] Case review is
recommended in cases in which there is unresolved disagreement regarding the
ethical aspects of a proposed course of treatment involving a pediatric
patient, the parent(s)/guardian and/or the professional staff providing care to
the patient.
3.
Discretionary Case Review
Since one of the essential responsibilities of the
Committee is that of assisting patients, families and staff facing difficult
ethical decisions regarding health care, it is anticipated that most requests
for case review will arise in a voluntary context. Requests for review may be made by the
patient, the parent(s)/guardian, or any member of the professional staff
providing care to the patient.
B.
Review Procedure
The primary role of the committee in case review is to
provide advice and support to those who have primary responsibility as decision
makers, i.e. the patient, the parent(s)/guardian and the professional staff
providing care. The committee should not
be viewed as a decision-making body.
Even in situations in which the committee plays a role in identifying
ethical problems in proposed courses of treatment, the committee will not
recommend specific alternative treatments to be undertaken.
1.
Case Review Team
Upon notification to the Chair or designee of a case
requiring mandatory review or following receipt of a request for review, the
chair will appoint an ad hoc Case Review Team.
The team will consist of three to five members of the committee,
including at least one physician, and will reflect the multidisciplinary
composition of the committee.
2.
Involvement of the Attending Physician
The individual appointed to lead the case review team will
review the request to determine the nature of the case, the status of the
patient, the ethical question, concern or problem prompting the request and any
other information needed in order to determine if review is appropriate. If in the judgment of the leader of the case
review team the request is appropriate, he/she will contact the patient’s
attending physician to discuss the request, to request his/her participation
and to schedule the case review meeting.
If the patient’s attending feels that ethics case review is not
appropriate, this conflict will be referred to the Chief of the Medical Staff
for resolution. In the event of
persistent conflict, the Chief of the Medical Staff will assist in the orderly
transfer of responsibility to another attending physician.
3.
The Case Review Meeting
The case review meeting will be held within twenty-four
hours of the request for case review whenever possible. Any member of the hospital staff who is
directly involved in providing care to the patient or family may be invited to
attend the meeting. In appropriate
circumstances, the patient, his/her parent(s)/guardian and other members of the
patient’s family may also be allowed to be present for at least part of the
meeting if they desire. At the meeting
the leader of the team will instruct all non-members present regarding the
advisory role of the ethics committee; the intent of the committee to serve as
a supportive forum for those who have the primary decision-making
responsibility; and the need for strict confidentiality of all material
presented and discussed. The patient’s
attending physician and other health care providers will be asked to present
information to the review team regarding the history of the patient, the
present condition of the patient, the prognosis and any other material felt to
be relevant to the case review. The leader
will ask those involved, including the patient/family members if present, to
describe what specific ethical questions, problems or issues prompted the
request for case review.
Following
appropriate discussion of these and issues identified by committee members, the
team leader may convene a “closed” (members only) session in order to develop a
specific recommendation if appropriate.
Members of the Case Review Team may also decide before or after the case
review meeting that formal review of the case by the entire ethics committee is
appropriate. In this case the leader of
the review team will notify the Chair (or designee) who will convene on
emergency meeting of the entire committee as soon as possible.
4.
Recommendations
The results of the case review and any recommendations will
be communicated to the individual who requested the case review; the attending
physician; the patient/patient’s family and to appropriate members of the
staff. Following these discussions, and
upon request of the attending physician, the team leader will record the
results of the ethics case review in the patient’s medical record.
C.
Retrospective Case Review
In order to evaluate its utilization and effectiveness, the
Committee may undertake periodic retrospective review and analysis of selected
cases or categories of cases. Examples
would include: cases in which a “Do Not Resuscitate” (“DNR”) decision had been
made; cases in which decisions were made to withhold or withdraw a medical or
surgical intervention; cases in which the Committee had provided prospective
case review; and others as appropriate.
The results of this review would be used to identify educational needs;
to evaluate existing policies or procedures; and, to determine areas in which
existing policy requires modification or in which policies need to be
developed.
VI.
Adoption and Approval of Policies and Procedures
Policies and Procedures of the PEC will be reviewed
annually. Suggested modifications of
approved policies or procedures will be submitted to the Committee in writing
at least four weeks in advance of a regularly scheduled meeting. Following
approval by the Committee, they would be forwarded to the Hospital Ethics
Committee for review and then forwarded to the Chief Operating Officer of the
Hospital for approval.
A5. Patient Rights and
Organizational Ethics Committee
The goal of this committee is to help improve patient outcomes by respecting each patient’s rights and conducting business relationships with the patient and the public in an ethical manner.
Patients have a fundamental right to considerate care that safeguards their personal dignity and respects their cultural, psychosocial and spiritual values. These values often influence patients’ perceptions of care and illness. Understanding and respecting these values guide the provider in meeting the patient’s experience of and response to care. Thus, access, treatment, respect and conduct affect patient rights.
The standards address the following processes and activities:
1. Promoting consideration of patient values and preferences, include the decision to discontinue treatment;
2. Recognizing the hospital’s responsibilities under the law;
3. Informing patients of their responsibilities in the care process; and
4. Managing the hospital’s relationships with patients and the public in an ethical manner.
The multidisciplinary membership of this committee includes but is not limited to members from the following departments: Patient Relations, Medicine, Nursing, Social Work, Allied Health Sciences, Interpreter Services, Pastoral Care, Quality Improvement and Risk Management.
At least one member of the Hospital Ethics Committee and one member of the Pediatric Ethics Committee will serve on this committee.
I. Introduction
This statement seeks to provide
guidance to members of the hospital staff and to promote increased support and
recognition of the concept of the autonomy or right of self-determination of
the patients of this
An advance directive is a
document allowing a person to give directions about future health care, or to
designate who should make decisions regarding care if he/she should lose the
capacity to do so. There are at present two types of documents used for this
purpose. One type is used to provide health care providers and institutions
directives regarding treatments that a person wishes to receive or forego should
he/she lose decision-making capacity, such as a "living will". The
other type allows a person to designate a "proxy" or
"surrogate" who would be authorized to make treatment decisions on
behalf of the individual should he/she be unable to make such decisions. These
two types of directives may also be incorporated into a single form. Such a
form is available through Hospital Administration, Department of Social
Services, or the committee.
II. Treatment
Directives and Living Wills
Any individual with the capacity
to make decisions concerning health care can prepare a document providing
directions about treatments he/she might wish to receive or to forego in the
event of his/her future incapacity to make such decisions. Such a document
might indicate general treatment preferences, include a list of specific
treatments, contain statements about palliative care, appoint another person to
serve as "proxy" or surrogate (see following section: Proxy
Directives) and might include a variety of other provisions. Individuals
preparing such documents must inform appropriate health care professionals,
family members, friends, and health care institutions to which they are
admitted of the existence and contents of any such directive. Such a directive
should also be reviewed and revised regularly or as required. The individual is
also free to revoke the directive at any time.
The State of
Treatment directives or Living
Wills which are prepared by individuals who are not "qualified
patients" as defined by the Kansas Natural Death Act, or documents which
are not executed according to the provisions of this law, are not legally
binding on health care providers or institutions. However, such a document may
well provide important insight and helpful guidance to health care providers
and family members or surrogate decision-makers in the event that the patient
loses the capacity to participate in decision making. Knowledge of the patient's
values, preferences and wishes can be essential in evaluating the ethical
aspects of treatment decisions.
It is also important for health
care providers to understand that completion of a directive does not in itself
change the interests or status of a patient. For example, providers should not
make assumptions about treatment preferences based on the mere existence of a
Living Will, but rather see the directive as an instrument by which an
individual seeks to provide direction regarding certain specific treatment
options.
It should also be understood that a competent adult patient need not utilize this mechanism in order to have his/her present directives regarding utilization of life sustaining treatments respected. Competent adults clearly have the legal and ethical right to forego any or all life sustaining procedures.
III. Proxy Directives and Durable Power of Attorney
Alternative means for providing
advance directives are instruments that allow an individual to appoint another
person to make his/her health care decisions in the event of the loss of
capacity to do so. Any individual can prepare a written statement authorizing
another person to act as their proxy or surrogate. Such a designation can be
very helpful to health care providers since it identifies for them the
appropriate surrogate decision maker. This surrogate can then participate on
behalf of the patient in addressing the ethical aspects of decision making and
in making decisions regarding utilization of life-sustaining treatments in persons
who are no longer capable of participating in the decision making process.
In the State of
IV. Implementation
An essential aspect of
implementation of this policy will be the willingness of health care providers
and the institution to make information regarding advance directives available
to patients. In particular, physicians working with individuals facing
life-threatening, chronic, and/or terminal illness have the responsibility of
encouraging patients to make plans about treatment in advance of a crisis and
to engage in an on-going dialogue regarding mechanisms by which their values,
preferences, and directives might be respected in the event of their loss of
capacity to participate in decision making. It will also be essential that the
information about advance directives be incorporated into in-service and other
educational programs and into patient education programs and materials.
It will also be necessary for each department and division to develop procedures necessary to allow these advance directive mechanisms to be effective. Admission procedures will need to be developed for ascertaining if the patient has completed an advance directive document. Hospital and Foundation medical record personnel will need to develop mechanisms for incorporation of such documents into the records of both Hospital and Foundation patients.
The utilization of
cardiopulmonary resuscitation (CPR) has become routine in almost all hospitals
in the
These guidelines recommend the
procedures to be followed in making and implementing a decision to withhold
utilization of these emergency resuscitation techniques. If a patient has
included directives regarding such treatment as part of an "advance
directive" such as a Living Will, the provisions of that declaration and
related legislation will apply. (See section A6, “Advance Directives.”)
II. Definitions
"Competent Adult
Patient" - patient of at least eighteen years of age who is determined to
have the capacity to make his/her own treatment decisions, i.e. the capacity to
understand relevant information, reflect on it in accordance with his/her
values, and communicate with caregivers.
"Incompetent Adult
Patient" - patient who has been legally declared incompetent or a patient
who is determined to have an irreversible lack of decision making capacity.
"Pediatric Patient" -
patient of less that eighteen years who is not otherwise legally emancipated.
"Cardiopulmonary Resuscitation" - emergency treatment of acute failure of cardiac or respiratory systems (cardiac and/or respiratory "arrest") usually including at least one of the following procedures: chest compressions ("closed chest" cardiac massage), intubation/ventilation, and cardiac defibrillation.
Evaluation and Discussion - A DNR order should be
considered in any clinical situation in which resuscitation would likely be
futile or in which the utilization of such treatment would be inappropriate in
view of the patient's diagnosis and/or prognosis. The patient's attending
physician has the primary responsibility to evaluate the patient and to
facilitate discussion with patient and/or family in situations in which such an
order is judged to be appropriate. Nursing staff can also play an important role
in this evaluation process and in supporting discussion with patient and/or
family.
Identification of Decision-maker - If the patient is a
competent adult, discussion and decision-making regarding a DNR order need only
involve the patient. A DNR order for such a patient should be written only with
his/her informed consent. If the patient has been adjudged to be mentally
incompetent by a court, the primary decision-maker is the patient's guardian.
If the patient is determined to lack the capacity to participate in the
decision-making process, the physician should determine if the patient had
previously indicated a choice of the appropriate individual to act as
decision-maker or seek to identify a member of the patient's family who will
act as a surrogate decision-maker.
Making the Decision - The decision about the DNR order
should be made in accordance with the expressed wishes of the patient or in
accordance with the explicit directives of the patient, i.e. "advance
directives" or in accordance with the known preferences and values of the
patient. Lacking any of the above, the decision should be based on a careful
and reasoned consideration of the patient's interests.
Pediatric Patient - Decision-making regarding utilization
of CPR for pediatric patients should be made according to the previously
approved guidelines. (See section A11, "Ethical Guidelines for
Decision-making: Foregoing Life Sustaining Treatment in the Care of the
Pediatric Patient.")
Conflict/Disagreement - Since decision-making regarding
DNR orders will frequently involve shared responsibility, there may be
situations in which there is disagreement among health care providers or
between providers and surrogate decision makers regarding the appropriateness
of a DNR order. Such disagreements should be discussed and examined thoroughly
and efforts made to achieve agreement. If they cannot be resolved, additional
consultation and/or referral to the Ethics Committee should be considered.
