Volume 9, Number 1, November 1997

Personal Directives and Reality: A Physician's Perspective

Kim R. McKenzie, M.D., F.R.C.P.
Internal Medicine/Geriatrics
Clinical Director, Geriatric Services
Chinook Health Region, Lethbridge, Alberta

From the outset let me state, as a physician, that I believe in personal directives for all individuals over the age of 18. Having a personal directive is an important part of one's healthcare management.

I am also a realist when it comes to the physician's role in facilitating and establishing an individual's personal directive. I believe individuals should be offered the choice of completing a personal directive, but I also acknowledge, and certainly this has been reinforced by my clinical practice, that it just is not going to happen that way.

Numerous studies have confirmed that although people express the desire to direct their own health care, only 50% of individuals want to actually specify this in a personal directive, made in advance. Physicians are continuously exposed to this ambivalence from patients and it is one of many factors that makes our role in helping individuals establish a personal directive, both important but frustrating.

There is no cookbook approach to facilitating a personal directive: it falls into that poorly defined and rarely appreciated area activity - the 'art of medicine.'

As physicians, we will have to struggle with the need for increased use of personal directives by our patients to assist in their management in different situations. This increasing pressure for the establishment of personal directives is not only going to come from our patient population but also from the economic realities of healthcare reform.

This brings me to my first note of caution . . .

Personal directives should never be used as a means of restricting medical options because of economic pressure alone. A personal directive, in my opinion, is not ethically valid unless it is supported by a well-informed, competent choice by the patient or surrogate decision maker, and that choice should be based on medical options which have been supported by objective clinical data as opposed to medical rationing.

Unfortunately, the concern about euthanasia also gets raised in the ongoing discussion of personal directives. This is a separate issue which is not involved in any way by the current legislation for personal directives. It is clearly an issue which we have to continue to debate both among ourselves as physicians and as a society at large.

The essence of a personal directive is to allow individuals to choose what defines their quality of life, allowing them to accept or reject medical interventions which support or diminish their perception of quality of life.

Our responsibility as physicians . . .

Therein lies the first point of challenge in a physician's role in initiating a personal directive. Individual definitions of "quality of life" are very different. All physicians know that their biases can sway a patient's decision but, surprisingly, they are often unaware of how that bias is presented to the patient. All of us are aware how the use of certain phrases or words, and certain verbal arguments, can sway patients one way or another in our discussions with them. What the majority of physicians are unaware of is how their non-verbal communication is probably more important in supporting patients' choices or rejecting them.

The first practical advice would be 'physician know thyself.' I have a personal directive for myself and I review it every year. I have found the exercise of establishing a personal directive for myself really useful in pointing out my own biases. If you have not written a personal directive for yourself or assisted a close family member in doing so, you will discover some blind spots in terms of your personal biases.

What defines the "quality of life" for an individual is an emotional issue. As physicians, we sometimes fall into our own expectations of "logical, self-evident choices" which may or may not be relevant or very important to another individual. Avoiding that expectation is probably, for me, one of the most difficult parts of facilitating a personal directive. Our responsibility is to provide prognosis, clinically supported choices and the realistic consequences of those choices as objectively as possible. Our responsibility is not to direct individuals to specific choices. In all honesty, this is very difficult not to do to some degree.

It takes time . . .

The second rule of thumb in facilitating personal directives: "There is a time and a place for everything."

Squeezing a discussion of personal directives in a 10-minute appointment slot, when you are five patients behind and it is 4:30 on a Friday afternoon, is not a good idea. Any practicing physician has certainly been faced with trying to do so and knows the frustration which results.

A personal directive is only useful if individuals understand what their choices are and can accept the consequences of their choices. I refer not only to the individual preparing the personal directive but also to the family and any other significant others in their life.

Time and time again I have been frustrated when I have not spent the required time discussing the choices individuals can make, the consequences of those choices and allowing individuals the opportunity to question and challenge the choices, and to go through the emotional grieving which goes along with those choices. In not allowing time for this, the use of a personal directive tends to backfire because either the individual or the family will not support its use when it is time to use its authority.

