End-of-Life Ethics: Benefits and Burdens

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NAB: This educational offering has been reviewed by the National Continuing Education Review Service (NCERS) of the National Association of Boards of Examiners for Nursing Home Administrators (NAB) and approved for 3 clock hours and 3 participant hours. Program Approval Number: 242004-17561-3-SS  
The National Continuing Education Review Service (NCERS) of the National Association of Boards of Examiners for Nursing Home Administrators (NAB) has approved the above named program for continuing education credit for the period 4/2/2004 through 4/1/2005.  For a listing of state boards go to www.nabweb.org  Print out this first page and enclose it with your CE certificate.

The goal of health-care is to promote health, to prevent disease and injury, to relief pain and suffering, and to avoid premature deaths.

 At the end of life, health-care should change from a curative model to a palliative model. In the curative model of medicine, death is thought of as a failure of the health-care provider to cure and to sustain life. The courts have often held that you cannot harm someone by keeping him or her alive. But there are times when that is the wrong remedy for a wrong.  In the palliative model of medicine, birth, illness and death are accepted as realities of life and the unnecessary suffering of the patient is considered a failure. The values of the patient are to inform medical treatment decisions.

We were all born and we all try to postpone death. Medical technology has created an environment where life, disease and death are often managed to fit the health system rather than to meet the desires of the patient.  Thus technology goes ahead of ethics. A machine, rather than the patient, determines the resulting quality of life. This raises many ethical issues.

1. Ethical Principles of Health

1.1 Respect for Individuals and their Dignity: Every individual has inherent worth, dignity and basic human rights.

1.2 Autonomy: Every individual has the moral and legal right to decide what will be done with him or her.

1.3 Privacy: Every individual has a right to be secluded or isolated from the view of others and to confidentiality.

1.4 Truthfulness: Every individual has the right to be told the truth.

1.5 Do no harm, do good: Every individual has the right to be treated well and not unnecessarily harmed or pained.

1.6 Ethical principles of health are an outgrowth of general ethical principles.

The following Principles of Ethical Conduct are an excerpt from Executive Order 12674 of April 12, 1989, as modified by Executive Order 12731. These Principles apply to all employees of the Federal Government.

Part I-Principles of Ethical Conduct, Section 101. Principles of Ethical Conduct. To ensure that every citizen can have complete confidence in the integrity of the Federal Government, each Federal employee shall respect and adhere to the fundamental principles of ethical service as implemented in regulations promulgated under sections 201 and 301 of this order:

1. Public service is a public trust, requiring employees to place loyalty to the Constitution, the laws, and ethical principles above private gain.
2. Employees shall not hold financial interests that conflict with the conscientious performance of duty.
3. Employees shall not engage in financial transactions using nonpublic Government information or allow the improper use of such information to further any private interest.
4. An employee shall not, except pursuant to such reasonable exceptions as are provided by regulation, solicit or accept any gift or other item of monetary value from any person or entity seeking official action from, doing business with, or conducting activities regulated by the employee's agency, or whose interests may be substantially affected by the performance or nonperformance of the employee's duties.
5. Employees shall put forth honest effort in the performance of their duties.
6. Employees shall make no unauthorized commitments or promises of any kind purporting to bind the Government.
7. Employees shall not use public office for private gain.
8. Employees shall act impartially and not give preferential treatment to any private organization or individual.
9. Employees shall protect and conserve Federal property and shall not use it for other than authorized activities.
10. Employees shall not engage in outside employment or activities, including seeking or negotiating for employment, that conflict with official Government duties and responsibilities.
11. Employees shall disclose waste, fraud, abuse, and corruption to appropriate authorities.
12. Employees shall satisfy in good faith their obligations as citizens, including all just financial obligations, especially those such as Federal, State, or local taxes that are imposed by law.
13. Employees shall adhere to all laws and regulations that provide equal opportunity for all Americans regardless of race, color, religion, sex, national origin, age, or handicap.
14. Employees shall endeavor to avoid any actions creating the appearance that they are violating the law or the ethical standards promulgated pursuant to this order.

The full Standards of Ethical Conduct for Employees of the Executive Branch are available on the Office of Government Ethics web site.

2. Advance Directives

2.1 An Advance Directive is a legal document to assure future health care choices. It is a document which states your choices about medical treatment or names someone to make decisions about your medical treatment, if you are unable to make these decisions or choices yourself. They are called "advance" directives because they are signed in advance to let your doctor and other health care providers know your wishes concerning medical treatment. Through advance directives, you can make legally valid decisions about your future medical care.

2.2 Federal law give every competent adult, 18 years or older, the right to make their own health care decisions, including the right to decide what medical care or treatment to accept, reject or discontinue. If you do not want to receive certain types of treatment or you wish to name someone to make health care decisions for you, you have the right to make these desires known to your doctor, hospital or other health care providers, and in general, have these rights respected. You also have the right to be told about the nature of your illness in terms that you can understand, the general nature of these proposed treatments, the risks of failing to undergo these treatments and any alternative treatments or procedures that may be available to you.