All orders not to resuscitate must be written or signed by
the patient's attending physician on the Physician's Order Sheet. It is
imperative that caregivers and patients/families realize that resuscitative
measures (calling a "Code Blue" and initiation of CPR) will be
performed routinely on all patients for whom there is not a written DNR order.
In addition to the order "Do Not Resuscitate
(DNR)", the physician may wish to modify the order by including
instructions regarding specific resuscitative interventions.
Verbal DNR orders can be received only by a licensed
physician and must be witnessed. Verbal or telephone orders must be
countersigned within 12 hours by the attending physician who gave the order.
In addition to the order itself, physicians must make
certain that the patient's medical record provides adequate documentation of
the evaluation, discussion and decision-making process. A specific entry
attendant to the order should be considered which includes: a short description
of the patient's condition and prognosis, reference to any consultations which
corroborate a DNR order, reference to discussions concerning the order with the
patient, guardian, and/or family.
DNR orders should be reviewed and renewed at regular
intervals. Since the condition of a critically ill, hospitalized patient may
change, this interval should not exceed one week. At each renewal, the medical
staff members should critically re-evaluate the basis for the DNR order,
consult again with the patient or surrogate decision-maker, and rewrite the
order if appropriate. Caregivers and patients/surrogates should also be
informed that a decision to forego resuscitative treatment can be revoked at
any time by the patient.
A. Level of Care.
Although a DNR order may be part of an overall treatment
plan which involves reduction of the level or intensity of care the patient is
receiving, caregivers, patients and families must understand that the order not
to resuscitate has no implications for any other treatment decisions. Patients
with DNR orders on their charts may remain candidates for all vigorous care,
including intensive levels of care.
B. Terminal Illness.
It should also be understood that a candidate for a DNR
order need not be suffering from a terminal illness. Many chronically ill,
debilitated or elderly patients may wish to forego this particular form of
life-sustaining treatment.
C. Surgery, Anesthesia, and Invasive Procedures.
When a patient with a DNR order is to undergo surgery,
receive an anesthetic agent and/or be subject to an invasive procedure that may
be associated with risk to cardio-pulmonary function, it is the obligation of
the physician performing such procedures to discuss the DNR status with the
patient or surrogate decision-maker as part of the consent process. (See
section A9, "Honoring DNR Orders During Invasive Procedures.")
D. Communication and Notification.
Consideration must be given to mechanisms by which various
departments and divisions will establish appropriate procedures to insure
adequate communication and notification of the existence of a DNR order when
patients are transported, sent off the nursing unit for procedures and/or
treatment, transferred to other institutions, and the like.
A8. PRE-ADMISSION AND POST-DISCHARGE DNR ORDERS
In cooperation with Kansas City
Area Emergency Medical Personnel the Ethics Committee Consortium of the
Since this is a standardized form, providers must use the approved form: "PRE-HOSPITAL DNR REQUEST FORM: An Advanced Request to Limit the Scope of Emergency Medical Care" No. 5587. These forms are available through Hospital Administration, Department of Social Services, or the Committee.
A9. HONORING DNR ORDERS DURING INVASIVE PROCEDURES
Health care facilities
accredited by the Joint Commission on Accreditation of Healthcare Organizations
(JCAHO) have been required to have written policies and procedures allowing
patients to forgo cardio-pulmonary resuscitation, so called "Do Not
Resuscitate" (DNR) policies, since January 1988. However, questions have
persisted about honoring DNR orders when a patient undergoes an operative or
invasive procedure. Often in the past, DNR orders were disregarded under such
circumstances. However, this approach is clearly incompatible with the goals
and principles of the Patient Self-Determination Act of 1990. Patients' legal
and ethical rights to direct the course of their health care include the right
to refuse resuscitative procedures.
Most invasive procedures
undertaken on patients with DNR orders are of limited duration and directed
toward specific objectives; therefore, disregarding DNR orders during invasive
procedures has been common. The rationale behind DNR orders acknowledges that
the underlying disease will be allowed to take its course undeterred by medical
intervention. Many anesthesiologists, surgeons, and physicians undertaking
invasive procedures have felt a responsibility to treat any cardio-pulmonary
arrest their treatment may precipitate. When a patient with a standing DNR
order has an arrest during the course of an invasive procedure, these
professionals often believe that their failure to treat the arrest is
responsible for the death of the patient and that they will be held accountable
for the death. Quality assurance and related policies must be adapted to
reflect that when personnel undertake an invasive procedure on a patient with a
DNR order, they are not responsible for the death of such a patient if death
results from withholding resuscitation.
It is also the case that many
procedures undertaken in operating rooms can be classified as forms of
resuscitation - such as, intubation, the use of ventilators, and drugs to
control heart rate and blood pressure. An arrest in the operating room or
during the course of an invasive procedure may result from the use of
anesthetic agents, the procedure itself, the underlying disease, or a
combination of factors. The majority of these arrests can be promptly treated
with no long lasting or residual effects.
It is essential that a DNR order
be reviewed and discussed prior to an invasive procedure. A critical aspect of
this review is consideration of the patient's rationale for the DNR order. For
example, if the patient is requesting a DNR order on the basis of an
unacceptable quality of life, suspension of such an order during the invasive
procedure may be inappropriate. On the other hand, if the refusal is based on
consideration of the burdensomeness of resuscitative measures, suspension of
the order may be appropriate since the burdensomeness of the procedure may be
considerably reduced by anesthesia. Given the higher success rate of
resuscitation undertaken during invasive procedures, especially when anesthesia
is the presumed cause, a DNR order based on the futility of such resuscitation
or fear of long term ventilator dependence might also be reconsidered.
1.These guidelines refer to
cardiac and/or respiratory arrest which occurs inadvertently during an invasive
procedure. Correcting this condition may require closed cardiac compression,
artificial respiration, countershock and other resuscitative measures.
2.A cardiac and/or respiratory
arrest is a condition separate from that requiring the invasive procedure.
Patients/surrogates who consent to anesthesia, surgery, or other invasive
procedures may not necessarily consent to treatment of such an arrest.
3.For purposes of these
guidelines an invasive procedures should be understood as one during which
cardiac and/or respiratory arrest is a foreseeable risk. Obviously this is a
risk for procedures undertaken in the operating room, particularly those
involving the use of general anesthesia. However, it is also a risk for many
procedures, such as those involving the use of anesthetic techniques like
"conscious sedation," whether undertaken in the operating room or
not. It may also be assumed that most procedures for which written informed
consent is required are "invasive" in this sense. If the individual
undertaking a procedure is unable to determine whether or not
cardio-respiratory arrest is a foreseeable risk of the procedure, prior
discussion regarding appropriate interpretation of the patient's DNR status is
recommended.
4.Treatment for an arrest under
these circumstances can, like other treatments, be accepted or refused by
patients with capacity or by the appropriate surrogates of patients without
decisional capacity. Health care providers have a responsibility to honor such
acceptances or refusals.
5.Before a patient on DNR status
undergoes an invasive intervention, at least one physician (surgeon or
anesthesiologist, physician performing the invasive procedure, or the patient's
attending physician) must engage in discussion with the patient or surrogate
regarding the handling of the DNR order. Discussion needs to include the
following elements:
- the original rationale for the
DNR order as previously documented in the patient's medical record;
- information about the
likelihood of requiring resuscitative measures;
- a brief description of
standard resuscitative measures;
- the chance of successful
resuscitation; and,
- possible outcomes with and
without resuscitation.
Salient features of this
discussion must be documented in a brief note in the progress notes section of
the medical record. Either a DNR order or an order indicating that the DNR
order is suspended -including the period of time for which the order should be
suspended - must be entered on the pre-operative or pre-procedure order form.
6.If the patient wants the DNR
order suspended during an operative or invasive procedure, the terms of the
suspension must be discussed. The duration of the suspension of the DNR order
may include the period during which the patient is in the operating room or
undergoing the invasive procedure and the time when the patient is recovering
from the procedure, e.g., confinement in a recovery unit. Some patients may
wish to have their DNR order suspended for only part of this period. The
discussion should also include procedures that may be necessary during this
period such as short term need for ventilatory support.
7.Communication regarding plans
to honor a DNR order in this situation must take place among all staff involved
in the procedure. A patient's/surrogate's decision to refuse resuscitation
during an invasive procedure is compatible with maximal therapeutic efforts.
This decision does not imply limits on any other forms of care, such as
intensive care.
8.A physician who is unwilling to honor a patient's DNR decision while undertaking an invasive procedure, must notify the patient's attending physician so that arrangements can be made for identifying an alternative provider of care.
A10. ETHICAL GUIDELINES FOR DECISION MAKING:
WITHHOLDING OR WITHDRAWING LIFE SUSTAINING TREATMENT (ADULTS)
I. Introduction
Increasing technological
capacity to sustain life has created the need for critical examination of when
such treatments are and are not appropriate. The traditional assumption that
health care professionals have an obligation to prolong life provides
inadequate guidance since this obligation often conflicts with the obligation
to relieve suffering and to not "prolong dying". It is also
increasingly recognized that patients and families have an essential role to
play in health care decision making. For example, the concept of informed
consent includes the right of the patient to refuse treatment, even life
sustaining treatments. Yet the decision to forego life sustaining treatment -
particularly a decision to withdraw a treatment that may be sustaining the
patient's life - poses significant psychological difficulties for providers,
patients and families. These guidelines have been developed to provide support
and guidance for those faced with the responsibility of making these hard
choices. (For decisions involving pediatric patients, see section A 11,
"Ethical Guidelines for Decision-making: Withholding or Withdrawing Life
Sustaining Treatment in the Care of the Pediatric Patient.")
II. Definitions
Adult Patient - Any patient who
can provide legally valid consent, includes most patients greater than 18 years
of age and "emancipated minors".
Comfort Care - A range of
interventions intended to provide relief of pain and/or suffering, control
symptoms, reduce anxiety and provide comprehensive physical, psychological and
spiritual support to patients. Such care is often referred to as
"palliative" care - care which serves to relieve or alleviate without
attempting to cure.
Competence - Legal status of
adults who have not been found and declared incompetent by a court.
Decisional Capacity - Term used
to reflect the ability of a patient to make a specific decision, i.e. the
ability to understand the relevant information, to reflect on it in a manner
consistent with their own life goals and values, and to communicate his/her
wishes to providers.
Durable Power of Attorney for
Health Care -Legal mechanism by which any adult can delegate the legal
authority to make health care decisions. [See section "Advance
Directives".]
Foregoing - Refers to a decision
to withhold an intervention or to withdraw a treatment already begun. It is
assumed that in any situation in which there is significant uncertainty about
the appropriateness of foregoing treatment, it will be administered on the
basis of a time-limited trial since it can be ethically withdrawn should it
prove futile or not in the patient's best interests.
Guardian - Individual appointed
by a court to act on behalf of another who has become a ward of the court
usually as the result of a finding of legal incompetence.
Life Sustaining Treatment -
Interventions which are judged likely to be effective in prolonging the life of
a patient or which are being utilized to sustain the life of a patient.
Living Will - Document which can
be completed by any adult to provide advance directives regarding treatment in
the event that the individual became unable to participate in decision-making.
Surrogate - When a patient lacks
decision-making capacity. he/she should participate in the treatment decision
as fully as possible; however, another individual - the surrogate
decision-maker must work with the providers to make decisions. The appropriate
surrogate may be: 1) delegated by the patient through an advance directive
instrument, 2) designated by a court (eg. a guardian), or 3) the adult who is
most involved with the patient and most knowledgeable about his/her personal
values and preferences. Providers should work closely with the patient's
friends and relatives to identify the appropriate surrogate. If agreement
cannot be reached regarding the selection of a surrogate, the provider should
seek appointment of a guardian.
Terminal Illness - An illness which because of its nature can be expected to cause the patient to die; usually used to refer to an irreversible and unrelenting condition for which there is no known effective treatment or cure.
