Transforming Dying

Palliative care isn't yet routine in long-term care. But with 25 percent of Americans dying in nursing homes, many argue that it should be.

By Maureen M. McAndrews

Monsignor Charles Fahey may not call himself a pioneer, but he is working to fundamentally change the face of dying in America's nursing homes. As program officer of a project to make nursing homes better places to die, Fahey is helping to lead a charge against the pain and suffering that plague so many nursing home residents in their final days.

His passion for the project emerges as he describes the typical course of suffering that many nursing home residents endure during their last days: abrupt transfers to the hospital, IVs, antibiotics and their unpleasant side effects, harsh diagnostic tests and futile treatments.

Instead, he asks, why not keep dying residents in nursing homes and apply the person-centered care principles to the end of life? This way, residents could die in peace, free of pain and surrounded by family, friends and staff who feel like family, in a warm, nurturing and comforting environment. This is where palliative care can transform the whole dying experience, he says.

With many roadblocks lining the path to implementing palliative care, Fahey and his colleagues at the Milbank Memorial Fund project (see box on page 59) face some rough terrain. But with 25 percent of Americans dying in nursing homes every year,¹ and hospice service just beyond reach due to enrollment barriers, better end-of-life care is a necessity.

HOSPICE VERSUS PALLIATIVE CARE

Palliative care grew out of and includes hospice care. While hospice and palliative care are similar in that they both provide comfort measures and relieve suffering for the dying, there's one major difference: Unlike hospice care, where enrollment carries a life expectancy prognosis of six months or less, palliative care can be offered at any time during an illness. This makes it a great alternative when a resident has a chronic condition like congestive heart failure, where suffering may continue for several years, but there's no easy way to predict death.

GROWTH AND CHALLENGES

The greater flexibility in providing palliative care has spurred more interest around it in the long-term care community. "Greater attention to end of-life care in the institutional world is long overdue," says Fahey, who is also Marie Ward Doty professor of aging studies emeritus at Fordham University, Bronx, N.Y.

Other palliative care advocates agree. "There is no administrator of a nursing home or long-term care facility that doesn't think that palliative care needs to happen in his or her facility. I think that is tremendously positive," adds Charles F. von Gunten, MD, PhD, FACP, provost of the Center for Palliative Studies at San Diego Hospice & Palliative Care.

Interest is one thing, but action is another. Despite the heightened focus on palliative care, several obstacles impede its presence in nursing homes. The barriers are complex and varied, but range from defining palliative care to addressing attitudes about dying and staffing concerns.

First of all, identifying candidates for palliative care presents a challenge. "It's hard for people to know when dying begins," says Neville E. Strumpf, PhD, RN, FAAN, Edith Clemmer Steinbright professor in gerontology at University of Pennsylvania School of Nursing in Philadelphia.

Fahey agrees, adding that understanding the markers of the dying process will be one of the areas the Milbank project will address.

Even though chronic illness has an unknown toll, it eventually eats away at daily function. This decline in function could be a good starting point for palliative care. "I would argue that anyone with a progressive illness from which they are not going to recover is a candidate for palliative care," says Dr. Strumpf, who is also director of the Hartford Center of Geriatric Nursing Excellence at University of Pennsylvania School of Nursing.

For instance, end-stage lung or kidney disease or severe diabetes would all fall under that category. But if you compare those diseases to cancer, where life expectancy can often be predicted, the trajectories are much more uneven in end-stage chronic illnesses, Dr. Strumpf says.

Attitudes about death and dying can be a challenge to implementing palliative care because modern medicine has traditionally looked at death as defeat. While the hospice movement has done a lot to turn that around, these attitudes persist and they aren't lost on nursing homes.

"Very few nursing homes, either consciously or explicitly, say they are in the business of helping people to die well. It's pretty much ignored to the detriment of the facilities and the people living there," Fahey says.

Dr. Strumpf echoes those sentiments. She says that nursing home care, for good reason, is focused on maintenance of function. In cases where that's no longer possible, however, health care professionals are still reluctant to think about a resident dying in a nursing home.

On the other side, a nursing home's public relations image isn't exactly bolstered if it's identified as the last stop on the road to death. This isn't necessarily a bad thing: Even someone who's never had a marketing class realizes that life sells much better than death. But Fahey says nursing home brochures that showcase the active and vibrant senior further distort the public's realization that death occurs there.

"These people look like me at 74, with white hair and golf clubs, rather than someone who is in a wheelchair," he says.

Plus, many residents and family members experience denial, a very natural part of the grieving process, when their loved one has a chronic or terminal illness. Jeffrey Schmidt, executive director for Golden Living Center in Plattsmouth, Neb., has seen this at his facility. He says many families can't bring themselves to make hospice or palliative care an official part of care.

"For a lot of people, that is the defining moment where they're publicly saying to people that 'Mom or Dad is going to pass,'" he says.

Even if one family member sees that palliative care would be best, there's the challenge of getting everyone who knows the resident to agree, says Mark Leenay, MD, chief medical officer of Evercare Hospice and Palliative Care, Minneapolis.