In some ways, writing a personal directive is analogous to a grieving process, and both the patient and the family must be allowed time go through the emotional process. These emotions may move from anger to denial to bargaining to acceptance and then, later, doing it all over again.

What other problems can stand in the way of facilitating the completion of a personal directive?

One of the uncertainties physicians often struggle with is not knowing what the prognoses of particular conditions may be in specific circumstances, or what reasonable clinical options are available. Unfortunately, it is very difficult for the average physician to maintain a current level of understanding of prognostic indicators and available options, given the rapidly changing technology and increasing pharmacology available. Fortunately, in the palliative care area, there are good studies being released with prognostic criteria for different terminal conditions that certainly are useful for guiding some decisions. However, there continues to be controversy about the usefulness of different interventions for certain conditions, particularly in the elderly. One of the classic examples of this is whether or not there is any significant benefit to performing a full cardiac resuscitation on an unmonitored elderly patient who is found to have a cardiac arrest. There is an increasing consensus that such resuscitation brings very little benefit yet the physician has to be comfortable with these ambiguities when discussing these options with patients and families.

Increasingly, we are seeing well-informed individuals questioning the physician's recommendations because of the accessibility of medical literature available on the Internet. With access to the Internet, families often have more current information on treatment options than are published in the medical journals. This presents a real challenge to physicians who are continually struggling to keep current with new developments with the conflicting time demands of patient care and reading. Patients and families, particularly in times of high emotional stress, will sense this uncertainty in physicians and will often hesitate to complete their personal directives.

In my experience, the best way to deal with this situation is to be honest with the individual and state you are uncertain about different options but you will find out and get back to them. Unfortunately, in a busy practice, that takes time and delays may even prevent completion of a personal directive.

I am aware that the process which I have outlined takes a lot of time and, unfortunately, time is the most precious commodity in a busy practitioner's life. In my experience, however, the time you take in facilitating and completing a personal directive pays off when the time comes for patient management later. It also has secondary benefits in dealing with the ambiguity and emotional distress which patients and families experience when dealing with medical decisions. We often underestimate the amount of time we need to spend dealing with the emotional uncertainty of family members around choices. It is often the hidden motivation in seeking to see a physician and the cause of persistent anxiety and depression in family members.

The issue of competency . . .

The other big barrier which gets in the way of fulfilling a personal directive is the question of competency. Increasingly, the issue of competency is being questioned in individuals because of the aging population, a possible drug induced delirium, and increasing recognition of hidden depression. An individual must be competent in order to complete a personal directive: they need to be awake, able to communicate in some way, able to retain information in order to make decisions, and exhibit good judgement. If a physician suspects a person is incompetent, he or she then has to decide if there is any reversibility to the incompetency, such as through treatment of a depression, psychosis, or delirium. If there is no potential reversibility, the physician then has to decide whether the chronic impairment is severe enough to warrant the individual being declared incompetent under the Dependent Adults Act or ineligible to complete a Personal Directive.

This is not an easy decision and, increasingly, declarations of incompetency are being challenged by patients, families and the courts. Hopefully, the issue of competency will continue to be discussed because it is pivotal in the ongoing establishment of personal directives.

The bottom line is that personal directives are going to be an increasing part of our healthcare management for patients. As healthcare providers we are going to have increasing pressure on us to utilize directives, coming from patients, patients' families and from healthcare reform itself. They require the practice of the art of medicine as well as the knowledge of the science of medicine. They are incredibly time- consuming, often thankless, and despite the best skill as physicians we can acquire, difficult to complete.

Nevertheless, I do believe in the importance of attempting to establish personal directives with patients. They give them control over their future quality of life and provide clarity in medical decision-making. They reduce the emotional stress experienced by family around those difficult individual choices that have to be made for those who cannot share in the decisions themselves.