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A New Paradigm for End-of-Life Care

2013; Elsevier BV; Volume: 14; Issue: 2 Linguagem: Inglês

10.1016/j.carage.2013.01.032

2377-066X

Joanne Kaldy,

Geriatric Care and Nursing Homes

Like any physician, Dr. Joanne Lynn hates the fact that her patients have to die. But she also believes that talking about death can be an enlightening and even positive experience for residents and their families. In fact, she is so committed to this idea that she takes every opportunity to talk about death. The result, she hopes, is that people dying of chronic illnesses – especially frail elders in nursing homes – and their families will experience death in a way that brings them peace and comfort. Dr. Lynn, who directs the Washington, D.C.–based Altarum Center for Elder Care and Advan-ced Illness, is optimistic about the ability of long-term care physicians and other nursing home practitioners to build a new paradigm of care for people dying after long, chronic illnesses. It is important to discuss what matters most to the individual for the rest of his or her life, said Dr. Lynn. “People differ significantly in their goals,” she said. “I had a couple of older fellows who wanted to make sure they were well sedated so that they didn't babble a name from a long-lost affair. I had another resident who wanted to die outdoors. You have to know the person and what he or she wants,” said Dr. Lynn, a geriatrician and hospice physician. Planning ahead is essential, said Dr. Lynn, as “you can't call the family and say, ‘Mom is seriously ill. Tell me everything about her in 5 minutes.’” She added that planning for death is important even when residents seem to be healthy or recuperating. “Almost anyone in a nursing home could be in a rough spot next week. Almost all have limited resiliency.” Planning ahead requires more than just knowing whether a person wants to go to the hospital in case of an emergency or acute decline, Dr. Lynn said. “We need to know where they would like to go, what kinds of services or limitation of services they want, and what kinds of doctors they want. We need to preplan all of this.” LTC physicians and staff should attempt to conduct that planning at any possible time, said Dr. Lynn. “We have to find ways to trigger this [discussion] at each transfer,” for instance. She stressed that there is not a set timeline for reviewing end-of-life plans. “We may need to touch base in 6 months or 6 hours, depending on the situation.” She also noted that “we need to look ahead and be prepared to deal with incompetence and cognitive impairment.” Dr. Lynn acknowledged that physicians regularly encounter patients who just don't want to talk about death. She suggested that practitioners gently persist in creative ways with these individuals. “Some approaches help with resistance, but nothing works for everyone. I had one patient who refused to talk about death until a person down the hall from her died. She said, ‘I don't want to die like that,’ so I asked her to tell me more, and in 5 minutes she told me everything I needed to know. Before that, she always had been successful in shutting me down.” One way to encourage planning is to make such conversations commonplace, said Dr. Lynn. “Have this topic in fliers and on admission forms. Don't hush it up when someone dies. Talk to people who are aware. Residents are not well served by the charade of hiding death. We want people to know that they'll be important when they die.” Teamwork in its broadest sense is a big help when urging LTC residents to prepare for the ends of their lives. The growing national focus on care transitions will encourage nursing home and hospital physicians to interact, Dr. Lynn suggested. “Nursing home physicians should invite hospitalists to their facilities, and they should make themselves comfortable at the hospital,” she said. “The aim has to be good care transitions, not just preventing readmissions. Nursing home physicians have to have a good care plan for residents going home or into the hospital.” The fractured nature of chronic care is counterproductive, said Dr. Lynn. “Think about obstetrics. You would never think of having all necessary service [for pregnancy and birth] delivered separately by different practitioners and not have them communicate with each other,” she pointed out. “Yet in chronic care we assume hospitalists, primary care physicians, and nursing home practitioners all know and talk to each other when they often haven't even met. We need to build a system where doctors in different settings communicate and share information, and we need to pay for these services. It's not that hard, but no one has made it a priority.” Physicians need to continue to stress the importance of care transitions in their advocacy efforts, Dr. Lynn said. “We need to remind policy makers that continuity matters for patient well-being and that it is cost effective.” She estimated that “we can take 30% of costs out of the system by doing things right. For example, more than half of lab testing and imaging studies prior to hospital discharge are never used in patient care. This is a waste that we can help prevent.” Dr. Lynn urged physicians to get out of their policy-making comfort zones. “As a rule, physicians don't get involved in campaigns and politics, but we need to get to know our representatives,” she said. One way to get their attention is to “listen to [politicians'] stories about