Abstract
In the April 2008 issue of the Journal of Palliative Medicine, 2 David Kessler, vice president of patient support services for Citrus Valley Health Partners, related a frustration experienced by many hospital palliative care services: planning meticulously to help a hospitalized patient and his or her family navigate the health care system, with facilitated discharge to another care setting in accordance with their expressed goals of care—only to see the team's careful work undone overnight because of poor communication and follow-up before and after discharge, often after transfer to long-term care.
Despite widespread problems with transitions between acute- and long-term care settings, there is considerable interest in palliative care in the long-term care arena, as evidenced by the educational offerings of the American Medical Directors Association (AMDA), a professional association for medical directors of long-term care facilities. Hanson and Ersek 3 have identified opportunities for improving palliative care in this setting through enhanced communication, continuity of care, advance care planning, staff training, and systematic changes in clinical care practice.
But how this interest and opportunity will translate into the provision of palliative care in the long-term care setting is not yet clear. Diverse models for providing palliative care in long-term care are emerging, ranging from institution-wide staff training to external palliative care consultants to greater integration of hospice in the nursing home (see Table 2 for examples of model programs). The long-term care patient population includes those receiving short-term rehabilitation as well as those in need of longer term custodial care. There are important differences in staffing levels, access to licensed professionals, and other resources between skilled nursing, assisted living, and board-and-care facilities.
Source: Center to Advance Palliative Care Report to the Fan Fox and Leslie R. Samuels Foundation; Improving Palliative Care in Nursing Homes, June 1, 2007.
The same spectrum of palliative care needs seen in the hospital also applies in long-term care, although time frames may be different and the urgency of medical crises may be less, says Daniel Maison, M.D., FAAHPM, chief medical officer of Treasure Coast Hospice, Stuart, Florida, which offers palliative care consultation services in both a local hospital and a skilled nursing facility. “Goals of care discussions, complex decision-making, and answers for poorly controlled pain and symptoms are needed just as much, if not more, than in the hospital. Getting everyone involved in the case together at the same table to talk about what's going on, as in the hospital, can be very helpful.”
Abraham Brody, R.N., Ph.D., G.N.P.-B.C., assistant adjunct professor in the department of social and behavioral sciences at the University of California-San Francisco, points out that palliative care services are variable in the long-term care arena. “Certainly there are nursing homes and assisted living facilities that have palliative care programs in place—and the trend is starting to spread, although it's still in its infancy. Places that have more palliative care resources in the community also tend to have more focus on palliative care in long-term care.”
What is Going on in Long-Term Care?
The Center to Advance Palliative Care (CAPC) 2007 report to the Fan Fox & Leslie R. Samuels Foundation, “Improving Palliative Care in Nursing Homes,” based on surveys, interviews, and site visits by CAPC staff and consultants, describes a number of barriers to providing palliative care in the long-term care setting:
1. Ineffective care transitions between the hospital and nursing home, with growing evidence that patient safety is jeopardized by poorly coordinated transitions; Lack of familiarity with the long-term care setting by hospital palliative care staff, resulting in care plans that are not feasible for discharge to a nursing home; Understaffing, resulting in overwhelmed frontline staff, recruiting difficulties, and high turnover at all levels—from aides to administrators—as well as a shortage of physicians and nurses with geriatric and palliative medicine training; A need for training and education for all nursing home staff, but especially frontline workers—with onsite, experiential modules for staff who cannot take a full day off and that are easily repeatable for reinforcement and for new staff hires; Cultural differences between and among staff and residents; Regulatory barriers to palliative care, including stringent, multilevel regulatory oversight from the state and federal government that is often in direct conflict with provision of palliative care. For example, weight loss is considered by regulators to be evidence of poor quality care, incenting widespread use of feeding tubes rather than recognition that loss of appetite and ability to swallow are the natural progression of advanced dementia; Financial constraints, which are worsening because of diminished Medicaid funding and are reflected in growing instability of many long-term care providers as they try to respond to higher acuity and poor reimbursement for today's skilled nursing facility population.