2.3 There may be times when you cannot make your wishes known to your doctor or other health care providers. For example, if you were taken to a hospital in a coma, would you want the hospital's medical staff to know what your specific wishes are about the medical care that you want or do not want to receive.

2.4 It is entirely up to you whether you want to prepare any documents. But if questions arise about the kind of medical treatment that you want or do not want, advance directives may help to solve these important issues. Your doctor or any health care provider cannot require you to have an advance directive in order to receive care; nor can they prohibit you from having an advance directive. You will receive medical care even if you do not have any advance directives. However, there is a greater chance that you will receive more treatment or more procedures than you may want. If you cannot speak for yourself and have not made an advance directive, your doctor or other health care providers will generally look to your family or friends for decisions about your care. But if your doctor or your health care facility is unsure or if your family members cannot agree, they may have to ask the court to appoint a person (called a conservator) to make those decisions for you. Source: California Advance Directive.

2.5 A person's expected and acceptable Quality of Life (QOL) may change with the aging process. Thus adjustments to desired care may be made from time to time.

Assessment Criteria (see Appendix D1-D3 in the original guideline document for assessment tools)

1. Determine the individual's age.
2. Assess the individual's primary language and ability to communicate about advance directives.
3. Assess individual's capacity to make health care treatment decisions.
4. Determine if the individual has an advance directive.
5. If yes, ask for a copy and document location of copy in health care record.
6. If no, assess individual's knowledge of advance directives.
7. Determine if the individual wishes to complete an advance directive.
8. If yes, refer to appropriate health care facility resources.
9. If no, document results of advance directive assessment in health care record.

Description of the Practice

If a Living Will has been completed and/or health care proxy has been designated:

1. Verify that the documents can be easily located in the patient's chart and are in close proximity to the patient (e.g. not in the records department or safety deposit box).
2. Ascertain if the attending physician/nurse knows of the document's existence and have a copy.
3. Determine if the designated health care proxy has a copy of the documents.
4. Establish that the document has been recently reviewed by the patient, attending physician/nurse, and proxy. If not, review document with patient so that you know what it means and the patient does also.

If a Living Will and/or durable Power of Attorney has not be executed:

1. Give the patient (and if appropriate, family or significant others) verbal, written, audio or video information about advance directives.
2. Determine if the patient would like to involve family or other significant individuals (e.g. homosexual partners, close friends, clergy) in discussions about advance directives.
3. Have a conversation with the patient (and others, as appropriate) about advance directives while being sensitive to the patient's values, culture, ethnicity, and religion when discussing end-of-life care issues. Feelings about these issues can substantially influence decisions to complete advance directives.
4. Be sensitive to the patient's (and other's) fears about death in discussions about advance directives.
5. Respect each patient's right not to complete advanced directives.
6. Inform patients (and others, as appropriate) that you will not abandon them or provide substandard care if they elect to formulate advance directives.
7. Know the health care agency's policy related to resolving conflict between the patient, family members, and significant others or the patient/family/significant others and health care providers. This may include consultation from the social service or psychiatric department, a patient advocate, or an ethics committee.
8. Help the patient execute an advance directive if requested.
9. Place a copy of the advance directive document in the patient's chart and make it available to the attending physician, nurse, and health care proxy or document the patient's desire to not complete an advance directive.
10. Make suggestions to patients about where to keep advance directives and to whom to give copies. Source: www.guideline.gov

3. Withholding Treatment

3.1  The benefits of a treatment may be longer life, comfort, relationships and the ability to communicate. The burdens of a treatment may be pain, suffering, technological dependence, isolation, immobility and emotional or spiritual distress.

3.2. The four common reasons why treatment may be withheld or withdrawn are the patients own choice, an undesirable resulting quality of life, the burdens outweigh the benefits, and the treatment just prolongs dying.

3.3 Such treatment may include among others nutrition, hydration, ventilation, CPR, dialysis, medication, radiation, chemotherapy and surgery. These life-sustaining treatments may be curative or palliative.

3.4. The decision to withhold or withdraw treatment permits the disease to progress on its natural course. It is not intended to cause death.

3.5 According to the ANA Position statement on Promotion and Comfort and Relief of Pain in Dying Patients, "nurses should not hesitate to use the full and effective doses of pain medication fro the proper management of pain for the dying patient. The increasing titration of medication to achieve adequate symptom control, even at the expense of life, thus hastening death secondarily, is ethically justified." Source: www.ana.org, 1997.

3.6 Some health-care providers seem to have a opio-phobia, a fear of administering opiates. Thus there may be an under-proscribing of opiates at the end of life.

3.7 There is a great disparity between the health professionals and the public in the importance attached to pain relief. This  has been known for a long time. "The relief of suffering, it would appear, is considered one of the primary ends of medicine by patients and lay persons~ but not by the medical profession." Source: Fric 1. Casgal, MD., F.A-C-P., "The Nature of Suffering and the Goals of M4edicine," NUM 1992; 306: 639-645. Reasons for under-treating pain do not constitute excuses for it: - "Not to relieve pain optimally is tantamount to moral and legal malpractice."  Source: CW JAAdfA 1998; 279-.1521-1522.  "To allow a patient to experience unbearable pain or suffering is unethical medical practice."  Source: Wanamr, at aL, "Tbe Physician's Responsibility Towards Hopelessly III Patients - A Second Look~ NFIM 1999; 320: 844449

The Commission believes that there are certain fundamental principles and policies that should be reflected in the rules or framework controlling the withholding or withdrawal of life sustaining medical treatment.

