Home Health Care

Many chronically ill patients wish to remain in their own homes as long as possible. Home health care aims to provide health and social services for older adults in their own homes to improve and maintain their function and to prevent institutionalization. Services may include skilled nursing and psychiatric nursing, physical and occupational therapy, home health aide assistance, and social work support.

Although more research is needed to define the most effective strategies for providing palliative care in a patient’s home, numerous benefits of home palliative care are described in the international literature and in this textbook ( Chapter 43 ) and include increased satisfaction of the family caregivers with the care provided, decreased time spent in the hospital at the end of life, and improved primary care physician management of symptoms. Another study has shown that incorporating a palliative care program into an existing home care program results in improved family satisfaction with care, fewer emergency room visits, and decreased costs.

Daycare and Other Programs for Elders

Adult daycare programs are designed to provide daytime care for patients who have minimal personal care needs and have family caregivers who are able to provide care only at night. Adult daycare offers a range of supportive and social services in the United States, the United Kingdom, Canada, Italy, and other countries. Most centers provide recreation, socialization, meals, some social services, personal care, and transportation. The medical care provided varies from site to site, however. Some centers offer specialized services such as dementia programs and incontinence programs. Although some may offer pain management, they rarely offer comprehensive end-of-life care.

One notable daycare program is found in the United States, the Program for the All-Inclusive Care for the Elderly (PACE). PACE is a community-based, comprehensive care program funded by Medicare and Medicaid dollars. PACE programs enroll older persons who would otherwise be eligible for nursing home placement and provide them with comprehensive medical, rehabilitative, social, and personal services delivered by an interdisciplinary team. In the evening, the members return home to be cared for by families and friends. Care is provided in a daycare environment and in the participant’s home, tailored to the participant’s needs and social resources. PACE programs commit to caring for patients until the end of life, and these patients are no longer eligible for the Medicare hospice benefit while they are enrolled in PACE.

There are no published national standards for the provision of palliative care by PACE, and research suggests wide variation among programs. However, PACE may help clinicians, patients, and families to address important palliative care goals. Specifically, patients enrolled in PACE are more likely to die at home, to avoid the use of invasive medical technology in the last months of life, and to have documented advance planning conversations, compared with Medicare recipients who are not enrolled in PACE. In addition, because the same interdisciplinary team follows patients from primary care to hospitalization to long-term care, the errors and distress that accompany transitions of care may be minimized under PACE. To improve the quality of palliative care provided, many programs have developed educational programs. However, research is needed to determine the specific needs of this group and how best to meet those needs.

Another model of care that integrates a home palliative care program is the Edmonton Regional Palliative Care Program in Alberta, Canada. This program was created with the goal of increasing the access to palliative care services, decreasing the number of cancer-related deaths that occur in acute care facilities, and increasing the participation of primary care physicians in the end-of-life care of their patients. In the pilot program, four interdisciplinary teams provided consultative services for patients enrolled in a palliative care system that integrated several sites of care, including hospital-based services, inpatient palliative care units and hospices, and continuing care facilities, as well as a regional home care program. During the study period from 1992 to 1997, there was a decrease in the number of patients who died in the acute care facility and a significant decrease in the average length of stay in the acute care facility and the cancer center. It is likely that these outcomes not only met the goals of patients and families for a “good death” but also resulted in significant cost savings. Further research is needed to define both these benefits of home palliative care programs.

Assisted Living

Individuals who are less ill and more functionally intact may choose to reside in an assisted living facility. Typically, these facilities provide a combination of housing, personalized support services, and health services. Personal care homes, board and care homes, supportive care homes, residential care homes, and domiciliary care are all examples of assisted living housing. In the United States, as well as other countries, assisted living facilities are quite heterogeneous, reflecting divergent regulations and variable institutional practices and levels of care offered.

Staffing and payment sources vary considerably among facilities. The most complete description of this can be found in literature from the United States. Although they are not required to do so by law, some assisted living facilities provide on-site physician visits and 24-hour nursing care. However, a national study of assisted living facilities in the United States reported that only 30% to 40% were staffed with a full-time registered nurse (40 hours/week). In addition, only 15 of 50 states have minimum staffing laws, 22 of 50 states allow unlicensed staff members to distribute medications, and only 11 of 50 states require training for the nurse’s aides.

