ORIGINAL INVESTIGATION. Prevalence and Structure of Palliative Care Services in California Hospitals

Transcription

1 Prevalence and Structure of Palliative Care Services in California Hospitals Steven Z. Pantilat, MD; J. Andrew Billings, MD ORIGINAL INVESTIGATION Background: Most Americans die in hospitals where shortcomings in end-of-life care are endemic. Hospitalbased palliative care services can improve the care of these patients, yet there are limited data regarding the availability of such services. We sought to determine the prevalence of palliative care services in California hospitals. Methods: We conducted a cross-sectional survey of a random sample of 25% of all California hospitals. We recorded the percentage of hospitals reporting current or planned palliative care consultation services or inpatient palliative care units. Results: We collected data from 107 (96%) of 112 hospitals. Only 17% of hospitals have a palliative care consult service, and 6% have an inpatient palliative care unit. Nearly all services are multidisciplinary. Twenty percent of hospitals have a contract to provide inpatient hospice beds, 19% have an outpatient-based hospice service affiliated with the hospital, and 74% offer bereavement services. Half of all palliative care services are funded exclusively by the hospital. Thirty-eight hospitals (36%) reported an interest in developing palliative care services. Conclusions: Few California hospitals currently have palliative care services, though more express interest in developing them. Bereavement and hospice services are more common and offer opportunities for increasing the number of palliative care services in hospitals. Further studies are needed to characterize palliative care services more fully and to assess the quality of care provided by these services. Arch Intern Med. 2003;163: From the Program in Medical Ethics, Division of General Internal Medicine and Hospitalist Section, Department of Medicine, University of California, San Francisco, School of Medicine, San Francisco (Dr Pantilat), and the Palliative Care Service, Massachusetts General Hospital and Harvard Medical School Center for Palliative Care, Boston (Dr Billings). The authors have no relevant financial interest in this article. DESPITE A common vision of death in which people die at home, free from pain and other distressing symptoms and surrounded by their loved ones, most Americans die in hospitals, alone and in pain. 1 The Study to Understand Prognoses and Preferences for Treatment (SUPPORT) enrolled over 9000 seriously ill, hospitalized adults and found that over half had moderate to severe pain in the last 3 days of life. 2 Severe dyspnea and delirium were also common, and patient preferences for care often went unheeded by the physician. Palliative care is the medical discipline that focuses on ameliorating physical, psychological, social, and spiritual suffering and on supporting patients and their families throughout a life-threatening illness. One model of palliative care is hospice service, which is focused primarily in the home and has provided one successful response to the suffering of dying patients and their families. 3-5 However, only 25% of dying patients enroll in hospice service, and most spend only a few weeks in the program. Even with higher enrollment, many patients will still die in the hospital. In some cases, the patient s care requires hospitalization, but for others it is a choice. One study of older patients with chronic illness found that half preferred to die in the hospital. 6 Given that many people with serious and terminal illnesses will be hospitalized before or at the time of death, recent reports, including one by the Institute of Medicine, have recommended adapting the hospice model of care to the inpatient setting. 1,7 Nonetheless there are limited data regarding the prevalence of such services in hospitals. Therefore, we sampled a series of teaching hospitals in the United States, 8 which we reported separately to examine this issue, and report herein the survey results from California, the largest state, which accounts for 10% of all deaths in the United States. 9 We undertook a telephone survey to determine the prevalence and structure of existing hospital-based palliative care services and plans for future programs, including pal- 1084