1. There must be a uniform approach and process to withholding or withdrawing life sustaining medical treatment across the province and in all health care institutions.
2. The uniform approach must apply to all decisions to withhold or withdraw life sustaining medical treatment whether in the form of Do-Not-Resuscitate (DNR) orders or other decisions.
3. The uniform approach must treat all citizens fairly and equitably and provide equal access to medically appropriate medical care to all without bias or favour. In particular equal treatment must extend to the elderly and persons with disabilities. Neither of those circumstances is a sign of terminal illness or impending death.
4. The decision making process must be clear and transparent and must be communicated clearly not only to the patient and his or her family but also to the public in order to facilitate a broad understanding of how these decisions are made.
5. Emphasis must be placed on the process for decision making rather than the formulation of specific rules which would purport to dictate the decision. The process must be designed to facilitate an agreement between the physician and the patient or his or her substitute decision maker. It should have the following features:
   • the process should be instigated by the attending physician;
   • the process should begin at the earliest appropriate time to provide an opportunity for considered and informed discussion and decision-making;
   • full and complete information must be provided by the attending physician to the patient/substitute decision maker about the nature of the patient's condition, prognosis, treatment options (including those that the physician may not favour) and the expected benefit or harm of those options;
   • a full and complete explanation by the attending physician why he or she believes that withholding or withdrawal of life sustaining medical treatment is medically appropriate;
   • a full and complete discussion between the attending physician and the patient of his or her personal, cultural circumstances and spiritual beliefs and concerns insofar as they are relevant to the decision at hand and welcomed by the patient;
   • a full and complete discussion between the attending physician and the patient of his or her wishes, concerns, expectations and preferred treatment options including consideration of a time limited trial of therapy;
   • a full consultation with the family of the patient unless such communication is prevented for some documented reason such as impracticality, breach of privacy or confidence;
   • full information and assurances to the patient that a withdrawing of withholding of life sustaining medical treatment does not amount to an abandonment of care and compassion and that palliative treatment will be provided.
6. Where a consensus cannot be reached between the physician and the patient or substitute decision maker about withholding or withdrawing life sustaining medical treatment resort should be had to other available informal dispute resolution procedures. Institutional facilitators and mediators such as ethicists, pastoral care workers and other qualified persons can assist in finding a consensus between the physician and the patient or substitute decision maker. In some circumstances, independent external mediators may be helpful. Every reasonable effort should be used to secure agreement in as informal and sensitive a process as possible.
7. Where there is disagreement between the physician and the patient or substitute decision maker on the appropriate course of action, the patient must be given an opportunity to secure an independent second opinion from a physician who is not a member of the patient's health care team and/or request that his or her care be transferred to another willing physician.
8. Where all preceding measures have failed to produce an agreement, the physician may, after an appropriate notice period, withhold or withdraw life sustaining medical treatment where such treatment would be medically inappropriate.
9. We do not favor a right to indefinite life sustaining medical treatment. The appeal of autonomous decision making and personal control of all end of life medical decision making is initially attractive but an unfettered right to life sustaining treatment may result in unreasonable demands being made for indefinite inappropriate medical treatment.
10. Final resort to the courts will remain available where the procedures designed to achieve consensus have irretrievably broken down. Source: http://www.gov.mb.ca/justice/mlrc/pubs/life_support.html 

3.9 Example of Treatment Withholding Research:

Withholding antibiotic treatment in pneumonia patients with dementia: a quantitative observational study. van der Steen JT, Ooms ME, Ader HJ, Ribbe MW, van der Wal G.

Institute for Research in Extramural Medicine, Amsterdam, the Netherlands. jt.van_der_steen.emgo@med.vu.nl

BACKGROUND: Pneumonia is a life-threatening disease in nursing home patients with dementia. Physicians and families face choices about whether to withhold antibiotics when patients are expected to die soon or when treatment may be burdensome. However, little information exists on what factors influence this complex decision-making process. OBJECTIVE: To identify factors associated with decisions on whether to withhold curative antibiotic treatment in patients with dementia who have pneumonia. METHODS: We performed an observational cohort study with 3-month monitoring for cure and death. Patients with pneumonia (N = 706) were enrolled in nursing home units for patients with dementia from all over the Netherlands (61 nursing homes). Characteristics of patients, physicians, and facilities were related to the outcome of withholding antibiotic treatment. RESULTS: In 23% of the patients, antibiotic treatment was withheld. The other patients received antibiotics with palliative (8%) or curative (69%) intent. Compared with the patients who received antibiotics with curative intent, patients in whom antibiotic treatment was withheld had more severe dementia, had more severe pneumonia, had lower food and fluid intake, and were more often dehydrated. In addition, withholding antibiotics occurred more often in the summer and in patients with an initial episode of pneumonia. Characteristics of facilities and physicians were unrelated to the decision. However, considerable variation occurred in how patient age, aspiration, and history of pneumonia were related to decision making by individual physicians. CONCLUSIONS: In the Netherlands, antibiotic treatment is commonly withheld in pneumonia patients with severe dementia who are especially frail. Understanding the circumstances in which this occurs can illuminate the international discussion of appropriate dementia care. Source: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12153379&dopt=Abstract
 

4. Do Not Resuscitate Orders

4.1 A DNR order by a physician states that if there is a cardiopulmonary arrest, resuscitation will not be started and is actually prohibited.

