Autonomy and the terminally ill patient

Introduction

Autonomy is the right to choose, not an unfettered right to demand. However, where there is a duty to treat by the physician, there is a right by the patient to choose to be treated and an expectation in law and in ethics that it will be given. A terminal illness in itself does not affect autonomy or the right to choose. The patient at the end of life has no fewer rights than a healthy person.

Communication 

If the patient is capable and communication is possible, autonomy can be exercised. There is a presumption of capability. Capable, rather than competent or capacity, is the word used in the tetralogy of health care acts that came into force in British Columbia on 28 February 2000.[1-4] These words and their antonyms are, in practise, used interchangeably to describe whether the adult patient can make a health care decision. Doing that poses no difficulty provided the statutory tests are followed.[2] For example, capacity or competence or capability to make a decision requires the patient understand (among other tests) the “risks and benefits of the proposed health care....”[2]

Capable people can exercise their autonomy on health care issues at any time; those who lack capability cannot. This is a particular concern for the terminally ill patient. An advance directive, a direction made by the patient when capable, is a means by which the autonomy of the patient can be exercised at a time when he or she lacks capability to make decisions. In most provinces it can be done by way of an instructional advance directive (living will), a proxy advance directive (durable power of attorney), or a combination of the two.[5] The instructional advance directive tells the physician what the incapable patient wants or does not want in health care. The proxy advance directive authorizes another person to make the health care decisions. Although there is no obligation to give inappropriate treatment, there is in most provinces both a legal and ethical obligation not to treat if that is what is provided for in the instructions.

In British Columbia, the Representation Agreement Act[1] governs advance directives. If the patient has made a representation agreement (a combination of an instructional and proxy advance directive), and if it provides for health care, then the representative under that agreement makes the health care decisions. The effect of the Representation Agreement Act and Consent Act is that instructional advance directives by themselves are not legally binding and cannot be legally relied upon in British Columbia. They can only be honored when they are confirmed by a representative or by a temporary substitute decision-maker appointed under the Consent Act.[2] However, the Health Care Providers Guide to Consent to Health Care[6] says that where health care is required in an urgent or emergency situation and there is no temporary substitute decision-maker or representative available, then provided the instructional advance directive clearly applies to the health need and the choices of treatment, it should be followed. There are differences of opinion whether the guide correctly expresses the law. It does correctly express the ethical obligation.

The “no cardiopulmonary resuscitation” instruction developed for the BC Ambulance Service is excellent.[7] It allows terminally ill patients and those near the end of their life to avoid unwanted cardiopulmonary resuscitation when ambulance personnel respond to an emergency call. Updated as of 1 June 2001, the directive can now be combined with a “No CPR” bracelet. It is an additional method by which to exercise autonomy. The Health Care Providers Guide states the Consent Act does not apply to ambulance crews.

An example of a more complex instructional advance directive is the living will created by the University of Toronto Centre for Bioethics.[8] The patient considers a variety of listed medical problems and chooses the listed level of treatment or intervention wanted if any of those problems occur. Because it is an instructional advance directive, its use on its own in British Columbia is restricted by health care providers.

If there is no health care representation agreement under the Representation Agreement Act, then the Consent Act applies and a temporary substitute decision-maker under the Consent Act makes the health care decisions (unless there is already a court-appointed decision-maker). Both acts apply to adults only.

Although there are some restrictions on the temporary substitute decision-maker, the Consent Act has legally validated the authority of that decision-maker. Family consensus may well remain the way to arrive at a decision, but generally it is no longer legally necessary.

If there is no guardian or representative to make health care decisions, it is the health care provider who selects the temporary substitute decision-maker and does so in accordance with a list set out in the Consent Act based on who is available and who qualifies (Table). The first choice, if available and if qualified, is the adult’s spouse.

The Consent Act and the Representation Agreement Acts are complex, and the physician should make himself or herself aware of their provisions.

Duty to treat 

Once the physician-patient relationship exists, there is a duty to treat. The standard of treatment is no different for the terminally ill patient than for any other patient.

The physician must guard against his or her abuse of power in the physician-patient relationship. This is always a concern, but particularly so when treating the very young or the very old. The exercise of power by the physician can be cloaked in the guise of beneficence, but is still a denial of patient autonomy. Approaches to treatment must be made with a knowledge of the patient’s values and how treatment will interact with those values. Consent to treatment is not just a legal requirement. Health information is necessary for the patient to make decisions and it is the ethical and legal obligation of the physician to communicate that information.

