End-of-Life Choice, Palliative Care and Counseling

Posts Taggedhospice care

The Perils of Palliative Care

By David Ollier Weber
H&HN
June 26, 2012

The man was dying of metastatic lung cancer. Relatively young, still in his 50s, he’d finally married his longtime girlfriend and had gone home to spend his last days with her as a hospice patient in a medical bed set up in their San Diego living room.

As the days went by the man grew weaker. He could no longer rise from the sheets. He lost his appetite and seldom ate. Often he was hard to rouse. His pain was intensifying.

“My job,” recalls palliative and hospice care physician Jeffrey Stoneberg, M.D., “was to make sure he was comfortable and able to remain home with his wife while receiving the best quality of care. Mostly that meant easing his pain. He had a morphine pump, and over a couple of weeks we adjusted the doses. Then, toward the end, the pain suddenly escalated. I advised the nurse who called me to increase the dose to a point that I thought was very reasonable, and I explained to his wife on the phone what I was doing and that the end of his life was near. That night he died.”

Stoneberg, who now heads the inpatient hospice and palliative care department at Alta Bates Summit Medical Center in Berkeley, Calif., has followed exactly the same procedure hundreds of times. He takes deep satisfaction from the knowledge that he is helping ease patients and their families through what otherwise can be an agonizing final ordeal. But this time was different.

Horrified when her husband stopped breathing, the woman called the police — and suggested that Stoneberg was guilty of his murder. “She took what I’d said to mean that the changes I’d made in the morphine [dose] had killed him,” Stoneberg remembers, unhappily. Statements were taken, the man’s body was trundled into an ambulance and an autopsy by the medical examiner was ordered.

Several months passed before the official investigation was complete. For Stoneberg it was his own ordeal.

In the end, he notes, “I was vindicated.” The autopsy report confirmed that the drug dosage he’d prescribed was neither lethal nor the cause of the patient’s death.

“I was cleared of any wrongdoing,” he emphasizes. Nevertheless, “the stress, the anxiety, the toll it took on me created a circumstance in which, even though I knew in my heart I didn’t do anything improper — that what I’d ordered was evidence-based and according to all my training — still I began to question myself. ‘Did I kill him?’”

The Risk of Relieving Pain

In my last piece for H&HN Daily I wrote about a reporter’s moving account of the death of her aged father. His expensive and grueling two weeks of intensive hospital care graphically illustrated the need for greater emphasis on end-of-life planning to reduce the severe emotional and financial burdens that futile interventions place on patients, families, providers and the health system overall. I interviewed Stoneberg for that article, and I immediately thought of him when I read a headline in a recent issue of American Medical News:

“End-of-life care: Pain control carries risk of being called a killer.”

According to a survey of 663 physicians belonging to a national hospice and palliative medicine society, published in the March 2012 issue of the Journal of Palliative Medicine and reported in American Medical News, more than half of the doctors had been told at least once within the past five years that the treatment he or she provided was nothing less than “euthanasia,” “murder” or “killing.”

For 25 of them the charge was so unequivocal it had led to a formal investigation — by their own institution, the state medical board or the state attorney general’s office. What’s more, in a third of those cases the damning accusation had been leveled by another member of the physician’s own health care team.

Not one has been found guilty.

The study’s thesis and its conclusions corroborated Stoneberg’s experience: “Commonly used palliative care practices continue to be misconstrued as euthanasia or murder, despite this not being the intention of the treating physician. Further efforts are needed to explain to the health care community and the public that treatments often used to relieve patient suffering at the end of life are ethical and legal.”

Nathan Goldstein, M.D., a geriatrist and palliative care physician at Mount Sinai School of Medicine in New York City, is the lead author of that survey and one of the lucky minority in his pain-relief subspecialty who has never, he’s glad to say, had his ethics or the legality of his actions called into question.

Oh, he allows, he’s encountered occasional objections that he’s prematurely consigning a patient to death by removing artificial nutrition or hydration. He’s heard banter that implies his role is to off people. But he’s never had to defend himself or endure the emotional reactions that Stoneberg and the accused respondents to the survey listed in order of severity: worry (about damage to their reputation, financial cost, loss of medical licensure or imprisonment), anger, anxiety, a sense of isolation, depression, shock, sleeplessness, self-doubt, fatigue, difficulty working, embarrassment.