4.2  It may provide an opportunity for the patient, the family and the care-giver to discuss the benefits and burdens of other interventions.

4.3  "A do-not-resuscitate (DNR) order tells medical professionals not to perform CPR. This means that doctors, nurses and emergency medical personnel will not attempt emergency CPR if the patient's breathing or heartbeat stops. DNR orders may be written for patients in a hospital or  nursing home, or for patients at home.  Hospital DNR orders tell the medical staff not to revive the patient if cardiac arrest occurs.  If the patient is in a nursing home or at home, a DNR order tells the staff and emergency medical personnel not to perform emergency resuscitation and not to transfer the patient to a hospital for CPR.

4.4. When patients are seriously ill or terminally ill, CPR may not work or may only partially work, leaving the patient brain-damaged or in a worse medical state than before the heart stopped.  In these cases, some patients prefer to be cared for without aggressive efforts at resuscitation upon their death. All adult patients can request a DNR order.  If you are sick and unable to tell your doctor that you want a DNR order written, a family member or close friend can decide for you."

4.5  SB 715 (Henry/Deutschendorf) creates the Oklahoma Do-Not-Resuscitate Act. Under the act, a person may direct that life-sustaining treatment not be performed in the event of cardiac or respiratory arrest. Methods for making such a direction include notifying the attending physician, appointing a representative who may notify the attending physician, communicating with family members, health care providers, or others (such communication must meet clear and convincing standard), executing an advance directive for health care which makes the direction, or completing a do-not-resuscitate form. The bill provides a recommended do-not-resuscitate form and provides for revocation of a do-not-resuscitate consent. Immunity is provided for persons who carry out do-not-resuscitate consents and orders in good faith. Issuance of a do-not-resuscitate consent or order shall not impair, modify, or invalidate any policy of life insurance. Do-not-resuscitate forms, identification bracelets, necklaces, and cards will be available from the Department of Human Services. Source: http://www.oksenate.gov/publications/legislative_summary/LegisRevu97.dir/LRevu97Judi.html

4.6  VA PROTOCOLS

a. DNR protocols established by medical centers shall contain an introductory policy statement which sets the tone and delineates specific ethical, legal and medical considerations which are raised. The following items will be included in DNR protocols which are established:

(1) Specific definitions of terms or phrases used in the protocol, such as:
    (a) Attending physician,
    (b) CPR,
    (c) DNR,
    (d) Patient's representative,
    (e) Qualified patient,
    (f) Resuscitation, and
    (g) Terminal illness.
(2) A patient classification scheme to delineate the class of patients for whom a DNR order might be entered.
(3) A description of the role of the competent patient, and the role of the patient's representative in cases involving incompetent patients.
(4) Requirements for consultation, consensus, or committee involvement.
(5) Requirements for the DNR order itself, including who may write it, how long it will be valid and provisions for its review.
(6) Requirements for the accompanying note in the Progress Notes and who may write it.
(7) Requirements for flagging or otherwise highlighting the medical record in such a way as to indicate the entry of a DNR order therein.
(8) Requirements for other or additional indicated, appropriate medical care.
(9) A requirement that when resuscitation is withheld in situations other than those which are acknowledged in subparagraph 3(c), the Chief of Staff, or designee, shall certify that either a DNR order, or an order to implement a declaration entered pursuant to VHA Handbook 1004.2, was properly in effect at the time of death.

b. DNR protocols will incorporate the following:

(1) Definition of "Terminal Illness". "Terminal illness" shall be defined as a debilitating condition which is considered to be medically incurable or untreatable in terms of currently available technology, and which can be expected to cause death. "Terminal illness" definitions need not require that death be "imminent," and may include in their scope chronic conditions from which there is no hope for recovery.

(2) Patient's Role

(a) Competent Patients. In cases where the patient is alert and understands the implications of the diagnosis and prognosis, and the patient has expressed an interest in requesting that a DNR order be entered, the patient shall be instructed that entry of a DNR order must be preceded by discussions with the senior attending or staff physician in charge of the patient's care, and, if indicated, with mental health, social work, and/or nursing service staffs. The patient will be advised that discussions with family members, if any, may be desirable prior to deciding whether a DNR order will be considered; however, a patient's election not to seek the concurrence of family members, or to inform that of the decision, will be respected and honored. If a competent patient requests that a DNR order not be written or instructs that resuscitative measures should be instituted, no DNR order shall be written.

