The experience we call demoralization can arise out of a sense of meaninglessness, a loss of purpose, or deep spiritual distress. A person can be demoralized without being depressed. This moment may be tolerable or even happy. But illness and physical decline is such a loss that the person sees no meaningful future ahead. A young person with ALS might be in this state; alive now, happy to be alive now, but starkly aware of the future to come. This isn’t depression; it’s a kind of bleak, honest appraisal of reality. ALS is one of the most common reasons for choosing not to wait for the future to arrive.
I sometimes see a sixty-two-year-old man with rapidly progressive Parkinson’s disease. He is in the last months of his life now. He has trouble swallowing, and the disease has caused painful contractures and akathisia: he is constantly restless and agitated; his body can’t stop moving. He pedals and kicks and stretches and sits up and lies down. He says to me in what remains of his whispering voice, “I’m done with all this. There’s no point in living.” He gestures vaguely. “I want it here,” he adds, pointing to his chest, “D. N. R.” He is done. Is he depressed? Would you be?
As death approaches, as social roles fall away and the body’s needs begin to require most of your attention, your focus narrows. You may be thinking about the seemingly endless losses, your ever-increasing need for help, your fear and worries. Or you may be homing in on the meaning, reflecting on the past, attending to the changes every day brings. Dying is psychological work, emotional work, spiritual work. The simplest things take time; everything once taken for granted changes, and a person either gets sad or gets mad or settles into a new kind of peace. Sometimes the question is just Why? Not Why now? Why her? Why me? or Why so soon? but Why? Why death? Why an end to life? Why a mystery? The search for the answer may be called religion, science, philosophy, or something else entirely. Those who find a satisfying answer often find it difficult to explain. But no matter what we call this quest, the search for the why of death is one for the individual to undertake. Never bring your private beliefs about death to someone else’s deathbed. Together we collude in denial or aversion; alone we may find a way out.
To find meaning is to make sense of things, and the meaning of your death will not be the meaning of mine. As death approaches, one’s entire life can become coherent and whole. But the questions may remain and may never be answered: Who am I now? Why is this happening? You may seek a higher order of things in which a human life fits. You may seek a reason, an explanation, some clue that your death makes sense. It may be salvation or a matter of entropy. You may seek to know why, above all.
A man named John Shields died in Canada last year. Shields had a painful, debilitating disease and chose medical assistance in dying in the first months after the controversial Canadian law passed. He wanted to make his decision to die deliberately in front of others, in the hopes that his death could help other people. He had been a priest, a social worker, a union activist, an environmental leader; his entire life had been about helping people. In his final days, he had a vivid dream of sweeping up broken glass from a hallway, so that it would be safe for other people to walk.
6
Where?
Until the 1930s, most people in the United States died at home. Today about 80 percent of American deaths and almost as many in the United Kingdom take place in hospitals or nursing homes.
We usually have no choice about when we die, so if we can, we try to choose where we die. The rise of hospice services has brought back the idea of dying at home. Here’s that pretty picture again: Grandpa in his own bed, surrounded by loving family. But home is more complicated than you think, and often a mixed blessing at best.
Dying at home, with loving but untrained family who may not understand how to read distressing changes or use medicines properly, may be more uncomfortable than in the supposedly sterile atmosphere of an institution. The extended families and stay-at-home parents of the 1930s have disappeared into a maze of apartment complexes, long commutes, and extra shifts. This is one reason why poor people are more likely to die in a hospital than rich people. Our image of Grandpa at home in his own bed assumes that Grandpa likes his bed, that his house is safe and quiet, and that he really wants his relatives to take care of his most personal needs. He may actually want the professional attention, twenty-four-hour care, and security that a hospital provides. He may want no part of the sticky attempts at “closure” and exhortations for self-reflection that eager caregivers may bring. Hospitals are controlled environments and may feel safer to a fragile person than a house at the end of a long road or an apartment in a large complex of strangers. You can have a bad death in your own bed and a good death in an ICU.
If you are going to try to take care of a dying person at home, ask yourself who can help. Some people can’t do it. They disappear. They don’t say goodbye, answer calls, write letters. The whole family heads for the hills. (They call now and then, perhaps with advice or complaints or needs of their own.) In many families, one person becomes the primary caregiver. Or the only caregiver. On the one hand, this is abandonment; on the other, it is self-defense. Some people can’t do it; they can’t bear it; they would be no good if they tried. If you are the caregiver left behind, beware the simmer of resentment. Holding a grudge for any length of time is more damaging to you than to anyone else. If someone disappears at the critical juncture, it is their loss, and they may, in fact, be doing the best they can with what seems like an impossible situation. Yes, it’s awful for one child or sibling to carry the load. It’s awful for you; it’s awful for the others, too: they know they are missing something important. Meanwhile, you will have to fill the gap.
