Volume 4, Issue 02 - April 2001

Personal Directives - Experiences in the Hospital

As a hospital social worker who works in general internal medicine, I see the subject of personal directives come up frequently and have noted several trends emerging as more people realize that they can express their wishes and appoint a decision-maker. More people are bringing personal directives into the hospital with them; as well, more patients are requesting assistance in writing personal directives while in hospital. In this article, I will recount a personal perspective on challenges and issues arising from the legalization of personal directives in Alberta.

The Law

In December 1997, the Personal Directives Act was passed, giving what had previously been called ‘advance directives’ or ‘living wills’ legal standing in Alberta. Prior to the introduction of this legislation, we saw the occasional patient who had written an advance directive, but medical staff were not legally obligated to honour the document.
Most people, including families and medical staff, assume that the next of kin are the legal decision-makers for incompetent or incapacitated patients. However, this has never been the case, even prior to the Personal Directives Act. (Section 20.1 of the Dependent Adults Act specifies that if a person is unable to make decisions about medical care, this care can be provided, if, in the opinion of two physicians, it is medically required.)

When the personal directive legislation was first passed in Alberta, there was a lot of confusion about the responsibilities of hospital staff when it came to writing and respecting the directives. At the time, I heard a lot of care providers worrying about lawsuits as a result of following Do Not Resuscitate (DNR) instructions in personal directives - especially when families were in opposition. For example, we encountered one instance where doctors had refused to write a DNR order in a patient’s chart because one family member, a very high profile individual in the community, requested that “everything be done” for the patient - in clear violation of the patient’s personal directive. The situation was called to my attention by the nursing staff, and was resolved through education around personal directives for both doctors and nursing staff. Everyone was thankful when this particular patient was discharged from hospital, as no one was looking forward to testing how well the legislation protected health care providers who followed a directive over objections from family members.

Worries about Personal Directives

In my experience, some physicians have worried that patients may not have been competent when they prepared their personal directives; yet as health care providers, we have to assume that they were, when the directives have been prepared outside of the hospital. When it comes to assisting a patient to draw up a personal directive in hospital, it is essential to inquire about the mental status of the patient. If there seems to be a question of a patient’s competency, it may be helpful to request that psychiatry assess a patient prior to preparing a directive.

Another concern with personal directives is that instructions contained therein are sometimes so vague that decision-makers are left puzzled as to how to interpret and apply them. For example, the use of terms such as “extraordinary” and “heroic measures” in advance directives can be problematic as agents, family and medical staff may all have different interpretations of what these terms mean. Such terms are used as though they are objective, when in fact they are value-lade. What one individual views as “extraordinary” another may see as an obviously necessary and required intervention.

Nutrition is a very good example of an area where understandings of meaning and value differ. Things can get especially difficult in such areas when family members start to use emotionally laden terms such as starvation to describe situations. We have often heard family members argue that “Mom (or Dad) didn’t intend that to mean she wanted to starve to death.” When called upon to assist in writing a directive, I try to steer writers away from vague terms and encourage them to discuss their instructions with their personal agents, so that everyone is completely clear about what their wishes are.

We have also seen, on occasion, situations where one agent has interpreted the instructions in a directive as allowing a given procedure, such as insertion of a feeding tube, while another agent has interpreted the same instructions as prohibiting the same procedure.

Sometimes, things are also more complicated when they are overly legalistic. We are seeing a number of directives that are written in lawyers’ offices. While some of these are very clear and concise, others are more complex and some seem to be written from a formula. Recently, I encountered a directive that named two agents, but then went on to say that in the event of a dispute between agents, the opinion of the majority of the agents would determine the course of action! In another case, one of my colleagues spoke of trying to decipher a personal directive that was 14 pages long, written in what may have been precise legal language, but was extremely difficult for hospital staff to wade through.

Writing and Sharing Directives

Many people are preparing personal directives because they fear that they will be subject to medical interventions that they do not want. In my experience, many individuals express fear of “being kept alive by machines” and have identified lists of interventions that they do not want. However, I have also helped someone prepare a personal directive that was very specific about interventions that the maker wanted. That particular person was fearful that because of her age, doctors would not be as willing to utilize medical technology as aggressively as they would for a younger person, and was concerned that if she was not able to state her wishes, health care providers would choose to “throw away an old lady.” Nevertheless, that person was the exception: for every person who worries about not getting required treatment, we encounter 20 who fear being subject to interventions at the end of life which will prolong life, but will potentially also prolong suffering and rob them of dignity.

