Preserving Dignity: The Use of Personal Directives, Made in Advance, for Decision-Making in Healthcare

The views expressed herein are those of the authors and not necessarily those of the Provincial Health Ethics Network

Who needs a personal directive, made in advance? Certainly, those who are well advanced in years; they do not know what lies `around the corner' as, inevitably and inexorably, death awaits us all. Certainly, those with life-threatening but managed disease, such as transplant candidates and those with serious forms of malignancy, or with advanced emphysema. Certainly, those who might suddenly be injured in a motor vehicle accident or some other catastrophic event. In fact, the list already includes anyone who may be reading this article! We should all consider this way of preserving control over what happens to us, in the event of even temporarily loosing competence. But perhaps the largest group is those who are aging.

Aging with dignity has two components: a) being able to live and express one's values and beliefs in the context of a meaningful social life, and b) having those values and beliefs respected by others. Becoming incompetent greatly aggravates the risk of losing one's dignity; one loses autonomy and the capacity to express it, and it becomes more difficult for others to feel and express their respect. With age, many people reach what Daniel Callahan has called being `old old' (3). He defines that point as when one can truthfully say to oneself "If I died today my death, at least to me, would not seem to be premature". When one reaches that point one's views about measures to prolong life may change. The narrative of one's life has been largely written, and many of the `old old' are ready to go when they hear the call. Although an individual may not have any particular affliction that makes life a burden, many are fearful of dependency, especially if it is degrading, and feel entitled to avoid that, if possible. Their greatest hope may be to have a peaceful and dignified end. Personal directives, made in advance, are designed to help bring this about, and to maintain dignity, in the process. Others may want to fight to the very last breath, and are entitled to that viewpoint, also.

This article discusses two ways by which an individual's control over healthcare decision-making may be preserved, even when incompetent. These are a) appointing a person to act as a proxy for healthcare decisions, and b) writing a personal directive, in advance. These two processes, though distinct, are intimately related. Of the two, the first is much the more important. The second, the personal directive, made in advance (also called a `living will' - an inexact term which we prefer not to use) should be seen as written primarily for the benefit of one's proxy decision-maker, one's personal agent. 

Why should all this be so important now, when it was not thought of in the past?

Several reasons come to mind. First, one cannot depend on falling into the hands of healthcare professionals who know one's values and beliefs, as once was the case. Today, the physician in charge of one's serious illnesses is likely to be a stranger. Further, when in hospital, physician and nurse will change several times during a serious illness because of patient transfer to another service, or because one physician goes off service, and another comes on. This fragmentation of acute hospital care is now the norm. It is regrettable but, to a large extent, we have to accept that medical practice in hospital has become the practice of strangers on strangers. Nor are relatives always available to suggest decisions based on one's values, even if they had the legal right to do so - which, incidentally, they do not! Not yet, that is; but more of that story, below... Second, contemporary medical technology has increased the capacity of medical practice - both to do good and, unfortunately, to do harm. We often can modify the course of disease but not cure it - causing protraction of life of poor quality and, sometimes, with increased suffering (4). Although modern medical science can perform miracles, there is often a considerable price to pay for the expected miracle that does not quite come off. Third, this ability to protract the course of disease, without the capacity to cure it, affects the older population more than the younger. The elderly accumulate pathologies of the degenerative type, as co-morbidities. A myocardial infarct in an older person is more likely to be associated with a deep venous thrombosis, a stroke, or heart failure, or pneumonia, than the same incident in a younger or middle-aged person. These co-morbidities influence individuals' desires for treatment and physicians need to be sensitive to the values which only the individual can apply to such situations. The two measures described in this article are designed to give individuals a measure of control over these situations, even should they themselves become unable to make decisions because of mental disability (loss of mental competence).

Appointing a health-care proxy, and writing a personal directive

Making a personal directive, in advance (so-called `living will') is not like making an ordinary will. It is quite different. This is yet another reason why the term is so misleading. Personal directives, made in advance, refer to times when one is still very much alive, but unable because of illness to make healthcare decisions for oneself. For obvious reasons, such directives must be made in advance, while the individual is still competent.

