Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Hospital-Based Family Caregiver Programs:
Building Institutional Resources and Community Ties

Carol Levine

United Hospital Fund

[Citation: Levine, C. Hospital-based family caregiver programs:
Building institutional resources and community ties. Innovations in End-of-Life Care, 2001;3(2), www.edc.org/lastacts]

Most family caregiving takes place at home, even for people at the end of life. But the long months and years of caregiving that precede the final stages are often punctuated by acute episodes of illness or trauma, where hospitalization is necessary. Whether these hospital stays are of a few days' duration or stretch out into weeks, they typically mark turning points in the patient's condition and in the caregiver's responsibilities. And for everyone involved, the experience of hospitalization is usually full of anxiety, stress, and uncertainty. Ordinary life—even in the extraordinary conditions that characterize long-term caregiving—is suspended in the hospital environment.

This issue of Innovations in End-of-Life Care focuses on projects that are changing the culture and practices of hospitals to respond more creatively to the needs of family caregivers of people with dementia, who are often in the last stages of life. This group of caregivers—some of the 25 million Americans who take on this responsibility—has particularly acute needs. The two featured projects are part of the United Hospital Fund's Family Caregiver Initiative, a $2 million effort that is making a difference in New York City hospitals and communities.

Cabrini Medical Center in Manhattan has created two acute care dementia units called "Windows to the Heart"; one is at the medical center and the second is at Cabrini Center for Nursing and Rehabilitation. These units provide a high level of empathetic care to family caregivers of individuals with Alzheimer's disease and related dementias. The Brooklyn Hospital has taken a different route toward its goal of improving care for a similar population of Blacks of Northern and Central Brooklyn. With its community partner, Wartburg Lutheran Home for the Aging, the Brooklyn Hospital project has significantly reduced caregiver strain and improved follow-up care. In this project, a gerontologic nurse practitioner identifies families while the patient is hospitalized, teaches them caregiving techniques, and follows them after discharge with phone calls and home visits to make sure the transition has gone smoothly. The Wartburg staff provides seminars available to all caregivers in the community.

If most caregiving takes place at home, why look to hospitals for help? This question arose early on in discussions within the Families and Health Care Project. Before determining a set of research activities, we held several meetings with providers from many different disciplines and types of affiliations as well as with family caregivers. No matter what question the meeting formally addressed, again and again participants brought up the problems surrounding transitions or transfers from one care setting to another. Usually the discussion centered around discharge from hospital to home or to another facility, but many people also mentioned the often chaotic admission process.

Everyone was frustrated with abrupt discharge policies that shortchanged essential caregiver training and planning. Even more compelling was the sense that while hospitalization may have improved the patient's physical condition by treating pneumonia or mending a broken hip, it had led to deterioration in the person's overall functioning and had been an anxiety-ridden experience for the caregiver. So one reason to look to hospitals for solutions is that they are part of the problem.

A second reason was the conviction that hospitalization, while admittedly challenging, is an opportunity to reassess the caregiving situation and to provide family caregivers with referrals and resources to help them in the community. Various hospital professionals are involved with the patient's care, and if given time and incentives can support the family through the hospital stay and help them make whatever adjustments are necessary at home.

A final reason was pragmatic. While the extensive multidisciplinary research and analytic activities of the Families and Health Care Project are funded mainly through foundation grants, one of our goals has always been to determine how to use the Fund's grantmaking to shape meaningful change in the health care delivery system. A major portion of the Fund's philanthropic dollars, which are raised annually by the Fund and United Way of New York City, is designated for hospital-based initiatives. "Hospital," after all, is our middle name. The Family Caregiver Initiative blends the Fund's expertise in research and analysis with its philanthropic mission.

However, we knew that most hospitals had not done much for family caregivers, whose importance to the health care system in general was largely unrecognized. We wondered: If we issued an RFP, would anyone respond? In March 1998 we got our answer: 28 New York City hospitals responded to our Phase I RFP for six-month planning grants of $20,000. The applications were extraordinarily candid. They acknowledged the problems and promised a serious attempt to engage hospital staff and family caregivers in a process of determining where trouble spots existed and what programs might be instituted in response.

In May 1998, sixteen of these hospitals were awarded grants to survey what was currently being done in their institution specifically for family caregivers and to propose a programmatic response. At the end of the planning period we issued an RFP for program development. It specified that the program had to have high-level administrative support, multidisciplinary membership, participation of a community-based agency, and the involvement of family caregivers.

