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Among the therapeutic modalities available to the oncology team today are two resources that often appear to be similar: palliative care and hospice. The distinction can be a difficult one, especially because definitions of each may vary by country and the medical institution in which they are practiced.
HOSPICE CARE
Hospice is not a place but a type of care. Although the term hospice refers back to the 11th century, when a hospice was a refuge for terminally ill people during the time of the Crusades, the foundation of modern hospice care began in London in the middle of the 20th century.1 Hospice traveled to the United States, where the philosophy and principles were introduced in the 1970s. The concept gained acceptance and Medicare began covering its costs in 1982.
The National Hospice and Palliative Care Organization provides the following definition of hospice care:
The focus of hospice relies on the belief that each of us has the right to die pain-free and with dignity, and that our loved ones will receive the necessary support to allow us to do so.
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- Hospice focuses on caring, not curing and, in most cases, care is provided in the person’s home.
- Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities.
- Hospice services are available to patients of any age, religion, race,or illness.
- Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.2
Writing in American Family Physician, Michelle T. Weckmann, MD, explains:
Hospice is built around the key concept that the dying patient has physical, psychological, social, and spiritual aspects of suffering. Hospice is a philosophy, not a specific place…. The core structure of hospice includes an interdisciplinary team that … provides access to a wide range of services to support the primary caregiver, who is responsible for the majority of the patient care.3
Since hospice in the United States is often provided to the patient in the home, the Medicare hospice benefit provides necessary equipment and personnel. In addition to professional staff, one of the foundations of hospice is the utilization of volunteers to provide comfort and support to the patient and family.
Gabrielle Goldberg, MD, is education director of The Lilian and Benjamin Hertzberg Palliative Care Institute and Assistant Professor, Department of Geriatrics and Palliative Medicine and Department of Internal Medicine at the Mount Sinai School of Medicine in New York City. She notes that the hospice Medicare benefit will assume payment for medications related to the underlying disease. Medicare will assume the cost of medications related to cancer, for example, including those that can ease the patient’s end of life.
PALLIATIVE CARE
A new field in medicine and nursing, palliative care provides for patients and families facing life-threatening illness. Palliative care is generally provided by a team of specialists, which may include physicians, nonphysician clinicians, social workers, chaplains, pharmacists, and nutritionists.
The American Board of Hospice and Palliative Medicine, sponsored and encouraged by the American Academy of Hospice and Palliative Medicine, was incorporated in May 1996 and held its first certifying examination later that year. The American Board of Medical Subspecialties (ABMS) recognized palliative care as a medical subspecialty in September 2006 with unprecedented support by 10 cosponsoring medical boards. The first board examination under ABMS was offered in 2008.
The field has grown rapidly. According to the Center to Advance Palliative Care, “Ten years ago there were almost no palliative care programs in America’s hospitals. Today, 53% of hospitals with 50 or more beds have a program. In the last 5 years alone, access to palliative care in our nation’s hospitals has more than doubled. Rapid growth is largely due to the increasing numbers and needs of Americans living with serious and chronic illnesses and the realities of the responsibilities carried by their families.”4
The 2006 American Hospital Association’s Annual Survey of Hospitals found the following:
- 632 hospitals provided a palliative care program in 2000.
- 1,240 hospitals currently provide palliative care programs.
- This is a 96% increase.
Palliative care is accessed at any point in an illness and is therefore different from hospice. Hospice always provides palliative care, but as noted earlier, hospice is targeted care for those patients who are no longer seeking curative therapy. The majority of palliative care in this country is provided on inpatient consultation service. The palliative care team works in conjunction with the primary physician and can offer assistance with treatment of pain and other symptoms, assistance with communication of bad news regarding diagnosis and prognosis, support for patients and families in medical decision-making and in navigating the complex medical system, and emotional and spiritual support.
As an example, New York’s Mount Sinai Hospital team sees patients from 17 to more than 100 years old. The team receives 1,200 new consultations a year and is often called in by oncologists to see patients with such symptoms as nausea and vomiting, whether from the cancer itself or its treatment. In addition, the palliative care team helps patients to complete advance directives, making sure that they have considered whom they want to serve as proxy decision-maker in the event that they become unable to communicate their wishes about their medical care. The team will help the patient speak to the proxy and the family about quality of life and about where and how the patient would like to be helped in order to optimize that quality of life.
Nurses are an integral part of any palliative care treatment. Since palliative care nursing is so complex, the specialty requires training in subjects such as social issues and psychology. In addition, palliative care nurses should have a thorough knowledge of medications used for pain, symptom control, and psychiatric conditions.5 The nurses work with the patient and bring information to the treating physician, but they also work quite independently. The End-of-Life Nursing Education Consortium (ELNEC) is a nationwide education program to improve palliative care. ELNEC provides training to undergraduate and graduate nursing faculty; staff development educators; specialty nurses in pediatrics, oncology, critical care, and geriatrics; continuing education providers; and other nurses who then educate nursing students and practicing nurses on palliative care. ELNEC reports that so far, more than 10,070 nurses and other health care professionals from the United States and 63 countries have received ELNEC training through their courses.6
By utilizing physical, social, psychological, and spiritual interventions, both hospice and palliative care practitioners prove that much can be done to improve the quality of life of seriously ill patients, whether their illnesses are transitory or terminal.7 ONA
Bette Kaplan is a medical writer in Tenafly, New Jersey.
References
1. Connor SR. Hospice: Practice, Pitfalls, and Promise. Washington, DC: Taylor & Francis; 1998.
2. Caring Connections. http://www.caringinfo.org/LivingWithAnIllness/Hospice.htm. Accessed March 9, 2010.
3. Weckmann MT. The role of the family physician in the referral and management of hospice patients. Am Fam Physician. 2008;77(6):807-812.
4. Center to Advance Palliative Care. America’s care of serious illness: a state-by-state report card on access to palliative care in our nation’s hospitals. Executive summary. http://www.capc.org/reportcard/summary. Accessed March 9, 2010.
5. Medscape. Palliative Care Resource Center. http://www.med scape.com/resource/hospice. Accessed March 9, 2010.
6. American Association of Colleges of Nursing. End-of-Life Nursing Education Consortium (ELNEC). http://www.aacn.nche.edu/ELNEC/factsheet.htm. Accessed March 9, 2010.
7. Get Palliative Care.org. http://www.getpalliativecare.org. Accessed March 9, 2010.
For additional information on palliative care and hospice care
American Academy of Hospice and Palliative Medicine, at www.aahpm.org
Caring Connections, at www.caringinfo.org/LivingWithAnIllness/Hospice.htm
Center to Advance Palliative Care, at www.capc.org
End-of-Life Nursing Education Consortium (ELNEC), at www.aacn.nche.edu/ELNEC
Get Palliative Care.org, at www.getpalliativecare.org
Hospice and Palliative Care Nurses Organization, at www.hpna.org
National Palliative Care Research Center, at www.npcrc.org