In fact, for all the misconceptions about what they do and why and when and whether they should do it, very few hospice and palliative medicine subspecialists — only 4 percent of the survey respondents — have faced formal charges of deadly misconduct in the past five years.

That’s of little comfort, of course, to those who have been or might in the future be wrongly fingered. And make no mistake, Goldstein and his coauthors warn:

“Any physician, nurse or other practitioner who works with dying patients may be a potential target of murder allegations if their motives are doubted or misunderstood by members of the health care team and families.”

The Rule of Double Effect

The palliative action most likely to trigger a homicide charge, according to Goldstein’s survey respondents, is terminal sedation — that is, “the application of pharmacotherapy to induce [unconsciousness] in order to reduce the burden of otherwise intractable suffering.”

Prescribing a drug dose to a terminally ill patient that’s strong enough to blot out awareness of recalcitrant pain is actually the duty of the physician as healer, the American Medical Association asserts in its code of medical ethics. Even if the sedation might speed up the dying process — by depressing respiration, for example — both civil law and most religious traditions “acknowledge the correctness and compassion” of resorting to it, Goldstein explains.

The AMA code of ethics specifies that the patient and/or surrogate must give informed consent for the treatment. But most importantly, the physician’s intent must be to relieve misery, not to snuff out a life. Terminal sedation is justified under the principle of beneficence — the duty of a doctor to act in the patient’s best interest. If there’s a harmful aspect to doing what’s good, it’s subordinated under the “rule of double effect” first elaborated by the philosopher Thomas Aquinas. Application of that principle to pain palliation, Goldstein and his coauthors note, has been validated by the U.S. Supreme Court.

Ultimately it’s the physician’s mindset that’s the governing factor, observes Stoneberg: “What is my intent in giving the medication? If it’s to relieve pain, to make the patient more comfortable … and, therefore, actually to live longer and better … and if I’m not giving something with the intent to suppress breathing … then there’s no ceiling. You can go as high [on the dose] as you need to.”

Education

On a warm, sunny weekend morning in early May, Monica Romo-Contreras, M.D., sits inside an artificially lit conference room with 43 other clinicians from six of the Sutter Health system’s Sacramento-Sierra Region hospitals, reviewing the principle of intended/unintended consequences.

Romo-Contreras is the medical director of the Northern California system’s regional palliative care program. Along with her administrative co-director, Kathleen Grace, she’s put together this day-and-a-half continuing medical education program designed, as described in its prospectus, “to educate physicians on the knowledge and skills needed to appropriately care for dying patients. It will teach fundamental skills in communication, ethical decision-making, whole patient assessment, multidimensional aspects of suffering, palliative care and pain and symptom management … presented on the assumption that health care will be improved when medical professionals learn superior end-of-life skills that consider the whole person.”

Over the past year and a half, Romo-Contreras, a family physician board-certified in geriatrics and palliative care, has assembled with Grace an interdisciplinary nurse-led team to respond to the needs of dying patients at each of the six Sutter hospitals in their region. They received 2,500 requests for palliative care consults last year alone, Grace reports. This year’s May CME course on palliative care was the second they’ve offered — 50 doctors attended last year — and Romo-Contreras supplements these formal presentations with regular visits to individual hospitals to speak with staff and “address misconceptions” about what’s appropriate terminal therapy.

“There’s a need for a lot of education,” she declares. One promising initiative she plans to expand from the hospital where it was piloted asks each member of the interdisciplinary palliative care team to give a presentation to his or her own department — pharmacy, respiratory care, speech therapy, hospice, outpatient advanced illness management among them — explaining the methods and values that inform best end-of-life care practice.

“Our goal is to decrease suffering,” Grace emphasizes. “Our goal is not to tell patients and families what to do, but to help them identify what it is they want to do.”

Better Support

Goldstein thinks part of the onus of educating other health care professionals about what’s right and proper in palliative care falls on practitioners.