Usually the terminally ill are also the elderly. Societal values that emphasize youth and work success, coupled with increased health problems and often frailty of the elderly, tend to reduce the respect in which the elderly are held. This can occur without conscious intent. Ageism, like racism, is morally wrong and cannot be part of the physician-patient relationship. Legally the age of the elderly patient in itself is irrelevant.

The elderly confused patient with a terminal lung cancer has the same right to diagnosis and treatment as any other patient. When the physician is very busy, that can be forgotten. Confusion that may be caused by cancer can also be caused, for example, by a drug reaction or hypoxia caused by pneumonia. The patient has the right to a diagnosis and, if consented to, the physician has a duty to treat.

The Code of Ethics of the Canadian Medical Association puts it very succinctly: “7. In providing medical service do not discriminate against any patient on such grounds as age ... physical or mental disability....”[9]

Assisted suicide, pain relief, and the duty to treat

The terminally ill patient wishing to commit suicide may request the assistance of the physician, but there is no evidence as to how often this is requested or how often it occurs. The Special Senate Committee on Assisted Suicide and Euthanasia[10] reported it “heard sufficient evidence to suspect it is being requested and provided.” There is no legal duty to assist. If assistance is provided, it is an offence under the Criminal Code of Canada,[11] which on conviction provides for imprisonment up to 14 years.

Some physicians believe there is an ethical duty to assist a terminally ill person in dying even when it is legally prohibited. Freud’s physician in 1939 administered morphine (probably euthanasia, rather than assisted suicide) to Freud, who died a few hours later.[12] The physician who assisted Sue Rodriguez at her death obviously believed there was an ethical duty to do so.

It is not certain how many physicians believe assisted suicide is unethical and how many simply comply with the law. Clearly there is no unanimity of opinion either for or against it. A survey of Alberta physicians showed 15% would practise active euthanasia (where the physician does the act causing death, as opposed to assisted suicide where it is the patient who does the act) if legalized.[13] The CMA resolution prohibiting physician participation in euthanasia and assisted suicide passed at its annual meeting in August, 1994 with a vote of 93 in favor and 74 against.[14]

Pain is no longer a symptom to be endured by the patient. If the terminally ill patient wants pain relief, the physician has an ethical and an almost certain legal obligation to provide it. Pain relief may hasten the death of a terminally ill patient. Provided the intent is to relieve pain, the hastening of death is neither ethically nor legally wrong.[15]

Futility and the duty to treat

What is futility? The Special Senate Committee said it is “treatment that will in the opinion of the health care team be completely ineffective.”[16] That is more restrictive than the CMA Joint Statement on Resuscitative Interventions, which uses the words “almost certainly will not benefit.”[17] Both definitions raise the question, “Futility in relation to what?”[18]

If the doctrine of futility is to be used, it must be used carefully. If it is used but does not apply, then the physician is in breach of an ethical and legal duty to treat. Futility appeals for its apparent scientific basis, but Beauchamp and Childress point out that even physiological futility can, on the part of a physician, be both a scientific and a value judgment.[19] Empirical assessments of futility, although successful in predicting for groups, have not been successful in predicting for individuals.[20]

Even if futility can be established for denial of treatment of the primary disease, there may still be a duty to treat other medical problems. One need go no further than the CMA Joint Statement on Resuscitative Interventions, which provides where CPR is withheld, the patient “should receive all other appropriate treatments, including palliative care, for his or her physical, mental, and spiritual comfort.”[17]

Treatment to provide a slightly longer survival time for a terminally ill patient may be very important to that patient. Truog and colleagues conclude that the decision not to treat cannot be based on futility but rather on the patient’s interest.[18] The patient’s perspective then becomes part of the decision. This does not mean there is always a duty to treat, but it does mean that futility in its strictly physiological sense should never automatically be the basis on which refusal of treatment is made.

Summary

Only a few of the ethical and legal issues involving terminally patients have been covered in this discussion. There are other ethical and legal issues, such as: When is treatment withheld or withdrawn? Can or should scarce resources be allotted for someone who is terminally ill? The starting point for all ethical and legal issues involving the terminally ill is autonomy or, put another way, respect for the person.

Table. Temporary substitute decision-makers

William J. Sullivan, BA, LLB, MCL

Mr Sullivan is a lawyer practising at Guild, Yule & Company Barristers and Solicitors, Vancouver. He lectures on medical ethics and health law and is a member of the GF Strong and George Pearson Ethics Committee and the UBC Clinical Research Ethics Board.