Hospice Care — End of Life Care that You Need to Know
Hospice is a philosophy of caring for dying patients and their families while emphasizing quality of life. Care is provided by an interdisciplinary team to meet the patient’s and family’s needs throughout the dying process as well as after death. Bereavement care is a key component of hospice, setting it apart from other forms of institutional care provided to dying persons.
All hospices share certain characteristics that set them apart from other forms of health care for terminally ill persons: (1) the dying person and family are the unit of care, (2) the interdisciplinary team serves both the dying person and the family, (3) care focuses on the physical, psychosocial, socioeconomic, and spiritual aspects of dying, (4) services are available on a 24 hour a day, 7 days a week basis, (5) inpatient and home care services are available, and (6) bereavement counseling and support (both prior to and after the individual’s death) are available to the dying person and/or the family. Many, if not all, of these issues are reflected in dying persons’ perceptions of what is important to them at the end of life. Many hospices are dealing with the financial realities of caring for persons whose resources are limited, and are finding themselves thrust into debates about physician-assisted suicide, euthanasia, and end-of-life care.
Hospice is a philosophy of care for people who have terminal illnesses as well as for their families, emphasizing the quality over the quantity of life. Via the active involvement of an interdisciplinary team, a coordinated, individualized plan of care is developed for each patient-family unit. The focus of such care is on pain management and symptom control in the context of maintaining quality of life for the dying patient and his or her family. Death in the hospital (or in the nursing home) is often depersonalized and hidden from public view, in contrast to the deaths of persons in hospice, which are more real, human, and meaningful. Rather than viewed as the end of life, deaths in hospice philosophy are better thought of as ‘spiritual transformations’ from this life to the next. This redefined notion of death in hospice is predicated on the basis of the fact that death need not be accompanied by suffering, i.e., that such care is palliative, and that the patient’s and family’s wishes will be identified and honored. In effect, death and dying in hospice is a natural event, in contrast to dying in an institution. While hospital care has been characterized as ‘event oriented’ (focused on the prevention of the event of death), hospice care is ‘process oriented’ – dying is its focus.
The many problems linked to institutional dying are being addressed by societal and professional efforts to humanize dying by defining the rights of dying persons and by making recommendations about how end-of-life care might be improved. Such efforts were stimulated by the failure of project SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment), which attempted to enhance the quality of life for dying patients by improving the communication skills of health-care professionals (i.e., physicians).
In North America, five models of hospice care exist: (1) home-based care, often provided by community-based professionals and volunteers (90% of hospice care is provided in patients’ homes), (2) home-based care provided by home health-care agencies or Visiting Nurse Associations (VNA), (3) free-standing, full- service, autonomous hospice facilities, (4) separate hospital-based palliative (pain-reducing) care units, and (5) hospital-based sub acute units, emphasizing continuum of care. While many do not differentiate hospice care and palliative care, a distinction between the two is increasingly more commonplace, wherein the latter is typically broader than the former.
Some hospices have begun to explore the concept of adult hospice day care, and moreover, pediatric hospice programs are also becoming more common. Approximately half of all hospices are hospital based, while the balance are operated by home health-care agencies. Most (nearly 80%) are non-profit in nature, while approximately 15% are for-profit. A third are free-standing facilities. Perhaps reflecting the impact of the hospice philosophy or the dissatisfaction with institutionalized care, nursing homes and assisted-living communities are now providing hospice care, underscoring the continuum of care provided to persons who at one time had been in better health. While most hospice patients have cancer (over half of persons who die of cancer receive hospice care), persons being cared for by hospice also die of AIDS, end-stage heart, lung, or renal disease, dementia (e.g., Alzheimer’s disease), and cardiovascular illness. While many such hospice patients are older, hospices care for persons of all ages. Some have greater degrees of community support than do others, and while some still operate on a not-for-profit basis, others that are for-profit in nature are often owned by larger corporations. Approximately 25% of all persons who die will have received hospice care, and the vast majority of hospice patients die at home. The average length of time persons receive hospice care is approximately 50 days.
Regardless of the model of hospice care, all hospices share certain characteristics that set them apart from other forms of health care: (1) the dying person and family are the unit of care, (2) the interdisciplinary team serves both the dying person and the family, (3) care focuses on both the physical and psychosocial aspects of dying, (4) services are available on a 24 hour a day, 7 days a week basis, (5) inpatient and home care services are available, and (6) bereavement counseling and support (both prior to and after the individual’s death) are available to the dying person and/or the family .Many, if not all of these issues, are reflected in dying persons’ perceptions of what is important to them at the end of life.
The essential one-on-one aspect of the hospice care philosophy has historically stood in contrast to the cure orientation of conventional hospital oncology care or the maintenance mentality of the nursing home. Hospice patients are less likely to receive intensive medical interventions such as chemotherapy or surgery as well as diagnostic tests (blood tests, X-rays) in the weeks prior to death than those in conventional hospital oncology units. Moreover, while analgesics are more likely to be regularly pre-scribed for pain on a fixed schedule in conventional health care, pain medication is prescribed on an as-needed basis in hospice.