“Often we’re not explicit enough on why we’re doing what we’re doing,” he observes. “We’ll say, ‘Increase the dose,’ meaning, ‘…because the patient’s short of breath, or because her pain is worsening, or because she’s agitated, or because she can’t sleep.’ But we don’t say that. It’s important to give reasons explicitly to help other members of the health care team understand that what we’re doing is for symptom control, not to hasten people’s death.”

Similarly, he counsels, “It’s important in our one-on-one interactions with other clinicians — physicians, nurses, pharmacists — that we answer their questions in the moment. Someone might comment, ‘That seems like a high dose.’ My response is, ‘Well, really not. These meds are safe and we’re familiar with using them appropriately. This dose to me is totally appropriate.’ My anecdotal experience is that when you explain things, it makes sense to them.”

Meticulous documentation of each step of the palliative care process is also essential, points out Goldstein. At least one physician accused of murder said his explicit notes on the reasons for opiate usage and even the dose calculations proved crucial in exonerating him.

Moreover, urges Goldstein, those in palliative care need to stress that studies show patients who get more medication at the end of life actually live longer than those struggling against pain, anxiety, nausea and other debilitating symptoms.

“I had a case in December,” he recalls, “a patient with advanced liver disease. We kept saying, ‘He’s so fragile because his pain is not controlled.’ We wanted to go up on his medication. His physician said, ‘No, no …,’ but then finally agreed. When he saw his patient later that same day he said, ‘Oh my God! He’s never looked this good!’ Two days later the guy’s kicked back in bed, watching TV and eating his lunch. Because we have experience, we took his pain medication up to what he really needed.”

Finally, Goldstein and his coauthors argue in their paper for greater support within the health care system for those few unlucky clinicians whose honest ministrations at the end of life land them in hot water. They propose “a unified and coordinated effort to provide accused clinicians with legal expertise and support from leaders and professional organizations to expedite the process of exoneration and potentially mitigate the psychological and financial expense of these investigations. Creating methods to seek more mediation and less adversarial professional and legal proceedings for the resolution of these conflicts should be a goal for health care professionals, health care administrators, medical boards and regulatory bodies overseeing health care law.”

Meanwhile, says Stoneberg, for solace he has to “turn to colleagues and friends I trust, and talk it over with them.” The accusation that a doctor has willfully killed a patient “weighs heavily,” he sighs. Nor did the receipt of a thank-you card from the widow who’d leveled the charge against him offer much consolation, he notes. Bizarrely, it arrived in his mail a few weeks after the autopsy report cleared him of the murder she’d alleged.

“I did not send her a thank-you card in return for putting me through that,” he says with a grim chuckle.

The Reality of End-of-Life Care

By Lisa Schulmeister
OncLive
July 9, 2012

A recent review article in Nursing Economics examined the current reality of end-of-life care in the United States. The ideal, of course, is that the American public is well-informed about end-of-life care and embrace palliative care for their loved ones (and themselves) when the time comes. However, in reality, there are many barriers to access to palliative care and hospice services. Access includes awareness of palliative and hospice services, payment and financial coverage for those benefits, and acceptance of benefits from a cultural or religious perspective.

Geographic disparities in accessing palliative and hospice care are well documented. Analysis of Medicare data found that overall, 29% of patients with advanced cancer died in a hospital. The hospitalization percentages, though, ranged from 7% in Mason City, Iowa to 47% in New York City. This statistic may say more about our culture rather than availability of services as I imagine that New York City has any number of palliative/hospice services, organizations, and facilities. Another reality is that hospice has increasingly been used by people with chronic medical conditions other than cancer.

The author of the review makes the point that discussions about quality of care, health policy, and disparity must occur and cannot be dismissed due to the fact that these conversations are difficult to have from an ethical and legal perspective. All healthcare professionals should strive to create an environment for patients where the philosophy of palliative care and hospice is understood. Goals include increased knowledge about hospice and palliative care, greater symptom control for patients with end-stage diseases, improved advance care planning, better quality of life, and ultimately less money spent on achieving better outcomes for patients facing end-of-life illness and disease.

