Friday, July 29, 2011

Hospice improves care for dementia patients and their families

Hospice services substantially improved the provision of care and support for nursing home patients dying of dementia and their families, according to an analysis of survey responses from hundreds of bereaved family members. The research comes as hospice funding has received particular scrutiny in the debate over Medicare spending.

"People whose loved ones received hospice care reported an improved quality of care, and had a perception that the quality of dying was improved as well," said Dr. Joan Teno, a Brown University gerontologist and the lead author of the study published online in the Journal of the American Geriatrics Society. "This is one of just a few studies out there that has examined dying with dementia where the predominant site of care is a nursing home and can report the benefits of hospice services. As just one example, for nursing home patients not in hospice, one in five family members reported an unmet need for shortness of breath while that was only 6.1 percent for people in hospice."

Hospice care was a great comfort to Bartley Block, of Providence, when he lost his wife, Janet, to dementia in October 2010. He and Janet received service from Home and Hospice Care of Rhode Island on and off for about a year as her condition wavered, and then ultimately declined. Block said that even after his wife began struggling to eat, she still would get up and walk. Hospice workers would help the couple take walks at the nearby Tockwotton Nursing Home and patiently feed her food that they'd puree.

"It meant a great deal to her and to me," Block said. "It not only was able to calm her, but it was calming to me. There were spiritual sessions for me. They did so much for her to make her life easier."

That kind of experience is reflected in the responses of hundreds of families in the survey. In all, Teno's team asked 538 family members of nursing home patients who died of dementia to reflect on the care and support they experienced and observed at their loved one's end of life. Of that group, 260 received hospice care and 278 did not. Among the report's key findings:

Family members of hospice recipients were 51 percent less likely to report unmet needs and concerns with quality of care. They were 49 percent less likely to report an unmet need for management of pain. They were 50 percent less likely to have wanted more emotional support before their loved one's death. They rated the peacefulness of dying and the quality of dying more positively than families whose loved ones did not receive hospice care.

The survey also found that people who felt their loved one received hospice care "too late" had stronger concerns about care and support in almost every one of the survey's many measures. They felt worse off than people who had no hospice care at all.

"These are people who get slammed around the healthcare system in the last days of life," Teno said. "These are people with transitions who go from an acute care hospital to a nursing home in the last 24 hours. They are reacting to a set of circumstances that shouldn't have occurred."

Dementia is a particularly important area to study, Teno said, because the untreatable condition has only recently gained recognition as being terminal illness. The unpredictability of its progress, however, has led to a large number of dementia patients staying in hospice for longer than people with other conditions. That has made dementia a focus for scrutiny in discussions of cost.

But the study provides new evidence that hospice provides a meaningful benefit to nursing home patients with dementia and their families, such as the Blocks, Teno said. Policymakers should therefore factor in that evidence as they discuss the future of Medicare funding.

"It is a terminal illness," Teno said. "As we do payment reform we should preserve access and quality of care for those persons dying of dementia."

Wednesday, July 27, 2011

From Healing to Hospice: The Shift Toward a Good and Compassionate Death

University at Buffalo School of Social Work Professor Deborah P. Waldrop has seen people die. Too often, their lives have ended in pain and despair, spending their final days in an alienating institutional environment, just another patient in an impersonal progression that leads to what she calls “reciprocal suffering” for families who also watch their loved ones die.

There is another way. In the decades and multiple settings Waldrop has worked with terminal patients, she has seen a growing emphasis on factors that contribute to a “good death.” People can make that life transition in a home that has sustained them for many years, surrounded by the people who have given their lives meaning. “Comfort” can be the defining goal of a death without pain and suffering.

Too often, Waldrop says, critically and chronically ill patients lack information about options for care that can lead to that “good death” scenario. Bridging that gap -- identifying what factors or “trigger points” at which important conversations should happen -- is what her latest end-of-life research is all about.

She discusses her research in a video interview:

“People are without information, and providers and families often don’t have the skills to ask difficult question such as: ‘How much longer do you want to keep going back to the hospital?’” says Waldrop.

“There is an avoidance of death in our society that often sidesteps these questions. When asked, the majority of people, say they want to die at home surrounded by their family. Yet, actually 60 percent of chronically ill people die in hospitals and 20 percent die in nursing homes, so these wishes are often unfulfilled. There may be many reasons for this.

“We’re not having these conversations. We’re not addressing what people want. When you don’t really talk about it, things like unwanted aggressive treatment or another emergency room visit happen by default.”

Waldrop is a soft-spoken academic and researcher whose words accelerate and whose tone fills with intensity when she addresses the urgency of her work. If the idea of a good or more compassionate death is starting to enter the American mainstream, it’s an uneven process, with stops and starts. Various professional organizations throughout the country are focused on improving options for care in advanced chronic illness and encouraging conversations about individual wishes at the end of life.

But there’s an abyss that exists between what people say they want and what they end up doing, Waldrop says, a gap that brings physical, emotional, psychological and existential pain. And because more and more people are living longer, it’s more common than ever. The difference between choosing palliative care and continuing along a traditional medical path with a cure as the goal is often profound.

The bulk of Waldrop’s research consists of face-to-face interviews, almost 200, of patients and the people who have taken on the responsibility of caring for these terminal patients.

So far, the factors that affect the decision to ask for hospice care break down into two categories. There are clear physical factors. When does a person lose the ability to manage the activities of daily living?

“The loss of functional abilities is key,” Waldrop says. “That requires more caregiving from families. When someone has pain or symptoms that are out of control, that’s one of the trigger points to families that lead them to say they can’t do this anymore. What is their life going to look like from now on? How am I going to manage?”

There is also a spiritual, existential or psychosocial side. At what point do people realize they are dying? There is a point at which they recognize that death is approaching and they just want to be comfortable and surrounded by their family.

“What is it that brings people to the point at which they can consider different options?” Waldrop asks. _Once she identifies the trigger points that have determined when patients move from curative to palliative care, Waldrop will share these factors with patients facing terminal illnesses, their loved ones and also with professionals whose job it is to talk with families about the end of life.

Waldrop will continue to interview through July, when her grant from the National Institute of Nursing Research ends. Then she will publish her final conclusions._“As soon as possible,” she says when asked when the research will be complete. “This is my life’s work. I spent 25 years as a social worker sitting with people who were making difficult decisions among bad options. Additional and better options such as hospice and palliative care in a variety of settings now exist, but access is uneven. And, it has to start with frank, honest conversations about what people want and what families can do.

“People don’t have to pursue aggressive treatment as though there were no choices. The best approach for people is not always ‘Give me all you got.’ And these options have been slow to make it to the mainstream of medical specialties.

“This may be what people want most of all.”