More Mainers choosing hospice for end-of-life care

Meg Haskell

Jul. 16, 2008 (McClatchy-Tribune Regional News delivered by Newstex) -- DEDHAM, Maine -- Surrounded by the comfort and familiarity of his country home, Dwight Smith is waiting to die. It won't be today, and probably not tomorrow, either. He's in no hurry to leave this world, but neither is he fearful of the transition. He has made his peace, and he is ready.

Smith's beloved wife, Elsie, died of lung cancer about 10 years ago.

"And don't I miss her," he said, his voice thick with emotion. "She was a wonderful woman." Now he too has lung cancer, on top of his worsening diabetes, vascular disease and other problems.

Elsie wanted to stay alive as long as she could, Smith recalled recently at his home, and chose to undergo aggressive chemotherapy and radiation to fight her cancer.

"She suffered so goddamn much," Smith said, the memory still fresh and painful. "It ain't worth it."

Smith, 75, has chosen instead to let his disease run its course. He is among a growing number of Mainers, and Americans, who are choosing to die at home with the comprehensive support of a professional hospice agency.

Rather than subject themselves to the turmoil, trauma and expense of repeated hospitalizations and aggressive medical treatments as they draw nearer to inevitable death, more are deciding to stay home, stay as healthy and independent as they can for as long as they can, and accept the end, when it comes, free of pain, with dignity and grace.

That's the way most of us would choose to die, according to Pat Eye, director of the nonprofit New Hope Hospice in Eddington.

"If you ask people, most will say they want to die at home. They don't want to be isolated or alone, but they do want to be at home," she said in a recent interview. "If you can really care for them in their home -- medically, psychologically, socially, spiritually -- then they really don't want to go back to the hospital."

New Hope is just one of several agencies in the Bangor area that provide comprehensive end-of-life care, including personal assistance, nursing visits, physician services, spiritual support, grief counseling and more to terminally ill individuals and their families. They care for people regardless of their age, income, diagnosis, family dynamics, home environment or other factors. The primary requirements are that a doctor certify that the patient has six months or less to live, and that the patient agrees to accept comfort measures and other support rather than curative treatment.

Hospice doesn't judge its clients or attempt to change them, Eye said. Instead, hospice care adapts to make the best of every patient's situation and meet patients' needs on an individual basis.

"We have to begin where they are and how they are," she said.

Good and bad days

For Dwight Smith, hospice care allows him to stay on the historic homestead where he was born and brought up, where he has lived just about all his life, where he and Elsie raised their four children, who all still live no more than a stone's throw away. His cousin Robert Moore lives with him and is his primary caregiver. Other friends and family members drop in all the time to visit, bring food, and keep him up-to-date on family gossip.

On bad days, Smith takes it easy in the adjustable bed New Hope Hospice has provided him -- along with a walker, a bedside commode, and oxygen -- looking out the window to the driveway to see who might be coming to visit. On better days, he makes his way out to the old Bucyrus-Erie bulldozer rusting in his dooryard and, with Moore's help, climbs up into the battered operator's seat. Sometimes, he starts up the little 'dozer just to listen to the racket it makes. This exertion usually drains him for the rest of the day, but for Smith, a longtime excavation contractor, his bulldozer is almost like family.

A nurse from New Hope Hospice comes by once a week to see how Smith is doing. She measures his blood pressure, listens to his heart and lungs, checks his blood sugar, and examines his feet and legs for signs that his diabetes may be causing circulatory problems. She asks how he's sleeping, whether he's having any trouble with his medications, and what he has been eating. Smith enjoys these visits.

On a recent drizzly afternoon, registered nurse Valerie McDougal was chatting with Smith, Moore and some other visitors in Smith's living room.

McDougal explained that New Hope Hospice admitted Smith as a patient in March after a lengthy hospitalization, assuming he would be "a short admission."

"They all thought I was going to die," Smith clarified, chuckling. But the consistent professional care he has received, combined with the attention of his family caregivers, has kept him feeling well for longer than anyone expected. New Hope staff has been there to get him through a few rough patches without another hospitalization -- and they'll be there more often as the bad days get worse and his needs increase.

"We're very happy with hospice," said Moore. "They make sure of all the drugs, make sure everything else is fine."

McDougal said that's what she likes to hear. "My job is to take care of the little problems before they become big problems," she said.

Low use of hospice

The hospice trend is growing as our population ages and as private insurance programs and public payers such as Medicare recognize that even intensive in-home support costs less than paying for hospital-based care at the end of life. Yet the use of hospice services in Maine lags behind other states, even though Maine's population is the oldest in the nation.

Many studies have found that hospice services improve quality of life for patients and their families by providing them with comfort and control and decreasing their levels of pain, stress and anxiety.

Additionally, a 2007 Duke University study determined that hospice care reduces Medicare spending by an average of $2,309 per hospice patient. Hospice care for patients with terminal cancer showed the greatest savings over conventional hospital-based care, even when hospital care did not include surgery or other aggressive interventions and treatments. Savings are significant regardless of the diagnosis, the study found.

According to the National Hospice and Palliative Care Organization, the number of people in this country served by hospice has risen from 495,000 in 1997 to 1.3 million in 2006. The group estimates that in 2006 about 36 percent of all deaths in the United States occurred under the care of hospice programs.