No One Dies Alone program offers comfort to the end

By Thomas Curwen
The Los Angeles Times
July 5, 2012

Barbara Farkas is certain about what happens after death. It is the end, she says; there is no heaven, no hell, no journey that lies ahead. Her conviction hasn’t changed, no matter how many times she has sat with the dying.

Holding Taylor Hall’s hand, she could tell he would be around for a while. She felt his grip and looked into his bright blue eyes. He was getting a fairly light dosage of morphine, at least for now, she thought.

Hall had been admitted to the hospital two days earlier, consigned to a hospice room, and as soon as Farkas got the news, she scheduled time to keep him company. They were strangers, but that hardly mattered. Aside from a few friends, he had no one in his life.

“Are you thirsty?” she asked. “Shall I wet your lips? Would that feel good?”

Hall turned to face her. He was 57. His short cropped hair, bushy mustache and eyebrows reminded her of her uncle John. He was delirious either from pain medication or his tumor — she didn’t know — but he managed to speak.

“Thank you, ma’am.”

His room had a sliding door that was open to a courtyard, and a breeze pushed the curtains out, breaking the twilight inside with a thin sliver of light.

He lay elevated on the bed. A loose bandage covered the left side of his neck where the tumor, a nasopharyngeal cancer, had broken through the skin. An IV line entered his left wrist.

Farkas, 68, leaned close and moistened his lips with a green swab. She noticed that he was missing a few teeth.

Her life was so different not so long ago when she worked for a manufacturer of semiconductors in Torrance. She was on the phone all day with clients, processing international shipments and expediting orders.

She had a reputation, she says, for being outspoken, and if she exploded at someone, it was only in the course of doing the job. She was under pressure and had a sales quota to make. Then in April 2009, she was called into the human resources department. She was one of 28 employees let go in a downsizing.

After 30 years on the job, staying at home wasn’t an option. Her husband, a high school teacher, had no intention of slowing down. Volunteering seemed to make sense, so she signed up with Little Company of Mary Medical Center in Torrance and twice a week drove from her home in Gardena to escort patients and assist the nurses.

When she heard that the hospital was starting a program called No One Dies Alone, she was intrigued. A few years earlier, she regularly visited a friend who was dying and felt good for being able to help with his care and comfort him.

Today she is one of 32 volunteers who attend to patients as their schedules allow. Since signing up two years ago, Farkas has sat with at least 30 patients, and the experience has changed her, she says, leading her to discover patience, calm and compassion she didn’t know she had.

“Do you want to listen to music or do you just want to rest?” she asked Hall.

His words came out as a hoarse, indistinguishable whisper. She fiddled with the CD player, and Glenn Miller started to play.

“I don’t think you like swing music,” she said. She had heard that he was a fan of the Rolling Stones.

Despite the open door, the room smelled foul, the result of bacteria and necrotic flesh around the tumor, but Farkas was not bothered. She once sat with a woman with ovarian cancer who needed to be bathed twice a day. The nurses wondered how Farkas could stay in that room for four hours straight. She said she got used to it.

She has seen how tenacious life can be. Without food and on only pain medication, patients endure. Death comes slowly, and she recognizes its onset: dehydration, incontinence, congestion and the panic that sets in as breathing becomes more difficult.

Hall, whose last job was at a car dealership a few years back, had been in a residential care facility in San Pedro and then in Long Beach as his cancer advanced. In May, he was discovered unconscious and taken to St. Mary Medical Center. Doctors stabilized him, but he was too fragile for treatment.

He is divorced, his parents are dead and he is estranged from his brother, so he put a friend in charge of his health, and together they decided that he should enter hospice care.

“How do you feel?” Farkas asked, trying to maintain a conversation. “Do you want me to let you sleep?”

No One Dies Alone was started in Oregon in 2001 when a dying man asked a nurse to sit with him. She agreed but first needed to make her rounds. When she returned, the man was dead, and the nurse resolved to enlist volunteers to stay with patients who were alone and close to death.

The program was picked up by other hospitals around the country, and began at Little Company of Mary in 2009.