2 liative care consultation services, palliative care inpatient units, inpatient hospice units, and inpatient pain services. METHODS HOSPITALS We selected a representative probability random sample of 112 (25%) of all 446 California hospitals for inclusion in this study by choosing every fourth institution from a complete alphabetical list of California hospitals. We conducted the survey during July and August The California Healthcare Association provided contact information for the chief executive officer, medical director, and director of nursing at each hospital. We contacted each person at each institution in the order listed in an attempt to identify the person most knowledgeable about palliative care services at each hospital. Once identified, the knowledgeable person was invited to participate, and we arranged a 20-minute interview. We obtained verbal consent to participate from each respondent. We collected no demographic or personal information about the respondent except for title. The University of California, San Francisco Committee on Human Research approved our protocol. SURVEY We developed a survey that assessed existing and planned palliative care services. We specifically asked about palliative care consultation services, inpatient palliative care units, inpatient hospice units, and bereavement services. We also inquired about pain services. Although pain control is only one facet of palliative care, we decided that the presence of a pain service was an indication that the institution had made a formal commitment to symptom management. For each type of service, we collected data about the age of the service, staffing, census, and other descriptive information. We also asked about the hospital size, location, affiliation, and profit or not-for-profit status. Finally, we assessed how the palliative care services were funded and whether the hospital would want assistance in planning or expanding palliative care services. DATA ANALYSIS We calculated percentages and means and SDs, as appropriate, for descriptive variables. Because we surveyed a representative probability sample of all California hospitals, we report percentages and 95% confidence intervals (CIs) that reflect the prevalence of services in all California hospitals. We conducted 2-tailed Fisher exact tests or analysis of variance as appropriate to examine the association between hospital characteristics and presence or planning for palliative care services. A P value of less than.05 was considered statistically significant. RESULTS HOSPITALS A total of 107 of 112 randomly selected hospitals participated for a response rate of 96%. Most institutions were nonprofit community hospitals of more than 100 beds located in urban settings. Characteristics of responding hospitals resembled nonresponding hospitals as well as all hospitals in California (Table 1). Table 1. Characteristics of Hospitals Surveyed* Characteristic Responders (n = 107) Nonresponders (n=5) All California Hospitals (n = 446) Ownership Nonprofit 54 (50) 2 (40) 247 (55) For profit/investor 32 (30) 3 (60) 118 (26) owned Public 21 (20) 0 82 (18) Beds (66) 5 (100) 307 (69) Location Urban 44 (45) NA NA Rural 26 (27) NA NA Suburban 27 (28) NA NA Type Community 62 (68) NA NA Academic 18 (18) NA NA Tertiary care 11 (12) NA NA VA 1 (1) NA NA Rehab 4 (4) NA NA Other 3 (3) NA NA No answer given 9 (8) NA NA Abbreviations: NA, data assessed via the survey and thus not available; VA, Department of Veterans Affairs. *Data are number (percentage). May not add up to 100% as some hospitals self-identified in more than 1 category. EXISTING SERVICES Eighteen hospitals (17% [95% CI, 10%-24%]) currently had a palliative care consultation service. On average, these services had existed for 4 years and saw 9 patients each day and 14 new patients each month. There was no association between any hospital characteristic we identified and the likelihood of having a palliative care consultation service (Table 2). All but 1 of these services were multidisciplinary, (ie, consisted of a nurse, social worker, or chaplain as well as a physician) (Table 3). One consultation service comprised only physicians. The physicians involved represented many fields, including internal medicine (15), neurology (4), oncology (11), hospitalist (5), anesthesia (6), pain medicine (2), and geriatrics (5). Most current programs include a social worker or chaplain, but few have a bereavement coordinator. Inpatient Palliative Care Units Only 6 hospitals (6% [95% CI, 2%-11%]) had an inpatient palliative care unit. The mean number of beds was 13 and the average daily census was 10 patients, with 13 new patients each month and an average length of stay of 9 days. Of the 6 units, 4 were located in the hospital, 1 was freestanding, and the other was in a nursing home. We found no hospital characteristics associated with the presence of an inpatient palliative care unit (Table 2). Professionals from many disciplines staffed 5 of these units, while 1 unit was staffed only by physicians (Table 3). The physicians specialties included internal medicine (3), neu- 1085

