End-of-Life Issues and Care:Terminology, Definitions, and Barriers to Communication

By Tom Smith, Ph.D.

 

When the time comes to talk about end-of-life issues, almost everyone shrinks from the discussion. Dying is just something most people do not want to talk about no matter what. There are many reasons for this. Talking about dying is not “cocktail conversation”; it is not openly discussed in many, many cultures; it can be taboo; it is simply forbidden. Again, dying and death are grounded in cultural customs, traditions, individual beliefs, attitudes and behavior that vary greatly all over the world and from time to time as cultures evolve. Moreover, issues around death and dying are very personal and are rooted in our most basic human values. Also, the radical advances and changes in medical technology have precluded the development of standard terminology a layman can understand. Many people have no idea what terms like “intubation” or “ventilation” or “hospice” or “palliative” or “hastened death” or “assisted suicide” mean. And to complicate things even further there is a lack of consensus among professionals and lay people alike about how to describe certain actions or processes. What does a spouse mean when they say, “I don’t want her to suffer anymore”? Put simply there are no standard, universal terms or vocabulary to discuss end-of-life issues and care.

Different words have different meanings to different people. Popular writers confuse the issue even more by misusing terms or sensationalizing them. Certain terms have severe connotations that imply particular ethical and moral positions. In this brief essay, the terms we want to study are “hastened death”, “assisted suicide”, “futile” and “advance directive”. As you read these words what feelings come up for you? What do these terms mean to you right now?

Let us consider the term “hastened death”. Some believe that the various cultural, medical and ethical issues affecting the time of death are similar everywhere. This is nonsense. The term “hastened death” means very different things to different people and cultures. Some consider it to be murder. Others think it to mean the voluntary cessation of eating and drinking or the refusal of treatment; for example, no longer taking life saving medications or chemotherapy. I recall a young man who was diagnosed with AIDS and refused medication because those in his own country could not access such treatment. He died soon after. I believe this was a hastened death. But, did he commit suicide; he did not have to die?

Some think hastened death refers only to terminal sedation, the giving of gradual increasing doses of morphine resulting in death. Those participating in assisted suicide and voluntary euthanasia as practiced in the Netherlands and the State of Oregon, and others of the same philosophic persuasion, think it to mean only assisted suicide or voluntary euthanasia. And finally, some reject the term altogether and insist that one must discuss each case separately and uniquely.

To lump all the different definitions together creates an ethical morass that can impede any action and the relief of suffering. Is withdrawing or refusing treatment akin to assisted suicide? Did the young man mentioned above in deed commit himself to voluntary euthanasia? Is the objective of administering morphine to relieving suffering really meant to relieve suffering or hasten death? Or, is it assisted suicide? Or, is it involuntary euthanasia? What does it mean to “let the person die” as opposed to accelerating the process? These are very difficult questions to answer.

At this time, common usage of the term “hastened death” refers to refers to voluntary cessation of eating and drinking, withholding and withdrawing life-sustaining treatment, terminal sedation, assisted suicide and voluntary euthanasia. The American Psychological Association suggests that in general, differences in use of the term hastened death represent different views about what types of interventions are permissible under what circumstances as well as different views about the potential for abuse associated with different end-of-life interventions.

Now, let us consider the term “assisted suicide”. Assisted suicide as defined by the American Association of Suicidology is the deliberate and knowing provision of information, the means and/or help to another for an act of suicide. Is there a difference, however, between an act of suicide and the attempt of a terminally ill patient to exercise some control over how, when and where they die? Is the effort to maintain some independent control over the dying process a desperate, self-destructive act, motivated by emotional distress or a pathological condition that can be called “suicide” or a rational response to a futile (we will get to this term next) situation? Not everybody who wants to die is crazy or disturbed; they may just be tired of the situation of suffering and deteriorating quality of life. Should they be prevented from exercising this type of control over their end and if so, why? Are they really committing suicide? As a matter of legal fact, the Oregon Death with Dignity Act (1995) states that “under the Act, ending one’s life in accordance with the law does not constitute suicide.” The Act specifically prohibits euthanasia, where a physician or other person directly administers a medication to end another’s life.

So, it can be argued that it is morally and ethically appropriate to help in assisted suicide when the burdens of life outweigh the benefits because of unremitting, unbearable, prolonged, uncontrollable pain, severe psychological suffering and loss of dignity as judged by the dying person.

Still some difficulty remains in accepting this position. Firstly, some people may be clinically depressed and undiagnosed. Secondly, that the situation is terminal or incurable is a extremely difficult determination to make. There is ample evidence of spontaneous remission or times when everyone was thinking that the “end is near” and then it turned out to be months or sometimes years away. I recall the dying process of the American humorist, Art Buchwald. In February 2006, he checked himself into a hospice. Although his kidneys were failing, he decided to go without dialysis. In June 2006, he reported that his kidney was working and that he “blesses him every morning. Some people bless their hearts, I bless my kidney.” He died January 17, 2007, almost a whole year later, a year filled with life, humor and joy. Finally, the capacity and possibility of abuse and medical error involved in decisions leading to death cannot be dismissed. Still, it is forcefully argued that abuse of legally assisted suicide can be prevented through appropriate regulation, counseling, oversight and multiple assessments of the decision-making capacity of the terminally ill.

