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Grace Christ, DSW - Columbia University, School of Social Work
Susan E. Blacker, BSW, MSW, RN – St. Michael’s Hospital, Toronto, Ontario.
A recent multi-site study of hospital-based palliative care programs described their rationale and mission in the following way. “Advances in disease prevention, disease-modifying therapies, and medical technology in combination with the aging of the population have resulted in a dramatic growth in the number of adults living with serious illness. Despite enormous expenditures, patients with serious illness often receive poor quality medical care, characterized by untreated symptoms, unmet personal care needs, high caregiver burden, and low patient and family satisfaction. Palliative care is the interdisciplinary specialty that focuses on improving quality of life for patients with advanced illness and for their families through pain and symptom management, communication and support for medical decisions around goals of care, and assurance of safe transitions between care settings” (Morrison, Maroney-Galin, Kralovec, & Meier, 2005, p. 1784).
Social workers provide the majority of mental health, psychosocial, and bereavement services in hospice (Connor, 2007-2008) and in hospital-based palliative care. As the older population increases and requires more palliative services during advanced illness, it is essential for social workers to develop expertise in biopsychosocial assessment, evidence-based interventions, and service delivery systems that will enable them to address their special needs.
Though not often described as such, palliative care programs are in fact comprehensive systems of care or care coordination models that aim to organize patient care for patients with advanced illnesses to be more effective in meeting patients’ needs. Palliative care aims to be holistic in providing careful attention to pain and symptom management, attention to emotional and psychosocial issues, and fully integrating family caregivers in establishing goals of care. There are differences in the specific components of palliative care programs, where they are located, how they are conducted, and the personnel they use, though standards are being developed to create greater uniformity and consistency across programs (Ferrell et al., 2007).
This module will address:
There are two different approaches to the care of advanced or terminal illness in the United States: Palliative Care and Hospice. Both have emerged from a similar philosophy of care, but they differ on when and where care is provided. In the U.S. Hospice is most often provided in the home or in a long-term care facility. To obtain reimbursement, the patient must be off curative treatment, have a life expectancy of no more than 6 months, and have a care partner if services are to be provided in the home. In contrast palliative care is most often provided in the hospital or in an outpatient facility without the requirement of a specific prognosis, and it can be delivered in combination with curative treatment. As shown in Figures 1 and 2, each has a defined philosophy and model of care based largely on U.S. health care reimbursement structures. Figure 3 shows one effort to reconcile these two approaches and to extend care through the bereavement process of survivors. Currently hospice and palliative care proponents are testing models to integrate and reconcile their differences as they seek to permeate mainstream health care services with the palliative philosophy.
Improving the quality of life is accomplished through the prevention and relief of suffering by means of early identification and careful assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. This approach to care is now integrated into both hospice and palliative care programs though in somewhat different ways. Advocates of the palliative care approach believe that it should be integrated throughout medical practice with serious illness from diagnosis to terminal phases and across all sites of care. The WHO definition of palliative care, accessed on July 24, 2008, can be found in http://www.who.int/cancer/palliative/definition/en/.
The palliative care program model consists of the following nine components:
As will be described in more detail below and in the policy section, the palliative care philosophy emerged from the hospice movement but differs from hospice in the U.S. in that it aims to help patients regardless of prognosis and at all stages of a serious illness, not just at the end of life. Palliative care also differs from Hospice in the U.S. in that it may be delivered simultaneous with curative or life-prolonging medical care and is not dependent on the patient’s prognosis, i.e., expected time until death. Proponents believe that it should be an integral part of comprehensive care for patients of all ages with life-limiting illnesses. Practically, however, without the hospice benefit, palliative care often struggles to provide the skilled home care services and psychosocial support available through hospice and needed during advanced stages of illnesses, for example 24-hour-phone consultation.
Although Hospice programs developed and promoted a palliative approach, their functioning is shaped by the U.S. reimbursement structure. Hospices are only reimbursed for work with patients whose life expectancy, as determined by two physicians, is 6 months or less. Importantly, Hospice patients will not receive Medicare benefits if they are still receiving or pursuing curative treatments. These restrictions are limiting because it is increasingly difficult to accurately determine prognosis on an individual level. Technology and medical advances have blurred the line between advanced illness and end of life. Furthermore, curative treatments may also be palliative and with continued medical advances emerging it is difficult for some patients to agree not to participate in any curative efforts if they might extend their lives without increasing suffering of patient or family.
Figure 1 shows the traditional model of intervening by Hospice after a terminal prognosis of no more than 6 months. Figure 2 shows the current palliative care model that aims to complement curative treatments throughout the illness experience, beginning at diagnosis. This reflects the contemporary focus on expanding palliative care beyond end-of-life care, in contrast to Hospice care, which begins 6 months before death. Figure 3 is an example of emerging newer models that exemplify a more holistic approach from the point of diagnosis that explicitly encompasses survivor bereavement following death.
