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The Role of Hospice in Assisting a Good Death

Mon, 06 Feb 2012 00:01:00 -0500

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.

RESOURCES

Michael Gemignani, “ Hospice in a Death-Denying Society ”

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Hospice in a Death-Denying Society

Thu, 20 Oct 2011 00:01:00 -0400

I remember a discussion that took place awhile back at the Brazoria County Advisory Board concerning slogans that might be used to promote hospice. One slogan proposed was: “Hospice - It’s about life.” I suggested: “A good life deserves a good death.” My memory is aging along with the rest of me, but, as I recall, the consensus was that any slogan that contained the ‘d-word’ would be a turn-off. We needed to stress life, not remind people that they were dying. But, I submit, death is precisely what hospice care is about.

As a priest, I am forced into more encounters with death than most civilians outside of the medical profession. And I have come into contact with the hospice movement from various positions, as both a promoter and consumer, at different times in my life. Let me then try to draw some conclusions about what I perceive as the counter-cultural role that hospice can, and ought, to play in a society that wants to cloak death in invisibility.

Death in times past was not necessarily less tragic to those who lost loved ones, but death was more prevalent, more public, more visible, and more a natural part of life than it is today. Our society is truly death-denying. Fitness centers, alternative medicines, an endless supply of diets are the order of the day. Consumers want the fountain of youth. You may object, of course, that death is all around us. The news and the movies are filled with death. But I suggest that this phenomenon itself is a further sign of a death-denying society. Death has become so commonplace as to be unreal. We can ignore death because it happens to others and not to us, or it is simply pretend. We can gloss over real fear with pretend fear. This is why people ride roller-coasters and go to horror shows.

And this is one reason why the tragic events of 9/11 caused so much panic and anxiety in the United States. Death was suddenly shoved in the face of a society that did not want to acknowledge that its own people could die, and the vast majority of us felt instantly naked and vulnerable. The result was a demand to protect society from any further public reminders of our mortality, even if the cure proves worse than the original disease.

Both of my grandmothers died at home. I was still a toddler when my father’s mother died, but I remember she lived with us in a room of our house in Baltimore after my father brought her over from Italy. I was older when my mother’s mother died, but she, at the time of her death, was also in her own bedroom cared for around the clock by her large extended family. How touching these deaths seem now when death in one’s own home is increasingly rare. What has changed over the span of the past half-century?

First, of course, the vastly increased mobility of society allows for fewer and fewer extended families. Second, people are living longer and often have multiple complex ailments in their final years. Elderly spouses are not strong enough to care for their dying mates, often needing extensive care themselves And the cost of end-of-life care is growing faster than the rate of medical care generally. The expense of round-the-clock nursing at home is one that only the wealthiest can now afford. Cynics say that we call old age our golden years because we need so much gold just to survive with a modicum of comfort and dignity.

One of my most unsettling hospital visits, even after some 20 years as a priest, was one of the first I made after becoming rector of St. Paul’s Episcopal Church in Freeport, Texas. Ed was the husband of one of my parishioners. He had suffered a massive heart attack and was in the coronary intensive care unit. Ed was splayed on a table with more tubes than I could count protruding from his almost naked body. When he turned to look at me, though he could not speak, his face shouted volumes of anger. He died several days later. Were his last days truly ‘better’ than those of my elderly family members because of the immense medical firepower brought to bear to keep his heart beating? Had Ed had become a problem to be solved; a chance to display all the exotic sorcery of modern science? Had he, in some sense, been diminished as a human being at the end of his life?

Those familiar with the history of the modern hospice movement know that it was only in the 1960s that Dame Cicely Saunders founded St. Christopher’s inpatient hospice in London. Dame Cecily saw many of the trends I presented above beginning in her own day and wanted to find a mechanism to provide holistically and compassionately for the needs of the terminally ill.

Dame Cicely wrestled, as we must, with the question: What is a good death? I submit that one of the roles that hospice can play is to help society address this question compassionately and intelligently. Hospice can be an honest broker when it comes to questions concerning the dying, and the movement is uniquely positioned to address issues concerning death and dying that are widely shirked. Hospice must continually point to the elephant in the room.

The hospice movement understands that the death of a patient affects not only the patient, but the patient’s family and friends, and even society at large. 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. Hospice, in other words, must never allow itself to be an avoidance mechanism.

So which of those two slogans should we prefer? Perhaps we can have them both, but in proper relation to each other. Life unquestionably needs positive affirmation. But in a death-denying society, someone must also be speaking out. Someone must declare the truth that no one can avoid death. We will all die, and it is harmful to all of us to try to hide death as if it is a loathsome disease or an unnatural act. If hospice will not make this statement, then who will?

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. His experience with hospice includes being a client of hospice in his first wife’s terminal illness and as a hospice board member.

RESOURCES

David Mills, Death Dignified by Christ

David Mills, Real Death, Real Dignity

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