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.
David Mills, Death Dignified by Christ
David Mills, Real Death, Real Dignity