The populations in the U.S. and in many countries are aging. The number of Americans over the age of 65 has tripled in the 20th century. At the same time life expectancy has increased dramatically. More people are now living longer and the proportion of those living beyond 60 has increased, and will increase further over the next 20 years (Sepulveda, Marlin, Yoshida, & Ullrich, 2002). Table 1 documents the change in life expectancy in the U.S. from 1900 to 2000 as well as changes in where people die, how medical care is paid for, and the period of disability before death. By 2005, life expectancy had already increased to 77.9 years.
Improvements in public health, including the prevention and treatment of infectious diseases and other medical advances, have greatly reduced the proportion of deaths occurring in childhood and early adulthood. As a consequence, older adults account for an increasing number of deaths in the U.S. Preliminary data for 2005 show that of the 2,447,903 individuals who died in that year 1, 788,459 (73%) were over the age of 65 years(Centers for Disease Control [CDC], 2008) The number of oldest old, people over 85 years (who have the highest mortality rate), will double to 10 million by the year 2030. Comparatively little research has been carried out on their palliative care needs during advanced and terminal illness phases.
Other social realities have forced and shaped the discussion of advanced and terminal illness in the U.S.
Older people often suffer from multiple chronic conditions that might contribute to death, making it difficult to establish the main cause of death. Table 2 shows the changes in the ranking of the main causes of death as predicted for the year 2020 compared with the actual causes in 1990 (Murray & Lopez, 1997).
Longevity may not inevitably be accompanied by longer periods of disability towards the end of life (Andrews, 2001). Indeed, some recent studies show disability declining in successive cohorts of people as they age (Manton & Land, 2000). A recent study of older Americans from 1992 to 2003 found increases in active life expectancy past age 65 and decreases in life expectancy with severe disability (Cai & Lubitz, 2007). However, if more people live to older ages and if chronic diseases become more common with age, the number of people living with their effects will increase. More people will need some form of help towards the end of life. in particular, women are more likely than men to suffer from several chronic conditions such as osteoporosis and arthritis that may compromise this extended survival (Mathers, Sadana, Salomon, Murray, & Lopez, 2001). Women over 90 years of age also have a higher incidence than men of non-vascular dementia (e.g., Alzheimer’s Disease), whereas men have a higher incidence of the rarer vascular dementia throughout the life cycle (Ruintenberg, Alewijn, van Swieten, Hofman, & Breteler, 2001).
Patients and families have predictable needs based on characteristics of the final illness. The examples of cancer, heart failure, and dementia illustrate some of these differences.
Cancer rates increase with age: 75% of deaths from cancer occur in people over 65 years. For women, the most common cancers are breast, lung, and colorectal. For men, the most common are lung, prostate, and colorectal. The prognosis for any individual depends on the extent of the growth at presentation and the response of the tumor to treatment. Treatment may include surgery, radiotherapy, and chemotherapy. As the first chart in Figure 4 shows, people with cancer may experience a long period of good functioning with limited impairment. They may not be severely restricted in their activities until the disease stops responding to treatment, at which point they experience a relatively rapid decline. However, because of the historical association of cancer with disability, pain, and death in its terminal phase, patients may need considerable support, education, and continuous communication to cope adequately with their anxiety about this disease in its final stages. Patients with cancer and their caregivers say they want more information and involvement in decision-making. They experience better psychosocial adjustment if their pain and symptoms are controlled and when good communication is part of their care from the time of diagnosis. Because cancer has been somewhat more predictable in its advanced phases than other diseases (i.e., predicting time to death), it became the dominant model for both hospice and palliative care interventions. When diagnosed early, people living with cancer experience a long period of fairly good physical functioning, followed by a somewhat longer period of decline (Institute of Medicine [IOM], 2007).
Heart failure. Heart failure affects more than one in ten people over the age of 70. The 5-year mortality of 80% is worse than it is for many cancers (World Health Organization [WHO], 2004). The course of the disease as summarized in the second chart in Figure 4 is very different from that of cancer. There are intermittent exacerbations of the symptoms of breathlessness and pain followed by a gradual return to a level of functioning that is often fairly close to the previous level (McCarthy, Lay, & Addington-Hall, 1996; McCarthy, Addington-Hall, & Lay, 1997). Death may occur during one of the exacerbation crises, or the patient may experience a course of gradual decline over time. Considerable progress has been made in treating symptoms and managing medical crises. However, families often have difficulty understanding the complex drug regimes required. Patients with heart failure seem less informed about their diagnosis and prognosis and give little evidence of receiving the education from professionals that many cancer patients do (Selman, et al., 2007). Many professionals suggest they are reluctant to raise the issue of prognosis, in part because it has become increasingly difficult to predict when death is imminent with this disease. Yet even when the symptom burden of patients is similar to or in some instances greater than that of patients dying from cancer, patients with severe heart failure are rarely referred to specialist palliative care teams (Goodlin, et al., 2005; Horne & Payne, 2004). A survey of hospice medical directors about providing care to patients with severe heart failure revealed a lack of knowledge and expertise in treating this disease, insufficient identification of palliative interventions, and frequent underdevelopment of relevant standards, training, policies, procedures, and standardized care plans for management of heart failure patients (Goodlin et al., 2005). As a consequence, families report poor coordination and fragmentation of care, the lack of a single health professional to relate to, and less satisfaction with information and support available to them than families of cancer patients report. The case study included in this module exemplifies these gaps in care in advanced cardiac conditions and their effect on the patient’s experience of illness. This case also shows the occurrence of multiple crises with levels of functioning that gradually worsen over time.
