The University of Kansas Medical Center

HOSPITAL ETHICS HANDBOOK, 5th Edition, (revised December 2002)

 

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).

 

TABLE OF CONTENTS

A. Policies and Guidelines adopted by the Ethics Committees

1. Accessing the Ethics Committees

2. Ethics Committee Mission Statement

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

B. Policies and Guidelines adopted by other KUMC Entities

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

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A. Policies and Guidelines adopted by the Ethics Committees

 

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:

 

A.  Education

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.

 

B.  Policy Review and Development

 

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.

 

C.  Case Review

 

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 Medical Center shall be ex-officio, non-voting members.  The committee will also identify and nominate for appointment at least one community representative who is not an employee of the Medical Center.

 

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.      Educational Functions

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 Midwest Bioethics Center, and participate in continuing educational programs for ethics committee members as feasible.

 

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.

 

B.      Policy Review and Development Functions

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.

 

C.      Case Review

 

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 Medical Center. Ex-officio members will include the Chair of the Department of Pediatrics; Chief of the Medical Staff or designee; and a representative of the Office of Legal Counsel. Members will be appointed for a two year renewable term by the Chief Operating Officer of the Hospital.  Members must attend at least five of the committee’s regularly scheduled meetings each year.  Failure to do so will constitute resignation and the vacancy will be filled by appointment of a new member. The committee shall recommend individuals for Chair and Vice-chair of the committee (or two co-Chairs) from amongst its members.  Individuals recommended should have served at least two years on the committee.

 

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.

 

 

A6. ADVANCE DIRECTIVES

 

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 Medical Center. One of the major goals of this policy is to encourage patients and their health care providers to make plans regarding treatment in situations in which patients are likely to lose the capacity to participate in decision making. Discussion and planning are particularly essential when patients are diagnosed as having conditions that may eventually raise questions about limitation or termination of certain forms of treatment.

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 Kansas in its "Natural Death Act" [65-28,101 65-28,109; 1979] recognized the "right of an adult person to make a written declaration instructing his or her physician to withhold or withdraw life-sustaining procedures in the event of a terminal condition." The law additionally stipulates a number of procedures that must be followed in order that a "declaration" (Living Will) be legally valid. Although a "qualified patient" may include other specific directions, the declaration must be "substantially" in the form provided in the law. It is important to note that at the present time this is the only legally valid form of advance "treatment directive" in the State of Kansas. Its use is limited to adults "who have been diagnosed and certified in writing to be afflicted with a terminal condition by two physicians who have personally examined the patient."

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 Kansas an individual may complete a "Durable Power of Attorney for Health Care Decisions" (KSA 58-625; 1990) as a mechanism for designation of a surrogate decision maker. This law allows the individual ("principal") to designate another as their "agent" for making health care decisions "upon the disability or incapacity of the principal." "All acts done by an agent . . . have the same effect as if the principal were competent and not disabled." This law allows an individual to convey to the agent a broad range of authority including, but not limited to the following: to consent, refuse consent or withdraw consent to any care, treatment, service or procedure; to make all necessary arrangements regarding admission to a health care institution; to employ or discharge health care professionals; and to have access to information including all medical and hospital records. The law also requires that the document be in substantially the form of a model document included in the law.

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.

 

A7. GUIDELINES FOR “DO NOT RESUSCITATE” (DNR) ORDERS

 

I. Rationale and Objectives

The utilization of cardiopulmonary resuscitation (CPR) has become routine in almost all hospitals in the United States. In fact, it is one of the few medical interventions which can be undertaken without a physician's order. Yet, when effectiveness of CPR is measured in terms of the patient's surviving to the point of discharge from the hospital, studies of CPR of hospitalized patients demonstrate only a 5% to 20% success rate. This rate is even lower in select patient populations such as those with metastatic cancer, chronic debilitating illness or multiple organ failure.

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.

III. Procedures for Implementation

A. Guidelines for Decisionmaking

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.

B. DNR Orders

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.

C. Documentation

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.

D. Review, Renewal and Revocation

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.

IV. Related Issues and Policies

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.")