Compared to making an ordinary will, making an advance directive is much easier, logistically, but may require more knowledge about common illness and their outcomes. It should rarely involve a lawyer, but it does involve the other person whom one appoints to act as one's personal agent or proxy decision-maker. This proxy may be a spouse, other family member, a friend, religious adviser, or a physician or nurse. Discussions while making it should also involve the family physician, nurse, social worker, religious adviser, or trusted healthcare professionals.

The fact that it involves more knowledge of illness outcomes may come as a surprise. To make an ordinary will one needs to know what one wants to leave and to whom. Before writing a personal directive in advance, however, one needs:

• to have thought about one's values and beliefs, and how they should influence upon healthcare decisions when one is incompetent, and
• to learn about the sort of things which can happen to one as a result of modern medical technology, and decide to what one wishes to expose or not expose oneself, and
• to carefully decide who are the persons one would most wish to act on one's behalf if unable to make decisions for oneself, and name them in the directive.

It is important to realize that these personal directives are the main defence the average person has against the inappropriate application of high-technology medicine. It must be realized, of course, that excluding certain forms of medical high-tech probably will result in dying sooner, but we are considering circumstances where prolongation of life often is not the ultimate value or desired objective.

The sort of questions that need to be discussed with the healthcare agent, be that person a spouse, family member, friend, physician, or other person are:

• conditions for wanting one's life prolonged by means of life- support systems such as ventilators, dialysis, or feeding tubes;
• placement on a respirator if the only expectation is return to a previous state of irrecoverable brain damage;
• if a co-morbid infection, such as pneumonia, develops, one's wish concerning antibiotic therapy, even though the best result would only be to return to a previous seriously incapacitated chronic state; and
• whether to undergo cardio-respiratory resuscitation (CPR).

To consider this last question individuals need advice on probable outcomes -- in terms of quality of life -- of CPR in the elderly with different co-morbid conditions. It is because of co-morbid conditions that CPR in the older person often is unsuccessful or, if partially successful, leads to very low quality of life. In the recent past, there is much concern that older persons and those with advanced terminal disease have been harmed by its inappropriate use. Physicians have a duty under the ethic of non-maleficence to keep informed of research on CPR outcomes.

The determination of competency to make decisions

It is often very difficult to determine when someone is losing competency to make decisions, especially if the mental deterioration is occurring slowly over time. Also, loss of competency is different in the various spheres of one's life -- for example, loss of decision-making capacity for fiscal matters may occur long before decision-making capacity over what may be done to one's body.

Also, loss of competency may be transient and fluctuant, even during the period of a single day.

Under the law, any person named in a directive to determine capacity can do so after consulting with a psychologist or physician. If there is no one named in the directive to do this, two health care providers can make a joint written declaration of incapacity as long as one of them is a physician or psychologist. For all these reasons, making personal directives with respect to certain aspects of one's life should occur well before an anticipated decline in mental capacity.

Practical advice for those individuals who might be thinking of making a personal directive:

1. Select one person to be your healthcare agent, whom you trust to make decisions for you, if you become unable to make them for yourself. Also select a back-up person.
2. Ask a healthcare professional, usually a doctor or a nurse, to explain the sort of situations and conditions you and your healthcare agent might need to think about - as outlined above.
3. Examine and reflect upon your beliefs and values and discuss them several times with those persons closest to you, one of whom should be your healthcare agent or proxy. This discussion of values is much more important than actually writing an advance directive because it enables others to know what sort of things you want for your future. As no one knows what new technologies will come along, including new ways of combating degenerative processes, an advance directive document may become outdated quite quickly with respect to specific procedures mentioned in it. But it will not become outdated with respect to your beliefs and values. It is the responsibility of your healthcare agent to interpret these values if the directive is challenged as being outdated, or unrealistic.
4. Write a directive with your healthcare professional advisor and your healthcare agent present, because it is written for their guidance. There are several standard forms available but a thoughtful and careful statement written by yourself is just as good and just as persuasive, in medicine and law. There is a new standard form that is now available online that can be either filled in or used as a guide for writing a directive. It should mention at least one, and preferably more than one person who in turn would act as healthcare agent. Even though a personal directive, made in advance, is not a legal document, it must be witnessed, and dated. You do not need a lawyer to make a valid advance directive. Though not yet controlled through legislation, existing legal decisions -- case law -- gives them legal recognition.
5. Unlike a legal will, copies of a personal directive, made in advance, should be made freely available, so that it can be found in an emergency. Its contents should be known to others, and copies might be deposited with, say, your spouse, healthcare agent, another member of the family, nurse, physician, and a close friend. A voluntary online personal registry has now been created for health care providers. As of Fall 2008, they will be able to search for the name and contact information of your agent(s).
6. Bear in mind, and remind others, that you can change your mind at any time. If you make a new directive, destroy all copies of the previous one. For this reason, it is important to keep a list of those to whom copies of a directive have been given.