3 Table 2. Current Palliative Care Services* Hospital Characteristic No. (n = 18) Inpatient Palliative Care Unit (n = 6) (n = 32) Ownership Nonprofit (72) 3 (50) 24 (75) For profit/investor owned 32 3 (17) 1 (17) 5 (16) Public 21 2 (11) 2 (33) 3 (9) Size Beds (89) 6 (100) 28 (88) Beds (11) 0 4 (12) Location Urban 44 8 (45) 4 (67) 19 (59) Rural 26 4 (22) 2 (33) 7 (22) Suburban 27 6 (33) 0 6 (19) Type Community 62 9 (50) 2 (33) 16 (50) Academic 17 3 (17) 1 (17) 9 (28) Tertiary care 11 5 (28) 1 (17) 7 (22) SNF 1 1 (5) 1 (17) 0 VA (17) 0 Abbreviations: SNF, skilled nursing facility; VA, Department of Veterans Affairs. *Data are number (percentage) of hospitals unless otherwise specified. Totals may exceed 100% due to rounding. No associations are statistically significant. All associations are statistically significant at P.05 using analysis of variance. Table 3. Staffing of Inpatient Palliative Care and s* Palliative Care Consultation Service (n = 18) rology (1), oncology (3), hospitalist (2), anesthesia (1), and geriatrics (2). Thirty-two hospitals (30% [95% CI, 21%-39%]) had pain services, of which 13 (41% [95% CI, 32%-50%]) were integrated into a palliative care service. Large, nonprofit, urban community hospitals are more likely to have a pain service (Table 2). The pain services were staffed by physicians from various specialties, including internal medicine (12), neurology (4), oncology (9), hospitalist (3), anesthesia (22), pain medicine (2), and geriatrics (2). Multiple Services Inpatient Palliative Care Unit (n=6) Pain Service (n = 32) Physicians Nurses Social workers Chaplains Pharmacists Bereavement Volunteers *Data are number of people. Overall, 19 (18% [95% CI, 11%-25%]) hospitals had either a palliative care consultation service, inpatient palliative care unit, or both. Twenty hospitals (19% [95% CI, 12%-26%]) had only a pain service and only 4 hospitals had all 3 services: a palliative care consultation service, inpatient palliative care unit, and pain service. Of the 6 hospitals with an inpatient palliative care unit, 5 also had a consultation service. Hospice Services In addition to the inpatient services discussed previously, 22 hospitals (20% [95% CI, 12%-28%]) have a contract to provide inpatient hospice beds and 20 (19% [95% CI, 12%-26%]) have an outpatient-based hospice service affiliated with the hospital. Fourteen hospitals (13% [95% CI, 7%-19%]) have both. Bereavement Services A total of 74 hospitals (69% [95% CI, 60%-78%]) offered bereavement services. These services ranged from counseling and support groups to sending cards or making telephone calls to bereaved family members and were most commonly provided by chaplains and social workers. Very few existing palliative care programs (17% of consultation programs; 17% of inpatient units) included a bereavement specialist. Funding Of the 19 hospitals that had either a palliative care consult service or inpatient palliative care unit, 11 (58% [95% CI, 49%-67%]) received funding from the hospital. For 10 of these hospitals, this funding represented the only source of support for the palliative care services. The remaining hospital received an additional 5% of its support from donations. Only 7 hospitals (37%) reported receiving support through clinical revenue, but for 5 of those it represented the sole funding source. Three hospitals reported receiving a combination of funding from the hos- 1086

4 pital, research grants, clinical revenue, and donations. Although 7 hospitals (37% [95% CI, 28%-46%]) reported that they conduct research about their palliative care services, only 2 (10%) reported receiving grant funding. PLANNED SERVICES Overall, 14 hospitals (13% [95% CI, 7%-19%]) had plans for establishing a palliative care consultation service. Of the 12 hospitals that could provide details of their plans, 12 will involve physicians; 11, nurses; 9, social workers; 7, chaplains; and only 1 will have volunteers. Inpatient Palliative Care Unit Four hospitals (4% [95% CI, 0.1%-7%]) were planning an inpatient palliative care unit. Only 2 hospitals could provide details about staffing. Both planned to include physicians, nurses, social workers, and chaplains. A total of 9 hospitals (8% [95% CI, 3%-13%]) have plans to institute a pain service, of which 3 (33%) will be integrated with a palliative care service. Of the 8 programs that provided details of their planned pain service, all 8 intended to include physicians and nurses, and 7 will also include chaplains. Multiple Services Overall 16 (15% [95% CI, 8%-22%]) hospitals were planning to establish either a palliative care consultation service or inpatient palliative care unit, and 2 (2%) were planning both. Nine hospitals (8%) were planning a pain service, and nearly 1 in 5 (19%) were planning to establish a palliative care consultation service, inpatient