The term “hospice” is probably more familiar to most people than “palliative care.” The concept of hospice care began in England in the late 1940’s, and was introduced in the U.S. in the 1960’s. Hospice care focuses on providing comfort rather than curative treatment for individuals who are experiencing a terminal illness. This type of care is provided near the end of life, and in 1978 a task force of the U.S. Department of Health, Education, and Welfare recognized the concept of hospice care as a feasible way of providing more humane care for the dying. 1986 marked the year when hospice became a permanent Medicare benefit, but it wasn’t until 2006 that the American Board of Medical Specialties recognized hospice as a distinct area of practice.
American society continues to harbor misconceptions about hospice services, including the idea that to enlist hospice services means that an individual is “giving up.” Instead, hospice services should be viewed as a change in the focus of treatment. In many situations, aggressive medical treatment can be successful and the time commitment and side effects of the treatment are secondary to the cure of an acute illness or control of a chronic condition. In contrast, hospice care acknowledges the presence of a disease which cannot be cured and seeks to control symptoms while avoiding time consuming medical appointments as well as unnecessary or unpleasant medical tests and procedures. Focusing on comfort and energy conservation allows an individual to participate meaningfully in his/her daily life and pursue activities which provide personal fulfillment as much as possible.
A common perception of both medical professionals and the general population is that hospice and palliative care are synonymous. In fact, they are two related but distinct types of service. Palliative care developed as an outgrowth of hospice when professionals began to recognize that people who are not at the end stage of life, but are experiencing the effects of chronic disease, could benefit from an individualized focus of care. Unlike hospice, people who receive palliative care may continue to pursue aggressive treatment for their disease; but similar to hospice, the treatment is personalized and designed to reduce the physical and emotional stress of illness. Palliative care can be provided at any time during the course of a disease. While hospice is always palliative care, not all palliative care is hospice.
So what does palliative care entail? According to Arlene Bobonich, MD and Kelly McCormack, DNP, CRCP of the palliative care department of Geisinger Holy Spirit Hospital; palliative care seeks to accomplish the following objectives:
- Assist the patient and family to better understand the disease and establish goals for care
- Align treatment with patient preferences
- Improve quality of life
- Manage symptoms which may be difficult to control
When is palliative care appropriate? Palliative care should be considered when there is a serious disease process such as (but not limited to) chronic obstructive pulmonary disease, congestive heart failure, or end-stage renal disease; which is complicated by other factors such as:
- A secondary health condition such as dementia or liver disease
- A decline in functional status (self-care and/or ambulation)
- Unacceptable levels of emotional distress
- Poorly controlled physical symptoms (pain, nausea, shortness of breath)
- More than one hospitalization for the same diagnosis within 30 days
- Prolonged hospital stay (greater than 5 days) with little progress
- Prolonged stay in a hospital intensive care unit with little progress
How does one obtain palliative care? Although palliative care programs outside of hospice began to emerge in the U.S. in the mid 1980’s, progress has been slow. The process for professional certification, lower salaries than other medical specialties, lack of understanding about the practice of palliative care, and the payment structure of our health care system have hindered its growth; despite the fact that ongoing research is showing that this type of care is desired by patients and provides tangible benefits. Most palliative care programs in existence today are hospital-based, although community programs are beginning to develop. UPMC Pinnacle offers both inpatient and outpatient palliative care services, with the outpatient services being provided at the Bloom Outpatient Center in Harrisburg. Geisinger Holy Spirit has an established inpatient palliative care program and is currently exploring the development of an outpatient program. Several local hospices also offer various levels of palliative care services for individuals who may not qualify for hospice. Be aware that these services may not be covered by insurance.
Multiple factors such as diagnosis, general health status, the availability of personal support systems, and individual preferences impact decisions about how to approach health care at specific times in one’s life. Palliative care is designed to provide holistic support to people with life-limiting conditions, and has the capability of improving quality of life while promoting more effective utilization of health care resources.
Karen Kaslow, RN, BSN