“We instinctively know that people at certain times of their lives shouldn’t be alone,” said Denise Hess, the hospital’s chaplain for palliative care.

Hess, who meets with patients and schedules the volunteers, says No One Dies Alone benefits not only the patients but also the nurses, who find it a relief to know that someone is watching their most vulnerable patients.

When Farkas went through the training — a day-long seminar that included a session with a computerized manikin that could breathe and speak and replicate various stages of dying — she was concerned that she would become too emotional.

She surprised herself by enjoying the time with the patients. Each shift is unpredictable. Each shift leaves Farkas with the feeling that she has been useful.

“I find it meaningful to show them that someone cares about them,” she said.

Keeping vigil is sometimes as simple as holding a hand. Sometimes it means rubbing feet or talking or reading aloud. In instances where patients are asleep, too close to death to respond, Farkas sits silently beside them, a book in hand. Few are as responsive as Hall.

“We enter this world surrounded by people,” Farkas said, “and we should leave it in the same way.”

Only one patient has died in her company. She was reading the New Testament to him, and she heard him stop breathing. Being there at that moment wasn’t as distressing as she thought it would be. Not knowing him eased the sadness.

She had heard some volunteers talk about how the experience has brought them closer to their faith, but faith has never meant that much to her. Raised Methodist in Indiana, she stopped going to church when she was 12. Her husband is Catholic, and they baptized their daughter. For a while they attended Mass, but she went for her family’s sake, not her own.

She stroked Hall on his arm, tracing a circular pattern on his skin, something she learned from being a mother. Her daughter said the gesture always soothed her.

Farkas’ mother was in this facility two years ago. She had broken her hip, and after being discharged, was taken to a rest home in Lomita where she died. Farkas wasn’t with her at the time.

She sympathizes with families who can’t be at the hospital when a relative dies. Some live too far away or can’t take time from their jobs or find their estrangements, no matter the circumstances, too hard to bridge. For others, death is just too painful to watch.

When she hears friends say they’d like to die at home, she tells them what a burden that can be, especially for children, needing to prepare meals, arrange baths and administer medicines.

As food carts rattled down the hall, a call-button trilled from the nurses’ station, and an alarm from a bed sensor in another room went off. Farkas finds facilities like this depressing and wonders if she might end up in one. She hopes to die in her sleep.

When the lunch tray arrived, she fed Hall a puree of bread dressing, glazed carrots and roasted turkey, and when he was done, she gave him a drink of water and stroked his ear and cheek. She leaned over him, her head just a foot from him. A slight smile traced across his lips.

“Good thoughts?” she asked.

For Farkas, to sit with the dying is like looking at a Rorschach, each patient a shadowy impression open to interpretation. She had heard that Hall played golf. She thought he must have been well liked.

As children’s voices drifted in from the courtyard, she closed the sliding door and curtain. A nursing assistant came into the room to change and bathe Hall, and Farkas helped as she could. The sudden attention agitated Hall.

“I’m going to go with you right now,” he said, making little sense. “Please, I told the nurse I would be right back. Please.”

Farkas reassured him and, afterward, took a cool wash cloth to his forehead.

“Oh oh,” he said, wrapping his hand around her thumb.

The hospital grew quiet, except for the hum of the building and the ticking of the wall clock.

“You’re a good hand-holder,” she told him.

He yawned.

At 2 p.m., she tidied up the wrappers from the moisturizing swabs. Her two-hour shift was over, and as the next volunteer stepped into the room, Farkas said goodbye.

Walking toward her car, she was surprised by the bright light of the afternoon. The fog had rolled back, and the leaves of the liquidambar trees lining the sidewalk shimmered in the breeze.

Some day, she thinks, she would like to go to Italy with her husband. That’s on her list of things to do before she dies, but for now she needs to schedule her next shift.

The Takeaway: Hospices Diversify End-of-Life Care to Suit Boomers

By Elizabeth Nolan Brown
AARP
July 3, 2012

Hospice care with a side of golf? That’s just the beginning. Hospices are working to “diversify their services” in preparation for the eventual needs of aging boomersaccording to the Associated Press. In the meantime, providers would like to dispel myths that hospice care is all doom, gloom and candlelit bedrooms.

