Community Notebook

How to Die Joyfully

Since the early 1970s, Hospice has been involved in death. Hospice has mastered the gamut of the death experience, not just the part where the body breaks down, but the entire mind/body/spirit package leading up to and well beyond death. At Hospice, however, the emphasis is not on death, but on life.

The typical Hospice patient has a prognosis of six months or less. Some are actively dying. Even as they battle a host of ever-shifting physical challenges, the Hospice staff and volunteers are equally concerned with the patient’s “quality of life.” The idea is that a high quality of life (in general, but especially toward the end) ensures what they would call a “good” or “joyful” death. While “good death” may sound like an oxymoron, the folks at Hospice say it does exist and everyone should have one.
English physician Cicely Saunders, who visited Yale in 1963 to lecture on holistic hospice care, is often credited with the spark that lit the US hospice movement. In 1969, Elizabeth Kubler-Ross had described America as a “death defying” society in her book On Death and Dying. The first US hospice opened in Branford, Connecticut in 1974. In 1986, Congress enacted legislation to create a Medicare hospice benefit and states were given the option of including hospice in their Medicaid programs in 1986. According to 1998 records, 44 states have done so. According to the Hospice Foundation of America, there are currently 3,100 hospices in the United States. National Hospice and Palliative Care Organization reported in 1999 (the most recent study) that 700,000 terminally ill patients were served by hospices, 30 percent more than the year prior. Generally, it’s fair to say that the different hospices share the same philosophies overall, but as there is no one overseeing hospice organization, specific programs may vary from hospice to hospice.

Hospice operates in a tough arena. No question. Even the most enlightened of us are content to skirt the issue of death and invent heroic feats of denial to continue doing so. If we can’t even admit we’re going to die, how likely are we to even spend time considering death, no matter how “good” it is reported to be?

Hospice volunteer and CEO Benjamin Walker and patient Gustave Rapp, 90, a formaer professional wrestler.

“I was visiting a friend once,” said Michael Murphy, executive director of the Hospice Foundation, Inc. “We were up in a high rise and we were looking down on the street. He’s talking about the people going by, and he said, ‘Look at all these people. Every one of them is going to die.’ And then he said, ‘But not me.’”

Murphy and I were sitting in the light-filled offices of Hospice, Inc. in Hyde Park, shaking our heads over the story and I wondered if we were just more introspective or more emotionally prepared to venture into that territory by necessity after September 11. Or maybe it was because even in the face of so much death, we still understood the man on the high rise and his instinct to fight it every step of the way.

“Americans are the only ones who think they can make a deal in terms of end-of-life care,” Hospice CEO Ben Walker said. Since his arrival at Hospice in 1998, Walker has prodded outdated notions about death gently, by shifting attention from the doom and gloom aspects of dying to a view of death as a natural step in the life cycle. “We’re not denying death is coming [at Hospice]. It’s an equal opportunity phenomenon,” said Walker, who even compares Hospice rooms to birthing rooms.
Walker and the cadre of Hospice staff–physicians, nurses, social workers, health care workers, spiritual advisors and volunteers—not only delve into the most vulnerable of human experiences, but also reverse deep-seated notions about the Grim Reaper wherever possible. When Walker showed up at Hospice, pamphlets and brochures showed morbid deathbed scenarios, depictions he felt were inaccurate and unnecessary. His first death on the job was difficult, he said, but soon the life-affirming quality of the work made him see the vibrancy in patients and he began to view the end of life as positive.

“We see courage in everyday life in elderly folks who are frail. You look at their faces. You see their personalities, their energy and their courage,” said Walker, who also volunteers regularly for Hospice. “It’s a privilege to be there because you really see what they’re made of…that’s the affirmation I see when I go out there.”

In 1998 when he started at Hospice, they were working with 76 patients; now it’s up to 105. One of Walker’s goals was to get the word out about Hospice to as diverse and ethnically mixed areas of the community as possible. For example, Hospice has a presence in literally all area hospitals and has delicately built relationships with 11 local nursing homes, one of the more difficult areas to penetrate. Volunteer outreach, always a key component, now extends into the most rural areas to create what Walker calls “the hub system.” Ideally, volunteers should spread evenly out to even the most rural areas to get patients quick access to Hospice services.
Last year the Joint Commission on Accreditation of Healthcare Organizations, the national accrediting organization overseeing hospitals and health care organizations, awarded Hospice, Inc., serving Ulster and Dutchess counties, a “perfect” score of 100 after spending several days scrutinizing how they operate, a process that included shadowing Hospice personnel on medical visits, examining patient files and medical charts and interviewing staff and volunteers. Though nationwide, Hospice typically scores in the low 90s, it’s rare to get 100 percent.

Walker and colleagues are working toward a future of Hospice that will serve a dual purpose: end-of-life care, but also “palliative care” or treatment for patients who may not have a terminal prognosis, but have long-term chronic pain for whatever reason. Both Benedictine Hospital in Kingston and Vassar Brothers Hospital in Poughkeepsie are now planning palliative care units and/or services within the next few years. Though they might have slightly different kinds of presences in these hospitals (Benedictine, for example, will be an in-patient unit while Vassar Brothers will have its own consulting team) both address long-term, not necessarily fatal, kinds of pain. Hospice will discuss establishing palliative care at other hospitals as the need arises.

This “beautiful balance” paves the way for more patients, said Colleen Fleming-Damon, Patient Care Coordinator at Hospice. “There are so many people that are not dying, but who have pain. You have people with sickle cell, you have people with lower back pain, someone who has congestive heart failure, who has angina….” Fleming-Damon believes this new “palliative” piece of the larger Hospice scheme will allow her and other staff and volunteers to do what everyone in the medical community has acknowledged Hospice does best—manage pain and allow people to live their lives.

“Most docs? Great doctors, but they don’t specialize in pain management,” Fleming-Damon said. “Did you know that there are different types of pain? There’s somatic pain, which is visceral, organ-related, there’s neuropathic pain, which is nerve roots and nerve pain. The nerve pain is burning, shooting pain, like sciatic or toothache…somatic pain is deep. It’s a dull, constant kind of ache. And then you have your bone pain, which is probably the most challenging pain to control.”

I didn’t know that, but somehow it’s reassuring to hear that Hospice has this under control (see sidebar on common misconceptions about Hospice). I asked Fleming-Damon if it’s difficult for Hospice to ascertain the amount of time a patient has left, based on the mysterious nature of diseases. No, she explained, not difficult at all; in fact, Hospice and people who work with terminally ill patients can pinpoint the time left with a high degree of accuracy. Doctors often overestimate the time remaining in an effort to soften the blow. In some cases, depending on the individual, this may actually do more harm than good.

“Just talked to a young man yesterday, who said the doctor told him his wife had three years and she took the chemotherapy,” she said. “It’s seven months and she’s lying at Vassar Brothers Hospital and she’s dying. She’s 42 years old with colon cancer and she’s dying. Her husband said: ‘We had the chemo and it’s seven months. Where is the rest of the time?’”
In her voice is compassion tinged with frustration, a reminder of what Hospice is up against. They fight to disencumber patients from fear and denial so they are free to live well, make choices and have full control over their lives. Everyone at Hospice is realistic about the work they have cut out for them.

“There are people out there experiencing difficult deaths and experiencing pain,” CEO Ben Walker said, “and there’s no need for that.”

—Kate Schultz