Another set of tensions, when it comes to advance directives, involves the appointment of agents. I once encountered a situation where the agent named in the directive for an elderly person in hospital was not only unaware that the maker, a relative, was in hospital, but was also unaware that he had been named as the relative’s agent. The gentleman in question had not spoken to the maker of the personal directive for over a year, and had little idea of the maker’s views on treatment options.

We have also encountered patients who made personal directives and then carefully stored them in safety deposit boxes - with their wills! In other cases, patients have had very strong reasons for not wanting to disclose the contents of a personal directive: they have felt that some family members might pressure them to change their instructions, or might object to their choice of agents. To avoid some of these issues, I encourage writers to make copies of their directives and to distrbute them to all family members, involved friends and their family doctor.

Directives Do Not Replace Competent Patients!

It is very important for service providers to remember that even if a patient has a personal directive, its terms do not take effect until the maker actually lacks the decision-making capacity required for the particular question at hand. In the recent past, we have seen a patient whose personal directive instructed that dialysis would be an option, but then refused dialysis when it was offered. There was pressure to presume that the patient was incompetent and to proceed with the dialysis.

Writing about advance directives among Alzheimer’s patients, Harry Moody offers the following advice that is helpful in a variety of cases:
“[N]egotiation does not end when a notary puts a seal on the document. Every stage of dementia involves renegotiating goals, expectations, rights and obligations. A simple paper process will never give us an escape from this demanding process of communication among parties to the decision. It is a mistake to look for an easy answer, because it will tempt us into thinking the problem is solved.”

Closing Thoughts

In short, we are seeing more people who are aware of and writing personal directives. There are still problems, but these tools have advanced the cause of patient autonomy, and assuring patients that the values they live by will be respected when they are no longer able to speak for themselves. Continued attention to the appropriate writing, sharing and respecting of these documents will allow us to improve the care we provide to people in our province.

References:

Moody, Harry R. “Ethical dilemmas of Alzheimer’s Disease”, Ethics in an Aging Society. The John Hopkins University Press, Baltimore, Maryland (1992).

Announcements

• 2001 Annual Conference and General Meeting
  Thanks to a tremendous response, this year’s PHEN conference, “Equality and Health: Seeking Fairness in a World of Difference,” is now full. Registrations received on or after April 20, 2001 will be placed on a waiting list. Those individuals who have submitted registration forms will receive a response from the PHEN office as to the status of their registration within three weeks of receipt.
  
  During the Annual General Meeting on May 25, 2001, the PHEN membership will be electing one individual to the Board to fill a vacant position. Nomination forms for the position are available from the PHEN Northern Alberta office.
  
  Ethics committees and resources in Alberta are advised that some table space will be available at the upcoming conference to display ethics committee brochures and other public relations material. This space will also be available for anyone wshing to publicize other ethics initiatives in the province. If you are planning to bring something to display at the conference, please inform Network staff at PHEN’s Northern Alberta office.

• 13th Annual Conference - Canadian Bioethics Society
  The deadline for abstract submissions for the 13th annual conference of the Canadian Bioethics Society has been extended to June 1, 2001. The conference will be held October 11-14, 2001 in Winnipeg. More information is available at www.hsc.mb.ca/cbs2001.

• Bioethics Week 2001
  
  The evaluation process for Bioethics Week 2001 is still underway. The staff would like to sincerely encourage all those interested in supporting bioethics activities in Alberta to fill in the anonymous evaluation form available at www.phen.ab.ca/bioweek/bioweekeval.html. The more feedback we receive about the week, the better the Network staff will be able to support next year’s initiative.

• Addition to the PHEN staff
  The Network staff is pleased to announce that Marika Warren will be rejoining the PHEN team for the summer. Marika will be taking the position of Senior Research Assistant with PHEN’s Northern Alberta office.
  
  Also joining the Northern Alberta office is Rosemarie Muto, who has taken the position of research assistant. Both these positions are partially supported by grants from Human Resources Development Canada.
  
  The staff is very excited about having both Rose and Marika on board to help with projects over the summer.

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.