'Compassion In Dying' From Concept To Realityby Susan J. Dunshee
Humanist and freethought adherents in our society have always been an intrinsic part of the right-to-die movement. Indeed, the passionate and persuasive words of Barbara Dority, President of Humanists of Washington, in describing self-determination in dying as the "ultimate human right," were instrumental in sparking the creation of a new organization devoted to that cause. As a Humanist, she claimed, "We believe that a strong moral imperative exists for those of us who are committed to the right to die. As long as our fellow human beings are dying agonizing deaths-often alone-denied the most basic control over their own lives, how can we not be actively engaged in doing something about it? " Historically speaking, it was actually the failure of Washington State's Initiative #119 in 1991 to provide physician-aid-in-dying to mentally competent, terminally ill patients in our state that was the genesis for a truly activist right-to-die organization called Compassion in Dying. Formerly all members of the board of the Hemlock Society of Washington, the founding members of Compassion decided that in order to go beyond the educational and legal focus of the Hemlock Society they would have to create their own grassroots organization. The intent at the time, the spring of 1993, was to create a responsible model for other right-to-die activists who were prepared to step forward and truly help terminally ill people who sought a hastened death. In designing its protocol, the members of Compassion decided to accept only terminally ill adults of sound mind whose private physicians affirm that death is expected within a reasonable period of time, usually six months. (This prognosis is later confirmed by at least one other physician who is affiliated with Compassion.) The medical condition must cause severe, unrelenting suffering as defined by the patient. Patients make three separate requests-either in writing or on videotape-to Compassion describing their situation and requesting assistance in hastening their deaths. No one may make the request for the patient nor may the patient make it through advance health care directives. In the course of our counseling with patients all other alternatives to suicide are explored, such as better pain management, hospice services or spiritual guidance if requested. Finally, if any close, involved family member, partner or friend of the patient is opposed to this choice, Compassion cannot be involved. The counseling process involves two case managers from Compassion (at this time, primarily still the founding members) meeting several times with the patient and those loved ones who are involved in and supportive of the patient's choice. After obtaining necessary medical information, exploring all other alternatives, assessing the patient's and the patient's family's level of preparedness and resolution, the case managers provide explicit information about the type and amount of barbiturates which the patient must then be able to obtain from his/her physician. This is the crux of the matter-and why it is still so important that physician-aid-in-dying be established as a right for all Americans. Several patients have called us in the final stages of their disease and then made the painful discovery that their personal physician was not supportive of their right to a dignified and hastened death. It cannot be said too often: Every one of us who believes in patient self-determination and the right to a humane, hastened death needs to have these discussion early with our health care providers-preferably while we are still in good health. That way we have plenty of time to find another physician, if necessary, who shares our ideas about personal autonomy and dignity. No doctor, under our present legal system, will take on a new, dying patient for the sole purpose of prescribing medications which could result in the patient's death. Once the medications are obtained, the patient is instructed in their use. This process includes the use of anti-nausea tablets, the emptying of the barbiturate powder from the 60 capsules into a small portion of food, and, when possible, the immediate ingestion of a small quantity of alcohol after the pill/food mixture. Patients understand that they must be able to self-administer the drugs, that they have full control over the date and time of their deaths, and that the presence of their two case managers from Compassion is offered but by no means mandatory. Often we have found that our presence is sought more for the support of the loved ones who will be in attendance than for the patient him or herself. The waiting period after consumption until the time of death can be from 30 minutes to eight hours, but the patient is in a deep coma-like state within minutes of ingestion and remains so until the moment of death. We have found that this process ensures the completion of unfinished life business as the patient and his/her loved ones know exactly what time limitations they are working within. True closure of one's most important relationships is possible, and many families have found this aspect of such a "planned death" to be their most treasured memory after the fact. This approach deters violent suicides and the ensuing, often unresolved grief which is usually the legacy of such lonely and desperate departures. This method also relieves the pressure on loved ones to actively assist by themselves and eliminates the potential of guilt feelings should they assist alone and the suicide fail or lead to a difficult death. Compassion's founders spent a great deal of time creating and then revising and refining the safeguards which are built into our protocols. On the one hand, we did not want to create prohibitive procedures which would drain precious time and energy from those requesting our assistance. On the other hand, we felt morally obligated to help patients explore every other possible end-of- life alternative and to be as sure as humanly possible that those we helped were fully mentally competent and utterly resolute-intellectually, emotionally and spiritually-in their decision to end their lives before being fully consumed by their disease. Ambivalence about so monumental a decision most often occurs when suffering is not yet acute and patients have the time to weigh again and again the pros and cons of their choice. The process of repeatedly putting the wish to die into writing or on tape helps patients clarify their feelings and may move them to consider anew how they might cope if they were not to choose suicide. Our experience thus far has been that those patients who complete our process are extremely resolute in their determination to seize control of their dying; several have expressed their sense of relief and even eagerness when the date they set for their self- deliverance finally arrived. Although all of us who created Compassion in Dying are adamant in our support of the right of terminally ill individuals to determine the time and method of their dying, some of us felt equally strongly about providing personal presence at the time of death-especially for those individuals without loved ones who do not wish to die alone. Those of us who work in the AIDS community know of many lonely and sometimes violent suicides which haunt us still. All ill persons who decide on rational suicide deserve to die gently and peacefully, in their own beds, with a loving friend or other caring individual to hold their hand and be present in silent witness as they slip out of this world. To treat these deaths as dishonorable, sinful, or criminal in any way is to deny fellow human beings the compassion, dignity, and autonomy which should be everyone 's birthright. Those of us privileged to be doing the work of Compassion in Dying have experienced firsthand the gratitude of patients who are able to spare themselves the final indignities and-for them-meaningless end-stage suffering of incurable illness. A significant number of men and women who have worked in the medical profession are among our clients-people who know exactly what they are up against and what sort of death awaits them if the disease is allowed to run its course. Many in this group, and others as well, share a particular aversion to the notion of spending their last weeks or months in a medically-induced stupor as all-out efforts are called upon to manage the mounting pain. In some cases we have been privileged to watch entire families sit around the bed of their loved one, whispering words of love and caressing their hands and face as the patient quietly succumbs. This sort of death is not frightening. Indeed, for those for whom this is an issue of individual choice, these deaths are celebrated as victories, not mourned as defeats. Susan J. Dunshee is a founding board member & President of Compassion in Dying. Anyone requesting specific information about Compassion in Dying is welcome to write P.O. Box 75295, Seattle, WA 98125 or call 206/624-2775.
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