their families. They will have a greater understanding of the issues when they are personal.” Patients and families have the right to full information about what's ahead and to provide pointed feedback if they don't like what they hear, Dr. Lynn said. “We need to create an environment in which this is expected. People are so overwhelmed by nursing facilities. They have no idea what they're supposed to do.” If new residents and their families are met by encouragement and support and urged to be involved and have input, she said, they are more likely to be engaged in a positive way. “Get them involved in care planning,” she suggested. “I've often been at meetings to create care plans where patients and families are absent. If that happens a lot, you are probably doing something wrong in your scheduling.” She also urged LTC professionals to reach beyond nursing facilities’ walls, to home-based elders with chronic illnesses and to their caregivers. “We don't as a country help people be caregivers. These people often have to leave their jobs, and they lose their health insurance as well as their income,” said Dr. Lynn. “We need to organize family caregivers as a political force and insist on good working conditions for them.” She stressed that supporting the LTC population that struggles to stay in their homes has never been more important, as a growing number of seniors will have “woefully inadequate pensions.” Attention also needs to be paid to direct-care workers in nursing homes, Dr. Lynn said. “It's crazy having people take care of older people who will have no resources when they [themselves are] old. We can't continue this. Our field needs to speak up to say there are other places to be thrifty.” LTC's higher-level professionals need attention, too, Dr. Lynn said. The health care system needs to “change the skill mix for medical professionals, so there are fewer specialist physicians and more physicians in true primary care, as well as more nurses and social workers. We have to be clear that not everything having to do with the sick, frail elderly has to go through doctor's orders. We depend on doctor's orders because it's convenient to do so, but it's not necessarily cost effective. We need a different mix of expertise and authority to command these services.” These ideas may be difficult for some physicians to accept, said Dr. Lynn, but many will welcome the change. “Over time, we will figure out that it is silly for the physician to do something that a social worker, for example, could do better and cheaper.” Talking to the EndTalking to patients about planning for death can be difficult for some physicians. However, Dr. Lynn had some suggestions for making these conversations easier: ▸Start. “You can say, ‘I hope that I'm still your physician when your time comes. I hope that I know things such as who you want to be notified, what kind of memorial you want, and so on.’ The question about who to be notified always has an answer and puts you and that patient in a common understanding that there is an end of life. You can work back from this in your discussion.”▸Listen. “Americans can hardly stand 10 seconds of silence. If you ask patients if they have thought about what they want to happen when they die, wait a few minutes for an answer. They likely will talk. Make a note in the chart to open the topic on the next visit if the person was unwilling to talk this time.”▸Consider. “Realize that you don't always have to be positive, but understand that you can talk about difficult things in a positive way. You don't serve people well by always needing to be loved. I always tell physicians that if they've never had a patient dislike them, they're not doing something right.”▸Adapt. Customize the discussion for each patient. For example, if the person is a pet lover, consider bringing your dog into the room to break the ice.▸Acknowledge. “Come to terms with your own discomfort. It's okay to be honest and acknowledge that this is a difficult conversation for you to have.” Talking to patients about planning for death can be difficult for some physicians. However, Dr. Lynn had some suggestions for making these conversations easier: ▸Start. “You can say, ‘I hope that I'm still your physician when your time comes. I hope that I know things such as who you want to be notified, what kind of memorial you want, and so on.’ The question about who to be notified always has an answer and puts you and that patient in a common understanding that there is an end of life. You can work back from this in your discussion.”▸Listen. “Americans can hardly stand 10 seconds of silence. If you ask patients if they have thought about what they want to happen when they die, wait a few minutes for an answer. They likely will talk. Make a note in the chart to open the topic on the next visit if the person was unwilling to talk this time.”▸Consider. “Realize that you don't always have to be positive, but understand that you can talk about difficult things in a positive way. You don't serve people well by always needing to be loved. I always tell physicians that if they've never had a patient dislike them, they're not doing something right.”▸Adapt. Customize the discussion for each patient. For example, if the person is a pet lover, consider bringing your dog into the room to break the ice.▸Acknowledge. “Come to terms with your own discomfort. It's okay to be honest and acknowledge that this is a difficult conversation for you to have.”