Dementia. Dementia has been estimated to affect approximately 6% to 10% of individuals aged 65 and older. The prevalence increases with age, rising from 1% to 2% among those aged 65 to 74 to 30% or more of those aged 85 or older. The median length of survival from diagnosis to death is 8 years (Hofman et al., 1991).
As depicted in the third chart in Figure 4, there is often a slow progressive deterioration in the individual’s ability and awareness (Hendrie, 1998). Common symptoms of dementia include mental confusion, urinary incontinence, low mood, constipation, and loss of appetite. The physical and emotional burden on family members is well documented, as is their grief as they slowly lose the person they knew (Diwan, Hougham, & Sachs, 2004). Patients’ inability to communicate their wishes as the disease progresses raises many ethical issues and the need for a surrogate decision-maker. Making decisions for another individual about the use of antibiotics in the treatment of pneumonia at the end of life and the use of feeding tubes for hydration and nutrition is difficult for family members. Other questions arise with many life threatening conditions, but are particularly challenging when the individual is cognitively impaired. How and when should life-prolonging technology be used? When should its use end, and who should make that decision? How are these difficult decisions now being made, and how do families view the experience (Schulz & Martire, 2004)?
Palliative and Hospice approaches to care for the dying have had different historical roots and reimbursement conditions in the U.S. that have shaped their models of service delivery. Learning about these roots and conditions will enable students to understand the modern practice differences and the role of social work in the model’s development. Recently, practice reflects a movement toward greater integration in the following ways (Byock, 2000; Ferrell et al., 2007):
The philosophical origins of palliative care as a service delivery approach came from the hospice movement, which began in the 1960s in the U.K. and spread to the U.S. in the 1970s. Dame Cicely Saunders who held degrees in medical social work, medicine, and nursing is recognized as the founder of this movement because she established the first research and teaching hospice, St. Christopher’s Hospice, in London in 1967 (Monroe, Hansford, Payne, & Sykes, 2007-2008). She was inspired to provide more holistic and humane care of the dying by her social work experiences and observations of the suffering of injured soldiers and other terminally ill people during WWII and its aftermath. She challenged professionals to communicate to patients: “You matter because you are you, and you matter to the last moment of your life”(Monroe et al., 2007-2008, p. 64).
Indeed social workers are the largest mental health discipline providing psychosocial services in both hospice and palliative care. Conner (2007-2008) reports, “Social workers have been providing the bulk of psychosocial services in hospice programs. This is due to the fact that social work is a required core hospice service and that social workers, if adequately trained in mental health, can also meet the hospice’s required need for counseling services…there is growing concern that hospices and palliative care programs are not devoting adequate resources to psychosocial services, which are thought to be one of the defining characteristics of the field” (p. 97).
While hospice in England was provided primarily in an institution, care was initially provided in the home in the U.S., due to limited resources. Also home care reflected the U.S. hospice community’s criticism of futile and often painful curative treatment given in hospitals at the end of life. Hospice providers aimed to promote acceptance of what is now called “A Natural Death,” but one in which pain and uncomfortable symptoms are well controlled. Table 3 presents the varied environments in which hospices deliver services today and the practice issues for social work shaped by the environment of the setting.
Hospice programs flourished after the development of the Medicare benefit in 1982. They have become well established in the health care system. Today more than 4200 are licensed, an increase of almost 1000 in just the past 2 years. In 2005, the National Hospice and Palliative Care Organization (NHPCO) reported that 1.2 million people received hospice care in the United States. They estimated that at least one of every three deaths, of all causes, in the United States took place under hospice care. In part this reflects the growing need of services for an expanding older population as well as a growing acceptance of the palliative care philosophy in the U.S. health care system at the advanced stages of disease (Connor, 2007-2008).
During the past decade there has been a strong national movement to permeate the larger health care system with the palliative philosophy throughout the course of treatment rather than only when death is imminent. Indeed some specialists believe they should de-couple palliative and end-of-life care in order to engage referrals. Many patients do not want to confront death until it is imminent. Physicians have established palliative medicine as a subspecialty within medicine. Since 2000, Palliative Care Programs have increased from 632 to over 1300 according to the Center to Advance Palliative Care (Morrison et al., 2005). More recently, these programs have been welcomed, indeed “embraced,” as an alternative within hospitals to intensive care of terminally ill patients (Kuehn, 2007). These programs were developed to address the vast unmet needs among aging and dying patients, but also to address concerns about the cost of care for a growing aging population (Morrison et al., 2008). (See discussion of costs of hospice and palliative approaches in the policy section.)
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