(b) Incompetent Patients. In cases where the patient is comatose or otherwise incompetent, and the patient has not executed either a declaration under VHA Handbook 1004.2, or a similar document under authority of State Law, a decision on entry of a DNR order shall be reached after consultation between the patient's representative and the physician. Since the entry of a DNR order is essentially a question regarding treatment, the provisions of VHA Handbook 1004.1 will govern the identification of the appropriate person to act as the "patient's representative" for purposes of this handbook. In cases where the patient's representative consents to entry of a DNR order and the requirements specified herein are met, a DNR order may be written. Should the patient's representative object to entry of a DNR order, no such order will be written. In the event that no person is available, or willing, to act as the incompetent patient's representative, and the treating staff (including the attending physician) conclude that entry of a DNR order is appropriate, consultation shall be undertaken with the medical center Director and/or Chief of Staff and Regional Counsel to determine whether the entry of a DNR order may be further considered.

(3) "Natural Death" Directives
(a) Declarations Under VHA Handbook 1004.2. If an incompetent patient has executed a declaration under VHA Handbook 1004.2 during a period of competency, and that declaration specifies that resuscitation shall be withheld in circumstances which include cases involving cardiopulmonary arrest, a DNR order may be entered, notwithstanding the absence of consent by the patient's representative, if the conditions specified in this handbook are met.
(b) State "Natural Death Acts." If a patient is unable, due to incompetency, to execute a declaration under VHA Handbook 1004.2, but resides in a State where "living wills" or similar written directives are legally permitted, the exercise of such rights by a patient, prior to the occurrence of a coma or incompetence, shall be considered as evidence of that patient's wishes regarding DNR orders. If the State Law authorized directive specifies that resuscitation shall be withheld in circumstances which include cases involving cardiopulmonary arrest, a DNR order may be entered notwithstanding the absence of consent by the patient's representative, if the conditions specified in this handbook are met and conditions specified by State Law which are not inconsistent with the provisions of this handbook, are met. Prior to entry of a DNR order in such circumstances, Regional Counsel shall be consulted.
(c) The fact that a VA patient may not have exercised rights recognized by VHA Handbook 1004.2, or by a similar provision of State Law, shall not be considered as an indication that the patient would not have wanted a DNR order written unless there is evidence of the patient's specific wishes in that regard.

(4) Consultation and Other Physician Involvement. The physician who is responsible for determining the propriety of a DNR order in a particular case is the senior attending or staff physician, not a house officer. Medical decisions regarding the patient's diagnosis or prognosis shall be reached by a consensus of the medical treatment team.
(a) In large medical centers, the medical treatment team will include the attending or staff physician, involved house staff, and consultants who may be assisting in the care of patient (oncologist, cardiologist, etc.).
(b) In smaller medical centers, where house staff is not involved with the patient's care and consultants are not readily available, the medical treatment team will include the patient's attending physician, the chief of the bed service (where the patient is located), or chief of the service to which the attending physician belongs, or the Chief of Staff.

NOTE: If there is doubt concerning the propriety of a DNR order or the accuracy of the patient's diagnosis or prognosis, a medical ethics or prognosis committee, or similar body, may be convened on an ad hoc basis to help resolve the problem.

(5) Entry of the DNR Order. After it has been determined that a DNR order is appropriate in a particular case and the foregoing requirements have been met, the order must be written or, at minimum, countersigned by the attending physician, rather than merely by a house office or resident, into the patient's medical record. NOTE: A verbal or telephone order for DNR is not justifiable as good medical or legal practice. Once the order has been entered, it is the responsibility of the attending physician to ensure that the order and its meaning are discussed with appropriate members of the medical center staff, particularly the nursing staff, so that all involved professionals understand the order and its implications.

(6) Progress Notes. At the time any DNR order is written, an accompanying note shall be made in the progress notes which includes, at minimum, the following information:
   (a) The diagnosis and prognosis;
   (b) The consensual decisions and recommendations of the treatment team and consultants, with documentation of their names;
   (c) An assessment of the patient's competency; and
   (d) The competent patient's wishes or, in cases involving incompetent patients, the wishes of the patient's representative and documentation of the relationship of the patient's representative to the incompetent patient.

NOTE: If a competent patient has requested that family not be involved in or informed of the decision, the patient's decision and request for confidentiality shall be documented in the medical record by a disinterested third party, not a member of the treatment team, e.g., a patient ombudsman or representative, a representative of Medical Administration Service, etc.

(7) Review of the Order. The protocol shall specify the process for review of DNR orders, and how often reviews should be carried out. The protocol shall specify that the attending physician must review the DNR order if the patent's prognosis significantly improves or if the competent patient, or if the patient is incompetent, the patient's representative, requests same.

(8) Related Medical Care. DNR orders are compatible with maximal therapeutic efforts short of resuscitation. The VA patient for whom a DNR order has been entered is entitled to receive vigorous support in all other therapeutic modalities. It may be appropriate to write onto the order sheet those medical efforts which will be maintained to relieve suffering and assure comfort, including:
   (a) Basic nursing care (body cleanliness, mouth care, positioning, etc.);
   (b) Adequate analgesia;
   (c) Suction;
   (d) Intake (including hydration); and
   (e) Palliative oxygen.
   NOTE: The entry of a DNR order does not justify ignoring the patient or proving less than humane care and concern for the patient's welfare and comfort.