In these situations, you have to talk to people to see if they understand that the illness will likely take the resident's life at some point, and then address how palliative care can ease the resident's journey, he adds.

Lack of staff expertise also makes it difficult to provide effective palliative care. "There's a whole art and science related to managing pain and other distressing symptoms, and providing psychosocial and spiritual comfort," says Sister Karin Dufault, SP, RN, PhD, executive director of the Board of Care Coalition: Pursuing Excellence in Palliative Care, Portland, Ore.

But, there isn't always an expert around in a nursing home to provide this type of education, she adds. And that's where things break down, says Dr. Strumpf, because your typical nursing home often lacks the staffing resources to support the kind of knowledge that's necessary to keep palliative care running smoothly.

This lack of expertise can be keenly felt by the aides when there's a medical emergency with a resident. "Staff are often in this terrible catch 22 where they are trying to protect the resident from going to the hospital yet they feel compelled to send them to the hospital because of lack of expertise," Dr. von Gunten says.

Staff turnover, a problem across the board in health care, also gets the blame for the lack of palliative care standards in nursing homes.

Continuity of staff is essential since a palliative care program requires attention to individualized programs of care and resident preferences and families, Dr. Strumpf says. It's nearly impossible to deliver that kind of attentive care when you don't know the resident and family very well, she says.

"If all of the nurse's aides turn over every year, it's hard to get ahead," Dr. von Gunten adds.

Regulatory concerns further hamper the presence of palliative care in nursing homes. For instance, OBRA's requirements are designed to help residents reach the highest reasonable level of functioning. But while palliative care doesn't completely avoid curative treatments, it doesn't focus on them either.

"In the dying process, some of the symptoms could be interpreted as neglect, and nursing homes fear that," Fahey says.

Those fears are justified when you consider how nursing homes have been halted by survey issues when they've tried to provide palliative care, says Mark Kator, MBA, LNHA, president and CEO of Isabella Geriatric Center in New York City.

For instance, a resident commonly loses weight as he enters the stages of dying, but a surveyor may flag weight loss as a quality of care issue.

Budgetary concerns can temper even the most enthusiastic proponents of palliative care. "Many nursing homes struggle just to meet their operating budgets," Dr. Leenay says. If core business woes plague an administrator, it's difficult to muster the resources to innovate with new delivery models, he adds.

Lack of reimbursement for palliative care may also decrease its popularity. "I personally feel that if there was a reimbursement incentive more palliative care would get done because you could use that incentive to hire additional staff to enrich a palliative care program," Dr. Strumpf says.

OVERCOMING OBSTACLES

While these challenges are complex, they aren't keeping palliative care programs out of nursing homes. "Regulatory issues present valid concerns, but they would never stop us from providing palliative care," Kator points out.

In fact, as the palliative care movement gains momentum, end-of-life care programs in nursing homes are becoming a reality. "Palliative care is finding its way into nursing homes, but I'd like to see it happen a little more quickly and comprehensively," Kator says.

While Kator credits the Milbank project with energizing the palliative care movement, he says many long-term care facilities still have reservations about implementing palliative care.

But, he says, don't let the many details daunt you if you're considering a program. First off, put some of your business concerns aside and think about why you should integrate palliative care into what you do. Facility managers share the common goal of wanting to enhance the caregiving experience. End-of-life care, he reasons, should be no exception.

As you embark on the process of integrating palliative care, Fahey says facility management should come together to form the program and make it seamless with the care you're already delivering. State firmly what a good death would be and identify the values and resources to provide that, he says.

Staff buy-in is also critical to successful program development. Leadership should work with staff on how to make the palliative care program successful. "You don't just decree it. It never happens like that," Dr. Strumpf says.

One of your first action plans should be to assemble an interdisciplinary team. Dr. Strumpf found that an interdisciplinary team that met on a weekly basis to discuss residents and the appropriateness of palliative care was a key measure of success.²

PUTTING IT INTO PRACTICE

As your interdisciplinary team navigates the nitty-gritty of care planning, encourage them to address the many facets of palliative care. Do it in a step-wise fashion, Kator says. For instance, think about how advance care planning, pain management, symptom management, family support and bereavement could be integrated into your overall program.

Advance care planning. Talk to residents and families about end-of-life care planning upon admission and throughout their stays. Discuss the possibility of switching from intense medical rehabilitation to palliative care, Fahey advises. "These standards of care can coincide but the latter may be dominant as death approaches. Care monitoring and continuing update of the patient care plan is critical," says Fahey.

People often think palliative care means "giving up," but that's not the case, he says. In palliative care, appropriate medical interventions still should be carried on. "It's more of an add-on than a subtraction. The goal is to change interventions," he explains.

Even though it's difficult to discuss declines in function, make sure you are honest with the family and the resident about what's on the horizon, Dr. Leenay says.

Advance directives should be one of the first things you discuss with residents and families. Since Isabella has a formal palliative care program, Kator says his staff finds out immediately if a resident has an advance directive and if they don't, they'll see if they can do one.

Pain and symptom management is also an essential component of palliative care. Make sure your staff is on top of the latest research on effective pain management techniques.