The disadvantages of personal directives, made in advance -- the possible "down side":

There are several arguments against having a personal directive of this type. These include:

• Physicians have concerns that individuals will not necessarily know enough about medical matters to make good decisions. In all this there is an element of paternalism, but the point may be valid. In refuting this, others point out that we are all allowed to make decisions that others disapprove, including those which turn out later to have been in error. Individuals' decisions, made while competent, are not required to meet any standard other than their own assessment of the facts, after being given adequate, relevant information.
• Physicians are concerned that directives may interfere with the intimate relationship between individual and professional caregiver. They intrude into the area which many physicians hold to be essential for good medical relationships - the area of patient trust.
• Another concern is that those who do not have a personal directive will be assumed, because of absence of instruction to the contrary, to want all forms of high-tech medicine, regardless of other considerations. This fear is countered in all legislation by a specific clause that states that absence of instruction against certain actions cannot be interpreted as a presumption for actions. Indeed, in the drafting legislation for Alberta, it is specifically mentioned that the Act should disclaim any significance to the absence of a advance directive.
• There is concern that current information is inadequate for individuals to comprehend enough about medical outcomes to write meaningful directives. They would not be "clear and convincing".
• Another concern is that the personal directive, because of its informal nature could not withstand a court challenge of its authority, and therefore, healthcare professionals might be liable to suit by following it.
• There is also concern that a personal agent, may find the regulations too exacting and will not want to retain the responsibility which is entrusted to them.
• The validity of a directive depends on the competency of the individual writing it, at the time of writing, yet it is likely that tests of competency would not have been applied at the time of its composition. The witness to a directive attests to the signature only, not to the competency of the person who is signing.
• Individuals may use directives to make demands which physicians cannot carry out because they deem them to be inappropriate.

This article will make no attempt to answer any but the last of these concerns. However, it should be stated that, in the absence of specific legislation on personal or advance directives, a written and witnessed statement of this nature already has legal standing under the general or common law (5,6). Many think that this is enough. Further, a written directive already has great moral and ethical persuasiveness for healthcare professionals if the competency of the person at the time of writing it is not in question.

Can individuals use personal directives, made in advance of becoming incompetent, demand treatments which healthcare professionals deem to be inappropriate?

These may be of three types: i) demands for so-called futile treatment (of no apparent medical benefit, which may also be very costly), ii) treatment which is illegal (requests for euthanasia or assisted suicide), and iii) treatment instructions which go against the ethics of the care provider. These three categories are not mutually exclusive.

As regards futile treatment, there is no ethic which can command a physician to give treatment which is deemed to be useless. When there is conflict, the professionals, proxy decision-makers, and family should strive for consensus using the best interests of the incompetent person and the question of benefit as the main guide. This is the correct point of focus. The so-called futility of the procedure is incidental and secondary. Hopefully, most conflicts of this sort will yield to discussion and explanation, and efforts to understand where each is `coming from'. No professional need fear that they can be required by law to give treatment which they deem as non-beneficial, useless or futile, though other professional opinions would help to support that position.

Some see the whole subject of personal directives, made in advance, as ultimately leading to coercive demands on persons who are becoming incompetent. Old persons will be persuaded that they ought to die, and ought to sign off from entitled but costly treatment by means of a personal advance directive to that effect. Of course, such coercion would be criminal. Personally, we strongly hold to the opposite view: that control of the future through a personal directive, made prior to losing competency, will take some of the fear out of dying and will assure people that they will be cared for as they would wish and only treated to the extent that have previously decided. Individuals will gain confidence through advance directives that their suffering will be relieved, that burdensome treatments which they do not want will not be forced upon them, and they will have no need to think about having to request to be killed if they know their wishes will govern decision-making.