Health care has traditionally
been based on the assumption that life is an important and essential good and
that it should be preserved whenever possible. Prevention of premature or
avoidable death is seen as part of the goal of health care. However, the
principle or duty to prolong/preserve life does not provide an adequate basis
for making decisions about when treatments may be withheld or withdrawn.
Patients have the right to make
decisions about the course of their life for themselves. This is often called
the patient's right of self-determination or autonomy. Important aspects of
autonomy include: the concept of informed consent, the presumption that
patients have the capacity to make decisions, the presumption that patients
have a right to delegate decision-making authority, the patient's right to be
adequately informed, and the right to authorize or refuse any medical
treatment.
B. The principle of "do no harm" (non-maleficence)
One of the most established
principles of health care ethics directs providers to avoid or minimize harm to
patients. Providers are obligated to carefully weigh the burdens and risks
associated with any proposed treatment. When treatment no longer provides
reasonable benefits or becomes unacceptably burdensome from the patient's
perspective, it should be stopped.
The obligation to promote the
good of the patient is basic. Attempting to extend life usually promotes the
good of the patient. However, the patient's life may, for example, be full of
pain and suffering and the patient may prefer to forego the treatment even
though it means an earlier death. The obligation to promote the patient's good
involves identifying the possible benefits from the patient's perspective. If
the patient or surrogate judges that continuing to provide a treatment offers
inadequate benefits, it should be stopped.
Considerations of procedural
justice or fairness require that decisions about withholding and withdrawing
treatment should involve shared decision-making by patients/surrogates and
providers. The magnitude of such decisions requires that they should reflect
the ideals of due process for decision-making including appropriate respect for
all parties involved in the decision, open and sustained dialogue, careful
consideration of all options, appropriate consultation and/or review,
mechanisms for addressing differences of opinion and the like.
E. The principle of equity (distributive justice)
Serious problems regarding the
just distribution of health care resources exist in the
A. A patient's decision to
forego such treatment does not constitute a decision to commit suicide. A
decision to withhold or withdraw such treatment from a patient does not involve
"killing", "causing a person to die", or "active
euthanasia".
B. Health care providers who
have a conscientious objection to a patient's decision to forego a
life-sustaining treatment should, if necessary, inform the patient or surrogate
of their position, and must arrange for the orderly transfer of responsibility
for care to another provider.
C. Any life-sustaining treatment
may be withheld or withdrawn. If doubt exists regarding the possible benefits
of a treatment, time-limited trials of treatment should usually be undertaken.
D. Treatments involving
provision of life-prolonging artificial nutrition and/or hydration may be
withheld or withdrawn under appropriate circumstances.
E. When a decision to forego a
particular life-sustaining treatment or treatments is made, both health care
providers and the institution have a continuing obligation to provide a
comprehensive range of supportive care and treatment including consideration of
alternative methods of care such as hospice programs.
F. Providers usually have the
obligation to respect the requests of patients/surrogates to be provided or to
continue to receive a life-prolonging treatment. However, providers are not
obligated to provide treatments that are clearly futile (meaning that they will
not produce the physiologic result desired by the patient or surrogate),
treatments that are felt to have a greater potential for harm than for benefit,
treatments that are considered medically inappropriate by an appropriate
professional organization, and treatments that cannot reasonably be provided by
virtue of economic or institutional constraints.
These guidelines presume that
the ideal model for making such decisions is one in which the responsibility is
shared by providers and patients or surrogates. It is assumed that all members
of the health care team and the patient or surrogate must have the opportunity
to participate actively in all such decisions. This model also presumes that
such decisions will not be implemented unless there is consensus among those
responsible regarding the appropriateness of the decision. When there are conflicting
judgments regarding the appropriateness of such a decision, mechanisms must be
available to address and, hopefully, resolve such conflict.
B. Role of the Health Care Provider(s)
Providers have the
responsibility for ensuring that comprehensive and accurate evaluation of the
patient's condition has taken place, that the entire range of treatment options
has been carefully considered, that appropriate therapeutic trials have been
considered and conducted where appropriate, and that the patient or surrogate
are informed and involved in the process.
1. Patient With Decisional Capacity
A decision to forego a potentially life-sustaining
intervention in the case of a patient with decisional capacity requires the
informed consent of the patient. Adults with decisional capacity, even when not
terminally ill, have the right to refuse to authorize any medical intervention
even interventions that are potentially life prolonging.
2. Patient Who Has Executed an Advance Directive
Where a patient without decisional capacity has previously
executed a directive (Living Will) that a life sustaining treatment be withheld
or withdrawn and/or has appointed a surrogate to make such decisions (Durable
Power of Attorney), such advance directives and decisions should be respected.
3. Patient Without Decisional Capacity Who Has Not
Executed an Advance Directive
Where possible, providers of such patients should work
with the patient's family and appropriate others to identify an appropriate
surrogate decision-maker. If the patient has been declared legally incompetent,
the surrogate would normally be the court appointed guardian. If not, the
appropriate surrogate is that individual who is most available, involved and
concerned about the patient, most knowledgeable about the patient's values and
preferences, and most willing to apply the patient's values to making the
decision.
Appropriate
criteria for use in surrogate decision-making are:
a. Substituted judgment decisions: If the providers
and surrogate agree that foregoing life sustaining treatment is clearly in
accord with the patient's values and previously expressed preferences, that
plan of care should be pursued.
b. Best interest decisions: If the providers and
surrogate are not certain that foregoing life sustaining treatment is in accord
with the patient's values and preferences, then decisions should be based on
what is in that patient's best interest. Another way of expressing "best
interest" criteria is to choose so as to promote the patient's interests
as they would be conceived by a reasonable person in the patient's
circumstances.
The role of a court appointed
guardian or a surrogate appointed by the patient (Durable Power of Attorney) is
to substitute for the patient in the decision-making process. If the surrogate
has not been empowered by a court or the patient, the role of the surrogate is
to work with the providers to determine the appropriate course of action.
One of the primary roles of the Ethics Committee is that of providing a forum in which questions and/or disagreements regarding decisions to forego a life sustaining treatment can be discussed and resolved. Committee case review will only be undertaken in response to a formal request by a professional directly involved in the care of the patient, by a guardian or surrogate, or by the patient. Such review should be strongly considered in cases in which an appropriate surrogate cannot be identified for a patient without decisional capacity and in cases in which there is persistent disagreement among those responsible for making the decision.
All discussions regarding and
decisions to withhold or withdraw a life sustaining treatment should be
documented in the medical record. Documentation should include both orders
necessary to implement such decisions and appropriate documentation of the
rationale for and the process by which the decision was made.
All parties to decisions to forego a life sustaining treatment should be aware that such decisions can be changed at any time if desired by the patient (surrogate) or if such a change is felt to be required in view of a reassessment of or change in the condition of the patient.
A11. ETHICAL GUIDELINES FOR DECISIONMAKING:
WITHHOLDING OR WITHDRAWING LIFE SUSTAINING TREATMENT (CHILDREN)
These guidelines have been
developed to provide the health care providers of this institution, their child
patients and the parents of those patients with support and guidance in making
decisions to withhold or withdraw a life sustaining treatment. They also
represent the dedication of the institution to ensure that all such decisions
reflect a clear commitment to serve the needs and best interests of the
pediatric patient; that they are made carefully and in an informed manner; and,
that they involve the participation of health care providers, parents and the
child (to the extent of his/her capacity) in the decision-making process. Every
effort should be made to obtain the informed permission of the parent(s) and to
solicit the assent of the child patient (where feasible) prior to any decision
to forego a life sustaining treatment.
"Pediatric patient" is
used to refer to patients who are not empowered to provide authorization
(informed consent) to their own medical care. With exceptions (e.g.
"emancipated" or "mature" minors) such patients are those
who are less than 18 years of age.
"Life sustaining
treatments" are those interventions which are judged likely to be
effective in prolonging the life of the patient.
"Foregoing" refers to
any decision to withhold an intervention or to withdraw a treatment already
begun. Clearly in situations involving significant uncertainty, treatment of
potential benefit should be started since such treatment can be ethically
withdrawn should it prove futile or not in the patient's interests.
"Parental permission"
includes all the basic elements of the concept of informed consent: the duty to
inform parents of the nature of the child's condition; the duty to disclose the
risks and benefits of the various alternative treatments; and the obligation to
obtain, free of coercion or manipulation, their permission to proceed with the
proposed course of action, i.e. in this case, the foregoing of a life
sustaining treatment.
"Assent of the child" includes the following elements: the obligation to assist the child in developing an age appropriate awareness of the nature of his/her condition; the obligation to disclose to the child the proposal to forego a treatment and what he/she is likely to experience in foregoing the treatment; and the responsibility of soliciting the child's expression of willingness to forego the treatment. Assent in this context would rarely be solicited in children less than seven years. The dissent of an older child or adolescent to a proposal to forego must be given appropriate respect and consideration including formal procedures to resolve conflict and/or referral to the Pediatric Ethics Committee.
III. Presumptions
- That decisions to forego a
life sustaining treatment would be considered only after comprehensive
evaluation of the patient and all appropriate therapeutic trials.
- That parents as the legal
guardians of the child (unless otherwise specified by law) are entitled and
obligated to actively participate in the decision-making process.
- That health care providers are
legally and ethically obligated to act in the best interests of the child
patient.
- That children as patients
should be allowed to participate to the extent of their capacity in decisions
being made regarding their health care.
- That decisions to forego a
life sustaining treatment do not entail or involve actions intended to end the
life of the child (active euthanasia or "mercy killing").
- That pediatric patients from
whom a life sustaining treatment has been withheld or withdrawn will continue
to receive competent and compassionate health care including a wide range of supportive
care services such as emotional and physical comforting; management of pain and
other discomforts; and other palliative measures as appropriate.
Although orders to forego life
sustaining treatment must ultimately be written by the patient's attending
physician, these decisions require sustained and effective communication among
all of those providing care to the child. The process by which such decisions
are made can be initiated by any professional directly involved in the care of
the patient and begins with communication between that individual and the
attending physician. Providers have the responsibility for ensuring that
comprehensive and accurate evaluation of the child's condition has taken place;
that the entire range of treatment options has been carefully considered; that
appropriate therapeutic trials have been considered and conducted where
appropriate; and that the parents and child are appropriately informed and
involved in the decision-making process.
As legal guardians, parents have
a fundamental interest and obligation to share in the decision-making process.
Parents must be informed and provided support necessary for them to actively
participate in this process. Parents may initiate this discussion with the
child's health care provider(s) and/or request consideration of foregoing a
life sustaining treatment. If the parent(s)/guardian concur with the evaluation
of the child's condition and request or give permission to the foregoing of the
treatment, it may be withheld or discontinued. After allowing sufficient time
for deliberation and consultation, if the parents are unwilling to give
permission to a recommendation that a treatment to be withheld or withdrawn,
the attending physician should request formal review of the case by the
Pediatric Ethics Committee. Parent(s)/Guardian may also request review by the
committee in cases in which they feel that a treatment recommended or being
provided to their child should be withheld or withdrawn.
The patient should be encouraged
and allowed to participate in this decision/making process to the extent of
his/her capacity. Providers should solicit the assent of the child to any
proposal to forego a life sustaining treatment. Persistent disagreement between
the child and his/her parent(s)/ guardian regarding such a decision should
prompt appropriate conflict resolution measures and/or review by the Pediatric
Ethics Committee.
One of the primary roles of the
committee is that of providing a forum in which questions and/or disagreements
regarding decisions to forego a life sustaining treatment can be discussed and
resolved. Committee case review will only be undertaken in response to a formal
request by a professional directly involved in the care of the patient,
parent(s)/guardian or the patient. Requests for case review with the committee
should be communicated directly to the committee chair. The committee will make
every effort to provide support for those with the responsibility of making
these decisions and for ensuring that conflicts are appropriately addressed and
resolved. In the unlikely event that such conflicts could not be resolved, the
committee would recommend to the hospital and the involved parties that
appropriate legal mechanisms by sought.
All discussions regarding and
decisions to withhold or withdraw a life sustaining treatment should be documented
in the medical record including both orders necessary to implement such
decisions and appropriate documentation of the rationale for and the process by
which the decision was made.