Presuming people are willing to help, and those willing are in fact physically, emotionally, and mentally capable of providing good care—and they feel able to provide the most intimate of physical care to, say, a parent or sibling—how much can people help? Who can get the time off work, away from child care? Who can stay through the night? Who can help you lift?
Deaths can destroy families. They are often shattering events, and not every relationship among survivors will last. A family is a dance, a web, a delicately balanced tower of fine porcelain. When a person leaves the dance, partners change, steps are forgotten, and we are not even sure who is leading anymore. No crisis can knock down the building blocks of adulthood faster. Your brother turns into the bullying eight-year-old who tickled you until you cried. Your aunt announces to your mother, I’m going to kill myself when you die. Your cousin appears out of the blue and loudly tells everyone that the dying person promised him a bequest, to which your sister replies, That drop-leaf table is mine. Take a hike. And you, you’re thinking, Help!
Until a death is right in the middle of the family web, its members may not grasp what dependency means, what caregiving means, what loss and grieving do to the thick, confused agreements between members. Until it happens, you don’t know what is going to be easy to do. You don’t know what will prove to be just too hard to do at all. Sometimes the missing relatives show up just in time to insist that everything be done differently, that’s not what she would have wanted, how could you make that decision without me?
The amount of what is known as “bedside care” required by a dying patient is more than a challenge to untrained caregivers. How will you handle confusion or agitation in the middle of the night? What will you do if a person falls? What happens if there is bleeding? Can you change the clothing or the bed linens if a person throws up or has diarrhea? Are you prepared to stay awake all night?
Dying people often need a hospital bed. In many homes, that means he will be limited to the living room. There will be no privacy. If he needs a wheelchair, the doorways may not be wide enough. He will need a shower chair and guardrails if he can get to the bathroom. If he can’t get into the bathroom, he will need a commode. In the living room. If he can’t stand, he may need a mechanical lift. Such lifts are large and cumbersome and simply don’t fit in many rooms, especially with
a hospital bed. The alternative to a lift is being confined to bed or being lifted by several strong people. Will several strong people be there when you need them?
I’ve worked in an excellent palliative care program for about ten years. About a fifth of our clients die every year. They are frail people with complicated medical needs, whether from age or illness or both. They need a lot of attention and we know them well. Few of my clients live in the family home; they need too much care for too long. I am used to deaths in which people have had a chance to plan ahead and make decisions, their symptoms are managed as well as possible, good bedside care is given, nurses visit regularly, and their families are supported and informed. The majority of deaths I see are anticipated and carefully attended, and I am confident that most of these are “good” deaths by any definition of the word. I’ve seen good deaths in foster care and assisted living and a retirement center and a skilled nursing home, and occasionally in the hospital—that is, places built with dependent people in mind, and trained caregivers available around the clock. I tend to forget that a lot of deaths are not like this for the simple reason that people are not getting good nursing and medical care by experienced providers.
But, you cry in dismay, we have hospice! About 40 percent of Americans have hospice services when they die. What that oft-cited statistic actually means is that 40 percent of Americans have had at least three days of service. Three days. The median length of time in hospice is only seventeen days.
When people think of a hospice, they are often thinking of what are called “freestanding” hospices: a special place you go to, to be cared for when you die. Only a few hospices are like this. A few are dedicated hospital units. “Home hospice,” in which the patient is cared for at home, accounts for 94 percent of hospice services in the United States. In the last fifteen years, the number of hospices in the US has almost doubled, and this increase is largely represented by for-profit corporations. Hospice for profit is a concept that many people find incongruous—or offensive. Almost one in five people admitted to a hospice are discharged from hospice before dying, often with only two days’ notice. The hospices with the highest rate for doing this have the highest profits. Federal regulators have raised the question of whether hospices are admitting people who really aren’t as sick as they are supposed to be and discharging a patient when, for whatever reason, she needs a hospital stay.
The criterion for entering hospice is often casually defined as “no one will be surprised if he is dead in six months.” In fact, there is a detailed algorithm of clinical signs and symptoms, and both a primary doctor and the hospice doctor have to certify a person’s eligibility. Some signs are universal and others are specific to an illness like cancer, Alzheimer’s disease, or HIV/AIDS. For instance, hospice criteria for pulmonary disease includes a “disabling dyspnea at rest; poor response to bronchodilators; pO2 below 55 mm Hg” and several other factors. What if you’re just very old? If you’re over eighty years old, most people won’t be surprised if you’re dead in six months. But an eighty-year-old may not have the clinical markers of organ failure needed for hospice.
The Medicare benefit for hospice requires people to give up treatments aimed at curing the terminal illness, and some may not admit people who want to receive purely supportive treatments like blood transfusions. This is one reason black Americans use hospice less often than white Americans. One of the most important reasons for the difference is the long history of inadequate and discriminatory medical treatment they’ve experienced; if you’ve been abused by the health care system for generations, it can be hard to trust any advice that implies less treatment. Far fewer black Americans have advance directives than white Americans, and they are more likely than white Americans to insist on advanced life support and resuscitation even in the face of terminal illness, often because of religious beliefs about the redemptive power of suffering and the importance of trusting that God can work miracles. To many black Christians, accepting hospice or signing an advance directive seems disrespectful to God. (A black minister who works in palliative care and is trying to overcome this resistance says, “What I don’t think they realize is that when they pray for a healing, death is a healing.…It’s not the healing that you might want, but as sure as we’re born, we’re going to die. And we’re healed from the troubles of this world.”)
