Trying to Permit Dying With Comfort and Dignity

Helen Kenny, 81, died well. Not perfectly, for such an end presumes a lot in these days of managed care and scarce resources.

But a pretty good death is increasingly possible, and here’s what one looks like. First the economic reality: Helen and James Kenny were forced to sell their Bay Area home of 46 years.

That’s the cost of care for a woman like Helen, who suffered from leukemia and Parkinson’s disease, for whom everyday life became too tough to navigate without hiring major help for minor tasks.

So the homemaker and the retired Contra Costa County supervisor moved together to a board and care home just around the corner from their son and daughter-in-law. In Helen’s last nine months of life, they formed a regular snail’s-pace parade to Jack and Annie’s house for dinner. First Helen in her wheelchair, then the attendant, pushing, and James, taking up the rear with the help of his walker.

Finally, the best part, odd though it sounds: Helen’s condition worsened, as the Parkinson’s continued its slow assault on her muscles and the leukemia kept her from fighting off infections. Eventually she couldn’t swallow, couldn’t eat, faced a trip to the hospital for a feeding tube--a trip her family doubted she could bear.

But the Kenny family had some help as they grappled with the big decisions, the pending sorrows, the painful planning. Months before anyone mentioned the word “hospice”--an intensive and specialized system of care for people who have but six months to live--Helen Kenny benefited from a steady stream of visits by nurse practitioners and a social worker. Her doctor came by after hours with explanations--in her room, not his.

“Our concerns were that by not putting in the feeding tube we’d be starving Helen,” recalls Annie Kenny of the wrenching decision. “The nurse was very good at telling us that even with the feeding tube, people can’t tolerate food.”

So Helen Kenny got her wish: no feeding tube, no hospital stay, no separation from her beloved James. She enrolled in a hospice not long after and died in her own bed with her family around her, the beneficiary of a wave of innovation that has begun to revitalize end-of-life care in America.

Advances in Pain Management

This country’s first hospice opened its doors 25 years ago, kicking off a sluggish revolution. In the ensuing quarter of a century--as a graying America came to realize hospices’ singular benefits and serious shortcomings--death has begun a slow move toward center stage.

There is far to go, but some strides have been made. Pain management is now an acknowledged medical specialty. A few hospitals are experimenting with special units for patients in the last days of their lives, a mirror image of the birthing rooms that welcome newborns.

And in the past two years, a smattering of experiments have cropped up, aimed at marrying the best parts of hospice care with the very human desire not to give up hope.

Most of these pilot efforts aspire to offer a better end at the same cost--or a little less--than the price of the painful death most Americans face today: in hospitals, hooked up to machines, unaware of any other way.

“The movement now is to continue to support hospice programs but to identify the needs of dying patients in other settings and provide systems of care for them,” says Dr. Kathleen Foley, attending neurologist at Memorial SloanKettering Cancer Center in New York and director of the Project on Death in America. “The innovation is being drawn on a compassionate, humane approach, but the forces out there are profoundly economic.”

The novel effort that cared for Helen Kenny--dubbed CHOICES and based in Emeryville, Calif.--is grounded in keeping patients who have little chance of long-term survival out of hospitals, where medical bills soar and their wishes are likely to be painfully ignored.

Most end-of-life care today is “overtly abusive and cruel,” says Dr. Brad Stuart, medical director of CHOICES. Even worse, he argues, modern medicine is utterly unconscious of just what it does to its most vulnerable charges, and “our unconsciousness results in unimaginable suffering.”

As a physician and hospice medical director, Stuart has watched patients denied the comfort care they deserve because of their doctors’ reluctance to abandon aggressive treatment and admit that death is near.

In his own Northern California hospice programs, he has seen physicians wait until the last possible moment to refer dying men and women to a hospice. Although hospice programs were created for people believed to have six months at most to live, 20% of Stuart’s hospice patients die within a week, many within 48 hours.

Bureaucratic Problems Persist

In the bare-bones world of hospice funding, Medicare pays about $100 a day for the care of all hospice patients. The first days of hospice care are generally the most expensive; equipment is purchased to allow dying people to stay at home, and doctors, nurses, chaplains and social workers make multiple visits.

“You’ve put hundreds of dollars into this family,” Stuart says, “and get $100 back. But physicians are afraid to refer to hospices, because there’s a move to make physicians financially responsible if they wrongly put people into hospices.”

In fact, two years ago the federal government wrapped up Operation Restore Trust, an investigation into Medicare fraud and abuse that targeted hospices across the country. Over the summer, the government issued draft guidelines to help hospice providers create compliance programs for preventing waste, fraud and abuse.

“But the real problem is that people are not getting in soon enough,” says Stephen Connor, vice president of the National Hospice Organization. “The median length of stay is 25 days, and it’s down from 29 days in 1995.”

The nation’s estimated 3,000 hospices last year cared for around 540,000 people--only about a quarter of those who died. Critics argue that hospices do not serve enough dying people, do not reach most of them soon enough, and do not serve them long enough.

The problem is a thorny combination of human nature, federal regulations and a couple of serious design flaws--the worst among them two Medicare requirements: Treatment to prolong life must be abandoned before a dying man or woman receives hospice care, and doctors must certify that dying patients have no more than six months to live.

Trying Various Ways to Address the Issue

“The imposed terrible choice between life-prolonging care and hospice care has actually stopped fitting the majority of people, or fits them so late that they are not deriving the benefits they could,” says Dr. Ira Byock, director of the Robert Wood Johnson Foundation program called Promoting Excellence in End-of-Life Care.

A year ago, the foundation--the nation’s largest private funder of end-of-life research--gave $12 million to 22 different efforts throughout the country whose innovations could lead to widespread improvement in the care of the dying. Nearly half, including CHOICES, address the gray area leading up to hospice care and the “terrible choice” foisted on the dying.