All parties to decisions to
forego a life sustaining treatment should be aware that such decisions can be
changed at any time if such a change is felt to be required in view of a
reassessment of or change in the condition of the child. The judgment that such
a change is necessary should be communicated to the attending physician who
would then facilitate appropriate discussion and revaluation of the situation.
A12. GUIDELINES FOR WITHHOLDING OR WITHDRAWING
LIFE-SUSTAINING MECHANICAL VENTILATION
The process by which decisions
should be made to use or not to use a life-sustaining medical technology
involves consideration of a wide range of issues. This statement is intended to
serve as an outline for that process when the treatment under consideration is
mechanical ventilation, i.e. use of a respirator. The basic ethical values
involved are those of patient well-being and patient self-determination.
Ethical duties, obligations, rights and responsibilities of the health care
providers, patients and families are based on these values. Important
considerations include: Is the use of the treatment likely to promote the
well-being of the patient? What are the anticipated benefits and burdens of
treatment from the patient’s perspective? Do the burdens outweigh benefits? How
is the patient's right of self-determination to be respected?
Other considerations deal with
the decision-making process itself and include:
A. The obligation of health care
providers to provide critical on-going evaluation of patients, especially in
terms of the chronic use of life sustaining treatments, and to initiate and
facilitate discussion with the patient (and family and/or others if the patient
wants them involved) regarding the use or continued use of such treatments.
B. Identification of the key
decision-maker, i.e. assessing the decision-making capacity of the patient
and/or identification of a surrogate. (If the patient is a minor, see
"Ethical Guidelines for Decision-making: Foregoing Life Sustaining
Treatment in the Care of the Pediatric Patient".) A surrogate may have
been designated by the patient (see policy on "Advance Directives"),
appointed by a court ("guardian"), or may need to be identified from
amongst adult family members or concerned friends.
C. Making the decision: 1) the roles of providers, patients and surrogates; 2) the criteria for making decisions when the patient lacks the capacity to decide, i.e. the prior expressed wishes of the patient (see section A "Advance Directives"), the known preferences and values of the patient (sometimes called "substituted judgment") or, the "best interests" of the patient as they would probably be conceived by a reasonable person in the patient's circumstances, 3) documentation of the basis for the decision, and 4) implementation of the decision into the total care plan for the patient.
Health care providers often find
it easier to make a decision to withhold a life-sustaining treatment or to
allow a patient to forego its use than to discontinue or withdraw the same
life-supporting treatment. This is particularly true in the case of the use of
respirators. However, from an ethical point of view it is clear that there is
no ethical requirement to continue a treatment merely because it has been
started. To continue to impose a treatment against the wishes of patient or
surrogate when it is felt to be more burdensome than beneficial is clearly
wrong. There is actually strong reason to prefer withdrawal in spite of the
psychological difficulties it poses for patient and provider since it allows
for time-limited trials of treatments to establish the benefits and burdens of
the treatment. A decision to withhold or forego a treatment cannot be made with
the same degree of certainty. When there is doubt about the potential benefits
of providing respiratory support, it should be started preferably on the basis
of a time-limited trial.
In many illnesses - egs.
progressive neuromuscular diseases, cystic fibrosis, chronic obstructive
pulmonary disease - the natural history of the disease process includes
predictable respiratory insufficiency and eventual failure. Health care
providers have the obligation to prepare patients for this phase of their
illnesses, especially in terms of initiating and facilitating a dialogue about
the possible role of chronic ventilatory support. This dialogue will allow
patients to assess the likely benefits and burdens of such treatment and to
provide advance directives regarding such support prior to the onset of
respiratory failure.
In emergency settings
appropriate time for adequate analysis of the situation as well as important
information about the patient's medical condition are frequently unavailable.
In the context of acute respiratory failure it is rarely possible to reliably
ascertain the patient's wishes regarding the use of ventilatory support.
Therefore, in an emergency situation, it is almost always the case that
ventilatory support should be initiated. Once the patient's condition has
stabilized, the appropriateness of continued use of the respirator should be
carefully reviewed.
In order to facilitate
discussion of the continued use of a respirator, to ascertain the patient's
preferences, and to assess the decision-making capacity of the patient, it is
imperative that providers utilize all available aids to communicate with a
patient who is on a respirator and usually unable to speak. Providers should
consider: consultations with communication specialists, use of written
communication, use of communication boards, or use of electronic devices to
vocalize.
Under most circumstances it is appropriate to attempt to wean patients from ventilatory support in order to evaluate the extent to which they are dependent on such support. If the health care provider believes on the basis of such trials that weaning may prove successful, it should be attempted. However, if a decision to discontinue respirator use has been made such trials are not ethically required.
If it is established that a patient has become permanently dependent on ventilatory support, every effort should be made to discuss alternatives to its discontinuation. Since many of these alternatives will involve careful assessment of resources available to the patient following discharge from the acute care setting, consultation with Social Services should be sought. Considerations to be discussed would include at least the following: methods of decreasing the discomfort and burdens of chronic respirator use, alternative forms of ventilatory support, development of home-based treatment plan, and methods to increase mobility such as the use of a portable respirator.
VIII. Care of the Patient Foregoing or Discontinuing
Life-Sustaining Ventilatory Support
Patients with significant respiratory insufficiency who forego or discontinue ventilatory support will often experience significant degrees of discomfort and difficulty breathing. Often they will experience frightening "air hunger". Maximal supportive care to insure comfort must be provided to such patients including any or all of the following: supplemental oxygen, adequate suctioning, intermittent assisted ventilation, and sedation. If relief of extreme discomfort requires the use of sedation which decreases respiratory effort and/or renders the patient unconscious, it is ethically acceptable to do so with the consent of the patient or surrogate. Provisions should also be made to provide company to such patients. If desired by the patient, family and friends should be allowed maximal access to the patient. They should also be provided the emotional support they may need to participate in this process. If it is anticipated that a patient's death from respiratory failure will occur shortly after discontinuation of the respirator, it is recommended that the attending physician discontinue the respirator and remain at the bedside. If he/she is unable to do so, this important responsibility can be delegated to an appropriately trained member of the professional staff attending the patient.
IX. Care for Bereaved Family and Friends
Adequate consideration should be given to mechanisms to provide support to bereaved members of the patient's family or friends. Decisions to forego or discontinue ventilatory support are often associated with feelings of significant doubt and guilt in addition to those associated with the anticipated grieving process.
A13. CARE OF PATIENTS IN A PERSISTENT VEGETATIVE STATE
The vegetative state is a
clinical condition of complete unawareness of the self and the environment
accompanied by sleep-wake cycles with either complete or partial preservation
of hypothalamic and brain stem autonomic functions.
I. Persistent Vegetative State (PVS) can be
defined as a vegetative state present at one month after acute traumatic or
non-traumatic brain injury, and present for at least one month in degenerative
or metabolic disorders or developmental malformations.
II. Diagnosis:
PVS can be diagnosed on clinical grounds in adult and pediatric patients
after careful, repeated neurologic examinations. (Note that PVS is different
from brain death, and a person in PVS would not meet the criteria for being
declared brain dead as set out elsewhere in this Handbook.) The diagnosis of
PVS should be established by a physician who, by reason of training and
experience, is competent in neurological function assessment and diagnosis.
Reliable criteria do not exist for making a diagnosis of PVS in infants under
three months of age, except in patients with anencephaly. Criteria for
diagnosis include:
-No evidence of awareness of self or environment.
-An inability to interact with others.
-No evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli.
-No evidence of language comprehension or expression.
-Intermittent wakefulness manifested by the presence of sleep-wake
cycles.
-Sufficiently preserved hypothalamic and brain stem autonomic functions to permit survival with medical and nursing care.
-Bowel and bladder incontinence.
-Variably preserved cranial nerve (papillary,
oculocephalic, corneal, vestibulo-ocular, gag) and spinal reflexes.
III. Categories and Clinical Course of PVS: There are four major categories of diseases in adults and children that result in PVS. The clinical course and outcome of PVS patients depends on the specific etiology. The first etiology listed is the only cause due to trauma; the remaining three are considered to be non-traumatic etiologies.
A. Acute traumatic brain injury: PVS
usually evolves from (1) a state of eyes-closed coma to (2) a state of
wakefulness (without awareness) with sleep-wake cycles and preserved brain stem
functions, within one month of injury.
B. Acute non-traumatic brain injury:
Ischemic and anoxic brain injury secondary to cardiac arrest or intracranial
hemorrhage leads to a condition similar to that of a metabolic or degenerative
disorder, described in (C), below.
C. Degenerative and metabolic disorders of
the brain: Many degenerative and metabolic nervous system disorders in
adults and children inevitably progress toward an irreversible vegetative
state. Patients who are severely impaired but retain some degree of awareness
may lapse briefly into a vegetative state from the effects of medication,
infection, superimposed illnesses, or decreased fluid and nutritional intake.
Such a temporary encephalopathy must be corrected before establishing that the
patient is in PVS. If the vegetative state persists for several months,
recovery of consciousness is unlikely.
D. Severe developmental malformations of
the nervous system: The developmental vegetative state is a form of PVS
that affects some infants and children with severe congenital malformations of
the nervous system. These children do not acquire awareness of the self or
environment. This diagnosis can be made at birth only in infants with
anencephaly. For children with other severe malformations who appear vegetative
at birth, observation for three to six months is recommended to determine
whether these infants acquire awareness. The majority of such infants who are
vegetative at birth remain vegetative; those who acquire awareness usually
recover but are severely disabled.
IV. Prognosis for Recovery: The available data
indicate that recovery of consciousness from post-traumatic PVS is unlikely
after 12 months in adults and children. Recovery from non-traumatic PVS is
exceedingly rare after 3 months in both adults and children and those who
recover are almost always severely disabled.
V. Survival of Patients: The life span of adults and
children in PVS is substantially reduced. For most PVS patients, life expectancy
ranges from two to five years. Survival beyond 10 years is unusual. The chance
for survival of greater than 15 years is approximately 1/15,000 to 1/75,000.
Note that the survival of patients in PVS is strongly influenced by the degree
of medical intervention, e.g., the use of feeding tubes.
VI. Management Guidelines:
A. When a patient has been diagnosed as being in PVS by a
physician skilled in neurological assessment and diagnosis, it is recommended
that a physician skilled in rehabilitation medicine also evaluate the patient
to assist in identifying appropriate patient care goals and the level of
nursing care required.
B. Physicians have the responsibility to discuss with the family or surrogate the probability of the patient remaining in PVS.
C. Patients in PVS should receive appropriate medical,
nursing, or home care to maintain their personal dignity and hygiene.
D. Once PVS is considered to be permanent, a “Do Not
Resuscitate” (DNR) order is appropriate. Such a decision should, however, be
made in a manner consistent with the rules for making health care decisions for
an incompetent patient, as discussed elsewhere in this Handbook. The decision
to implement a DNR order may be made earlier in the course of a patient’s
illness, again assuming such a decision is made in a manner consistent with the
rules for making decisions for an incompetent patient.
E. Physicians and the family should determine appropriate
levels of treatment relative to the administration, the forgoing, or the
withdrawal of:
1. Medications
and other commonly ordered treatments
2.
Supplemental oxygen and use of antibiotics
3.
Complex organ sustaining treatments such as renal dialysis
4.
Administration of blood products
5.
Artificial hydration and nutrition, including use of a permanent gastric tube
F. Many individuals in PVS are candidates for foregoing or
withdrawal of any or all of the above interventions. (See appropriate sections
of this Handbook with regard to making such decisions.)
A14. PROCEDURES FOR DETERMINING BRAIN DEATH
There are two well established methods that can be used to determine that death has occurred: (a) use of cardiopulmonary criteria to assess whether circulatory and respiratory functions have irreversibly ceased, or (b) use of neurological criteria to assess whether all brain functions have irreversibly ceased when cardiopulmonary functions are maintained artificially. This policy outlines the procedures to be used for declaring death based on neurological criteria.
I. General Guidelines.
Brain death is the absence of clinical brain function
(including the brain stem) when the proximate cause is known and demonstrably
irreversible.
