Pulse
No Place Like Home
Economic realities make it difficult to spend one’s final days at home.
Maggie O’Connor, M.D., won’t forget the 48-year-old man who had come to San Diego, where she was doing a palliative medicine fellowship, from an island in the Pacific to be treated for cancer that had invaded his spine.
When hope faded and his pain became intolerable, he was moved into hospice care. Throughout the ketamine injections, lidocaine infusions, and other efforts to make him more comfortable, he talked about the one thing that could ease his suffering more than anything medicine could offer: going home. He would describe the taste of the air on his island, the sound of the ocean, the kindness of the extended family he so missed.
But home was a 12-hour flight away, and before the hospice team could figure out a way to manage his symptoms in order to honor his wish, the man died. O’Connor was struck that his wife’s grief centered around their decision to come to America for treatment. “She mourned the fact that he had died in a foreign place, that he had not died at home,” recalls O’Connor, who is now a lead physician for the palliative care team at Abbott Northwestern Hospital in Minneapolis.
The desire to spend one’s final days at home is powerful and nearly universal. Many of the patients O’Connor sees today talk more about going home than about a possible cure or having a good remission. “That need to be home, the need to smell the land, to see that familiar terrain is particularly important,” she says. And studies from the United States and Europe confirm that most people with terminal illnesses wish to spend their final days at home rather than in a hospital or other care facility.
“Being at home allows people to have more control of their environment, more control over who comes to see them, what happens, when they eat, when they have their personal care, and who provides that care,” says Martha McCusker, M.D., a geriatrician and associate medical director of Hospice of the Twin Cities. “It allows them to have family care for them, which in itself is a gift to family members.”
The Economics of Dying
Although asking to die at home sounds like a simple request, doing so can be more complicated than one would think. According to the Brown Atlas of Dying, the percentage of Americans who actually spend their final days at home has held steady at about 25 percent since the late 1990s.
Why the difference between what patients want and what actually happens at the end of life? For one thing, people who are dying may wish to be at home but don’t want to impose on others as they require increasingly more help with personal care, eating, getting in and out of bed, and taking medications. And family members may not feel equipped to play the role of caregiver, especially as the person’s needs become more complex. “It can be very difficult for family members,” McCusker says. “The intense, intimate nature of personal care is hard physical work, and it can be demanding emotionally.”
Being a caregiver can be financially demanding as well. Many potential caregivers, whether they’re the dying person’s spouse, children, or other relatives, need to work to pay the bills and maintain health insurance. Hiring caregivers can be costly, as personal care services often aren’t covered by insurance.
Hmong Beliefs about Home Deaths
Some patients may not want to die at home. Those with traditional Hmong beliefs, for example, believe bad luck may come to a family if their spirit doesn’t leave the home.
Donald Grossbach, M.D., medical director of Allina Home Care, Hospice, and Palliative Care, says his organization has had Hmong clients move out of their apartments because their landlords, who are traditional Hmong, don’t want them to die there for fear of not being able to rent the place until a shaman removes the spirit. “It’s permissible to allow those spirits to be in the hospital,” Grossbach says. “But some members of the Hmong community don’t want to live in a place where spirits are hanging around.”
Barbara Greene, a consultant with Hospice Minnesota, whose expertise is dealing with multicultural issues, says Hmong clients who have traditional beliefs sometimes arrange for a loved one to spend their last few days in a nursing home, where they can be cared for and surrounded by family but don’t risk bringing them bad luck.
But things are changing, she says, adding that younger members of the community don’t always ascribe to such beliefs. “There are wide variations in end-of-life practices among the Hmong,” she says. “So it’s important for providers not to assume that a death can’t take place in the home.”—K.K.
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According to Donald Grossbach, M.D., medical director for Allina Home Care, Hospice, and Palliative Care, Medicare will only pay for home care if a person is so debilitated they cannot leave their home. Medicare and private insurance will cover hospice, which can assist family caregivers by arranging for registered nurses, aides, social workers, clergy, and even physicians to come to the home, but the patient’s physician and the hospice medical director must agree that it would not be surprising if the patient died within six months, given the usual course of the illness. The patient also must be willing to give up life-prolonging treatment.
