Eroding Patients' Rights

by P J King, RN
Chairman, Bioethics Committee
Pro-Life Wisconsin

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If you've been admitted to a hospital any time in the last five years, you've been asked whether you have an "advance directive". The Patient Self-Determination Act of 1990, which went into effect in December of 1991, requires all hospitals, nursing homes, and hospices to inform patients upon admission of their right to sign such a document. All of us have heard of a living will or durable power of attorney for health care. I venture to guess that most of us do not know what they really are.

What we are told we want to avoid at all costs in this day of high-tech health care is "being hooked up to a bunch of tubes and machines" should we become very ill. To be thus treated is appallingly undignified. In order to protect ourselves from being degraded in this manner, we are told, we should sign a living will or appoint a power of attorney for health care. If we don't, we may find ourselves the recipients of treatment we don't want.

It is vitally important to understand this: There is no law, no medical society, no religion, no church, and even no pro-life organization which insists on forcing a dying person to be kept alive by heroic or burdensome means. You need no advance directive to protect yourself from unwanted treatment. You (or your family members if you are unable) need only refuse it. The American Medical Association Code of Medical Ethics says that "physicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting their patients."

At least two things need to be understood about living wills. First, they are not about giving patients control over their health care; they are about taking away decision-making authority and giving it to the physician. A standard living will focuses on just one option -- the rejection of medical care.

Secondly, we need to be aware that living wills do not protect patients; they protect doctors. A living will gives the physician immunity from civil or criminal liability for withholding or withdrawing treatment. Repeatedly court cases have illustrated that, once freed from liability, some doctors are willing to deny ordinary care--even food and water--to severely handicapped people who are not dying.

On the surface, a living will seems harmless enough. Below is the declaration from one such document:

If I should have a terminal illness and if I am no longer able to make decisions regarding my medical treatment, I direct my attending physician to withhold or withdraw treatment that only prolongs the dying process and is not necessary to my comfort or to alleviate pain.

This is the only part most people see. The laws and policies governing the use of living wills, however, explain how they are to be interpreted. These, few see. The U.S. Veterans Administration [Policy M-2, Part I, Chapter 31, 1991], for example, defines "terminal illness" as a "debilitating condition which is medically incurable ... and which can be expected to cause death ... [and] includes but is not limited to conditions where death is imminent, as well as chronic and debilitating conditions from which there is no reasonable hope of recovery." Such a definition would allow for the removal of life-sustaining treatment from persons with heart disease or diabetes. The "attending physician" is the physician responsible for caring for the patient at any given moment. "Treatment" is any intervention performed or ordered by the physician. Such interventions may include food, fluids, antibiotics, or insulin for a diabetic.

Living wills empower physicians, not patients. With a living will, the physician need not even consult with a patient's family regarding a non-treatment decision. Even if he does, he is under no obligation to follow their wishes.

A durable power of attorney for health care (DPAHC) provides for the appointment of another person to make medical decisions should the patient become unable to do so for himself. Because they share many of the features of living wills, they will not be discussed here at length. As with living will legislation, DPAHC laws allow life-sustaining treatment to be withdrawn from incompetent patients (in this case, at the request of their proxies), and protect physicians from civil or criminal liability for following proxies' instructions.

The concept of advance directives did not come about in a vacuum. Nor was it a product of human rights advocacy, as we are often led to believe. The living will was the brain child of the euthanasia movement and continues to be pushed by "right-to-die" proponents.

The first living will document was developed in 1967 by Luis Kutner for the Euthanasia Society of America (now called Choice in Dying) for the purpose of gaining public acceptance of euthanasia. A living will bill was first introduced to the Florida state legislature in 1975. The bill's author argued that the law could save Florida $5 billion if 90% of the state's mentally ill and mentally retarded were "allowed" to die. The Association for Retarded Persons and other groups defending the mentally impaired fought the bill, preventing its passage at that time. After a few years the offensive argument was forgotten, and a living will bill passed.

Choice in Dying (CID) has also been active in strengthening the Patient Self-Determination Act of 1990 (PSDA), working closely with Senators Danforth and Moynihan, the original sponsors of the bill. In 1994 CID staff conducted a briefing for all senators and their staff concerning "the role of advance directives within health care reform." President and Mrs. Clinton have also been active in pressing for people to sign living wills to control health care costs. As the President said in an interview with NBC's Tom Brokaw, signing living wills was "one way to weed some of them out."

The PSDA emerged amidst talk of scarce medical resources, health care rationing, and concern about the "graying" of America. In 1987, Dr. Otis Bowen, Secretary of HHS, testified before the Senate Finance Committee that the only way to attack high health care costs was to encourage Americans to write living wills. In 1990 the PSDA was passed as part of the Omnibus Budget Reconciliation Act.

Even supporters of living will legislation acknowledge problems. In the 12/5/92 issue of The New England Journal of Medicine (pp. 1666-1671) sixteen living will advocates reported "Sources of Concern about the Patient Self-Determination Act." Among these are:

  1. Discussion of advance directives takes too much time and requires special training and competence [from physicians];
  2. Treatment directives are not useful, because patients cannot really anticipate what their preferences will be in a future medical situation and because patients know too little about life-support systems and other treatment options;
  3. Treatment-directive forms are too vague and open to divergent interpretations;
  4. The incompetent patient's best interests should take precedence over even the most thoughtful choices of a patient while competent;
  5. Even if a directive is valid in all other respects, it is not a reliable guide to treatment because patients may change their mind.
The sixteen signers also criticized appointment of proxies:

  1. The appointed proxy may later seem to be the wrong surrogate decision maker;
  2. The proxy may make a treatment choice contrary to the patient's treatment directive, claiming that the proxy appointment takes precedence over the directive;
  3. The proxy [or, for that matter, the treatment directive itself] may make a decision with which the physician or institution disagrees.