(9) Physicians. Physicians who conclude, in good conscience and sound medical judgment, that they are unable to comply with the wishes of the patient (or patient's representative) concerning resuscitation, shall arrange to transfer care of the patient to another equally competent physician who is capable of appropriate and skilled care and who is able to comply with the wishes of the patient or patient’s representative.

(10) DNR Orders in the Operating Room and Peri-Operative Period. A DNR order does not preclude anesthesia or surgery. To preserve the right of the patient to choose among treatment options offered, the patient, or the patient's representative, and the health care team must review existing DNR orders, or other treatment limiting documents, prior to any procedures requiring anesthetic care. Local policies which automatically suspend DNR orders or other treatment limiting documents (advance directive, see Ch. 31, par. 304, and Apps. 31A. 31B, and 31C for definition, policy and procedures regarding an advance directive) without discussion with the patient, are not consistent with the patient's right to self-determination, or with current informed consent procedures; they should be reviewed and revised.

(a) The attending physician or surgeon must discuss with the patient any proposed suspension of the DNR order or advance directive during the operative and peri-operative period. This discussion should focus on those aspects of resuscitation or other treatment intervention that are specifically proscribed in the advance directive. The attending physician must document the discussion and any agreed upon suspension of specific instructions contained in the original DNR, or advance directive in the patient's medical record.
(b) Where possible, the attending physician, surgeon, and anesthesiologist should be in concurrence on these issues. If the patient's request for limitations of care conflict with generally accepted medical or ethical standards of care, the attending physician should consult with the Chief of Staff, or the ethics advisory committee. If any one of the physicians feels the patient's wishes are incompatible with their own moral views, they may decline to participate in the care of the patient; in this case the physician should delegate their responsibilities to another appropriate physician.

5. ADDITIONAL CONSIDERATIONS

a. DNR protocols can be developed to deal effectively with the trauma and suffering which frequently accompany the circumstances in which such orders are written. These protocols must give fair consideration to the:
(1) Patient's medical needs,
(2) Social and psychological needs of the patient's family,
(3) Legal rights and responsibilities of physician and patient, and
(4) Professional needs of the medical center administration and staff.

b. With assistance from Regional Counsel sound protocols shall be developed and implemented.

c. Under no circumstances shall DNR orders be written to facilitate request for "assisted suicide" or voluntary euthanasia.

d. "Do Not Resuscitate" does not mean that the medical staff will take any affirmative steps to hasten the patient's death. All parties, including all levels of care providers, shall provide all forms of appropriate therapeutic care, and shall strive to improve the range of acceptable therapeutic options made available to the dying patient.

5. Euthanasia and Assisted Suicide

5.1 Euthanasia is intentional causing of a painless and easy death of a patient suffering from an incurable or painful disease. It is usually the injection of a lethal dose of a medication which then causes the patient's death. The American Nursing Association Code of Nurses prohibits nurses to participate in it. Source: www.ana.org, 1997.

5.2 Assisted suicide is the practice of a person other than the patient providing the medication to a patient knowing that that patient will use it to commit suicide. The patient uses the provided meditation to voluntarily ends his or her life.

5.3 In 1994 and 1997, Oregon voters approved PAS to give individuals the right for assisted suicide. This has been challenged in the Supreme Court and the Court stated that the Constitution is silent on that subject.  Appropriate palliative care may eliminate the suffering of patients and eliminate the need for assisted suicide. 

5.4 "Honoring the refusal of treatments that a patient does not desire, that are disproportionately burdensome to the patient, or that will not benefit the patient can be ethically and legally permissible. Within this context, withholding or withdrawing life-sustaining therapies or risking the hastening of death through arguments aimed at alleviating suffering and/or controlling symptoms are ethically acceptable and do not constitute active euthanasia. There is no ethical or legal distinction between withholding or withdrawing treatments, though the latter may create more emotional" Source: ELNEC Curriculum Module 4: Ethical/Leg#] Issues Page M4-44 0 AACN & COH, 2000

5.5 "Euthanasia is defined and characterized in many ways, thus clarification of language is important. Euthanasia is often called "mercy killing" and has been taken To mean the act of putting to death someone suffering from a painful and prolonged illness or injury. Active euthanasia means that someone other than the patient commits an action with the intent to end the patient's life, for example injecting a patient with a lethal dose. Sometimes euthanasia is subdivided into a situation in which a patient consents to euthanasia (voluntary) or a situation in which a patient refuses euthanasia (involuntary) or a situation when a patient is unable to consent to euthanasia (nonvoluntary). Active euthanasia is distinguished from assisted suicide. In active euthanasia someone not only makes the means of death available. but serves as the direct agent of death. For the purpose of this statement, the term active euthanasia refers to those actions that are inconsistent with the ANA Code for Nurses and are ethically unacceptable, whether the euthanasia is voluntary, involuntary or nonvoluntary." Source:
ELNEC Curriculum Module 4: Ethical/Leg#] Issues Page M4-44 0 AACN & COH, 2000

5.8 Response to Netherlands Euthanasia Legislation

Gregor Wolbring, a German biochemist living in Canada, and a leader in the international anti-euthanasia movement, points out that the new law has "only legalized something which was already in practice for a long time." However, Wolbring adds, the law allows physicians even greater freedom, which could compromise the the rights of disabled and older people. In the past, safeguards purportedly allowed euthanasia only for patients who were terminally ill and suffering untreatable physical pain. "But a lot of that was broken over time," says Wolbring. "Now you can also get euthanasia if you are emotionally having a problem, or if you are incurable. The safeguards they had ten or fifteen years ago, don't exist anymore."

