Caring to the End
Ethical challenges for caregivers
William C. Spohn
Most discussions of ethics at the end of life consider the difficult medical decisions that have to be made, who makes them, and who pays for their consequences. But these painful dilemmas—Should treatment be withdrawn? What about assisted suicide?—do not occur in a vacuum. They are played out in the context of a relationship between the dying person and his or her caregivers.
I'm not talking here about doctors and nurses but about families and friends who have taken care of the person as he or she approaches the end. Their ethical stance at the moment of decision, their ability to know, to hear, or respond to the dying person's wishes, will be shaped by how they have responded to their loved one throughout the illness.
I would like to reflect on the experience of caring for the dying by ordinary people. What care do we owe to friends and relatives who cannot be cured? What impact does sustained caregiving of aging and dying persons have on our character?
Not much has been written on this subject, for understandable reasons. First, some aspects of sustained care-giving are idiosyncratic and not worth generalizing. Also, frustration, anger, resentment, and despair—which so many caregivers feel—aren't the reactions we want to publicize. At bottom, we may keep grief private because words seem to beggar our loss or demean the dead.
Perhaps we are reticent because we fear others will not be able to understand what we have been through. I have an friend whose mother died some years after his father, when he and his siblings were already adults. When his brother phoned him to break the news, he said, "Now we are orphans." Everyone who has lost both parents knows exactly what he meant; probably no one who has not can understand it.
Yet eventually, most of us will confront these issues. Advances in pharmaceuticals and medical technology have extended the duration of life, as well as the duration of dependence on others at the end of life. These developments also mean that many adults will spend a significant portion of their lives caring for aging relatives, possibly even more time than they will spend raising dependent children. Although many of the elderly spend the final weeks and months of life in a hospital, hospice, or nursing home, most dying people are cared for in their own homes or in the homes of family members.
Sustained care-giving brings a lifelong relationship to a new phase and often reveals complexities we had not suspected. It challenges some of the caregiver's deepest beliefs, testing our emotions, forcing us to rework accustomed ways of relating, and making us confront our limitations and mortality. I would bet that everyone who takes care of a loved one to the end of life emerges as a changed person. The same is probably true for those who dodge the responsibility. Either way, this practice presents a serious ethical challenge to most people who make it to the middle of life.
We can bring general moral principles to this challenge: The duty to care remains even when cure has become impossible; children have special obligations to their aged parents based on justice as well as charity.
But moral principles, however helpful they are for reminding us of basic human duties and ones that arise from specific roles, cannot capture the challenge of sustained care-giving. An ethics of character is a more appropriate approach for reflecting on the depth and scope of this demanding practice.
Character ethics pays attention to the formative impact our actions have on who we are becoming. Acts leave a residue on habit and, over time, these habits of the heart define the sorts of persons we are, for better or worse. As the old saying goes, "Sow an act, reap a habit; sow a habit, reap a character; sow a character, reap a destiny."
That was certainly my experience as my siblings and I faced many of the familiar challenges posed by the gradual decline of our parents. Both had enjoyed good health for years, but my mother was diagnosed with Alzheimer's disease in 1993 and died four years later at age 86. My father's mobility was gradually limited by advanced arthritis, and he eventually died in 2000 of congestive heart failure at age 95.
Fortunately, they were able to maintain their independence in their own home with the assistance of their six children, five of whom lived in the San Francisco Bay Area. We had to assume increasing responsibilities and make some difficult decisions: helping out with errands and housework, taking over their finances, getting rid of their car through a mixture of diplomacy and chicanery, shopping for their groceries, driving them to frequent visits to physicians and clinics, managing their medicines, consulting with their physicians, responding to emergencies, and getting them hospitalized on occasion.
We began this process in coping with my mother's Alzheimer's, a cruel disease that gradually erases first memory, then psychic stability, then physical mobility, then coordination until it finally eliminates the capacity to swallow. It advances slowly but relentlessly, a decline that patients recognize intermittently. As one woman in the early stages of the disease wrote, "It is like bits of myself keep getting erased."
At first, my mother's driving skills began to slip, a particular problem since my father had never learned to drive. She couldn't balance the checkbook, then she had difficulty writing. A gracious and spirited woman, she became increasingly anxious, and at times her fears materialized into delusions. The loss of short-term memory became more pronounced, so that she would become disoriented in the supermarket or forget that she was boiling something on the stove.
My father took care of my mother for the first years of her decline and insisted that he did not want "strangers in our home" as health aides. This took its toll on him both physically and emotionally and led to increasing tension between my parents. He had a difficult time accepting that she had a progressive disease and fought to keep their independence.
They did not want to move out of the family home, and none of us had houses or apartments that could accommodate them. Husbands and wives all worked, and some had young children to raise. It reached a point where we siblings had to intervene and insist that they needed home health care workers. I was deputized to tell my father this, and he was not about to listen. Perhaps he saw each concession as a surrender of independence and another step closer to death. Despite his denial and vigorous objections, however, he came to realize that he no longer had a choice in the matter.
