Examining the Evolution of Hospice and Palliative Care
November is National Hospice and Palliative Care month. When geriatric medicine started becoming mainstream in modern American medicine in the 1970s and 1980s, many geriatric programs resisted including anything that might take attention away from their focus on caring for elders or interfere with recruitment of a new generation of trainees. Despite the existence of clinical programs that were already in place and focused on the care of individuals with chronic illness, regardless of their age, and programs that existed to provide care and comfort for the terminally ill, divisions of geriatric medicine for the most part were relatively late to embrace the palliative care and hospice movement as part of their domain. Although age is not a determinant of entry into either hospice or palliative care, more elders have illnesses that would benefit from these services. Cancer, dementia, and neurological disorders are a few examples of the many ailments in older individuals that hasten the end of life or require special consideration to relieve discomfort.
Confusion still exists as to what constitutes hospice versus palliative care. Hospice is a type of care and a philosophy of care that focuses on the palliation of a terminally ill patient’s symptoms, including the physical, emotional, spiritual, and social aspects. Palliative care is specialized medical care for people with serious illness and is focused on providing patients with relief from the symptoms, pain, and stress that accompany the illness, regardless of the prognosis. The goal is simply to improve the quality of life for the patient and his or her family. While hospice programs by necessity incorporate palliative care, not all palliative care programs incorporate hospice.
Hospice can be traced back to the 11th century and has been linked to the word “hospitality” for the sick, wounded, or dying. The first hospices were believed to originate when the Crusaders attempted to “treat” the incurably ill. In the 14th century, the Knights Hospitallers of Saint John of Jerusalem opened the first hospice on the island of Rhodes; it was intended to provide refuge for the ill and dying. In 17th century France, the Daughters of Charity of Saint Vincent de Paul were active in this area, and in the 19th century, articles in The Lancet and British Medical Journal were published advocating programs for the terminally ill poor so that they too could receive proper care at the end of life. In 1892, 35 beds were made available in London to care for patients dying of tuberculosis, and by 1905, there were five hospices established in London. St. Rose’s Hospice by the Servants for Relief of Incurable Cancer was established in 1899 in New York City and then expanded to six other cities.
Perhaps the most notable individual in the development of the hospice movement was Dame Cicely Saunders, a British registered nurse who pursued a career in medical social work. After receiving her medical degree in 1957, she worked at St. Joseph’s Hospice in London. She emphasized the need to focus on the patient rather than the disease and introduced the notion of “total pain,” which included psychological, spiritual, and physical domains. She experimented with a variety of pain regimens and toured the United States starting in 1963. In 1967, Saunders opened St. Christopher’s Hospital in England. Florence Wald, then dean of the Yale School of Nursing and one of Saunders’ protégés, brought back many of the principles of modern hospice care to the United States and established Hospice, Inc, in 1971, which was the first hospice program in the United States. In 1984, Josefina B. Magna, MD, organized the International Hospice Institute, followed by the Academy of Hospice Physicians in 1988, which eventually evolved into the American Academy of Hospice and Palliative Medicine in 1993. By 1995, hospice care had become a $2.8 billion industry in the United States, with $1.9 billion from Medicare alone.
In 2008, approximately one million individuals and their families received hospice services in the United States. Hospice is the only Medicare benefit that includes pharmaceuticals, medical equipment, 24-hour access to care 7 days a week, and support for families following death of their loved one. Hospice care is also covered by Medicaid and most private insurance plans. The majority of hospice care is provided at home, but it is also available in home-like hospice residences, nursing homes, assisted-living facilities, veterans’ facilities, hospitals, and even prisons.
The first US hospital-based palliative care programs began in the late 1980s at the Cleveland Clinic and the Medical College of Wisconsin. Today, hospital palliative care programs care for nonterminal patients and hospice patients. As of 2009, there were an estimated 10,000 programs internationally devoted to providing palliative care as their main mission, many also providing hospice care. A 2010 study published in the New England Journal of Medicine demonstrated that patients with metastatic lung cancer receiving early palliative care were less depressed and reported higher quality of life while surviving 2.7 months longer than those receiving conventional care.1
As mentioned previously, the need for hospice and palliative care is not unique to the geriatric population, though elderly persons are more likely to have a need for these programs due to age-prevalent illnesses. Separate fellowship programs currently exist to train physicians in geriatric medicine and hospice and palliative care medicine. In recent years, I have seen a growing number of geriatric medicine fellow trainees seek dual certification in these two separate but closely related specialties. I urge fellowship programs in these two areas to continue to work together to offer combined programs for those seeking dual qualifications. While age in itself is not a criterion for entry into a palliative or hospice program, the principles and goals remain the same regardless of one’s age at the time of need.
This issue of Clinical Geriatrics offers an article titled “Palliative Care in Advanced Cancer in Older Adults: Management of Pain, Fatigue, and Gastrointestinal Symptoms.” Many useful tips are included that may have relevance to the reader’s patients regardless of specific diagnoses. I hope you will enjoy reading this article and give thought to just how far the hospice and palliative care initiative has come in establishing itself as part of mainstream medicine. As the population continues to age, we will most certainly see many more individuals who will benefit from knowledgeable and caring professionals skilled in meeting the comprehensive and special needs of individuals at the end of life or those who require symptom relief to maintain a high quality of life for as long as possible. While hospice and palliative care are not unique to the geriatric patient, practitioners of geriatric medicine are in a unique position to lead in this area. I look forward to seeing additional studies on methods that may be more effective in older persons given their unique physiology and pharmacodynamics.
Dr. Gambert is Professor of Medicine and Associate Chair for Clinical Program Development, Co-Director, Division of Gerontology and Geriatric Medicine, Department of Medicine, University of Maryland School of Medicine; Director, Geriatric Medicine, University of Maryland Medical Center and R Adams Cowley Shock Trauma Center; and Professor of Medicine, Division of Gerontology and Geriatric Medicine, Johns Hopkins University School of Medicine, Baltimore, MD.
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- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010; 363(23):733-742.