The law's lax requirements have drawn criticism from disability-rights advocates around the world. The U.S. group Not Dead Yet denounced the action. "The Dutch experience with euthanasia is best described as one of increasing carelessness and callousness over the years. The strict guidelines under which euthanasia was decriminalized for many years have been widely ignored, according to published reports in the Netherlands," said Stephen Drake, a research analyst for Not Dead Yet.[*] "In spite of admitted widespread abuses, only a handful of doctors have even been prosecuted for violating guidelines."

Not Dead Yet board member Carol Cleigh added, "Holland has shown us how easy it is for euthanasia to become institutionalized and routine. Nonterminal disabled adults and infants are euthanized routinely in Holland, often without consent."

German disability organizations are fighting similar developments, adds Miles-Paul "In Germany the pressure for disabled people and elderly people is growing immensely, to not be a burden on society, and to think about euthanasia," Miles-Paul says. He is worried that the recent Dutch action may build momentum for the pro-euthanasia movement. "For us it's much harder now to argue against euthanasia if our neighbour-country has legalised it," he says. "Therefore the pressure will grow on disabled and elderly people."

Wolbring sees the escalating euthanasia debate as symptomatic of modern society's tendency to "medicalize and commodify humans," and to see the disabled individual as "a resources allocation problem." He places part of the blame with the philosophical field of bioethics which, beginning in the 1970s, "was developed by people with a very medicalized, negative view of disability." The bioethics philosophy, according to Wolbring, has lent academic legitimacy to the movement toward euthanasia. "They have those articles out where a person can actually have a negative value of quality of life -- death is zero, and living with disability is below zero. It's actually in an academic framework, a mathematical formula. So if you have a disability, you are below zero, your life is worse than death. And then death is, therefore, an improvement."

Erika Feyerabend, of the German anti-bioethics group Bioskop, says that in Germany, "there will never be legaization like in Netherlands." But she adds, "the movement for assisted suicide is getting stronger" throughout Europe. Proposals to legalized euthanasia, based on "the so-called Dutch model," are currently being considered in Belgium and Switzerland, according to Feyerabend.

Over the past decade disability-rights groups, particularly in North America, have begun campaigning against assisted suicide and euthanasia. Many activists see these practices as dangerous to people with disabilities, because they may create a double standard in which healthy nondisabled people seeking suicide are offered support and counseling, while people with disabilities and health problems are seen as "better off dead." Also, many disability-rights advocates argue that it is wrong offer death as a solution to people whose problems stem largely from an unsupportive, inaccessible society. As long as support services and other necessary resources are still unavailable to many disabled people, these activists say, euthanasia should not be an option. Source: http://www.disabilityworld.org/05-06_01/gov/euthanasia.shtml
 

6. Medical Futility

6.1 At times is is questionable if a given treatment is really beneficial. Medical futility usually deals with issues of benefits versus burdens of treatment and the communication of that information. The benefits and burdens should be analyzed from the patient's perspective. An examination of prognostic data may help determine if a given treatment is futile or not.

6.2 The question for any treatment should be: "How are we doing this for?" Is this treatment mainly for the benefit of the patient, the health-care professional, or the family? Treatment should be given only for the benefit of the patient. The patient's culture and religion may be important in this matter.

6.3 Some health-care providers feel that treatment of terminally ill patients may be considered futile if the likelihood of success is 20% or below. This is an issue that must be dealt with on a case-by case basis.

There are situations in which health care resources legitimately may be withheld. One example is in a case of "medical futility" where further intervention would be of no value. Cases of "medical futility" in this sense rarely if ever arise in the treatment of mental illness and substance abuse. However, there are situations where further intervention may be of very limited value, and may not perceptibly alter outcome. In such cases, is there an obligation to withhold resources to make them available to other people?

James Sabin (1994), a psychiatrist who has written frequently and well on the ethical challenges confronting behavioral health care providers in the era of managed care, suggests that treatment providers must look beyond the needs of the individual to societal interests. He points out that the Preamble to the American Medical Association and American Psychiatric Association's Principles of Medical Ethics states that "a physician must recognize responsibility not only to patients but also to society." He argues that this creates a duty of "stewardship" regarding finite public resources, and that fee-for-service reimbursement previously enabled providers to ignore the responsibility to act as stewards. In his view, reconciliation of the conflicts between acting as fiduciary and as steward is the core emerging ethical question in managed care.