Grossbach and others consider hospice the best option for supporting patients who wish to spend their final days at home. It not only improves the quality of life for patients and their caregivers, it is also cost-effective. A 2007 Duke University study found that the cost of care for Medicare patients who died receiving hospice services was an average of $2,300 less than for those who did not. Because of the cost-effectiveness and growing awareness of hospice, the number of patients who used such services grew 162 percent between 1997 and 2006, according to the National Hospice and Palliative Care Organization (NHPCO). Of those patients served by hospice, nearly three-quarters died in a place they considered home, whether it was a private residence, nursing home, or residential facility.
But the type of patient who uses hospice has changed and, as a result, the federal government is starting to take a closer look at who qualifies for such services under Medicare. When hospice was established in the United States in the 1970s, the majority of admissions were cancer patients. Today, people with cancer account only for about half of those in hospice, with the majority of others suffering from chronic problems such as heart disease, dementia, lung disease, or an unspecified debility, according to the NHPCO. And these other patients often outlive their six-month prognosis.
Because of Medicare’s closer scrutiny, J. Paul Carlson, M.D., hospice medical director at Park Nicollet Methodist Hospital, has noticed some patients with dementia who have difficulty speaking, swallowing, and moving are being denied hospice benefits. The irony, he says, is that studies have shown that when such patients are cared for by loving family members at home with the help of hospice, they live longer than those with similar health issues who are in a hospital or nursing home. “The whole issue is they’re not dying soon enough,” he says, adding that he’d like to see a system set up where Medicare pays a lower per diem for hospice patients who don’t need a lot of care but may need help for a longer period.
Difficult Discussions
Given those obstacles, how can physicians help patients who wish to spend their final days at home? Hospice directors interviewed for this story say the best thing is to discuss with terminally ill patients their wishes about where they want to die—something that doesn’t happen often enough in the doctor’s office. An AARP study of North Carolina residents found that 86 percent were comfortable talking about death but only 11 percent had discussed it with their physicians. “The physicians are waiting for the patients to bring it up, and the patients are waiting for the physicians to bring it up,” Grossbach says.
In addition, physicians have difficulty predicting survival. University of Chicago researchers described in a 2000 British Medical Journal article how physicians believed their dying patients would live 5.3 times longer on average than they actually did. “As physicians, we are not good prognosticators,” McCusker says, adding that many physicians are unsure about who is really at the end stage of their disease and may be appropriate for hospice care.
For that reason, many patients who may be able to remain in their homes with the help of hospice aren’t referred early enough, if at all. “Most evidence suggests the optimal benefit for people being on hospice is achieved between three and six months,” McCusker says. “It gives them time to get symptoms under control and do the other work of dying—addressing fears, addressing concerns about the welfare of family members, making sure their affairs are in order.” But, according to the Government Accountability Office, nearly 30 percent of Medicare beneficiaries are not enrolled in hospice until they are within a week of their death. Adds Grossbach: “At that point, it’s difficult for hospice to do anything but treat their physical symptoms.” In those cases, patients may end up exactly where they don’t want to be—in the hospital.
In order to help patients have a good death, McCusker says both physicians and patients need to be realistic about the ultimate outcomes of chronic conditions. That may mean letting a heart failure patient know soon after diagnosis that even though medications can manage symptoms and extend life, they won’t cure the disease, or explaining to a cancer patient that a new chemotherapy may give them only a few more months. “By doing that, you’re not being overly pessimistic,” she says, and it allows patients to start thinking early on about what sort of care they want and where they want to be at the end—and how they can make that happen.
When doctors and patients have those conversations, McCusker says, patients often can have the death they want in the place they want to be. She recalls the final days of a man who was suffering from a progressive neurologic condition and wanted nothing more than to be with family. As the man’s condition worsened, he and his wife moved in with their son and his family. The son had set up a room for his father off the home’s great room. The man’s wife attended to his needs, while the children, grandchildren, and other family members spent time with him.
McCusker made about half a dozen home visits to her patient. As his physical condition declined, she could see that he was surrounded by the people who meant the most to him in a place he wanted to be. Although he couldn’t speak or gesture in a meaningful way, he gave her looks that reassured her that he was comfortable and content. “I could see he was at peace,” she says. “And if he had to be dying, this was the way he wanted it to happen.”—Kim Kiser