Promoting Excellence is striving to “raise the standards of palliative and end-of-life care,” Byock says, “and show that you can deliver this care without taking away treatments that are of benefit and without being fiscally irresponsible.”

How do you begin to achieve these twin Holy Grails: lower costs and excellent care? CHOICES, which operates within a Medicare HMO, began by accepting limits, so-called capitated Medicare payments. The program is funded through a flat monthly payment for every patient. The upshot: The HMO makes more money when less aggressive treatment is given.

These days that’s a major red flag for most consumers, who understandably fear that they will be denied care. But another great concern of many Americans is aggressive treatment that is painful but does little good.

CHOICES is based on the belief that people with little chance of long-term survival are cared for best by managing their illnesses, keeping them comfortable, out of crisis and out of the hospital, if that is what they wish. Helen Kenny is a good example.

The funny, robust woman, whose favorite activities included cooking and eating, was diagnosed with chronic lymphatic leukemia in 1989. Although the cancer lowered her resistance to infections, it was manageable. But when she was diagnosed with Parkinson’s disease several years later, her serious problems began: brushes with pneumonia, a fall that put her in the hospital with a broken bone in her back, increasing difficulties caring for herself.

At the time, Kaiser Permanente was her health care provider. “They were very good,” says husband James, “but they started to cut back.” Home visits from nurses were hard to arrange. “It wasn’t anything you could depend on,” says daughter-in-law Annie. Jack and Annie liked their own physician, Dr. Ken Gjeltema, and switched Jack’s parents to Health Net so Gjeltema could care for the whole family. That was in January 1998.

By February, Helen had contracted an infection in her left foot. Because of the leukemia, her body couldn’t fight it off. Helen was hospitalized and her leg was amputated. After a few days she was transferred to a nursing home for rehabilitation.

The separation from her husband, says son Jack, was “worse than the pain.” The family beseeched Gjeltema to let her return to the board-and-care home and husband James; she went home the next day. But she never really accepted the fact that her leg was gone.

By June, Helen was beginning to have serious problems swallowing, a common symptom of advanced Parkinson’s. She couldn’t chew, so solid foods were out. The most she could manage were thickened liquids, and even they were increasingly difficult to take.

By this time, Gjeltema had enrolled Helen in CHOICES, which provided her with nurses and a social worker who visited her to make sure she was physically comfortable, check on her medications and the progress of the Parkinson’s, and keep tabs on the skin ulcers that erupted from lying still for too long. It was a nurse who realized that Helen’s inability to swallow was becoming a crisis.

So Gjeltema went to the board-and-care home one night for the family meeting on the feeding tube. Often inserted surgically in the abdomen, feeding tubes allow people to eat when they cannot swallow. But for those near the end of their lives, they can simply prolong death and make it painful. It was a decision that the Kennys couldn’t make alone.

“We had the talk about whether to have more aggressive treatment,” Gjeltema says. “They sat there together and said, ‘No.’ They understood it all. [Helen said she] did not want to go to the hospital; it was an isolating thing that made her lose hope.”

Enrolling People Who Aren’t Dying Yet

Helen Kenny was the kind of patient with the most to gain from this different kind of care. She wasn’t dying, so a hospice was out. But her twinned, worsening conditions made her health fragile and put her long-term survival in question. Ongoing comfort care kept her out of the hospital, gave her the kind of end that she and her family wanted, and saved money.

Right now CHOICES has enrolled just over 100 patients, largely elderly men and women, some simply frail and failing, others with one or more chronic, debilitating diseases such as congestive heart failure or cancer.

These are people who are not dying--yet--but who are not expected to live more than one to three years. They are patients who, if they landed in the hospital one more time, might die there, might receive aggressive care that they do not want, or might need to be in a nursing home after discharge. This is a far different standard from the one used for hospice admission--one that families and doctors seem to accept with greater ease.

All patients and their families will be surveyed about the care they receive in the three-year pilot effort. In addition, the costs incurred by the CHOICES patients will be compared to those for a group of people with similar ailments but standard care.

The effort, however, is not without its difficulties. For starters, doctors in the managed care network that feeds into CHOICES have been slow to refer their sickest patients. Some referred people whose cases were complicated and difficult to deal with but who were not necessarily sick enough.

And in a program primed to deal with dying, referral to hospices still lags. “Even at the end of our three-year grant,” Stuart says, “we’ll be in the initial stages of persuading doctors.”

Advocates for the dying acknowledge that creating a new system to improve end-of-life care is no small feat, especially in a culture where talk of death is a real conversation killer.

A Major Goal Is to Encourage Discussion

In fact, one of the CHOICES team’s dearest hopes is that its efforts will encourage discussion among the sickest patients, their families and their doctors before a crisis makes it just too late to speak about the critical decisions that loom ahead.

They want people to tackle the practical things like wills and detailed, written instructions for the kind of care that is and isn’t wanted. And the less practical but no less important things like understanding each other, like reaching out.

Helen and James, Jack and Annie got that chance. Knowing that life without a feeding tube would not last long, Jack and one of his closest cousins composed a letter to their friends and family members. Come soon, it said, if you’d like to say goodbye.

“The last week,” says James, “we had our son, and Annie, all our relatives over. We had all my friends come over.”

And his eyes well with tears.

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Where We Die

A 1996 Gallup poll showed that nine out of 10 adults want to be cared for at home as they are dying. However, Americans are increasingly dying in hospitals.

Note: Figures may not total 100 because of rounding.

Source: “Approaching Death: Improving Care at the End of Life,” Institute of Medicine, 1997

* 1992 numbers are the most recent figures available.

** Includes those declared dead on arrival at hospitals