In addressing this issue in practical terms, Sabin urges the clinician to address openly and honestly with a client the costs of one alternative form of care versus another. His suggestion that caregiver and client engage in an ongoing dialogue is useful. It mirrors Jay Katz's view of informed consent as a conversation between treater and patient, in which the parties bring their respective strengths to the treatment relationship (the caregiver's professional knowledge, the client's self-knowledge) in order to reach the best possible outcome for the client. However, it should also be noted, as Sabin acknowledges, that most training of health care professionals focuses on the fiduciary responsibility to the individual client, not the notion of stewardship of a pool of finite resources. In addition, as the earlier discussion makes clear, the courts continue to insist on the primacy of the fiduciary duty to the individual; at this point, it is difficult to imagine a court endorsing a decision by a clinician to forgo a particular treatment for a client with significant needs based on concerns about the impact of the cost of that treatment on the prospective availability of resources for others enrolled in the same plan. In short, balancing the obligations of the fiduciary and the steward in a satisfactory way seems difficult in the current legal and ethical environment. It may be, as Sabin suggests, that "once we finally recognize and truly accept the need to integrate fiduciary and stewardship values and to work constructively with the inevitable tensions that arise, we will be able to get down to practical implementation of ethical approaches." However, attaining that outcome will require considerably more work by clinicians, managed care plan administrators, and others concerned with the overall allocation of health care resources.

7. CASES FOR PERSONAL STUDY

7.1  "Joleen Wright"

"This case, which draws on committee members' experiences in caring for older people with varying problems, illustrates the difficulties that clinicians face in making decisions for patients who are not fully competent mentally and who have no family surrogate to act on their behalf

Joleen Wright, an 87 year-old woman living in a nursing home, had been pleasantly convivial and moderately demented for some time. No family or friends were known. It was very hard to discern her preferences, as she "lived in the present" and did not trouble herself about future possibilities. She had chronic hypertension and hearing and motion deficits. Gradually, over a few weeks, she started doing "poorly," walking less, eating less, and seeming more distant. Over the next two weeks, a comprehensive evaluation in her nursing home setting turned up very little. Blood tests, physical exams, and chest x-rays were all normal, but she then became short of breath and was hospitalized. By the time she arrived at the emergency room, her blood pressure had declined to dangerous levels. She had mild problems with oxygenation, probably due to pulmonary edema, and was started on monitoring and careful fluid balance. Within 24 hours, she had multiple interventions (e.g., IV, cardiac monitor, urine catheter) for monitoring and treatment and was restrained in bed to keep the connections in place. Her skin was breaking down on her shoulder blades. She was able to indicate "yes" or "no" to questions about her comfort but showed little insight or attention. No definite reversible diagnoses surfaced despite appropriate work-up. Her condition worsened, and she faced the need for mechanical ventilation. The care team anguished over whether to continue intrusive care in the intensive care unit in order to establish a clear diagnosis or to shift toward a primarily palliative approach. Her condition continued to deteriorate, and she became minimally responsive. After a team meeting, the care team decided to institute hospice-type care and not to seek a court's involvement in getting a guardian. Joleen Wright died comfortably 36 hours later. Because no consent to autopsy could be obtained, the diagnosis remained a mystery.

Discussion Questions:

1. Should age be a deciding factor in the provision of care? Why or why not?_________________________________________________________

2. Should we allow people to die from aging without knowledge of a primary terminal disease process?_________________________________

3. What care would you want if this were you? How do your personal values influence your preferences?"_________________________________

7.2 "Paul Bates"

"Some people die unable to communicate and without a family member or other person who knows them to make decisions on their behalf This case is adapted from a hypothetical teaching case used in an ethics seminar (S. Tolle, Oregon Health Sciences University, personal communication).

Paul Bates was a 57 year-old homeless man brought to the emergency room by a "friend" who dropped him off and left. In the emergency room, he provided a history of weight loss, cough, fever and chills. He said that he had not previously received care in the community. After examination and testing, he was diagnosed with "necrotizing pneumonia." Shortly after admission, he got out of bed unobserved and was found unconscious in cardiac arrest. He was resuscitated after intubation, fluids,-and 20 minutes of external cardiac massage. During the next 24 hours in the medical intensive care unit, Mr. Bates' condition deteriorated with evidence of septic shock, and then he became comatose. Calls to shelters, the police department, social services agencies, and other hospitals failed to uncover any family members or friends who could act as a surrogate. After five days, physicians decided to stop life support, and Paul Bates died shortly thereafter.

Discussion Questions:

I. How could a conversation on advance directives upon admission to the ER have changed this man's experience?________________________

2. What burden fell on the health care team because no advance directives or patient wishes were documented?____________________________

3. What disciplines could have been involved in making decisions about this patient's care?"____________________________________________

Source for above two cases and discussion questions: Field & Cassel. (1997). Approaching Death: Improving Care at the End-of Life. Washington, D.C.: National Academy Press, p. 53-58.  ELNEC Curriculum Module 4: Ethical/Legal Issues Page M4-25 and 27  AACN & COH, 2000

8. Library

Explore some of these sites to gain a rounded view on the topic.

Advance Directive:   http://www.ves.org.uk

Withholding of Treatment: http://www.linacre.org/wwt.html  

DNR:  http://wings.buffalo.edu/faculty/research/bioethics/dnr-p.html  

What is Ethics?   Ethics

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