Which form of Advance Directive should be used?

This question is probably answered by "whichever suits your individual best." (7) Existing directives are of several types: a) Very simple statements, in a single paragraph, stating that the individual would not wish heroic measures, but be allowed to die with dignity, when there is no hope to recover meaningful interactions with loved ones. b) More explicit directives, of three or four paragraphs, where the individual recognizes different life support technologies (CPR, ventilators, tube feedings, dialysis, etc.) and gives preferences on each. This variety also should appoint the healthcare agent. c) Disease-specific directives for those with certain malignancies, or after liver or heart transplantation, or for chronic renal failure programs. There are few of these at present, but it is expected that they will become more commonly available. Medic-alert bracelets and wallet cards may be used in conjunction with these, to instruct those who might find themselves suddenly confronted with such a individual, such as EMS personnel. d) More elaborate documents with many combinations of events and different anticipated outcomes (8,9). Preparatory video-recordings are sometimes used prior to completing this type, and a doctor or nurse or specially trained persons also need to be present. Family physicians have an important role in relation to advance directives (10).

The authors prefer the second variety of directives (see b) in the paragraph above, but individual choice should be the guiding principle in selecting a directive. New forms of directive are being developed in institutions all over the country. Requests for specimen copies of several varieties of personal or advance directives could be directed through a number of agencies such as: the Provincial Health Ethics Network, the College of Physicians and Surgeons of Alberta, the Alberta Association of Registered Nurses, the Alberta Medical Association, the Bioethics Centre (University of Alberta), the Bethany Care Centre (Calgary), the Capital Care Group (Edmonton), the Office of Medical Bioethics, Faculty of Medicine, Univ. of Calgary, the Centre for Bioethics (Toronto), or any Palliative Care program. No one type of directive has the approval of a professional association or college though the principle of personal directives, made in advance is widely supported by such professional organizations.

Conclusion

No one pretends that these are easy matters. However, our desire for individuals to have meaningful input into what happens to them, especially even when no longer competent, is best satisfied we think by taking the route of the personal advance directive and sharing responsibility with a personal agent whose authority has legal backing and defined obligations.

The personal agent may also make mistakes for the individual, but most people nowadays think that this would still be an improvement on a situation where only physicians or legal guardians have power to decide on treatment.

Notes

1. John B. Dossetor: Emeritus Professor of Bioethics, University of Alberta and University of Alberta Hospital Site (Capital Health Authority).
2. Robert S. Fraser: Chair of Joint Ethics Committee, Alberta Medical Association and College of Physicians and Surgeons of Alberta.
3. Callahan D. Setting Limits: Medical Goals in an Aging Society. Simon & Schuster Inc, New York, 1987
4. One thinks of the ancient classical myth of the handsome Tithonus, with whom the goddess of the dawn fell in love. Zeus granted her request to make Tithonus immortal, but she forgot to ask for eternal youthfulness, as well. Tithonus became older and older, uglier, smaller, shrunken and progressively desiccated, his endoskeleton softened, his exoskeleton hardened and he eventually turned into a grasshopper!
5. Malette versus Shulman, 63 O.R.(2d)243-75, and 72 O.R.(2d)417(Ont.C.A.). See also, Singer PA, Lowy FH. Refusal of Life-Sustaining Treatment, the Malette case, and Decision-making under Uncertainty. Annals RCPSC, 24(6), 401-403
6. Fleming versus Reid, Ontario Reports 4 O.R. (3rd) 74- 96, 1992
7. Reinders M, Singer PA. Which Advance Directives do patients prefer? J Gen Intern Med 9:49-51, 1994
8. Emanuel LL, Emanuel EL. The medical directive: a new comprehensive advance care document. JAMA 261:3288-93, 1989.
9. Molloy DW, Mepham V. Let me decide. Toronto:Penguin Books, 1992.
10. Kohut N, Singer PA. Advance directives in family practice. Canadian Family Physicians 39:1087-93, 1993