Staff may need to assess pain and symptoms differently in residents. For example, a resident who has dementia may not be able to communicate as other residents do, Kator says.

Family support is a hallmark of good palliative care. In its definition of palliative care, the World Health Organization says a palliative care program should offer a support system to help the family cope during the patient's illness and in their own bereavement.³ Use a team approach to assess resident and family needs, including bereavement counseling, if needed.³

Address psychological and spiritual needs. To help you provide this type of support, enlist the help of chaplains, counselors and social workers. As part of the interdisciplinary team, they should assess residents regularly to manage psychological and spiritual care. While spiritual care may take several different forms, the resident's and family's preferences can help guide your staff in the right direction.

STAFF EDUCATION

While it's important to know the essential elements of palliative care, you can't effectively deliver any of them without a qualified and knowledgeable staff. If your nursing home has an in-house hospice or an existing arrangement with a hospice provider, you're probably already halfway there. If not, look to local hospice providers for an educational arrangement. After all, hospice providers are the experts in end-of-life care, says Schmidt.

Some nursing homes have also partnered with universities for research studies on palliative care in their respective communities. For example, Golden Living Center Plattsmouth is currently in an end-of-life care study partnership with University of Nebraska Medical Center in Omaha, Neb. Over the next few months, the university professionals will be providing inservice education on palliative care and surveying line staff to help draw conclusions on effective end-of-life care, Schmidt says.

In their study of Genesis nursing homes in Maryland, Dr. Strumpf and her colleagues also found it was extremely effective to have a nurse specialist with expertise in palliative care to provide consultation to the staff.²

Inservice training, done by outside consultants or current facility staff, is another option for staff education.

PUBLIC POLICY

While facilities can do their own work to develop palliative care, experts agree there are a lot of unanswered public policy questions around palliative care.

Sister Dufault says there should be more research and demonstration projects to help determine which types of palliative care programs yield the best outcomes. "There's been quite a bit done but not enough to draw the kinds of conclusions that would be important," she says.

Dr. von Gunten says concrete date from nursing homes that have implemented palliative care programs would help guide policy decisions. "That kind of information is much easier to take to regulators than a hypothetical argument," he adds.

The Milbank end-of-life care project has already begun this process by generating a public policy dialogue around palliative care. While the project is not yet complete, Fahey says he hopes the end results will inspire change.

He wants to see nursing homes become warm, comforting environments that minimize anxiety. He wants to see nursing home residents leave this world in a dignified state that's as peaceful as it can possibly be.

If the Milbank project is able to change the current nursing home landscape, his vision may become a reality.

References

1. Fahey C. Improving End of Life in Nursing Homes. Presentation at the American Association of Homes & Services for the Aging's 2007 Annual Meeting & Exposition.

2. Strumpf N, Tuch H, Stillman D, Parrish P, Morrison N. Implementing palliative care in the nursing home. Annals of Long Term Care: Clinical Care and Aging 2004;12(11):35-41.

3. World Health Organization. WHO Definition of Palliative Care. Retrieved from www.who.int/cancer/palliative/definition/en on Dec. 12, 2007.

Maureen M. McAndrews is managing editor of ADVANCE.

The Milbank Memorial Fund

With 44 correspondents–including re-searchers, pro-fessional and industry association members and regulatory officials–the Milbank Memorial Fund's end-of-life care project is poised to bring about change, says Monsignor Charles Fahey, program officer.

As an endowed operating foundation, The Milbank Memorial Fund convenes decision makers from the public and private sectors. Program participants use the latest research to influence health policy. According to its Web site, the Fund has engaged in nonpartisan analysis, study, research and communication on health policy issues since its inception in 1905.

Source: Milbank Memorial Fund Home Page, www.milbank.org

Palliative Care Training

nservice training can be an effective method of teaching your staff about the intricacies of providing palliative care. But don't neglect a more hands-on approach to staff training, says Charles F. von Gunten, MD, PhD, FACP, provost of the Center for Palliative Studies at San Diego Hospice & Palliative Care.

"When everyone gets together in a conference room and someone gives them a lecture, we know scientifically that does not change behavior. The way all of us learn how to provide health care, whether at the nurse's aide level or at the doctor level, is someone needs to precept our care and help us take care of real patients in a mentoring kind of way," he says.

For this reason, San Diego Hospice & Palliative Care and the Archstone Foundation, Long Beach, Calif., are engaged in a research project that's examining educational opportunities that go beyond the traditional inservice.

While this type of education won't be as quick as inservice training, Dr. von Gunten says it's a great way to make education stick. "If we're trying to help nurse's aides, then skilled nurse's aides are working right alongside them, helping them to understand how to take care of the patient in front of them," he adds.

While this model of teaching may be more costly at the outset, it will pay off in the long run because it will also boost staff morale, he says.

–Maureen M. McAndrews

Providing Comfort Care

alliative care, which focuses on providing comfort to dying residents, is a multi-dimensional approach that looks at the whole person. Besides pain and symptom management on the clinical side, various other approaches can provide emotional support. For instance, music therapy, pet therapy, guided imagery and meditation can make a big difference in easing tension and decreasing anxiety.

–Maureen M. McAndrews