Hospice doesn’t provide primary care; it covers help with the terminal illness and nothing else. You need another doctor (and insurance) for other problems, from migraines to asthma. Many hospices want the primary doctor to manage the symptoms of the terminal illness as well. Hospice only pays for medications needed for pain relief and the symptoms of the terminal illness. Hospice doesn’t pay for an ambulance or a trip to an emergency room without prior approval.
This stark separation of care can lead to real problems. Very few people have a single terminal illness and no other complaints. What if the most uncomfortable problem you have is arthritis? What if you need medications, a walker, and physical therapy to help with the arthritis while you die from a painless form of cancer? It happens. What if you are slowly dying from cancer and suddenly develop a curable problem that is making your life miserable and requires a hospital stay—say, kidney stones?
Hospice can be wonderful, providing reassurance, guidance, and support to both the dying and their family. But hospice can be woefully inadequate. Home hospice has to offer one visit from a nurse per week, and two visits from a nursing aide in a week, “up to 90 minutes” in length. In other words, about four hours of face-to-face care in a week; how much help you get in a crisis outside business hours may be dependent on “staffing levels.” A friend of our family lived alone in what is called a “single-occupancy” building: a room with a bathroom down the hall. He had hospice services. But even as he deteriorated badly and became unable to eat or go to the bathroom alone—even as he had uncontrolled pain—the hospice service didn’t send help or suggest that he needed more care somewhere else. It was, after all, a home hospice service. After he moved in with us, we saw a nurse for two brief visits, and no one else at all. I had gotten the hospital bed myself from another company.
The explicit intention of hospice is for your family to take care of you. The Medicare information packet explains, “Hospice benefit allows you and your family to stay together in the comfort of your home.” A few studies show that the majority of families are grateful for hospice services. A lot of anecdotal stories report the opposite. In part, dissatisfaction is the result of inaccurate expectations. People believe, and in many cases are led to believe, that hospice care means caregiving. That’s not what hospice services do. In some cases, the family is required to guarantee that a patient will never be left alone. Respite care, in which the family is given a chance to rest for a few hours or days, may or may not be available.
“You and your family are the most important part of a team.” But the interests of the patient and family may conflict. What if a patient wants hospice care and the family doesn’t want to provide it? Or wants to and simply can’t? Patient and family may have very different interests and hopes for the death. Any conflict between the wishes of the patient and the wishes of the family providing care is not going to go the patient’s way. The conflict may not even be between the patient and his family members but among the family members themselves. If one relative is the designated representative, she may need to hold that responsibility in the face of terrible accusations and arguments.
Palliative care is the specialty focused on comfort and quality of life in people with chronic and terminal illness, even while you seek a cure, even if you have come to terms with dying. (The cartoonist Roz Chast proposes “extreme palliative care,” which she thinks could include all-you-can-eat ice cream parlors and heroin.) I wear my bias on my sleeve. I believe in palliative care for anyone with a serious illness, and I know that palliative care can provide the support needed for a good death. Yet palliative care receives a laughably tiny fraction of the mon
ey spent on medical care.
One of the good physicians with whom I work keeps a cartoon on her office door. The doctor is talking to the patient, gowned and barefoot, sitting on the exam table: “You’ve got six months. But with aggressive treatment, we can help make that seem much longer.” No system is perfect, but a good palliative care program can make an enormous difference in a person’s life and death. The care given is interdisciplinary, which means that alongside the doctor and nurse may be social workers, chaplains, and physical, occupational, and speech therapists. Palliative care is concerned with everything that affects the quality of a person’s life, which might include treating the headache and going to the emergency room with a sprained ankle. This is all offered while you cope with cancer or heart disease or whatever brought you there. It may include help with bathing, visits to the eye doctor and the dentist, equipment like hearing aids and orthopedic shoes and walkers, recreational and respite programs, and visits to specialists.
Palliative care has a broad scope. Programs can be specific—for people in treatment for cancer—or general, for anyone with a chronic illness. A person in liver failure may benefit greatly from it while waiting for the transplant that will cure the liver failure. Cancer patients getting chemotherapy do better in treatment with palliative care because the team can help with symptoms. A program may offer acupuncture, help solve financial issues, sort out family dynamics, and design an exercise program—all while the person is trying to get better. My immense textbook calls this “active total care.” You can have palliative care while you’re trying to live, and you can have palliative care until the last hour of your life.
Advice for Future Corpses_and Those Who Love Them Page 9