However, CAPC's Samuels report also concludes that sufficient knowledge of best practices exists to support the development of palliative care in nursing homes. The best practices described in the Samuels report can be summarized in the following four basic models of palliative care already succeeding in the long-term care setting:
A nonhospice palliative care consultation service, perhaps based in a setting such as a community hospice, hospital, or outpatient clinic but called upon for onsite consultations by the nursing home medical director, director of nursing, or attending physician. Nursing-home–based palliative care program, in which the nursing home employs its own palliative care physician, nurse practitioner, and/or full team or otherwise deploys staffing and other resources to palliative care needs. One example is Morningside House, a 386-bed nursing home in the Bronx, New York City, where palliative care is provided by an interdisciplinary team of professionals and a palliative philosophy of care is reflected in facility policies such as around-the-clock visiting hours. Emerging models of care management and care coordination, some at the national level and originating in managed care or disease management responses to long-term care needs. An example is Evercare, a Medicare HMO product of UnitedHealthCare, offering nurse practitioner or care manager coordination for frail elderly, disabled, and chronically ill individuals residing in nursing homes. Innovations are also emerging from the culture change movement in long-term care, not a palliative care model per se but aimed at improving long-term care by focusing on residents and their frontline providers. Hospice–nursing home partnerships. Many nursing home residents already receive hospice care from Medicare-certified hospices that have contracts with the facility. A recent Office of Inspector General report
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concludes that 31% of patients enrolled on the Medicare hospice benefit in 2006 resided in long-term care facilities.
Federal government concerns about overuse or inappropriate use of hospice in a chronically ill nursing home population with variable and unpredictable prognoses, despite advanced degenerative dementia, threatens to constrain access to hospice in this setting. Palliative care leaders emphasize, however, that palliative care in the long-term care setting is not synonymous with hospice and is beneficial for many patients who are not eligible for formal hospice services and/or who are ineligible for hospice while they are receiving care under Medicare's skilled nursing benefit. A growing number of hospices are delivering affiliated palliative care consultation services and may offer those consultations in the long-term care setting. Hospice and Palliative Care Center of the Bluegrass, Lexington, Kentucky, is a frequently cited example of an agency that has an established long-term care, nonhospice palliative care consulting practice.
Maison points to advantages in turning to a community hospice agency to supply palliative care services for a facility. “There may already be a contractual relationship and history of working together between the hospice and the facility, and the hospice often has expertise and staff ready to come in, without having to start a nursing home palliative care program from scratch.”
Both in the nursing home and outside it, confusion persists about the distinctions between the hospice benefit (for dying patients with a predictably short prognosis) and palliative care services (for any patient in need, regardless of prognosis), as well as resistance to accepting nonhospice services from a hospice agency, perhaps because of its association with terminal illness. “But those attitudes are not insurmountable by any means. The issue needs to be acknowledged and addressed openly, basically helping facility staff understand the value of nonhospice palliative care,” Maison says.
Building Bridges with Consultation and Education
William Smucker, M.D., a family practice physician in Akron, Ohio, and professor at Northeastern Ohio Universities College of Medicine, says, “I've worked as medical director at the same nursing home since 1981, and I've also been a hospice medical director. Palliative care in long-term care has always seemed a natural to me, given how many facility residents die every year. But people who practice in long-term care need expertise, training, and support.”
Smucker says AMDA has a commitment to palliative care as a prominent topic and skill set for its members. He has been a leader in the development of palliative care resources offered by AMDA, including its Curriculum on Palliative Care in Long-Term Care and its clinical practice manual, Palliative Care in the Long-Term Care Setting Tool Kit.
“If existing palliative care services were to work with us and build bridges of consultation and education, they'd see how different levels of palliative care can be delivered in the skilled nursing facility. If they were to visit the nursing home, even if all they wanted to do was talk about decreasing readmissions to the hospital, we would be glad to discuss how to optimize transfers. We hate to see frail, uncomfortable residents having to go through bad transfers and repeated readmissions to a hospital,” Smucker says. “When hospice and palliative care providers don't know the nursing home culture of care, or the resources available to patients in these settings, they might make false assumptions. But if you come and see a good nursing home, you'll find that we share the same motivation to provide good care and comfort,” he says.
“What happened at our facility is that one of our area hospices came by and said, ‘We'd like to introduce our palliative care services to you.’ They came to lunch and you could tell some of our people didn't get it right off the bat. But then we talked about some real patients and their unrelieved suffering, and by the time I got home that evening, there were several patients identified for palliative care consults.”
There can be a multiplier effect from education and support offered to long-term care staff, Smucker says. “That's what happened here with behavioral health. We had an offer from a behavioral health nurse to come out to the facility. She asked, ‘What do you need?’ We replied, ‘Well, what have you got to offer?’ She now comes once a month, or as needed, for gero-psych educational consultations. It would be great if someone from palliative care came by the facility once a month for an hour—it would help our residents and strengthen continuity and coordination when we send someone back to the hospital.”
Hospital palliative care practitioners need to recognize that they are going to be discharging many patients to and admitting many patients from the nursing home, despite increasing attention to the need to improve continuity, avoid hospitalization, and prevent readmissions, says Mary Ersek, Ph.D., R.N., FAAN, professor of nursing at the University of Pennsylvania. “There will still be back and forth, and you need to realize that these transitions are important and fraught with difficulty.” One place to start is to learn more about existing long-term care resources in the community.