That confrontation between an 88-year-old father and his 49-year-old son was a watershed in our relationship. It paralleled the one that occurred in my older brother's protracted but ultimately successful effort to consolidate the family resources into a living trust. Another confrontation occurred a year later when it became obvious they needed a live-in caretaker, but by then it was clear the balance of decision-making power had shifted to the next generation.
In 1995 my mother had to be placed in a skilled nursing facility run by the Sisters of Mercy, whose staff lived up to the name. Since my brother and I lived nearby, we could visit several times a week and get her to Mass in the chapel on Sundays. Conversation grew more difficult, but just being there regularly seemed to reassure her, even as it quickly slipped out of memory.
The last years of my father's life may have been the best ones. His intellectual prowess and force of personality dimmed, but he became more accepting, more understanding, and more able to express his gratitude. A little from us meant a lot to him. Ironically, the home health care workers he had so staunchly resisted became an antidote to loneliness after my mother died.
After the age of 90, his relationship to each of his children changed noticeably, as did ours to him. He allowed us to take care of him in ways that would have been unimaginable before. He had said the only way he would leave the home he had lived in for 44 years was "feet first," and he was right about that. Although admitting to some confusion, he read the daily paper and pronounced on matters political and ecclesiastical up until the last month. Two weeks after the family gathered for his 95th birthday, he quietly succumbed to heart failure.
During my parents' last years, my siblings and I took turns visiting them more frequently and getting them out to church and Sunday brunch. These errands became part of our daily and weekly routines, as the months went on, they became habitual.
What I did not realize during those years was how much these routines were changing us and our closest relations. My wife often accompanied me on these errands and visits, which deepened the bond of our new marriage; somehow it fleshed out the promise that we would be there for each other when our time came.
It also changed the way I and my siblings related, as if we looked at one another in a new way. We also had to accept our limits, that some could care in practical ways and others could not.
My parents came to know they could count on us, and we slowly discovered new resources to care for them. Since their needs had to come first, it didn't matter whether it was convenient or satisfying for us.
Although we knew these calls, visits, and errands were our parents' lifeline to the outside world, these routine visits often stirred up a welter of emotional reactions. Sometimes they were rewarding, sometimes frustrating, often both. In some recesses of the unconscious, parents are not supposed to grow old and fail. They were the omnipotent, talented, generous creatures on whom we had been utterly dependent, and somehow they were always supposed to stay that way. Affection mixed with impatience at their increasing limitations.
Beneath the impatience was fear. I could understand for the first time why some people shunned the elderly, even their own parents. When they would offer the excuse, "I don't want to remember them like that," they were probably saying, "I don't want to see myself like that." When the dying mirror to us what we are afraid of, the first instinct may be to turn away.
The greatest fear many of the dying have is abandonment. When the well avoid them, they are sending a terrible message: At the end you will be on your own. Stanley Hauerwas, professor of theological ethics at Duke University, writes, "We may be initially quite sympathetic with someone with a chronic disease, but it seems to be asking too much of us to be compassionate year in and year out. Thus the universal testimony of people with chronic illness that their illness often results in the alienation of former friends."
But chronic illness is often a feature of aging. When people have been fundamentally healthy, as my parents were, it seems that it takes almost as much time to grow old as it does to grow up. Many times, physical capacities are not lost suddenly; they just wind down.
Whatever its particular symptoms and pathologies, aging is not a disease; it cannot be arrested or cured. Caregivers who don't accept that can become very controlling. We treat symptom after symptom, increasingly conscious that any success is only temporary. The possibility of cure is finally irrelevant to care although sometimes we cling to the hope of cure to avoid the truth that all we can actually do is care.
At bottom, care is what the aging and dying actually want: They want our presence. We may want profound conversation or explicit mutual reconciliation, but care-giving is finally done for their sake, not ours. The mundane or messy things that need to be done, week after week, are platforms for constant presence of the vital to the ill.
As the twilight of advanced old age deepens, our inability to halt its course may force us to learn to hope. As Vaclav Havel wrote, "Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, no matter how it turns out." Pain and suffering do not make sense, at least not on their own. But we may find traces of meaning—even of God's presence—in the care we can give those who suffer and the ways we are sustained through the difficult caring process. Since my own journey through this process, death is more real but less terrifying than before because, in the end, my parents were not abandoned.
I realize that sustained care to the end of life is more arduous for many families than it was for ours. Too often geography and old hurts separate relatives, financial resources dry up, the elderly reject the care that is offered or take it for granted, and the burden of care falls on a single person by accident or default. However it happens, no one goes through this life-defining passage unscathed, but we are changed.
Sustained care to the end—whether we provide it with our own hands or through others—is what we owe our loved ones. But the dying give back an unexpected gift to those who will stay by them. They prepare the caregivers for what awaits them, too, and they may even help them to face it with hope.
William C. Spohn is director of the Bannan Center for Jesuit Education at Santa Clara University and a scholar of the Markkula Center for Applied Ethics.
This article was originally published in Issues in Ethics - V. 14, N. 1 Winter 2003.