Hospice care provides great benefits but isn't perfect

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This is the first in a five-part series that explores the experiences of patients and families who have used hospice services.

"Nearly 80 percent of us want to die at home, polls have shown, but most die in the hospital, often strapped to a bed in the intensive care unit. And a recent study suggests that many people are subjected to surgery, even in the last week of their lives." These hard facts are reported in a Washington Post article by Dr. Manoj Jain.

What's the alternative? A number of people have described to me their experiences with hospice services as their relatives have approached the ends of their lives. But is that a viable alternative for you or for someone you care about deeply?

To assist you in answering that question, it will help to start by defining a few terms.

"Palliative care" is designed to help improve quality of life for people with serious illnesses, whether they are expected to live for many years or for just a few weeks. Also known as comfort care, it is designed to reduce pain and manage other unwelcome symptoms.

Palliative care can be delivered in conjunction with traditional aggressive medical care such as that typically given in intensive care units, emergency rooms and operating rooms.

"Hospice" is designed to improve quality of life for people whose doctors believe that they have less than six months to live. Hospice uses palliative care, and also provides many other services designed to help people live the last part of their lives with as little pain and as much comfort as possible. Hospice provides emotional and spiritual support, and pays attention to the entire family, not just to the patient. Hospice helps people die with dignity.

Most patients who receive hospice care get those services in their own homes, and have their wishes to die in peace at home fulfilled. Hospice care may also be offered at other sites such as free-standing facilities, hospitals, and nursing homes.

If you have assumed that choosing hospice care would result in an earlier death, then you have bought into a typical misconception. Consider a major study written up in the New England Journal of Medicine. Shattering common beliefs, it found that patients with a terminal illness who received comfort care and less of the traditional aggressive medical care actually lived an average of nearly three months longer than did patients who received only traditional aggressive medical care.

It's one thing to read about the theory. But it may be more helpful to know what real people have to say. Here is Eloise's story.

"In the fall of 2009 I spent the last six weeks of my father's life with him. It started at the hospital with a diagnosis of lung cancer and quickly moved to hospice care at home, with me as my father's advocate and primary health care provider. I had some wonderful experiences with hospice."

Like many people, Eloise didn't know that hospice services are available for months before an individual is expected to pass away. "I thought you called them the last few days. I was surprised to discover that they are there to help much earlier than most people opt for it."

For example, Eloise was unprepared to take her father home from the hospital when she was unexpectedly told that he was being discharged that day. "Hospice came to our rescue and just jumped in. By 3 p.m. they had the (hospital) bed there."

A nurse came every three days, or more often if Eloise requested it, and "I felt like I had someone to call and they were there when they could be to back me up." One night, uncertain about the dosing of his pain medication, she called hospice at midnight to find out if she might accidentally kill her father by overmedicating him.

"But," she noted, "I also had to come to grips with the fact that they're not perfect. That was really hard for me to handle. We had a hospice worker who was going to get married and quite honestly probably wanted Dad to be done. That made me angry. On the one hand, I'm congratulating her and saying, 'Gee, have a good time on your honeymoon.' On the other hand I'm thinking, 'I don't even want to talk about that. I don't want to be thinking about that. I don't want to be thinking about you and your needs. When you're in this house, I want it to be about taking care of my dad.' That was difficult."

Issues arose with two other hospice workers as well. Her father simply did not connect with a social worker assigned to his case. Early on, Eloise politely asked her not to come back. In another case, the doctor accidentally misled her father into thinking that he was going to live much longer, by telling him, "We won't do any more radiation, not now," which her father heard to mean, "We might do more radiation later." Eloise was incredulous that a hospice doctor would create this sort of false hope for a man with only weeks to live.

Eloise also felt that she had been given too much responsibility and not enough guidance about managing the medicine cabinet's worth of drugs available to give to her father: medicines for pain, for anxiety, and so forth. However, she appreciates the fact that help was just a phone call away - even in the middle of the night.

When asked how palliative care and hospice had changed the quality of her father's life, Eloise was swift to answer: "It increased immensely just when he was diagnosed." They gave him pain medicine - he had been in tremendous pain for some time - "and he was not in pain for the rest of his life. It immediately increased his quality of life."

And what about going home with hospice care? "He wanted to be at home. He didn't want to be in the hospital. That was a huge benefit to him. He loved being in his own home. He took great pleasure in being there and he would say, 'What a beautiful day! What a beautiful day! I'm the luckiest man alive!' He was quite happy in the midst of all this. Even though he was dying, the quality of his life was very good." She noted that hospice services don't make death happen faster; "They make it happen better."

Still, to Eloise, "It felt like 90 percent of the responsibility for his wellbeing during the process of his dying fell on my shoulders, and while I was tremendously honored to be present for this important transitional time, I felt overwhelmed by the responsibility of it as well."

How did she feel about her quality of life in that situation? "When we went back to his house the quality of my life improved as well, because it was just me and Dad." She did not have to put up with a lot of rules or a hospital bureaucracy. "There was no 'I have to get the nurse to do this. I have to call someone to do that.' It was him and me and we were one. The experience of caring for him was direct and pure."

-- Next -- " Without hospice, my care would have been 1000 percent different "

Elizabeth L. Bewley is the author of "Killer Cure: Why Health Care Is the Second Leading Cause of Death in America and How To Ensure That It's Not Yours." To tell Elizabeth your story, email thegoodpatient@pariohealth.net.

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Elizabeth L. Bewley