Hospice traditionally provides medical care, pain management and emotional and/or spiritual support to patients with terminal illnesses. According to the National Hospice and Palliative Care Organization, as many as 40 percent of all deaths in the United States were under the care of hospice in 2010. The number of Americans who received hospice care that year had more than doubled since 2000.

For most patients, hospice care means periodic home visits from hospice workers; a much smaller group receives round-the-clock home care or care at a hospice house. There is a growing trend, however, in this “pre-hospice” concept — longer term programs for patients living with complex illnesses who are not necessarily terminally ill. For these patients, Southern Tier organizes things like weekend trips to casinos, golf outings, Florida vacations and dinners out. “If the real focus is to help someone stay comfortable, then that’s hospice,” said Stawasz.

Ira Byock, director of palliative medicine at the Dartmouth-Hitchcock Medical Center in New Hampshire, told AP that he hopes boomers will “take back” end-of-life care, as they did with the natural childbirth movement and allowing fathers in delivery rooms.

“It was driven by the boomers as citizens and consumers; it was an advocacy movement. A very similar thing needs to happen now” with hospice and end-of-life care, he said.

Tuesday Quick Hits:

  • More employers offer “wellness” incentives. A new survey from the Society for Human Resource Management found 20 percent of employers offer discounted health insurance premiums for non-smoking employees, up from 12 percent in 2011. Incentives to join gyms, lose weight or institute other healthy habits are also increasingly common.
  • C.O.P.s take back Boston senior home. The 11-story  housing complex for older adults was overrun with drug-dealing, crime and loiterers, until a citizen patrol unit (called Citizens on Patrol, or “C.O.P.”) helped make the hallways safe for senior residents again.

With Boomers Coming, Hospice Industry Diversifies

By The Associated Press staff
NPR.org
July 2, 2012

Forget that image of a hospice worker sitting next to a hospital bed in a dimly lit room. Today, hospice care is delivered everywhere from the golf course to the casino.

As they brace for the eventual needs of the aging baby boom generation, hospice providers are working to diversify their services and dispel misconceptions about what they do.

Chief among those myths is the notion that hospice consists of friendly visitors who sit in a darkened room and hold Grandma’s hand while she dies, says Robin Stawasz, family services director at Southern Tier Hospice and Palliative Care in upstate New York.

“It’s just not what we do. We come in and help people go golfing or go snowbird down to Florida, or go out to dinner several nights a week. We help them get to the casinos on weekends,” she said. “This is not getting ready to die. This is living — living now, living tomorrow, making the best possible life with what you have.”

According to the National Hospice and Palliative Care Organization, an estimated 1.58 million patients received hospice care from more than 5,000 programs nationwide in 2010, more than double the number of patients served a decade earlier. More than 40 percent of all deaths in the United States that year were under the care of hospice, which provides medical care, pain management, and emotional and spiritual support to patients with terminal illnesses.

Both figures have grown steadily and are expected to rise as baby boomers — the 78 million Americans born between 1946 and 1964 — get older.

“It’s a complicated time and an exciting time, but it’s also, in many ways, going to be a very daunting time for hospices to try to find ways to take care of all these people,” said Donald Schumacher, president and CEO of the national hospice group.

For the vast majority of patients, hospice means periodic visits at home from a team of hospice workers. A much smaller percentage receives continuous nursing care at home or inpatient care at a hospice house.

Hospice is covered under Medicare, Medicad, and most private health insurance plans. According to the National Hospice and Palliative Care Organization, 84 percent of patients receiving hospice care in 2010 were covered by Medicare. The vast majority of those patients received routine home care — visits from hospice workers as opposed to around-the-clock nursing care or inpatient care — and at that level of care, the Medicare reimbursement was about $126 per day, according to the organization.

Medicare covers hospice care if a doctor determines someone has less than six months to live and if the patient forgoes any further life-prolonging treatment, though under the new federal health care overhaul law, it will experiment with covering both curative and supportive care at a number of test sites nationwide.