Brain death is a clinical diagnosis. Special studies such as nuclear brain scans, electroencephalography or cerebral angiography are never sufficient and usually not necessary for the declaration of death by neurological criteria.
To declare death by neurological criteria, the attending physician must be thoroughly familiar with accepted criteria for determining brain death, or obtain consultation from a physician who is thoroughly familiar with these concepts. Neurologists, neurosurgeons, and intensivists often have this familiarity.
Federal regulations require that all deaths and imminent
deaths be referred to the designated Organ Procurement Organization (OPO) to be
screened for donation potential.
Imminent death, for this purpose, is defined as a Glasgow Coma Score of
5 or less. An early screening for
donation potential can guide and expedite the process. (Example:
If there is no donation potential, confirmatory testing might be
deferred and the family need not be offered the option of donation.)
To avoid the appearance of a conflict of interest,
physicians involved in the determination of death by neurological criteria will
not be members of an organ transplant team or involved in the care of a
potential organ recipient.
It is important to note that the family’s permission
should not be sought and is not required for treatment cessation when a patient
has been declared dead by neurological criteria.
II. Specific Procedures for the Declaration of Brain Death.
A. A
patient greater than 2 years of age may be declared dead by brain
criteria when parargraphs (1) through (4), below, are all satisfied:
1. All of the following prerequisites are met:
Clinical or neuroimaging evidence of an acute CNS catastrophe that is compatible with the clinical diagnosis of brain death.
Exclusion of complicating
medical conditions that may confound clinical assessment (absence of severe
hypotension, electrolyte, acid-base, or endocrine disturbance).
No drug intoxication or
poisoning.
Core temperature greater than or
equal to (>)32°C (90°F).
2. The three cardinal findings of brain death—coma,
absence of brainstem reflexes, and apnea—are present.
Coma or unresponsiveness – no
cerebral motor response to pain in all extremities (nail-bed pressure and
supraorbital pressure).
Absence of brainstem reflexes.
Pupils: No response to bright light. Size: midposition (4 mm) to dilated (9 mm).
Ocular movement: No oculocephalic reflex (Testing only when no fracture or instability of the cervical spine is apparent.). No deviation of the eyes to irrigation in each ear with 50 ml of cold water. (Allow one minute after injection and at least five minutes between testing on each side.).
Facial sensation and facial
motor response: No corneal reflex to
touch with a throat swab. No jaw
reflex. No grimacing to deep pressure on
nail bed, supraorbital ridge, or temporomandibular joint.
Pharyngeal and tracheal
reflexes: No response after stimulation
of the posterior pharynx with tongue blade.
No cough response to bronchial suctioning.
Apnea-testing performed as follows:
Prerequisites: Core temperature >36.5° C or 97° F. Systolic blood pressure >90 mm
Hg. Euvolemia.
Measure baseline arterial PO2,
PCO2, and pH.
Hyperoxygenate the patient for a
period of 10 minutes.
Connect a pulse oximeter and
disconnect the ventilator.
Deliver 100% 02 6
L/min, into the trachea.
Look closely for respiratory
movements (abdominal or chest excursions that produce adequate tidal volumes).
Measure arterial PO2,
PCO2, and pH after approximately 8 minutes and reconnect the
ventilator.
If respiratory movements are
absent and the arterial PCO2 is >60 mm Hg (or >20
mm Hg over the patient’s baseline PCO2), the apnea test result is
positive (i.e., it supports the diagnosis of brain death).
If respiratory movements are
observed, the apnea test result is negative (i.e., it does not support the
clinical diagnosis of brain death).
Connect the ventilator if,
during testing, the systolic blood pressure becomes <90 mm Hg or the
pulse oximeter indicates significant oxygen desaturation and cardiac
arrhythmias are present. Immediately
draw an arterial blood sample and analyze arterial blood gas. If PCO2 is >60 mm Hg (or
>20 mm Hg over the patient’s baseline PCO2), the apnea
test result is positive (it supports the clinical diagnosis of brain death); if
PCO2 is <60 mm Hg (or PCO2 increase is<20 mm Hg
over the patient’s baseline PCO2), the result is indeterminate and
an additional confirmatory test can be considered.
If no respiratory movements are
observed, PCO2 is less than 60 mm Hg, and no significant cardiac
arrhythmia or hypotension is observed, the test may be repeated with 10 minutes
of apnea.
3. Coma and absence of brainstem reflexes persist after an
observation period. These two criteria
must therefore be evaluated at both the beginning and end of the observation
period. The interval of the observation period is arbitrary. Six hours is recommended as the minimum.
4. Confirmatory Laboratory Tests: Brain death is a clinical diagnosis. A confirmatory test is not mandatory but is
desirable in patients in whom specific components of clinical testing cannot be
reliably performed or evaluated (e.g., surgical pupils or medical instability
limiting the apnea test). The enumerated results of the following tests support
a clinical diagnosis of brain death:
Conventional angiography. No intracerebral filling at the level of the
carotid bifurcation or circle of Willis.
The external carotid circulation is patent, and filling of the superior
longitudinal sinus may be delayed.
Electroencephalography
(EEG). No electrical activity during at
least 30 minutes of recording that adheres to the minimal technical criteria
for EEG recording in suspected brain death as adopted by the American
Electroencephalographic Society, including a 16-channel EEG instruments.
Technetium-99m
hexamethylproplene-amineoxime brain scan.
No uptake of isotope in brain parenchyma (“hollow skull phenomenon.”).
B. The
determination of brain death in patients less than 2 years of age is
similar to that of patients greater than 2 years of age except that longer
observation intervals and some confirmatory tests are recommended.
1. Age 1 year to 2 years:
A minimal observation interval
of 12 hours is recommended for most causes of coma. A 24 hour observation period should be
considered if hypoxia/ischemia is the proximate cause.
A confirmatory test is needed to
reduce the observation interval.
Otherwise, confirmatory tests are not required.
2. Age 2 months to 1 year:
The minimum recommended
observation interval between clinical exams is 24 hours.
Two EEGs demonstrating
electrocerebral silence separated by 24 hours.
A repeat examination and EEG are not necessary if a concomitant cerebral
radioactive angiographic study demonstrates no visualization of cerebral
arteries.
3. Age 7 days (assuming > 38 weeks gestational age) to
2 months
The minimum recommended
observation interval between clinical examinations is 48 hours.
Two EEGs demonstrating
electrocerebral silence separated by 48 hours.
4. Determination of death by neurological criteria is not recommended for infants less than 7 days old (assuming > 38 weeks gestational age).
C. Special situations.
In the event a determination of
brain death is being considered in a patient who is known to be pregnant,
obstetrical consultation should be arranged.
Although the determination of brain death itself is not an
ethical dilemma, ethical issues commonly coexist in this setting. Consultation with the Hospital Ethics
Committee may be appropriate.
IV. Procedures following the first exam that reveals absence of
brain function.
Two exams separated by an observation
period are required for the declaration of brain death. The absence of brain function at the time of
the first exam, in the appropriate clinical circumstance, is often an indicator
that death is imminent. Under these
circumstances, to comply with regulations implemented in August 1998 by the
Health Care Financing Administration, now known as the Centers for Medicare
& Medicaid Services, the Midwest Transplant Network will be notified of the
potentially imminent death. Information
required to make an assessment of the patient’s suitability for organ and
tissue donation will be provided to the screening coordinator.
As it would be inappropriate for
the family to make a decision regarding organ and tissue donation prior to the
determination of death, the family will not be offered the option of
donation until it has been determined from a second exam that brain death has
occurred. (See Section V.)
V. Procedures following the declaration of death by neurological
criteria.
A. In patients declared dead by neurological criteria, a note signed by the attending physician must document the following elements:
1. Etiology and irreversibility of condition.
2. Presence of unresponsive coma at the beginning and end
of the observation interval.
3. Absence of brainstem reflexes at the beginning and end
of the observation interval.
4. The duration of the observation interval.
5. Absence of respiration with PCO2 >60mm
Hg (or >20 mm Hg over the patient’s baseline PCO2).
6. Justification for confirmatory test and result of
confirmatory test.
7. The time death was certified.
B. Death, based on fulfillment
of all diagnostic criteria for brain death and certification by the attending
physician, is declared while the artificial respirator is still ventilating the
patient. The patient's family is not asked to participate in or to make the
decision that the patient is brain dead. Once the family has been informed and
a declaration of death has been made, and all decisions and measures relating
to possible organ donation have been completed, treatment of the patient should
cease. Consent or permission of the family is not required for treatment
cessation.
Under federal regulations, only
trained requestors may offer the option of organ donation (when appropriate).
It is hospital policy that a representative of the Midwest Transplant Network,
the local Organ Procurement Organization (OPO), will offer the option of organ
donation after the attending physician has made a declaration of death and
informed the family. It is recommended
that the family be told by the attending physician:
1. That the attending physician
has determined that the patient is dead and that a declaration of death has
been made and documented in the patient's medical record.
2. That the patient's body is
being maintained by mechanical ventilation and pharmacologic measures for a
period of time while donation options are considered.
3. That resources (such as the local OPO staff) are available to support them and explain their options. The physician will work collaboratively with the OPO coordinator to determine how and when the coordinator will be introduced to the family. The coordinator will offer the option of organ donation and assist the family as needed in making an informed decision.
If a decision is made that the
patient will not serve as an organ donor, interventions being used to maintain
the patient’s body should be discontinued. Family members should be allowed to
accompany the patient's body before, during and/or after these interventions
are withdrawn.
Neurology 1987;
37:1077-1078.
A15. Research Involving
Human Subjects
All research activities undertaken with the University of Kansas Medical Center (or outside of the medical center, if undertaken by or supervised by faculty, staff or students) which involve the use of human subjects must be reviewed and approved by the Human Subjects Committee before they are begun. This requirement applies not only to research which involves direct participation by a human subject, but any activity which involves material derived from or collected from a human subject, and activities which involve use of data, photographs, images or records of human subjects. That committee also has responsibility for continuing review of all on-going research.
A detailed Policies and Procedures Manual is maintained by
that committee and will be provided to any investigator upon request.
Information regarding human subjects research or that committee may be obtained
by calling its office at 588-1240, or visiting that office (6020 Wescoe).
________________________________________________________________________________
B1. Patients’ Rights
Hospital policies concerning patient rights are included
in Volume 2 of Hospital policies and is accessible through the Hospital
intranet at http://intranet.kumed.com. The Patient Rights document is also available
on all nursing units and is displayed on inpatient units. [Before relying on
the attached, check with the administration of the Hospital to make sure the
attached patient rights documents have not been revised.] Note: If you experience problems in accessing
http://intranet.kumed.com/– contact
marketing at 588-5728 for assistance.
ATTACHMENTS: Patient’s
Rights Document (Adult)
A Rights Statement
for Minors with Decisional Capacity
A Rights Statement
for Children with a Developing Capacity
for Decision making
ATTACHMENTS:
Patients’
Rights Document (Adult)
The
University of Kansas Hospital is committed to respect for and the protection of
the rights of its patients. Honoring these rights is an important pat of
respecting and caring for you as a whole person. We are committed to relating
to you in a way that respects your role in making decisions about your care. We
will provide care in a manner that is sensitive to cultural, racial, religious
and other differences. In providing you this care, we will not discriminate on
the basis of race, color, religion, age, sex, sexual preference, national
origin, disability or source of payment.
We will
respond to your reasonable requests for treatment and to your health care
needs. Our response will depend on both the urgency of your situation and on
our ability to provide the kind of treatment you may require.
We need
you to participate in decisions about your health care. By talking with your
caregivers and actively participating in planning your care, you will help to
ensure that the care you receive will reflect your dignity and be in keeping
with your desires and values.
As an
adult patient of this hospital, you have the right:
* To know the name, identity and professional
status of all persons providing services
to you and to know the physician who is
primarily responsible for your care.
* To receive complete and current information
concerning your diagnosis, treatment
and
prognosis in terms that you can understand.
* To access to all information contained in
your medical record.