Another national organization, Hospice Analytics, estimates that in 2006, 34.7 percent of all Medicare patients who died -- the vast majority of Medicare enrollees are 65 and older -- died under hospice care.

In Maine, the percentage of Medicare patients dying in hospice care in 2006 was just over 25 percent. That makes Maine one of the lowest users of hospice services for its elderly population, ranking 41st out of the 50 states. In general, New England states rank low in Medicare hospice use -- only Rhode Island ranked in the top half of states. (At 51 percent, Arizona had the highest use in 2006, and Alaska, at less than 18 percent, the lowest.)

Hospice providers interviewed for a 2007 survey by the Muskie School of Public Service at the University of Southern Maine agreed that the general public has little understanding of hospice care and the support services it can provide at the end of life. They said many medical professionals are uncomfortable telling patients their disease is terminal and fear that a referral to hospice will be perceived as giving up hope for a cure. And, like most health care providers, hospice agencies say they have trouble finding qualified staff to provide hospice services, limiting the number of patients they can serve.

Despite these barriers, hospice as an industry is growing in Maine.

Candyce Powell, executive director of the Maine Hospice Council, said that until the early 1980s, home-based end-of-life care in Maine was delivered on a voluntary basis by a handful of loosely organized agencies. But in 1984, Congress passed legislation to include specific hospice services in the benefits covered by Medicare, the federal health care program for people over 65. Shortly thereafter, private insurance companies also began offering coverage for hospice care.

"Once Medicare and other payers came into the picture," Powell said, "things really began to change." Now there are 19 nonprofit and for-profit companies offering hospice care in at least 40 sites throughout Maine. There are still a few volunteer programs, too, which offer a more limited array of services but still play an important role in the communities they serve, Powell said.

Maine is one of just a handful of states to require private insurers to include hospice care among the benefits they provide, thanks to 2001 legislation that also increased Medicaid funding for hospice and paved the way for the building of Maine's lone residential hospice facility, which is located in Scarborough.

Hoping to die comfortably

In Orono, 15 miles as the crow flies from Dwight Smith's back-road home, Dr. Robert Weiss -- retired physician, Harvard Medical School professor and former dean of the School of Public Health at Columbia University -- also has made the choice to die at home. Weiss is 90 years old. He lives with Minnie, his wife of 63 years, in a sun-filled contemporary home they had built when they moved here 12 years ago from the Boston area to be near their daughter Elizabeth and her family.

All three of Weiss' children are physicians.

Weiss has been diagnosed with pulmonary hypertension -- dangerously high blood pressure in the arteries of his lungs and heart. There is no cure, although he takes a number of medications to help control the symptoms, which can include extreme shortness of breath, fatigue and heart palpitations. It is likely the condition will worsen in the near future, paving the way for heart failure, internal bleeding and other potentially fatal complications.

Weiss is a man accustomed to being in charge of things, and this illness of his is no exception. He knows he can't beat it -- his doctors have given him less than six months to live. What he can do, however, is exercise some control over where, and how, he's going to die.

"It's not that I want to die," he said. "But I've lived a very full life ... and it's perfectly legitimate to expect to die. I just would hope to die comfortably." Like Smith, he intends to die in the comfort and familiarity of his home, in the loving presence of his family, tended by the health professionals who already visit him regularly from New Hope Hospice.

Weiss has strong, informed opinions about the health care system in the United States. The for-profit insurance industry, which pays doctors and hospitals for tests and procedures rather than for time spent with patients, motivates clinicians to "squeeze the last inch of life out of people instead of allowing them to die comfortably," he said.

Even routine, preventive testing should be discontinued once people reach a certain age, as is the policy in many European countries, Weiss said. As an example, he held up a recent notification that Minnie is due for a colonoscopy to examine her bowel for cancer.

"Ridiculous," he said, whacking the paper with the back of his hand. Even if his wife were to be diagnosed with colon cancer, he said, it would be unconscionable to provide aggressive treatment at her age. "My wife has the same philosophy I do," he added.

Every weekday morning a certified personal care provider from New Hope Hospice comes to visit Weiss. She helps him shower and dress, fixes his breakfast and cleans up the kitchen, makes his bed and tidies the bathroom. She leaves a light lunch in the refrigerator when she goes.

Once or twice a week, a registered nurse comes by -- often it's Valerie McDougal, the same nurse who checks up on Dwight Smith.

"I told her I was getting a sore on my right hip from sleeping on that side all the time," Weiss recalled. "She picked up the phone and that afternoon I had a new foam mattress. I've slept comfortably ever since."

He finds that degree of attention and responsiveness reassuring, and knows that as his disease progresses, the level of support from the hospice agency will keep pace.

"There's a nurse on call 24 hours a day who will come here if I need her. She won't tell me to call 911 and go to the hospital," Weiss said. "There is nothing I need they won't get. I've never had more caring service."

Information about Maine hospice care providers and efforts to improve use is available from the Maine Hospice Council at www.mainehospicecouncil.org. National statistics and other information from the National Hospice and Palliative Care Organization may be found at www.nhpco.org.

mhaskell@bangordailynews.net

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