palliative care unit, or pain service. Interest in Developing Services Thirty-eight hospitals (36% [95% CI, 27%-45%]) reported that they were interested in developing palliative care services. Of these, 18 already had an existing program, 8 had a palliative care consultation service, 15 had a pain service, and none had an inpatient palliative care unit. Twenty-seven hospitals (25% [95% CI, 17%- 33%]) responded that they would like assistance in developing plans for such units. COMMENT Currently, only a minority of responding California hospitals have either a palliative care consultation service or an inpatient palliative care unit. A smaller number of respondents have plans to establish one or the other. Although many services included professionals from a variety of disciplines, typically physicians, nurses and social workers, and chaplains, a multidisciplinary approach was not universal. In contrast to hospice programs where multidisciplinary care is the rule, inclusion of a bereavement specialist, pharmacist, or volunteers was unusual, and a few palliative care programs lacked even a social worker or chaplain. Pain services were more common, with nearly one third of hospitals reporting an existing service. Of these pain services, 40% were integrated into a palliative care service. Although a pain service is unlikely to address the broad range of palliative care issues, pain is a common problem in end-of-life care, and such services may play an important role in the care of dying patients. In contrast to the small number of inpatient palliative care services, nearly three quarters of all hospitals offer bereavement services. This finding suggests that hospitals are trying to meet the needs of families of patients who die in the hospital. Although many of these services included counseling and support groups, some were limited to sending cards and making telephone calls to the bereaved. Thus, the true prevalence of comprehensive bereavement programs is less than 74%. One in 5 responding hospitals has a contract with a hospice to provide inpatient beds for hospice patients, and a similar number have a hospice affiliated with the hospital. Whereas approximately half of people in the United States die in hospitals, hospice service is the major source of experience and expertise in palliative care focused on home care. Our data demonstrate that collaboration between hospitals and hospices exists but is not common. Finding creative ways to help hospitals develop palliative care services is important, since 36% of all surveyed hospitals, including 18% that already had a palliative care consultation service, inpatient palliative care unit, or pain service, indicated an interest in establishing these services and a quarter wanted assistance. Because nearly every community has a hospice and many already collaborate, forging partnerships between hospices and hospitals may provide a ready avenue for developing such services. Expansion of bereavement and pain services, which are greater in number than palliative care services, offers another opportunity for the development of more palliative care services. Our results show that half of palliative care services are funded by the hospital with a smaller number funded exclusively by clinical revenue. Funding of palliative care is an ongoing concern, 7,10 and our data suggest that most services require hospital support. Donations and grants make up only a small percentage of funding. Support from the hospital will be critical for most programs intent on establishing palliative care services. Ultimately, the expansion and sustainability of these clinical services will likely depend on adequate funding from clinical sources and not solely on the assistance of the hospital, grants, or donations. Our results are similar to 2 recent surveys of the prevalence of hospital-based palliative care services. Our study of members of the Council of Teaching Hospitals (COTH) used an almost identical survey as the current study and found that 26% had a palliative care consultation service or an inpatient palliative care unit and 49% had a pain service. 8 The slightly higher prevalence of palliative care services among these hospitals may be be- 1087