Palliative care delivery in assisted living facilities may be hindered by a variety of factors, including lack of 24-hour coverage by a nurse, lack of an interdisciplinary care team, difficulty dispensing opioids because of limited nursing care or a lack of secure storage, insufficient numbers of physician visits, and minimal staff education about end-of-life issues. However, some assisted living facilities are piloting programs to improve care at the end of life in an attempt to provide adequate care for dying individuals. One study compared the dying experience in assisted living facilities with that in nursing homes. In the last month of life, the assisted living residents were more likely to report untreated pain (14.8% vs. 1.8%; P = .013) and inadequately treated shortness of breath (12.5% vs. 0%; P = .004) compared with nursing home residents. Despite these inadequacies in symptom management, however, family and staff members reported greater satisfaction with end-of-life care in assisted living facilities compared with nursing homes. Although this study reported high satisfaction with care by both the families and the staff, this study also found substantial unmet palliative care needs. More research is needed to understand potential care interventions for assisted living residents. With the aging of the population, it is likely that the number of persons who will receive care in an assisted living facility will grow substantially.

Nursing Home Care

Nursing home care is available to patients who develop significant functional and physical impairments during the course of their illness and can no longer live at home or in an assisted living facility. Broadly defined, nursing homes are long-term care institutions that provide inpatient, 24-hour nursing care, as well as medical, social, and personal services to persons in need of short-term nursing and rehabilitation or long-term maintenance.

Increasingly, nursing homes have become the site of death for frail, older persons. It is projected that by the year 2020 approximately 40% of Americans will die in a nursing home. Given this trend, nursing home clinicians will likely assume an increasingly important role in the provision of end-of-life care.

Palliative care in nursing homes is frequently suboptimal. Research has highlighted important concerns with the quality of care in nursing homes from untreated pain, family dissatisfaction with the quality of care, and care that is not consistent with the disease trajectory or patient preferences. Research indicates that 33% to 84% of residents have ongoing pain that impairs ambulation, reduces quality of life, and increases the incidence of depression. In one study, 29% of nursing home residents with cancer reported daily pain, and only 26% of those with daily pain were treated with daily analgesics.

In another study, pain was reported by 69% of nursing home residents who were able to communicate. In 34% of these cases, however, the attending physician failed to recognize and treat the resident’s pain. In a large study of 15,745 nursing homes, the staff reported that 3.4% of the residents had experienced daily excruciating pain during the previous week. Many dying nursing home residents with daily pain are either not receiving adequate pain management treatments or are receiving treatments that are inconsistent with pain management guidelines. Experts have identified barriers to the provision of excellent palliative care, including frequent staffing turnover, lack of palliative training and knowledge among the staff, and tension between goals of restorative care and those of palliative care.

Nursing home staffing issues may create a barrier to palliative care delivery. Staffing and services can vary substantially among nursing homes. Physician visits may be infrequent. A large portion of direct patient care is provided by nursing assistants, who usually have no formal training in geriatrics or palliative care.

The level and types of palliative care services provided vary among nursing homes. For example, some nursing homes have separate palliative care units or beds and specialized dementia care units. Some may be able to administer intravenous medications and complete frequent pain assessments, but others may not. Nursing home residents at one institution may have immediate access to clinicians such as physicians, social workers, and chaplains, whereas others may have infrequently available contacts.

The quality of care also depends on staff turnover. Higher staff-to-patient ratios are associated with higher quality of care, and longer relationships with staff result in greater satisfaction with care. However, many facilities experience frequent staff turnover. High turnover of nurse aides has been associated with inadequate staffing and stressful working conditions. Organization-wide efforts to improve quality of end-of-life care are difficult to sustain without a stable staff. Lack of continuity of care has the potential to affect the quality of pain assessments and other end-of-life care adversely. Therefore, efforts to retain staff are particularly important. Additional education and training may be one strategy to decrease staff turnover.

Data describing educational and quality improvement programs that target physicians, nurses, and other nursing home staff members show an increase in family satisfaction with end-of-life care, increases in patient comfort (i.e., decreased pain intensity), and increases in job satisfaction among the nursing home workers. Thus, staff education may lead to improved care because of an augmented knowledge base, as well as a more stable staff.