All sixteen hospitals responded to the Phase II RFP for two-year implementation grants. The proposed projects were diverse, ranging from a hospital-wide program to educate staff and create resources for family caregivers (Mount Sinai Hospital) to the creation of a website (http://www.tbi-help.org) for caregivers of traumatic brain injury patients (Jamaica Medical Center). In February 1999, we awarded seven two-year implementation grants, six for $175,000 and one for $100,000. Just last month the Board of Directors approved third-year grants of $75,000 to each of the seven hospitals to enhance or modify their projects and to collaborate with us in a structured dissemination program.

All the hospitals have made important progress, and have identified areas for improvement or modification. Interestingly, even before the project activities were underway, project staff reported to us that the fact that they had been awarded a grant and that there were now identified staff concerned with family caregivers had brought them new status within the institution and increased questions and referrals from their colleagues. Over the course of this initiative, we have learned that while hospitals cannot and should not provide all the services caregivers need, they can be an important source of support and information at a critical point in the caregiving experience and that they can be good partners with other agencies in the community.

As part of its research agenda, the Families and Health Care Project conducted a series of focus groups with experienced family caregivers that gave us important insights into their problems with transitions in care settings. The findings of these focus groups are described in the United Hospital Fund Special Report, "Rough Crossings: Family Caregivers' Odysseys through the Health Care System".¹ Briefly, caregivers told us that hospitalization led them to confront the deterioration in the patient's condition and intensified their sadness and sense of loss. They indignantly reported the difficulties they encountered in getting information from hospital staff about the patient's condition and the results of tests or procedures. They reported that they felt invisible—or worse, unwelcome—in hospitals until the patient was ready to go home. They described the lack of training in complex medical equipment that they were responsible for operating at home. What training was provided was perfunctory and dismissive of their fears. The staff did not appreciate, they told us, that caregivers were learning to do a task for the first time on someone they love. On the other hand, small gestures of kindness or concern were gratefully remembered long after the event.

We learned more about the impact of hospitalization from a national and New York City random telephone survey of family caregivers conducted by the Families and Health Care Project in partnership with the Visiting Nurse Service of New York and Harvard School of Public Health.² In this survey, New York City data did not differ in critical ways from the national data, suggesting that our focus groups' experiences are widespread. The respondents—a representative population-based sample—had all provided care for a family member or other person in the previous 12 months. About half were no longer providing care, and the most common reason was that the person had died.

Half of the care recipients had been hospitalized within the previous 12 months. After the hospitalization, caregivers' responsibilities increased in assisting with both Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs). (ADLs are personal care tasks such as helping with bathing and toileting, while IADLs are household or management tasks such as providing transportation and shopping.) This statistically significant finding confirmed our focus groups' reports that life was harder for them after the care recipient had been hospitalized.

It was not always so. In the past, people were kept in hospitals until they were recovered, or at least until they had reached a stable condition. Now, even surgical patients are discharged with open wounds that need careful monitoring. Also, in the past, hospitalization was sometimes used to give family members a break from caregiving. While this was certainly an expensive and probably unjustified use of scarce resources, it at least reflected an appreciation of the difficulty of caring for a demented or dying person. Now, however, hospitalization is reserved for the most acute medical conditions, since almost everything else can be managed at home with the aid of technology. But, while people who are admitted to hospitals are almost by definition very, very sick, hospital staffing patterns have changed so that there are fewer nurses and nurses' aides per patient. Tasks formerly performed by registered nurses are routinely assigned to less-trained staff.³ Furthermore, publicity about hospital errors in medication and surgery has made family members concerned about patient safety.⁴

As a result, family members become hypervigilant, afraid to leave the patient alone, particularly if he or she is elderly, has cognitive problems, or has a complex medical regimen that must be followed exactly. Many family members organize shifts so that the patient is never left alone. Doctors often advise that if families can afford it, they should hire private nurses or aides to provide essential care.^5,6 This kind of fear and constant vigilance plays havoc with caregivers' work schedules and other responsibilities, to say nothing of their emotional stamina.

Yet, as the Cabrini program shows, it need not be so. Trained staff and sensitive policies and practices can reduce caregiver stress, and facilitate patient adjustment. Instead of seeing dementia patients as "crazy" or deliberately troublesome, staff recognize that these patients are often reacting quite rationally to a totally disorienting experience. Imagine, if you will, being moved out of your hospital room in the middle of the night by strangers who do not say a word to you, take you on a circuitous route through the hospital, and then leave you in a cold, dark corridor. Standard procedure for X-rays or CAT scans. Is screaming in fear under these circumstances, irrational or understandable?