* To an explanation in terms you can
understand of any proposed procedure, drug or
treatment. The explanation should include
a description of the nature and purpose of
procedure, drug or treatment; the
possible benefits; the serious side effects, risks or
drawbacks which are known; potential
costs; problems related to recovery; and, the
likelihood of success. The explanation
should also include discussion of alternative
procedures or treatments.
* To accept or refuse any procedure, drug or
treatment and to be informed of the
consequences of any such refusal.
* To formulate advance treatment directives
and to expect that these directives will
be honored.
* To appoint surrogate decision-maker to make
heath care decision on your behalf in
the event you lose the capacity to make
decisions.
* To personal privacy. Care discussion,
consultation, examination and treatment will
be conducted discreetly.
* To expect that all communications and
records related to your care will be treated
confidentially.
* To supportive care including appropriate
management of pain, treatment of
uncomfortable symptoms and support of
your psychological and spiritual needs
even if you are dying or have a terminal
illness.
* To know about the option of organ, tissue or
eye donation, when relevant.
* To have access to protective services.
* To assistance in obtaining consultation with
another physician regarding your care.
This consultation may result in
additional cost to you.
* To be transferred to another facility at
your request or when medically appropriate
and legally permissible. You have a right
to be given a complete explanation
concerning the need for and alternatives
to such a transfer. The facility to
which
you will be transferred must first accept
you as a patient.
* To know if your care involves research or experimental
methods of treatment. You
have the right to consent or refuse to
participate.
* To voice complaints regarding your care, to
have those complaints reviewed, and,
when possible, resolved without fear of
recrimination or penalty to yourself. You
have the right to be informed of the
response to your complaint.
* To expect reasonable continuity of care and
to be informed by care givers of
realistic patient care options when
hospital care is not appropriate. You have
the
right to participate in this discharge planing process.
* To examine your bill and receive an
explanation of the charges regardless of the
source of payment for your care.
* To ask about the ownership interests the
hospital may have in organizations to
which it may refer you.
* To be informed of any hospital policies,
procedures, rules or regulations
applicable to your care.
If you
are unable to exercise these rights, your legal guardian, next of kin or
legally
Authorized
surrogate has the right to exercise these rights listed above on your behalf.
It should
be noted that, in certain circumstances, laws or regulations may authorize
limitations upon your ability, or that of a surrogate, to exercise any of the
above listed rights.
If you
have any questions regarding these rights or wish to voice a concern about your
rights or treatment, you may contact the nurse or physician responsible for
your care. The nurse manager is also available to assist you.
The
Patient Relations Office is available to assist you in all matters related to
your
satisfaction. If you have any questions or concerns, a
representative can be reached by calling Ext. 81290.
The University of
Kansas Hospital is committed to respecting and protecting the rights of its
patients. Honoring these rights is an
important part of respecting and caring for you as a whole person. We are committed to relating to you in a way
that respects your role in decisions about your care. We will provide care in a manner that is
sensitive to cultural, racial, religious and other differences. In providing you this care we will not
discriminate on the basis of race, color, religion, age, sex, sexual
preference, national origin, disability or source of payment.
We will respond to
your reasonable requests for treatment and to your health care needs. Our response will depend on both the urgency
of your situation and on our ability to provide the kind of treatment you may
require.
We need you to
participate in decisions about your health care. By talking with your caregivers and actively
participating in planning your care, you will help to ensure that the care you
receive reflects your dignity and is in keeping with your desires and
values. You are being treated as a minor
who is capable of making your own health care decisions. Therefore, you are being given this information
regarding your rights. However, you
should be aware that in certain circumstances your ability to act on these
rights may be limited by laws, regulations or policies of the hospital. If acting on any of these rights conflicts
with the desires of your parents/guardian, you and your parents/guardian may
need to work with members of the hospital staff to try to resolve the conflict.
As a patient at the
1. To know the
name, identity, and professional status of all persons providing services to
you and to know the physician who is primarily responsible for your care.
2. To receive
complete and current information concerning your diagnosis, treatment and
prognosis in terms that you can understand.
3. To have access
to all information contained in your medical record.
4. To an
explanation in terms you can understand of any proposed procedure, drug or
treatment; the possible benefits; the serous side effects, risks or drawbacks
which are known; potential costs; problems related to recovery; and, the
likelihood of success. The explanation
should also include discussion of alternative procedures or treatments.
5. To accept or
refuse any procedure, drug or treatment, and to be informed of the consequences
of any such refusal. If there is
conflict between you and your parents/guardian regarding your exercise of this
right, you and your parents/guardian may need to participate in conflict
resolution procedures.
6. To formulate
advance treatment directives and to expect that these directives will be
honored.
7. To select a
surrogate decision-maker to participate in making health care decisions on your
behalf in the event you lose the capacity to make decisions.
8. To personal
privacy. Care discussion, consultation,
examination and treatment will be treated confidentially.
9. To expect that all communications and
records related to your care will be treated confidentially.
10. To supportive
care including appropriate management of pain, treatment of uncomfortable
symptoms and support of your psychological and spiritual needs even if you are
dying or have a terminal illness.
11. To assistance
in obtaining consultation with another physician regarding your care. This consultation may results in additional
cost to you or your family.
12. To request
consultation with the Hospital Ethics Committee regarding ethical issues
involved in your care.
13. To be
transferred to another facility at your request or when medically appropriate
and legally permissible. You have a
right to be given a complete explanation concerning the need for and
alternatives to such a transfer. The
facility to which you will be transferred must first accept you as a patient.
14. To know if your
care involves research or experimental methods of treatment. You have the right to consent or refuse to
participate.
15. To voice
complaints regarding your care, to have those complaints reviewed, and, when
possible, resolved without fear of any harm or penalty to yourself. You have the right to be informed of the
response to your complaint.
16. To expect reasonable
continuity of care and to be informed by caregivers of realistic patient care
options when hospital care is no longer appropriate. You have the right to participate in this
discharge planning process.
17. To examine your
bill and receive an explanation of the charges regardless of the source of
payment for your care.
18. To be informed
of any hospital policies, procedures, rules or regulations applicable to your
care.
19. If you are
unable to exercise these rights, your guardian, next of kin or legally
authorized surrogate has the right to exercise these rights on your behalf.
If you have any questions regarding these rights or wish to voice a concern about your rights, you may contact the Patient Affairs Office by calling extension 81290.
Please
read this list of rights. If you need
help reading it or need to have some of the words explained to you, ask your
mom or dad or any of the people taking care of you.
This is a list of the rights you have, as a patient here
at the
1. The right to
read or have this list of rights read to you and explained to you as often as
you want.
2. The right to
be treated with respect by all the people who work at this hospital and to know
the name and job of each person taking care of you.
3. The right to
be told what you need to know to help you understand why you are at the
hospital
4. The right to
have explained to you honestly, in a way you can understand, anything that is
going to be done to you while you are here.
And, to be told what it may feel like to have those things done.
5. The right to
have questions or worries about your treatment answered in ways you can
understand.
6. The right to
tell your family, doctors, nurses, and other people taking care of you what you
think and feel about your treatment and what is being planned for you.
7. The right to
help your family and the people taking care of you decide what will be done for
you.
8. The right to
help in solving a disagreement if you and your family or you and the people
taking care of you here at the hospital don’t agree about what should be done
for you.
9. The right to
agree or disagree to anything that is going to happen to you. If you tell the people taking care of you
that you disagree, you have the right to know that nothing will be done to you
until the people taking care of you talk to you about your worries and questions.
10. The right to
know that nothing will happen to you that you do not want unless your family
and the people taking care of you agree that you need to have it done.
11. The right to
know if your care is part of a research project. You can agree or not agree to be part of any
research or stop being part of any research.
12. The right to
know that what people taking care of you learn about you will not be told to
people who do not need to know.
13. The right to be
able to talk freely with the people taking care of you and to know that what
you say will not be told to others, including your family, unless it is
important to your care of you give permission.
14. The right to
know that when the people taking care of you touch your body, they will tell
you what they need to do, be gentle and do it in a private way.
15. The right to ask
for special things or people that would make you feel more comfortable while
you are here
16. The right to
have your family with you as much as possible if you want them to be. When this is not possible, the people taking
care of you will explain why they can’t be with you.
17. The right to
have a “safe place” where the doctors, nurses and other people taking care of
you at the hospital will not perform treatment procedures. Your nurse will tell you about this special
place and show you and your family where it is.
18. The right to
know if you are scared, in pain or hurting, the people taking care of you will
try to help you.
19. The right to get
angry, or to cry, or to say what you don’t like about what is happening to you.
20. The right to
know that what is being done to you by your doctors, nurses and other people
taking care of you is being done to help you and not to punish you.
21. The right to be
treated as a growing person and to have times and places to play and to learn
while you are here.
22. The right to
have the people taking care of you teach you and your family all you need to
know about your health care to that you can take care of yourself at home.
If you feel that any of these rights are not being respected, you should tell your parents and the people taking care of you. You can also call a person in a special office called the Patient Affairs Office by dialing 81290 on the phone in your room.
B2. CODE OF ETHICS AND PROFESSIONAL CONDUCT
The Hospital Code of Ethics and Professional Conduct is
included in Volume 1 of Hospital policies and is accessible through the
Hospital intranet at http://intranet.kumed.com. [Before relying on this, check with the
administration of the Hospital to make sure the attached Code of Ethics and
Professional Conduct has not been revised.]
ATTACHMENT: CODE OF ETHICS AND PROFESSIONAL CONDUCT
THE UNIVERSITY OF
AND ITS SUBSIDIARIES
(HEREAFTER KNOWN AS THE "SYSTEM")
CODE OF ETHICS
AND
PROFESSIONAL CONDUCT
I.
PURPOSE
AND POLICY
The System intends to conduct
its patient care and business operations within an ethical and legal framework
as defined by its mission, vision, values, strategic plan, and Corporate
Compliance Plan. This Code of Ethics and Professional Conduct (“Code”)
describes the System's ethical and legal framework required by the Corporate
Compliance Plan.
The Code cannot, nor is it
intended to, cover all System employee activities or resolve all System
employee ethical or legal questions. The
Code will be updated and revised over time to provide guidance and current
information to System employees. If you
are not sure whether your actions comply with the Code, or if you are aware of
a suspected or known Code violation, you should consult with your supervisor or
the Chief Compliance Officer as described below.
A.
The
Corporate Compliance Plan
1
What are the System's Responsibilities under the
Corporate Compliance Plan?
·
Develop the Code to provide System employees with
ethical and legal guidance on matters of daily business conduct.
·
Distribute the Code.
·
Establish and maintain training programs to ensure
familiarity with and understanding of Code compliance requirements.
·
Advise employees, officers and directors as to the
proper interpretation and application of the Code.
·
Administer the Code and its supporting policies.
·
Assure a working atmosphere conducive to compliance
and free of retaliation for the reporting of alleged Code violations.
2
What are the System Employees’ Responsibilities
under the Corporate Compliance Plan?
Each
System employee has an obligation to assure that the Corporate Compliance Plan
is a success by doing the following things:
·
Read and regularly review the Code and supporting
policies.
·
Participate in Code training programs and staff
meetings.
·
Abide by the Code.
·
Ask questions and seek assistance when uncertain
about what to do.
·
Support employees who report suspected violations
of the Code. Recognize that retaliation
against persons who report suspected violations is not permitted.
·
Be alert to situations that could result in illegal
or unethical conduct and encourage other System employees to consult with
supervisors or the Chief Compliance Officer when it appears that they may be in
danger of violating the law or the Code.
·
Immediately report suspected or known violations of
the Code.
B.
The Code
1
Who must comply with the Code?
Each
System employee must observe the Code.
The System has designated a Chief Compliance Officer to respond to
System employees and to help employees understand and comply with the
Code. The Chief Compliance Officer
administers the Code through a committee and reports on matters of compliance
with the Code to the Authority Board of Directors.
All System employees must promptly report any
suspected or known Code violations.
Failure to report such violations may result in disciplinary action, up
to and including loss of employment.
2
What if there are questions or suspected or known
Code violations?
For
questions or to report Code violations contact:
Your
Supervisor
OR
The
Corporate Compliance Officer at your Subsidiary
OR
The Chief
Compliance Officer Phone:
913-588-5434
Each Code
violation report will be handled confidentially to the extent possible as
determined by the Chief Compliance Officer.
