The very public dying processes of Theresa Schiavo and Pope John Paul II provide a study in contrasts, but each reminds us of the need for preparation-in the lives of our patients and in our own lives.
Ms. Schiavo's anoxic brain syndrome resulted from cardiac arrest in early 1990. Neurologists said she was in a persistent vegetative state that left her without cognitive function. But her parents believed that her condition was reversible and that she should be kept alive by means of a feeding tube, while her husband Michael Schiavo concurred with medical experts that no amount of therapy or time would repair her damaged brain. Tragically, Ms. Schiavo never completed advance directives or discussed advance care planning with all of her family members.
The family's conflict was finally resolved when a court determined that her husband was the legal decision maker. From a bioethics perspective, Mr. Schiavo's decision to stop tube feeding was affirmed by the general principle of autonomy, based on his testimony of his wife's verbally expressed wishes. Two other ethical principles were relevant: "substituted judgment," determining what the patient would choose if she could, and "best interest," determining the best course by weighing the benefits against the burdens. But such reasoning will never sway everyone, and although the court rendered a definitive decision, the involved parties had conflicting ethical and religious viewpoints that an advance directive would have supplanted. (A recent autopsy report confirmed that Ms. Schiavo's condition would never have improved.)
In striking contrast, the pope's final days incited neither strife nor litigation surrounding the issue of dying. Because he was elderly and his death came gradually, and because he retained the ability to make his own decisions, a strict comparison with the case of Ms. Schiavo would be pointless. We don't know if the pope had the equivalent of an advance directive, but his willingness to prepare for and accept his death, along with his choice to die in his own residence rather than return to the hospital for life-prolonging measures, seemed to generate a calm respect for his dying. Such an example can inspire us all to prepare for death with honesty and courage.
Regardless of our beliefs about the dying processes of Ms. Schiavo or the pope, our personal beliefs are just that-personal. From my perspective, Ms. Schiavo was finally freed to unite with God, but my job as her nurse would not have been to use my beliefs to guide the decisions of her family members; rather, it would have been to help clarify and support her wishes as understood by her legal surrogate.
Nurses have the privilege and the responsibility of helping patients with determining, communicating, and documenting their wishes. But how many nurses do this on a daily basis without having done so for themselves and their own families? Are you ready for the transition that awaits us all?
Advance care planning should include completion of advance directives-a living will or a health care power of attorney or both-and solicitation of your loved ones' and your primary care provider's help in ensuring that your wishes are honored. For help, see http://viper.med.unc.edu/acp, a Web site that "provides comprehensive instruction on advance care planning" as well as helpful worksheets. To obtain your state's advance directives and required procedures, see http://www.caringinfo.org, the Web site of Caring Connections, a program of the National Hospice and Palliative Care Organization. I also strongly recommend that an addendum be attached that contains additional information to help family members implement your wishes. Five Wishes (http://agingwithdignity.org) is a good example.
The message of the need to prepare for death is for you, not just for patients. Have you relieved your loved ones of the burden of having to make decisions for you? If not, when will you?