In the meantime, hospice programs are growing in number and scope. Recognizing that people are living longer and with complex illnesses, they’ve been branching out into other “pre-hospice” areas for patients who are not terminally ill. For example, some centers have become certified as so-called PACE providers, an acronym that stands for “program of all-inclusive care for the elderly.”

“Hospices are trying to throw a broader net out to provide services to people before they become eligible for hospice,” Schumacher said.

Another trend is focusing on patients with specific diagnoses. While hospices for decades overwhelmingly cared for people with cancer, by 2010, cancer diagnoses had dropped to 36 percent of patients served, prompting some centers to develop programs geared toward heart disease, dementia and other diagnoses.

“We are realizing that while our roots were really in oncology, that model is not the best response for all patients,” Stawasz said. “We needed to really look again at how we were doing things. It is not a one-size-fits-all kind of treatment plan,” she said.

After working with providers and patients to figure out where traditional hospice had been missing the mark, Stawasz’s agency launched its specialized program for patients who have suffered heart failure in 2009. While there’s usually a clear line between medical treatment and comfort care for cancer patients, things get blurry with other conditions, she said. So the agency started focusing on the reason behind each service, rather than the service itself.

“If the real focus is to help someone stay comfortable, then that’s hospice, even if it’s traditionally something a little bit more aggressive, such as IV antibiotics or IV diuretics or that sort of thing, or hospitalizations,” she said. “So if the goal is for comfort and the treatment has a reasonable expectation to provide meaningful comfort, then that’s hospice.”

Though he praises such programs, one expert in end-of-life issues says the hospice industry and American society as a whole are far from ready for the aging baby boom generation. Unless caring for people at the end of life becomes a larger part of the national agenda, the rising tide of elders is bound to result in a flood of unmet needs, said Dr. Ira Byock, director of palliative medicine at New Hampshire’s Dartmouth-Hitchcock Medical Center.

He points out that while the number of people using hospice has grown, the average length of stay actually dipped slightly in 2010 compared with the previous year, raising concerns that providers aren’t reaching patients and their family caregivers in a timely manner.

“We often quip that in hospice care these days, we’re doing brink-of-death care rather than end-of-life care,” Byock said.

When it comes to illness, dying, and death, the American mindset is “I don’t want to think about it.” But Byock hopes baby boomers will “take back” the end of life in the same way they took charge of the beginning by pushing for the natural childbirth movement and efforts to bring fathers into the delivery room.

“It was driven by the boomers as citizens and consumers; it was an advocacy movement. A very similar thing needs to happen now,” he said.

Hospice workers say they are more ready than other health care providers to deal with baby boomers and whatever changes health care reform brings because they’ve been working with limited budgets for years.

“We’ve been meeting that triple threat of providing better care with higher patient satisfaction for less money,” Stawasz said. “I think hospice is perhaps standing as a model for others as we are dealing with the challenges of the increased needs that baby boomers represent.”

Laurie Farmer of the Concord Regional Visiting Nurse Association agrees. And she adds that hospice is all about providing individualized care, something that baby boomers likely will demand.

“The baby boom generation comes as very educated consumers, and so we are feeling that we have been meeting that challenge,” she said.

At age 70, Liz Murphy, of Deerfield, N.H., is a few years older than the oldest baby boomers. But like many of the baby boomers served by the Concord hospice program, she did her homework before deciding several weeks ago to move into the program’s hospice house.

Murphy, a longtime Statehouse lobbyist, was found several years ago to have an extremely rare cancer of the connective tissue that settled mainly in her bones but also has spread to her brain, liver and other organs. She started considering hospice after a spate of surgeries just weeks apart resulted in no improvements.

Murphy said she knew where the hospice house was, but beyond that, knew little about it before she started looking into it. But once she did, she made her decision quickly.

“I talked it through with my husband and my children and anybody else who I thought would have an interest in it, and I feel as though I got information from as many people as I needed. I came and looked at it, and I’m very happy with it,” she said.

“It’s been great. I love the place. I’ve been very fortunate that the people who are here are people who are happy to work with me, and are interested in working together with my family, my husband and me to give us the program we’re interested in.”