No retaliation or harassment against System employees who report
possible Code violations will be tolerated.
System employees may raise concerns anonymously. If an anonymous Code violation report provides
enough information to permit investigation, it will be pursued as determined by
the Chief Compliance Officer. However,
anonymity may make it difficult to investigate and resolve Code violation
reports. For this reason System
employees are encouraged to give their identity when asking a question or
reporting a possible Code violation.
3
What is the Code Acknowledgment Card?
Each
System employee will be asked to pledge his or her support to and agree to
comply with the Code. From time to time System employees will be asked to renew
their pledge. Each System employee will
be asked to sign the Acknowledgment Card to acknowledge that he or she has
received and agrees to comply with the Code.
4
What will happen if the Code is not followed?
The Code
is important and failure to comply with its provisions is a serious matter that
may lead to disciplinary action, up to and including loss of employment.
5
What general topics does the Code discuss?
The Code
covers:
·
Patient Care Services;
·
System Employee Working Environment;
·
Business Practices; and
·
General Legal Standards.
II.
PATIENT
CARE SERVICES
The
System's activities encompass such patient care services as the prevention and
treatment of illness, education, and research.
All such activities will be conducted with integrity, compassion, and a
concern for human welfare and dignity.
System employees are expected to make a good faith effort to meet or
exceed a standard of exceptional service in a courteous manner. It is expected that every individual coming
into contact with the System, be they patient, visitor, employee, physician,
student, or volunteer, will be able to enjoy an atmosphere which fosters
respect, personal safety, and courtesy.
A.
Provision
of Quality Care
System employees shall follow
standards of care based upon the identified needs of the patient without regard
to ability to pay. System employees
shall seek to avoid the provision of services that are medically unnecessary or
ineffective. Every effort should be made
to provide high quality health care in an economical manner to patients.
B.
Patients’
Rights
System employees shall comply with applicable state
and federal legislation regarding patients’ rights. System employees shall respect patients’
rights and assist patients and/or their legally authorized representatives in
understanding and exercising their rights and responsibilities. A patients’
rights document will be provided in writing to all patients and/or legally
authorized representatives upon admission to a patient care unit or treatment
area.
The System patient is the
primary decision-maker with respect to his or her own health care. The patient has the right to accept, forego
or withdraw from offered treatment. Information
regarding diagnosis, treatment and/or research options and prognosis should be
delivered in language that is understood to ensure that the patient’s right to
make an informed choice is preserved.
System employees will work to provide for the protection of the rights
of patients whose capacity to act as their own advocate is diminished by virtue
of age or incapacity. Under certain
circumstances, a legally authorized representative may have the right to make
decisions related to patient care, including the use of life sustaining
treatment. The System will work with
such legally authorized representatives.
C.
Patient
Non-Discrimination and Accommodation of Special Patient Needs
The System acknowledges and
respects individual patient differences, such as personal background, race,
color, ethnic or cultural heritage, national origin, religious/spiritual views,
communication needs, sex, age, marital status, veteran status, sexual
orientation, handicap, and developmental disability. It is the policy of the System that such
differences will be respected in all patient service activities. All patients should be able to expect a high
quality of care based on their unique health care needs with respect for and
regardless of individual differences.
All constituents served must be able to enjoy the same nondiscriminatory
System environment.
The
System recognizes its responsibility to accommodate the special needs of
patients and staff with disabilities.
The System will make every effort to comply with all state and federal
regulations that apply to such circumstances.
These accommodations will be made in a manner that respects the dignity
of all parties involved.
D.
Patient
Admission, Transfer and Discharge
Patient admission, transfer and discharge shall be
properly conducted in an ethical manner and in accordance with all applicable
local, state, and federal regulations. Patients who are in need of the System’s
emergency stabilizing services shall not be denied services. Patients whose specific condition or disease
cannot be safely treated at the System shall be properly transferred to an
accepting facility.
Also, a patient may request
transfer to another facility. Such a
request will be facilitated when medically appropriate and legally
permissible. The patient will receive a
complete explanation of alternatives to and risks associated with such a
transfer. The receiving facility must
first accept the patient. All such
activities will be carried out in a respectful and courteous manner.
The System believes patient
discharge planning is an integral part of the comprehensive health care
plan. Planning for discharge from the
System is a multi-disciplinary process involving the patient and family. The patient will be informed by caregivers of
realistic care options when hospital care is no longer medically necessary or appropriate.
E.
Confidentiality/Release
of Patient Information
System employees shall recognize the vital need to
maintain patient and business information in a confidential manner. Patient information shall not be released
without legal authorization. System
employees, physicians, and students are expected to control the informal
transmission of confidential information.
Sensitive information concerning personnel and management issues shall
be maintained in the strictest of confidence and shall be utilized only by
those individuals legally authorized to review and act on such information.
1
What is confidential information?
Confidential
information includes any information, or present or planned business, that has
not been publicly disclosed by the System.
Specifically, System employees are not allowed to release information
without legal authorization about:
·
Patients, employees or payors
·
Pricing
·
Financial data
·
Marketing programs
·
Research
Information
such as this is vital to the System's patient care and business
operations. It is also a key component
of the Code.
2
Why must the System protect confidential
information?
Disclosing
confidential information without authorization may violate this Code,
applicable law, and System policy regarding:
·
Patient confidentiality
·
Conflict of interest
·
Antitrust
·
Employment matters
·
Finances
·
Intellectual property
3
What about confidential medical record information?
System
employees pledge to keep medical record information confidential and to respect
privacy. This pledge is especially
important to the System's patient care and business operations. A medical record or information contained in
a medical record should be released only if:
·
A valid written consent for the release of this
information is obtained from the patient or legally authorized representative.
·
Reporting is required or permitted by law.
Example:
Two employees are discussing a patient's condition
in a crowded elevator. A reporter riding
in the same elevator realizes the patient is a celebrity with a terminal
illness. The reporter uses these facts
to run a lead story in the morning paper.
The
employees should not have discussed the case in the elevator. All patient conditions are confidential and
should not be discussed in casual conversation, even if the patient's name or
illness is not specified.
F.
Patient
Care Ethics Committee Consultation
The
System recognizes differences of opinion among those who participate in
patient-care decisions. The System will
seek to resolve all conflicts fairly and objectively. Ethics Committee consultation is available
upon request. The Ethics Committee
review will be available within twenty-four (24) hours.
III.
SYSTEM
EMPLOYEE WORKING ENVIRONMENT
A.
Diversity
The
System is committed to equal employment opportunity in the work place. The System seeks a working environment free
of prejudice or harassment on the grounds of race, color, religion, sex, age,
disability, national origin or any other illegal factor. As is consistent with the high regard the
System places upon employee satisfaction and respect, the System is committed
to abiding by all federal, state and local laws dealing with employment
matters. The System employees shall
encourage open communication and a spirit of cooperation.
B.
Maintaining
Employee Safety and System Environment
The
System pledges:
·
To continue to develop procedures and conduct
training programs to meet legal standards on health, safety and environmental
protection.
·
To consider the effects that new developments have
on the environment.
·
To recognize and respond to community concerns
about the effects of System business on the environment.
System
employees are expected to:
·
Learn the procedures for handling and disposal of
any hazardous materials used on their job.
·
Know the safety procedures that apply to their job.
·
Share ideas for improving safety and reducing waste
with supervisors.
·
Use best efforts to ensure that actions are carried
out in a safe and healthy manner.
A
commitment to health, safety and environmental protection can be seen in the
System’s efforts to reduce the generation of waste. Wastes should be recycled or reused whenever
possible. Wastes that cannot be recycled
or reused should be discarded in a safe manner.
For
questions or to report safety violations contact:
·
Your Supervisor
·
Employee Health
·
Safety Officer and the Safety Office
C.
System
Employee Relief From Participating In Patient Care
The System acknowledges that a
System employee may request to be relieved from participating in a patient's
care or treatment in a situation where the prescribed care or treatment
presents a conflict with deeply held cultural values, sense of ethics, or
religious beliefs. The policy on
management of staff rights addresses the mechanism for handling these requests
and is available upon request. The
System shall ensure that patient care and treatment are not compromised if such
a request is granted. The Ethics
Committee is available for exploration and discussion upon referral.
IV.
BUSINESS
PRACTICES
A.
Business
Practices
The System is committed to the delivery of high
quality carere at reasonable and competitive prices. To that end, the System relies on the ability
and professionalism of its employees and representatives to communicate
effectively the merits of System services to the patient, physician, and
consumer, and expects System employees to use only legitimate competitive
practices.
B.
Financial
Matters
System
employees shall work to maintain the financial records of the System in an
accurate and complete manner.
The
System accounting controls will be sufficient to provide reasonable assurance
that:
·
Expenditures are made with proper approval and
authorization.
·
All transactions are recorded to help the System
prepare financial statements and account for resources in accordance with established
policies.
·
Access to assets is permitted only with proper
approval.
·
Assets are adequately safeguarded, with any
discrepancies immediately reported to management.
The financial matters of the
System, its employees, physicians and patients are very private. System employees should not reveal these
matters to outside parties without permission from the Chief Financial Officer
or the President and Chief Executive Officer.
C.
Billing
for Services Rendered
The System recognizes the
imperative nature of accurate and timely billing. Patients and third parties should be billed
only for service actually provided to patients and fully documented in the
patient’s medical record. Inaccurate
records, payments, or billings should be promptly reported to the System
administrator or manager authorized to address the situation.
·
Initial patient billing should include a
summarization of charges and dates of services.
Itemized charges should be available to patients upon request.
·
When a patient or payor has a question about a
specific charge, that inquiry shall be reviewed expeditiously and the response
will be timely and courteous and accompanied by a complete explanation of the
charges.
·
Assistance will be provided to patients and/or the
patients' designee who are seeking to understand the cost of their care, or who
are seeking to gain information regarding estimated cost of treatment.
·
As a service to patients, the System works to bill
all third party carriers, including secondary carriers, as appropriate.
·
Patients should receive written notice of any
balance due on the account.
·
Fair Debt Collection Practices shall be adhered to
in attempting to collect any outstanding balance from a patient.
·
Patients who are unable to pay the balance on their
account may be offered a payment plan.
·
For patients who have been determined to be
financially needy, an assistance program may be available to discount or adjust
the patient’s responsibility.
D.
Conflicts
of Interest
The System recognizes that the
potential for conflicts of interest exists for decision-makers at all
levels. Consequently, the System shall
request the disclosure of potential conflicts of interest so that appropriate
actions may be taken in advance to ensure that any applicable conflict does not
inappropriately influence decisions on behalf of the System. Conflicts may exist with respect to
contractual relationships between the System and its staff or other health care
providers, educational institutions, and payors as well as referral sources and
vendors. System administrators and department managers will submit an annual
conflict of interest statement.
1
What is a conflict of interest?
A
conflict of interest arises whenever a System employee’s interest or that of an
immediate family member conflicts or appears to conflict with the interests of
the System. Each System employee has a
duty to avoid conflicts of interest or the appearance of conflicts of
interest. If you, or an immediate family
member, are faced with a transaction, decision, or situation that you think may
create a conflict of interest, report it promptly to your supervisor or the
Chief Compliance Officer.
Example 1:
My spouse is an officer of Company B that sells lab
supplies. Is it a conflict of interest
for me if the System buys supplies from Company B?
This
relationship should be disclosed to your supervisor or the Chief Compliance
Officer as a potential conflict of interest.
If you are not in a position to influence or affect the System's choice
of suppliers, the disclosure of this relationship will, in most situations, be
sufficient to avoid a conflict of interest.
Example 2:
I have been offered a trip for two to
Yes, such
an arrangement would lead to your personal gain directly from your duties as an
employee. You should report the offer to
your supervisor or the Chief Compliance Officer.
Example 3:
I wish to buy some land that I learned was for sale
through my job at the System. Is the
purchase a conflict of interest?
This
could be a conflict if the System is still negotiating for the purchase of the
real estate. To be safe, you should get
confirmation from the Chief Compliance Officer that the System is no longer
considering or pursuing the purchase.