The PSDA has created some confusion regarding interpretation. American Medical News, in its 5/17/93 issue (pp. 1, 46), reported two such cases:

In one, staffers at a New Hampshire nursing home were chastised by relatives of a patient whom staffers saved from choking to death. ... The other case involved a Yakima, Wash., nursing home resident who died after being accidently given medication intended for another patient. The error was discovered almost immediately. But the patient's physician refused to correct the mistake, citing the woman's advance directive barring the use of 'heroic measures' to keep her alive. ... Some intensive care specialists say they've seen colleagues interpret the mere existence of a living will as authorization to stop treatment or provide only minimal care.

In view of the dangers inherent in living wills, some well-intentioned folks have written Christian or pro-life versions. The result can be likened to tying a string around a rattlesnake's snout before you take it to bed with you. The nature of this beast is to sabotage informed consent, taking rights to reasonable medical care away from patients. Living wills were never intended to serve patients. They are driven, rather, by the "needs" for physician immunity, cost containment, and legalized "aid in dying."

The most obvious alternative to signing a living will or appointing a durable power of attorney is to do nothing. This is, in my opinion, a viable option ... at least until some future time when a living will or DPAHC might be required of all of us. (Already, suggestions have been made in high places that they be required of certain categories of people.)

Another option is to have a frank discussion with someone you trust and with your physician, in which answers to questions about treatment options are asked and answered. In addition, you might communicate your values and desires in a letter, giving a copy into the keeping of a trusted relative or friend and another to your physician to be kept on file and referred to as needed. There are at least three disadvantages to this choice. No protection from liability for carrying out your choices is guaranteed to the physician, and some may be unwilling to follow the directions of a letter.

Secondly, health care providers may not be comfortable accepting and following directives in an "unofficial" document such as a letter. Finally, this option may be unattractive for a person who has difficulty constructing a written account of his values and preferences.

At least two organizations which do not support euthanasia provide prepared documents that are not living wills, and which may simply be signed after reading and entrusted to the persons mentioned above. The Center for the Rights of the Terminally Ill (CRTI) distributes a "Patient Self-Protection Document" (PSPD). Quoting from their literature:

This is not a living will. Like a Durable Power of Attorney for Health Care, it enables the signer to name a trusted family member or friend as the 'agent' to make medical decisions if he/she is unable to do so. But it differs from other DPAHCs in that it: (1) explicitly defines and prohibits euthanasia, (2) specifies that nutrition and hydration are to be provided unless one is unable to assimilate food and fluids, (3) specifies that the signer is to be provided with ordinary nursing care and medical care, including pain relief and comfort care, and (4) does not confer immunity on any physician, health care provider or institution who will not honor these instructions."

To obtain a PSPD, write to the address below (a donation to cover cost is requested):
CRTI, Inc.
P.O. Box 54246
Hurst, TX 76054
(817) 656-5143.

The International Anti-Euthanasia Task Force provides a similar document, the Protective Medical Decisions Document (PMDD). It is not a living will.

Similar to the PSPD, it resembles a DPAHC, but differs from that directive in that it:

Explicitly defines and prohibits euthanasia.

Specifies that nutrition and hydration are to be provided unless death is inevitable AND truly imminent so that the effort to sustain life is futile or unless one is unable to assimilate food and fluids.

Specifies that the signer is to be provided with ordinary nursing and medical care, including pain relief and comfort care.

Confers immunity on the agent(s) who acts in accord with the instructions but does not confer immunity on any physician, health care provider or institution acting negligently or in bad faith.

The PMDD can be obtained by writing to:
IAETF
P.O. Box 760
Steubenville, OH 43952
phone (614) 282-9953
fax (614) 282-0769

I contributed a donation of $3 for mine.

Living will and DPAHC laws allow for self-written as well as for the two documents mentioned above, so they would stand up in court. (Even vaguely remembered conversations occurring years previously have held in cases such as Cruzan.)

In a society where God and religious values have been banished from the public square, it is not wise to sign any document which specifies conditions under which you would rather be dead. Rather than seeking to insure the so-called "right to die", we should be working for the right of all persons to live with dignity, until the moment of natural death. Justice, both human and Divine, demands no less.

[Senander, p. 42]

RESOURCES

Melodie Schlenker Gage, "The End of Life: A Time to Sort Fact From Fiction," AUL Insights, vol. 3, no. 1 (2/92), pp. 4-5 and "Formulating the Future: The Role of Advance Directives," same issue, pp. 14-15.

"The Living Will: Just a Simple Declaration?" IAETF, 1992

Mary Senander, The Living Will -- Expansion or Erosion of Patients' Rights? (Catholic View Edition), The Leaflet Missal Company, St. Paul, MN, 1993.

Mary Senander and Julie Grimstad, "Patient Self-Determination Act of 1990" (publication PSDA-1), CRTI, 1994.


Posted 6 Sep 2000.

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