5 cause they all have training programs and many are academic medical centers where specialty care, including palliative care, may be more common. By contrast, only 55% of these hospitals offered bereavement services. A second study based on the American Hospital Association (AHA) 1998 annual survey found that 15% of hospitals reported an end-of-life care service and 36% had a pain service. 11 A more in-depth follow-up survey sent to hospitals that reported the presence of end-of-life care or pain services in the AHA survey found that 30% of more than 1000 respondents had a hospital-based palliative care service and 20% had plans to establish one. 11 Because the follow-up in this study included only those hospitals with established end-of-life care or pain services, we cannot directly compare these results with ours. Nonetheless, the similarity and consistency of our results to the COTHand AHA-based data (despite having been derived from different samples and from different methodologies) support the validity of our findings. Because we surveyed a random sample of all California hospitals and achieved a very high response rate, our results give an accurate picture of the current state of palliative services in California. In future years, repetition of this study could track the development of palliative care services over time. In addition, researchers could use this methodology to evaluate the impact of programs designed to increase hospital-based palliative care services or to determine the prevalence of palliative care services in other states or health care systems. Our study has several limitations. First, we surveyed hospitals only in California; results may differ in other parts of the country. However, our high response rate and the variety of types of hospitals surveyed increases our generalizability. The similarity between our findings and those of other surveys supports our results. Second, we cannot independently confirm whether hospitals truly have the services reported. Related to this issue, we did not specify criteria for features of any particular service and have no way of knowing what each respondent meant when reporting that such a service is provided at their institution. For example, 74% of hospitals reported offering bereavement services. However, some described these as simply mailing a card or making a telephone call to bereaved family members. Such interventions, though helpful, are limited in scope. It may be that some hospitals answered similarly regarding their palliative care services. However, the fact that most services contained at least a physician, nurse, and social worker suggests that these hospitals did not overreport regarding palliative care services. In addition, hospitals may have been overly optimistic in reporting interest in developing palliative care services. Finally, we have no data about the quality of care provided by these services. Data regarding prevalence, structure, and funding are an important start, but understanding the true impact of these services will require more study of patient outcomes. CONCLUSIONS Our survey shows that only a minority of hospitals in California offer palliative care services and that a small number have plans to develop such services. More hospitals have inpatient pain services and bereavement services, and 20% have formal ties with hospices, suggesting possible avenues for expanding palliative care services. The current lapses in end-of-life care in hospitals should drive the development of inpatient palliative care services. In addition to improving care for hospitalized patients and their families, these services are the training ground for health care professionals to learn the core competencies in palliative care needed to provide quality care to all patients at the end of life. Few established programs rely exclusively on clinical revenue, suggesting that in the short term the development of these programs will depend primarily on hospitals but will also require support from a combination of grants, donations, and clinical revenue. Ultimately, it will be critical to characterize these services more fully and to assess the impact of these services on the quality of care to support their continued expansion and funding. Accepted for publication July 11, This project was supported in part by a grant from the Last Acts Provider Education Committee of the Robert Wood Johnson Foundation, Princeton, NJ. Drs Pantilat and Billings are Soros Foundation Project on Death in America Faculty Scholars. Dr Pantilat is a recipient of a Mentored Patient Oriented Clinical Research Career Development Award (K23 AG ) from the National Institute on Aging, Baltimore, Md. We want to thank Judy Citko, JD, at the California Healthcare Association, Sacramento, for her generous assistance with this project. We are grateful to the Robert Wood Johnson Foundation and the Last Acts Provider Education Committee. We also extend our great appreciation and admiration to Talia Baruth, BS, for administering the survey with skill and respect. Corresponding author and reprints: Steven Z. Pantilat, MD, 521 Parnassus Ave, Suite C-126, University of California, San Francisco, Box 0903, San Francisco, CA ( stevep@medicine.ucsf.edu). 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