E.
Marketing
and Public Relations
The System will strive to fully
and accurately represent itself, its service and its capabilities to the
public. Marketing materials should
reflect those services available, the current level of licensure and
accreditation, and provide communications which are designed to inform and
persuade but not to deceive. All
comparisons to competitive offerings will be fair. Patient confidentiality and privacy will be
respected and protected in any System marketing or public relations activities.
V.
GENERAL
LEGAL STANDARDS
Integrity
and adherence to the law are basic obligations for everyone. System employees shall uphold applicable laws
and regulations. If a System employee
has questions about actions, he or she shall seek advice from the Chief
Compliance Officer before taking the action.
In general, it is illegal and a violation of System policy to:
·
Engage in bribery.
·
Steal hospital property or the property of another.
·
Commit a fraud or purposely mislead another through
the use of false statements.
·
Injure an individual or his/her property by
committing an unlawful act.
·
Violate any federal, state or local law or
regulation.
The
policy of the System with respect to more specific laws is set forth below, as
may be amended from time to time by the System.
A.
Copyright
& Intellectual Property Laws
Consistent
with the high value the System places upon proprietary information, the System
pledges to abide by all federal, state and local laws that protect intellectual
property. Intellectual property includes
patents, trademarks, service marks, trade secrets, and copyrights. Federal and state laws protect intellectual
property. Violations of the intellectual
property laws may result in civil damages or criminal charges. In addition, the System may be held
responsible for the actions of individual employees who break intellectual
property laws.
During
the course of employment, a System employee may have access to intellectual
property owned by other businesses. This
information may include patents, techniques, publications or trade
secrets. This information is confidential
and should not be disclosed to others or used for personal purposes. Licensed computer software is a good example
of intellectual property owned by another business. Duplicating computer software or the
materials that accompany it may violate the copyright laws and the System
corporate policy. The use of illegal
copies of software on hospital hardware is prohibited.
The
following activities also may violate intellectual property laws:
·
Installing software programs on more than one
computer when it was sold for only one computer. Find out how many computers can use a
multiple unit software package before ordering or installing software.
·
Copying (by machine or hand) an entire issue of a
journal, magazine or newsletter. Unless
permission is obtained from the publisher to make such copies, the original
should be circulated within a group or several subscriptions purchased.
B.
Antitrust
Laws
It is the
policy of the System to comply with all antitrust laws that affect the manner
in which the System, its employees, or affiliates may do business. Antitrust laws are intended to preserve
competition. For this reason, System
employees should avoid discussions with competitors concerning:
·
Prices or payor rates.
·
Decisions to deal with a particular payor or group
of payors, or patient or group of patients.
·
The granting of membership, privileges, or managed
care participation status to any physician, health care provider, or group of
providers.
Consult
your supervisor or the Chief Compliance Officer if you have questions about the
antitrust laws.
C.
Medicare/Medicaid
Fraud and Abuse
Facilities
that receive monies for service provided under Medicare and Medicaid are
subject to several laws and regulations designed to prevent fraud and
abuse. These laws were created to make
certain that federal funds, which finance Medicare and Medicaid, are used only
for those purposes. Failure to obey
these laws can result in fines, jail or exclusion from Medicare and Medicaid
programs. By signing the Acknowledgment
Card, System employees pledge to use their best efforts to comply with these
fraud and abuse laws. The fraud and
abuse laws are complicated and contain numerous exceptions or “safe
harbors.” If you have specific questions
about the fraud and abuse laws, consult the Chief Compliance Officer.
Some of
the more important laws relating to fraud and abuse are discussed below:
1
Billing
and Claims
As
described above, honesty and accuracy in billing and in the making of claims
for Medicare or Medicaid payment is vital.
It is a felony to willfully make a false statement in connection with a
claim for payment or an application for certification under Medicare or
Medicaid. Using their best efforts, the
System and its employees must ensure that all services are properly documented,
coded, and billed to the responsible party.
2
Anti-kickback
Statute
The anti-kickback
statute is a federal law. Anyone who
willfully offers, pays, seeks, or receives anything of value, including
kickbacks and bribes, to bring about a referral for medical services or goods
payable by Medicare or Medicaid violates this law. Failure to obey the anti-kickback statute can
result in fines, jail, or exclusion from the Medicare and Medicaid
programs. The anti-kickback statute also
affects the way in which entities carry out a broad range of ordinary business
deals.
The following activities may be illegal under the
anti-kickback statute and should be reported to the Chief Compliance Officer:
·
Offer or acceptance of payment other than fair
market value for health care services as a way of getting more business.
·
Acceptance of prizes, gifts, cash payments, coupons
or bonuses offered for marketing certain products.
·
Financial incentives given to physicians that are
linked to the number of referrals made by the physician or to the physician’s
level of billing.
3
Ban on
self-referral
A
physician who receives payment directly or indirectly from, or has an
investment interest in, a business should not refer patients to that business
for certain services paid for by Medicare or Medicaid. Claims should not be submitted for services
performed as a result of improper referrals.
The self-referral statue is a complicated law, with numerous legal
exceptions. Specific questions regarding
the self-referral laws should be directed to the Chief Compliance Officer.
4
What if
we have additional questions?
The
anti-kickback statute and the self-referral ban are subject to numerous legal
exceptions. These exceptions, as well as
the proper application of these laws, are further explained in other System
policies including policies relating to Medicare/Medicaid fraud and abuse. Specific questions regarding any legal
standard should be directed to the Chief Compliance Officer.
D.
Other
Laws
This Code
covers many areas; however, your job may involve legal rules not explained
here, but explained in detail in other System policies. For example, if you work in the System
pharmacy or are responsible for the collection of receivables, other laws may
apply to your duties. If your work involves these topics, you
should ask your supervisor for additional training, including information about
consumer credit protection, garnishments or laws relating to pharmacies. For answers to questions pertaining to other
areas, please consult your supervisor or the Chief Compliance Officer.
VI.
Conclusion
Underlying
each of the above statements is the System’s overall commitment to act with
integrity in all activities and to treat System employees, patients,
physicians, students, and the many constituents it serves with utmost
respect. Supporting
policies are set forth in the Hospital Wide Policy Manual and/or Department
Policy Manuals and are available to System employees upon request. Please review specific policies for
additional guidance.
B3. Requests for Relief from Participation in
Aspects of Care
Hospital policy concerning relief from participation in
aspects of care is included in Volume 5
of Hospital
policies and is accessible through the Hospital intranet at http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital
to make sure the attached patient rights documents have not been revised.]
B4. PRIVACY/CONFIDENTIALITY
Hospital policies concerning patient confidentiality are
included in Code of Ethics and Professional Conduct and the Information
Management sections of Volume 1, Volume
2, Patient Rights, and Volume 5, Human Resources sections of Hospital policies
and are accessible through the Hospital intranet at http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital
to make sure the attached patient rights documents have not been revised.]
B5. RELEASE OF INFORMATION
Hospital policies concerning release of information are
included in Code of Ethics and Professional Conduct and the Information
Management sections of Volume 1, Volume
2, Patient Rights, and Volume 5, Human Resources sections of Hospital policies
and are accessible through the Hospital intranet at http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital
to make sure the attached patient rights documents have not been revised.]
B6. PATient denial/no information status
The Hospital policy concerning patient denial and no
information status is included in Volume 2, Patient Rights section of Hospital
policies and is accessible through the Hospital intranet at http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital
to make sure the attached patient rights documents have not been revised.]
B7. RESOLUTION OF PROFESSIONAL DISAGREEMENTS
The Hospital policy concerning the resolution of
professional is included in Volume 2, Patient Rights section of Hospital
policies and is accessible through the Hospital intranet at http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital to
make sure the attached patient rights documents have not been revised.]
B8. Donation of organs, Tissues and Eyes
The Hospital policy concerning donation of organs, tissues
and eyes is included in Volume 2, Patient Rights section of Hospital policies and
is accessible through the Hospital intranet at http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital
to make sure the attached patient rights documents have not been revised.]
An End of
Life Resource Handbook is available on nursing units. The End of Life Resource
Handbook contains detailed protocols, forms, and resource material to
facilitate and support the essential processes for the staff in caring for the patient
and family at the end of life. End of Life Resource Handbooks are located in
all patient care areas in which deaths occur.
B9. informed decision making
The Hospital policy concerning informed decision making is
included in Volume 2, Patient Rights section of Hospital policies and is
accessible through the Hospital intranet at http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital
to make sure the attached patient rights documents have not been revised.]
B10. refusal of blood transfusions
The Hospital policy concerning consent and refusal of
blood and blood products is included in Volume 2, Patient Rights section of
Hospital policies and is accessible through the Hospital intranet at http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital
to make sure the attached patient rights documents have not been revised.]
B11. management of patient/family complaints
The Hospital policy concerning management of patient and
family complaints and grievances is included in Volume 2, Patient Rights
section of Hospital policies and is accessible through the Hospital intranet at
http://intranet.kumed.com.
[Before relying on the attached, check with the administration of the Hospital
to make sure the attached patient rights documents have not been revised.]
B12. Support services for patients who are deaf,
hard of hearing, or do not speak english
The Hospital policy describing support services for
patients who are deaf or hard of hearing and patients who do not speak English
is included in Volume 2, Patient Rights section of Hospital policies and is
accessible through the Hospital intranet at http://intranet.kumed.com. [Before relying on the attached, check with
the administration of the Hospital to make sure the attached patient rights
documents have not been revised.]
B.13. MORE INFORMATION ABOUT PATIENT RIGHTS AND THE
PATIENT SELF DETERMINATION ACT
In 1990 Congress passed the Patient Self-Determination Act
of 1990 (PSDA), landmark legislation dealing with the ethical and legal rights
of patients. In order to implement the requirements of this law, the committee
developed a comprehensive implementation plan elements of which are summarized
below. You should also refer to section
A.6. Advance Directives, B.1. Patients’ Rights, and B.9. Informed Decision
Making in this Handbook.
1. Information
Upon admission to the hospital each patient (or appropriate surrogate
if the patient is unable to receive the information) will be provided written
information concerning patient rights and advance directives. This document
contains the following: I) KUMC Patient Rights statement [Also included in this
handbook]; 2) a brief summary of the law and relevant Kansas Law regarding
advance directives; 3) "Advance Directives: What Are They?" prepared
by the Kansas Hospital Association; 4) an advance directive form which allows
for completion of both an "Advance Treatment Directive" and the
naming of a "Durable Power of Attorney for Health Care Decisions" on
the same form; 5) information designed to assist interested patients in
completion of the advance directive form; and 6) information about the Hospital
Ethics Handbook and this committee.
2. PSDA Record
Documentation of patient advance decision making compliance is completed by
the admitting nurse during admission assessment and included in the patient
medical record. The patient's admitting
nurse will document that the patient has been provided the written information
described above and ascertain if the patient has previously completed any
advance directive instruments. If the patient indicates he or she has an
advance directive, a summary of that form is documented as summarized by the
patient, pending receipt of the written document. The location of any advance directive
documents and notes that a specific party was asked to bring these documents to
the hospital is also documented. If the patient has not previously completed an
advance directive, but wishes to do so during the hospital stay, the nurse will
note on this form and an automatic consult to Social Services is made. If the written document is in a prior medical
record in the medical records department, an automatic request for the document
to be sent to the unit for inclusion in current record is made.
3. Document
Handling and Data Entry
If the patient has completed an advance directive, the admitting nurse will
request that this document be brought to the hospital as soon as possible. It
will be placed in the front of the unit chart until it has been reviewed by the
patient's physician and then placed in the "Legal Documents" section
of the chart. The admitting nurse (or unit clerk) will also enter information
into the hospital computer system regarding advance directives. The notation
"Advance Directive on File" and the date the document was completed
will be entered on the Nursing Interview Screen and become part of the
hospital's computer data system.
4. Assistance in Completion of Advance
Directives
The law does not require that patients complete advance directives and
prohibits discrimination against patients on this basis. However, once
informed, patients may wish to complete advance directives during their
hospital stay. An educational video titled "Living Choices" is
available to provide patients additional information regarding advance
directives.