I regularly read from the (mostly) Catholic journal First Things. Although I am not Catholic, I find that the Catholic thinkers have done some wonderful work. In this article, Michael Gemignani wrote about hospice care in an an American setting (http://www.firstthings.com/onthesquare/2012/01/the-role-of-hospice-in-assisting-a-good-death):
In a previous article, I offered as a possible slogan for hospice, “A good life deserves a good death.” But what is a good death, exactly, and what would have to happen to make it that way?
My first wife, Carol, died of a particularly virulent form of stomach cancer. By the time the first symptoms appeared it was too late to save her life. Both her surgeon and her oncologist were deeply religious Christians and compassionate human beings who spoke openly and honestly about Carol’s condition and prognosis.
Carol and I received the active support of friends, members of my office staff, and colleagues at the university where I was Dean of Sciences and Humanities, and members of the church where I assisted as a priest. We also had the support of hospice, whose chaplain was a gentle and holy man who was himself suffering from Parkinson’s Disease.
When Carol died, there were three others in her room with me: The rector of our church, a nurse from another ward who had come to visit Carol, and my office administrator who had been so supportive to Carol and myself throughout the time of her illness and who is now my beloved wife, Nilda. The Bishop of Indianapolis had visited barely hours before.
Being a companion to Carol through her terminal illness was one of the most powerful spiritual experiences of my life. At Carol’s funeral, the church was filled, the parish hall was filled, and many simply had to be turned away.
Was Carol’s death a ‘good death’? Surely, you are thinking, if there could be such a thing, this must be one. But a good death for whom? For Carol? For me, who had to watch my wife die, but who was able to sense both closure and peace at the end? For those who witnessed Carol’s strength and were inspired by it? Or for our two teenage children who shared terrible anger at the impending loss of their mother, who refused the ministrations of hospice, and who could not bring themselves to visit her at the hospital in her last days?
The same death that is viewed as a good death for some may be a devastating loss for others. Even hospice cannot be all things to all those affected by the terminal illness of a loved one. But I do offer the following as elements of a good death, elements that were blessedly present to me in Carol’s last days.
First, we must accept that there is a finality about death that must be faced. We cannot resurrect the deceased to do what he or she should have done before dying. Nor can those who should have made their peace with the patient make it after death. Those demons we cannot exorcize while the patient is alive will remain to torment the living after the patient dies. Guilt is a terrible legacy. A good death should bring a healthy sense of closure.
Second, one of the greatest fears of any dying patient is loss of control. A patient must be allowed to make as many decisions as practicable concerning every aspect of his or her living. The patient must be given as much information as possible, and medical and legal jargon should be translated into layperson’s language so the patient can better understand what he or she is being told. Information can be as important a palliative for the dying patient as analgesics. Information is part of a good death.
I might point out that information goes beyond medical information. Someone should do a review with a dying patient to make sure his or her will is up to date, its location is known, and it is safe from loss, tampering, or destruction. The family, too, should be kept well-informed and helped to find ways by which the patient might be reconciled with any family member who has become alienated.
Third, another of the greatest fears of most dying patients is excessive pain. Hospice should help the patient be comfortable. But comfortable does not necessarily mean pain-free. Some patients do not want excessive analgesics because they want their mind to be sufficiently clear until important business has been attended to, or they have been able to talk to members of the family that are coming in from out of town. It is the patient who must be allowed to set the parameters of his or her care.
As I wrote in my earlier column: “Hospice must never become another mechanism by which society can hide death, or through which society can abdicate its responsibility toward the dying and those who love them.” The role of hospice is to educate society about dying and a to make the three criteria outlined above a reality. When hospice workers are clear in their own minds what constitutes a good death, they can help their patients achieve it.
Michael Gemignani is a retired Episcopal priest, a lawyer, and a former university administrator. He has authored books in the areas of mathematics, law, computer science, and spiritual formation, as well as numerous articles in professional and trade publications.
Michael Gemignani, “Hospice in a Death-Denying Society”