Comfort and Dignity
More People Are Choosing Hospice Care in Their Final Days
Joanne Schlunk recalled a man who was told he had two weeks to live. His volunteer hospice aide asked him if he had any regrets, and he said he wished he had written his memoirs.
The aide offered to write down his thoughts for him. The dying man was skeptical, but convinced himself that two weeks’ worth of memories might have some value to someone.
A year later, the memoirs were finished. The author? Far from it.
The story demonstrates the unpredictability of the final days of life, said Schlunk, director of the recently launched Mercy Hospice in Holyoke. Hospice services are available to people whose illnesses are no longer responding to treatment — who are, in their doctors’ estimation, dying.
And there’s no reason not to accept the comfort, companionship, and relief that hospice care can offer, Schlunk said — because predicting the end of life is a tricky business, and that two weeks, or six months, might not really be the end.
“The focus of hospice care is comfort and quality of life, symptom management and support,” Schlunk said — all with the recognition that the patient has finally begun to succumb to his or her illness, and the end of life would no longer be a surprise.
Robert Engell, vice president of Allegiance Hospice in Springfield, said hospice care marks a significant distinction from traditional health care in terms of its goals.
“For most of us, when we go to the hospital, the focus is on curing us, fixing us. It’s acute intervention,” he said. “For people going into hospice, the recognition has been made — or is in the process of being made — that there is no cure for this life-limiting illness. So hospice is not a place; it’s a philosophy of care.”
It’s also one that increasing numbers of Americans are tapping into, as it enables them to receive care where they’re most comfortable, usually at home. This issue, BusinessWest examines the philosophy behind hospice and how it’s benefiting not only the dying, but those grieving for them as well.
Engell said the hospice concept emerged during the 1960s and 1970s, as pioneering studies of the dying process by Elisabeth Kubler-Ross and others were getting serious attention.
“There was a lot of work being done around that time on the needs of the dying person,” Engell said. The first hospice program in America was launched in New Haven, Conn. during the mid-1970s.
“That was the start of it,” he continued. “In the 1980s, Medicare recognized the value of it and lent it credence as one of its benefit programs. As people became more aware of a hospice benefit, they started taking advantage of it as an alternative to more aggressive treatments.”
Schlunk has witnessed the same trend, having spent 23 years in the field of hospice care. She helped launch one of the Bay State’s first such programs at Franklin Medical Center in 1985, and was excited to do the same for the Sisters of Providence Health System.
“This system stands for providing care at all phases of life and serving the needs of the entire community,” she said. “They stand behind that mission, so this was a logical development for us.”
Other area hospitals and health systems have similar affiliations, and Schlunk said it makes sense, allowing people to stay within the health system that might have served them for decades. One difference between 1985 and 2006, of course, is that many more people know what hospice is, and how they can access it.
“There’s much more awareness today of what hospice can provide and the value it has,” she told BusinessWest, recognizing at the same time that moving to hospice care is a significant emotional hurdle for families, since doing so explicitly recognizes that the end of life may not be far away.
“It’s a big step, a huge psychological step,” Schlunk said. “The timing has to be right for each family. Sometimes that’s a few days before the end, and sometimes it’s years before.”
Engell said there are some 3,000 hospice programs nationwide, and about 50 in Massachusetts. Typically, programs feature an interdisciplinary team of physicians, nurses, home health aides, social workers, chaplains, therapists, counselors, and volunteers, all working together to make sure the patient is as comfortable — and at peace — as possible.
Engell tells of hospice patients who wish they had started sooner, if only to have a chance to rest peacefully at home, where most hospice care is delivered.
“It’s really all about the relationships that are established between these professionals and the patient and family,” he said. “As with all good relationships, they take time to develop, so there’s a better benefit to those who access it early.”
However, compared to other models of elder care, such as nursing homes, hospice care is still relatively new. As a result, many people still need to be educated about what hospice is and isn’t, Engell said.
“Back in the ’80s and early ’90s, the majority of people who went into hospice care — about three-quarters — had some form of cancer diagnosis,” he explained. “Many people still have the impression that it’s just a benefit for people who have cancer, but that’s not true.” Still, he said, perceptions are changing; cancer patients now comprise just under half of all those in hospice.
The other major public-awareness hurdle involves communicating how much of a benefit hospice care is not just to the dying person, but his or her loved ones. The philosophy of hospice is closely tied to giving emotional and other support to the entire family — and those benefits, which are paid for by both Medicare and Medicaid, continue for a full 13 months after the main care beneficiary has died.
Why more than a year after? “Think about it,” Engell said. “All of us have a life cycle of events that run throughout the course of a year. Think about the first Thanksgiving that your mother’s not at the end of the table, or the first time your child celebrates a birthday and his favorite uncle isn’t there.”
Providing services throughout a full year, he explained, allows a family to access support as they encounter each holiday, special day, or other key event that might prove to be a surprisingly emotional challenge.
“We’ll receive a call out of the blue from someone we haven’t heard from in awhile,” Engell said. “They’ll say, ‘I thought I was OK, but I just need someone to talk to.’ That’s what’s really wonderful about hospice — it’s there to give relief, whether physical, spiritual, emotional, or psychological. It allows patients and their families to have comfort and dignity.”
Into the Sunset
Engell mused that, as awareness of hospice increases, more people will demand the service. “It’s a holistic form of care that allows for people to reconnect with their families in very significant and meaningful ways.”
Recalling the man who lived long enough to dictate his memoirs, Schlunk reflected on the futility of running out a clock that’s never accurate. Instead, the hospice team helps the patient focus on the goals of care — and of living.
“They’ve documented that the person is declining, or is expected to decline, but they don’t have to discuss that at length with the patient,” she said. “We don’t want to take away hope — and hope can take on many forms. It can be hoping that a miracle happens — and they do — but it may just be hoping to see a son graduate, or see a grandchild born. That’s OK. We want to hope right along with people.”
Even if there’s nothing left to hope for but a peaceful — and regret-free — end.
Joseph Bednar can be reached at[email protected]