“I would encourage palliative care teams at hospitals that discharge patients to nursing homes and get a lot of traffic from those nursing homes to be in close communication. I'd also make a commitment to find those facilities that do a better job around palliative care and view that as an incentive for pursuing closer partnerships with them. Recognize that a lot of facilities understand palliative care and are trying to do the right thing, and many communities do have centers of excellence in long-term care,” Ersek says. She recommends the geriatric curriculum developed by the End-of-Life Nursing Education Consortium, specifically designed for licensed staff and certified nursing assistants at nursing homes.
“Our hospital palliative care program tries to make connections provider to provider—building trusting relationships and opportunities for dialogue,” says Laura Hanson, M.D., M.P.H., professor at the University of North Carolina School of Medicine. “There are palliative care-trained, like-minded providers in the long-term care setting who are very concerned about these issues. The relationships can be nurtured by the presence of community-based providers. If your hospital service is not able to extend out into the community, at least you should know what is out there,” Hanson says.
“In my travels around the state, when I approach a new nursing home, I ask if there is any unique program or special approach to care that distinguishes the facility. I want to find out if that makes them a better home. But if you don't ask, you might never know,” she adds.
How to Strengthen the Interface
Based on interviews for this article and other resources, there are a number of tips for hospital palliative care practitioners seeking to strengthen their interactions and interface with colleagues caring for patients in need of palliative care in the long-term care arena:
Do not assume that you know what their concerns are; go to listen as well as talk about what you can do together to improve quality of care for this vulnerable patient population. If you are unable to make a visit, at least make telephone contact and start building the relationship. Provide a contact name and phone number for long-term care staff to call with follow-up questions or to clarify what's in the discharge plan. Work to establish POLST (physician orders for life-sustaining treatment) orders
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as a community standard to facilitate communication about patient treatment preferences before, during, and after transfers. Make discharge planning and consultation recommendations as focused and prescriptive as possible for those who will be trying to follow them in other settings. Design pain and symptom management treatments to be feasible for outpatient and long-term care settings, where multiple daily medication administrations may be more difficult. Find out if the medications you are prescribing are actually available and on formulary at the long-term care facility. If not, adjust the patient's prescriptions accordingly. Anticipate and plan for likely future eventualities in order to avert unnecessary hospital stays. Integrate family members and other caregivers into care planning and communication loops at the time of transition from one setting to another. Include clear, legible, and plain English-written instructions, medication lists, and what to expect as the disease progresses. For a hospital concerned about readmissions—and its financial liability and fallout from publicly reported quality benchmarks—administrators may be open to investing in the time and resources needed for the hospital team to build effective bridges to the long-term care setting. Provide facility administrators, medical directors, directors of nursing, and primary care providers with clear information on part B billing for palliative care consultation, on the complexities of physician billing when a patient is on the Medicare Hospice Benefit, and for triggers indicating appropriateness of hospice referral. For example, physicians need to know that the site of care determines the Current Procedural Terminology (CPT) code, who is able to bill for a consultation visit (physicians, nurse practitioners, clinical nurse specialists, physician's assistants, but not hospital employees unless they are not included in the cost report), and that an attending physician who is not a hospice employee bills Medicare Part B for visits (see Table 3 for resources on palliative care billing). Create educational materials for residents and their families exploring the range of possible goals for medical care (comfort, life prolongation, family support, avoiding rehospitalization, cardiopulmonary resuscitation) and explaining do-not-resuscitate orders, advance care planning, artificial hydration/feeding, palliative care, and hospice. Nursing home professionals appreciate opportunities to build collegiality, such as through, for example, periodic meetings of palliative care professionals across settings in the community to share experiences and interests. Such community palliative care professional networks have already emerged in a number of communities. Make transitions of care a quality improvement project—studying processes, breakdowns, and readmission patterns, gathering and analyzing data, and testing potential interventions.
“As you talk about improving connections between long-term care and the hospital, make sure that all the great things the acute care team brings to the patient's care follow the patient—if for no other reason than to preserve the work that's already been done,” Daniel Maison says. Adds Bill Smucker, “I think you'll find a receptive audience. There is great unmet need in long-term care. Any help we can get would be welcome.”
“Hospital professionals don't always recognize that we are all pieces of the community's continuum of care—we sit right in the middle of the community,” Mary Ersek concludes. “The challenge of being a consultation service is that you're not in charge of continuity. But good palliative care means continuity of care. Our job is not truly finished until we have taken a step beyond the hospital's four walls. Now, how can we build that into our routines?”