Using Family Caregivers as a Patient Resource

Family caregivers of dementia patients (and others as well) commonly complain that their intimate knowledge of the patient's behavior and medical condition is frequently disregarded by hospital staff, who assume that they have all the expertise that is necessary. As part of the Family Caregiver Initiative grant to New York University's Hospital Center's Silberstein Aging and Dementia Research Center, the project staff created two tools for identifying and understanding patients with dementia as they are admitted to the hospital. The "Dementia Screen" flags dementia patients at their initial entry point so that hospital staff can provide appropriate care and know that they need to interview family caregivers to obtain accurate information. The "Patient Profile" is designed to be completed by family caregivers identified as a result of the Dementia Screen. It provides assessment data that enables clinical staff to individualize and enhance care. Hospital Information System staff developed and programmed data entry screens that facilitate data entry directly into the clinical record, which makes the information accessible to professional care providers.

What Next?

Each of our grantees has plans to expand or enhance their projects. For example, Maimonides Medical Center in Brooklyn will expand its target caregiver population to all caregivers caring for elderly patients admitted to the hospital, and will expand its staff education and post-discharge follow-up. Peninsula Hospital Center in Far Rockaway will revise its original assessment tool for caregivers of patients with traumatic brain injury to better understand their capabilities and future needs. It will also continue to track caregiver adjustment, problems in the community, and needs for further education.

Independently, several grantees have identified the same problem area: Most demented or seriously ill patients are admitted to the hospital through the Emergency Department (ED), where staff are not trained to distinguish dementia from other sources of anxiety. Television shows notwithstanding, most ED staff do not have time to spend interviewing family members or providing emotional support. Family members are shepherded away from the patient, who is left alone to be triaged for admission or treatment. The Cabrini project intends to focus on ED admission in the next year to facilitate the speedy assignment of dementia patients to the proper unit and to directly involve family caregivers in the intake process.

While our dissemination plans are still in progress, we plan to spend the next year identifying the lessons learned from these projects and organizing ways to share this information with others. All the projects enthusiastically agreed to participate in this process.

To be sure, the barriers that existed at the start of this initiative have not been torn down, and in fact may be higher in some institutions. Staff cuts, especially in nursing, are serious impediments to any program. Many institutions are under severe financial constraints, and are not likely to assign resources for family caregivers unless they can see a direct economic benefit. Just as families have difficulties communicating with professionals, hospitals have internal communication problems. Information systems are not designed to collect important family data. Families who do not speak English and whose experience with the Western medical model is limited have special needs that few professionals are trained to address. Even more difficult to change are the professional and institutional cultures that see families as "trouble" rather than as resources and allies.⁷

Still, compared to the situation just a few years ago, family caregiving has moved squarely onto the professional and public policy agenda. As more and more families are faced with the challenge of caring for a loved one at the end of life, medical institutions and health care providers, as well as other parts of society, will be moved to respond. It is up to us to shape that response in positive, compassionate, and humane ways.

References

1. Levine C. Rough Crossings: Family Caregivers' Odysseys through the Health Care System. New York: United Hospital Fund, 1998.[Return to Editorial]

2. Levine C, Kuerbis A, Gould DA, Navaie-Waliser M, Feldman PH, Donelan K. A Survey of Family Caregivers in New York City: Findings and Implications for the Health Care System. New York: United Hospital Fund, 2000.[Return to Editorial]

3. Fagin CM. When Care Becomes a Burden: Diminishing Access to Adequate Nursing. New York: Milbank Memorial Fund, 2001.[Return to Editorial]

4. Institute of Medicine. To Err is Human: Building a Safer Health System. Washington, DC: National Academy Press, 1999.[Return to Editorial]

5. Trafford A. When the hospital staff isn't enough. Washington Post, January 7, 2001, p. A1.[Return to Editorial]

6. Parker-Pope T. How to lessen impact of nursing shortage on your hospital stay. Wall Street Journal, March 2, 2001, p. 19. [Return to Editorial]

7. Levine C, Zuckerman C. The trouble with families: Toward an ethic of accommodation. Annals of Internal Medicine 130:148-152 (January 15, 1999).[Return to Editorial]

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