Let us return to the example of Art Buchwald’s situation in addressing the term futility. In most cases, the futility of the terminal situation is not clearly understood by doctors, caregivers and family and there is can be great conflict in making decisions under the circumstances. Decisions to withhold or discontinue treatment are determined by a variety of factors, including judgments of medical futility and the emotional status and coping styles of the family members and the dying person. At that point, additional treatment is often described as futile. I recall the death of my aunt Frances. She had bladder cancer and was told that she could try chemotherapy, but it may not be of much help. She decided, without using the term, that her situation was “futile” and said that she wanted to go home to die. Family members were sad, but did not argue with her. The decision that a situation is futile is not only contingent upon medical definitions and prognoses, but also the deeply held values of the person who is doing the dying and the sociocultural and familial contexts. Finally, let it be said that deciding that a situation is futile should not be made lightly and only after serious consideration of all opportunities for healing.

In conclusion, we turn our attention to “Advance Directives”. In the late 80’s and early 90’s, I witnessed many, many, many friends die of AIDS. So many of the deaths were complicated by competing wishes and desires of family, friends, doctors, social workers and spiritual caregivers. In most of the cases I witnessed, the desires of the young men who were dying were either unknown or worse, disregarded. Some parents demanded care until their son hardly looked like a human being others wanted a quick dispatch from the suffering they saw. It was sometimes hard to tell whether the desire for an end to the suffering was that of the parents because they could no longer stand watch or for the sake of their offspring. In almost all of the cases, my suffering friends lacked the capacity to clearly understand their truly futile situation or to communicate their wishes as they lapsed into dementia.

All of this motivated me to draft an “Advance Directive” while I am healthy and still competent. Getting it in writing and providing for a “health care proxy” (the person who is responsible that my directive is carried out) will decrease the complexities of making decisions when I am no longer able. I have clearly stated the circumstances in which treatment should be received or refused, what extraordinary measures (if any) should be taken to preserve my life, and what kind of pain management I want (plenty of demerol). Some of these decisions may impact the time of my death but they generally call for widely accepted, legal components of end-of-life care, such as withholding or withdrawing life-sustaining treatments.

This is not to say that everything is okay for everybody. Some people refuse to even think of drawing up an advance directive because it raises the spectre of their own death and their reluctance to face it. Also, just because I “have it in writing” does not guarantee that my wishes will actually be carried out. For some cultures, advance directives goes against the grain of their value system. Individual preferences may change over time. When the time comes, I might want to change my mind about my care. Making decisions while one is healthy is different than when one is suffering. The will to live can be very, very powerful and robust. I have to admit that at this time, I do not want to go to a hospital and want to die looking out my front window … but that might change …

In any case, as the APA puts it: Health care providers must be sensitive to the limitations of an advance directive for a particular individual over time, the need for ongoing exploration of the desires and needs of dying people and their loved ones, and the likelihood that such directives may be in conflict with some people’s values and traditions.

References

American Association of Suicidology. (1996). Report of the Committee on Physician-Assisted Suicide and Euthanasia. Suicide and Life-Threatening Behavior, 26(Suppl.), 1-19.

Block, S. D., & Billings, J. A. (1998). Evaluating patient requests for euthanasia and assisted suicide in terminal illness: The role of the psychiatrist. In M. D. Steinberg, S. J. Youngner (Eds.), End of life decisions: A psychosocial perspective (pp. 205-233). Washington, DC: American Psychiatric Press.

Canetto, S. S., & Hollenshead, J. (1999). Gender and physician-assisted suicide: An analysis of the Kevorkian cases, 1990-1997. Omega, 40, 165-208.

Cantor NL, Thomas GC: The legal bounds of physician. conduct hastening death. Buffalo Law Rev 2000;48, 83-173.

Oregon Death with Dignity Act (1995). Or. Rev. Stat. ßß 127.800 – 127.995.

Pestaner, Joseph P., End-of-Life Care: Forensic Medicine V. Palliative Medicine;Journal of Law, Medicine & Ethics, Vol. 31, 2003.

Schwarz, Judith, Exploring the Option of Voluntarily Stopping Eating and Drinking within the Context of a Suffering Patient’s Request for a Hastened Death Journal of Palliative Medicine. December 1, 2007, 10(6): 1288-1297. doi:10.1089/jpm.2007.0027.

Sullivan, M. D., & Youngner, S. J. (1994). Depression, competence, and the right to refuse lifesaving medical treatment. American Journal of Psychiatry, 151, 971-978.

http://www.apa.org/topics/death/end-of-life.aspx