Another challenge to the provision of palliative care in nursing homes may be related to regulatory environments. In the United States, experts in both long-term care and palliative medicine note that regulations and reimbursement systems may be at odds with the use of hospice and palliative care in nursing homes. In the United States, the 1987 Omnibus Budget Reconciliation Act (OBRA) stated that a major goal for nursing homes is to maintain or improve physical functioning (OBRA 1987) and mandated comprehensive assessments of all residents using the Minimum Data Set (MDS). The MDS, which includes 400 items that assess health and functional status, is used for clinical assessment and quality improvement. The information is also used to determine levels of reimbursement. Therefore, nursing homes with negative findings on their residents’ MDSs are at risk for financial losses, as well as deficiency citations from state surveyors and possible decertification.

The desire to optimize the measures included in the MDS may be at odds with high-quality end-of-life care that is consistent with patient preferences. For example, weight loss secondary to dysphagia is a common terminal event in persons with dementia. Nursing home staff may believe that they will be cited or perform poorly on quality indicators if they respect a patient’s wish not to have a feeding tube. It is important that these concerns be addressed with the nursing staff that cares for actively dying persons and that appropriate documentation outlining goals of care be noted in the medical record. Current reimbursement policies and the professional culture of many nursing homes focus on restorative care and the use of life-sustaining treatment such as artificial nutrition and hydration. Such financial incentives are one of the reasons cited for the underuse of and late referral of nursing home residents to hospice services or a focus on palliation in the nursing home setting. Palliative care clinicians need to be aware of these tensions to understand the decision-making process at the institution where they practice.

In Canada, limited funding for nursing home patients and similar staffing issues may also interfere with appropriate provision of quality end-of-life care. Research in Canada over the past decade has shown that the quality of care in for-profit nursing homes is lower than that in not-for-profit nursing homes in many areas, including staffing levels and turnover; increased use of restraints, catheters, and tube feeding; and more unwanted outcomes such as pressure ulcers, infections, and hospitalizations.

One way to improve end-of-life care in nursing homes is to increase access to palliative care or hospice involvement for appropriate nursing home residents. Nursing home residents who died with hospice care in place had improved pain assessment and management, a greater likelihood of receiving an opioid for pain, and lower rates of hospitalization, restraint use, and artificial nutrition and hydration. Furthermore, in nursing homes with a larger proportion of residents enrolled in hospice, the non-hospice residents, as well as the hospice residents, experienced lower rates of hospitalization, higher frequency of pain assessment, and higher rates of opioid use for control of pain or dyspnea, when compared with decedents from nursing homes with limited or no hospice presence.

Nonrandomized, case-controlled studies have shown that families rated symptom management as significantly improved after the addition of hospice services to U.S. nursing home care, and overall family satisfaction with end-of-life care was higher. Hospice or palliative care teams can teach family members and other caregivers to care for the dying patient and can offer emotional, psychological, and spiritual support to the patient and family, as well as bereavement care and counseling to family and friends before and after the patient’s death.

A major factor cited for the low rate of hospice involvement in nursing homes is the difficulty in prognostication, especially in residents with a non-cancer diagnosis because they have a less predictable illness trajectory. Other barriers to hospice referral include poor recognition of terminal illness, lack of knowledge within the facility about hospice, and the presence of artificial nutrition or expensive palliative care treatments.

Given that hospice involvement can improve the quality of end-of-life care, many residents will benefit from efforts to increase enrollment in hospice programs. One study found that a quality improvement intervention involving the development of palliative care leadership teams who taught a structured curriculum to all nursing home staff in selected nursing homes led to increases in hospice enrollment, pain assessments, nonpharmacologic pain treatment, and discussions about end-of-life care from baseline. A randomized controlled trial of 205 residents demonstrated that those residents who received a “case-finding” intervention (including “jump-starting” conversations about hospice) were more likely to enroll in hospice within 30 days, had fewer acute care admissions, spent fewer days in an acute care setting, and had families who rated care more highly than the families of those who received the usual care.

Proactive discussion may minimize any conflict that may arise if the nursing home staff members believe that the hospice team members do not respect and value their opinions and care, or if nursing home staff members see the hospice as duplicating or interfering with their work or as another source of criticism and oversight. Nursing homes should focus more on care of the dying as part of their mission. Regulators need to recognize that caring for the dying is part of the nursing facility’s mission, and that these populations require different services and measures of quality of care than those who are receiving custodial care. Nursing facility staff and regulators need training in appropriate means of caring for the dying.