Electronic Highways
Compassionate care: hands, hearts
and hospice
It is likely that our remote ancestors used whatever resources they had to care for their dying companions, as evidenced by items found in excavated graves and early literary accounts. Even some animals, such as elephants, show compassion toward their brethren and exhibit grief when they die (when Buki, the elephant matriarch at the Buffalo Zoo, died in September 2009, her companions, Surapa and Jothi, were given a wake to mourn their friend). The practice of caring compassionately for the dying has, relatively recently, been formalized into a philosophy and movement known as hospice.
The term “hospice” (derived from the Latin hospes—the same linguistic root as “hospitality”) has been in use since the 11th century when it referred to a place of shelter and rest for weary or ill travelers on a long journey. Since then, it has evolved slowly into a philosophy of humane and compassionate care of the terminally ill. As early as 1940, authors were writing books about the topic, such as The care of the aged, the dying and the dead / by Alfred Worcester (2nd ed., Law Library: General Collection RC48 .W6 1940).
Dame Cicely Saunders, considered the founder of the modern hospice movement, laid the groundwork for the philosophy of administering to dying patients and their families’ physical, emotional, spiritual and mental needs. Initially trained as a social worker and deeply religious, her passion for helping the dying led her to medical school. While working with the terminally ill, she discovered that administering pain medications orally whenever possible could help keep dying patients alert but free of pain. Her work set the standard for hospice care all over the world and led to her to found St. Christopher’s Hospice in 1967 as the first hospice to link expert pain and symptom control, compassionate care, education and clinical research.
The concept of palliative care for other severely ill patients and care at home has evolved along with the hospice movement, beginning in 1969 when Saunders pioneered the first home care team to bring her principles to the community. In February 2010, the Cicely Saunders Institute of Palliative Care, the world’s first purpose-built institute for palliative care, opened in London, five years after Saunders’ death at the age of 87.
Now accepted as good medical practice, articles are published regularly on various aspects of the topic, particularly in the nursing literature as daily care of the terminally ill is frequently administered by those in the nursing profession. A search in CINAHL Plus using just the term “hospice” produces more than 9,800 articles published since 1955. The UB Libraries e-journals A-Z list includes 17 journals devoted solely to the topics of hospice and palliative care, including the American Journal of Hospice & Palliative Medicine, the Journal of Hospice and Palliative Nursing, and the International Journal of Palliative Nursing.
Florence S. Wald, past dean of the Yale School of Nursing, who was inspired by Saunders at a lecture delivered at Yale in 1963, founded the first U.S. hospice in Branford, Conn., in 1974—Connecticut Hospice, an institution dedicated to helping terminally ill patients and their families. Elisabeth Kübler-Ross, known for her delineation of the stages of grief, also is considered a hospice pioneer. A video documentary produced in 2005, “Pioneers of Hospice Changing the Face of Dying,” discusses how end-of-life care has been dramatically transformed through interviews with Cicely Saunders, Florence Wald, Elisabeth Kübler-Ross and Balfour Mount, a Canadian physician who trained at St. Christopher’s and is considered the founder of palliative care in the hospital setting. The program is available in the HSL Digital Media Center.
There are a number of national foundations that work to provide leadership and promote the philosophy of hospice as an integral part of the health care system, including care at home rather than in an institution. They include the American Hospice Foundation, the Hospice Foundation of America and the National Hospital and Palliative Care Organization, which also has a nice historical timeline. Many communities also have local resources; in Western New York, visit Hospice Buffalo for information and support.
Health consumers also can find answers to general questions about hospice and palliative care, and locate hospice facilities. HospiceDirectory.org helps patients and families locate a hospice in their geographic area. Medline Plus, the consumer health component of the National Library of Medicine (NLM), offers a support page on Hospice Care with links to basic information, videos, clinical trials, latest research news and help with financial issues.
A search in the new Library Catalog using “hospice” in all fields produces 367 titles, which can be limited to location, author or format. The Health Sciences Library owns more than 100 books on the topic, many classified under WX 28.61 (browsers welcome on our third floor). Those on the North Campus may request books from HSL via ILLIAD. HSL’s History of Health Sciences collection also offers a book on the local history of hospice: “The Early History of Hospice Buffalo,” edited by Abel K. Fink and Donald P. Shedd (Buffalo, N.Y.: Center for Hospice & Palliative Care, c2003) HSL History WX 28.62 AN6 H828E 2003 (does not circulate but can be used on site).
A more intimate history can be read in David Clark’s narrative constructed from 700 selected letters written by Cicely Saunders. His book, “Cicely Saunders—Founder of the Hospice Movement: Selected Letters 1959-1999” (Oxford University Press, 2002), is reviewed in the Journal of the Royal Society of Medicine.
And, finally, it’s not just for humans. As reported on the American Veterinary Medical Association’s (AVMA) website, a pet hospice movement also is gaining momentum. Modeled after human hospice, pet hospice is standardizing the same emphasis on managing the animal patient’s emotional, physical and mental needs while preparing their human family for a dignified demise. The first pet hospice symposium was convened in 2008 (the Third International Symposium on Veterinary Hospice Care will be held in August 2011). The AVMA issued their Guidelines for Veterinary Hospice Care in 2007 and the first hospice organization devoted to pet palliative care principles, the International Association for Animal Hospice and Palliative Care, was formed in 2009. At the AVMA convention in August 2010, a veterinarian who has practiced the hospice philosophy for 25 years on her own shared the protocols she has developed for pet hospice.
Mirroring the long evolution of the human hospice movement, pet hospice has been around for at least two decades and has struggled to take hold due to a lack of knowledge on the part of both animal owners and veterinary practices. However, local pet hospice support is slowly being developed, such as the CSU Pet Hospice Program at the Colorado State University Argus Institute. The nation’s premier adoption website, Petfinder, now includes a section in their learning center entitled Pet Hospice—Caring Until the End, and the Veterinary Medicine section at About.com has a page on What is pet hospice? Learn about end-of-life issues for our pets and surviving pet loss grief.
With all these resources, families can be well informed and prepared to ask for the care and compassion they need when facing the loss of a loved one, whether human or animal.
—Pamela Rose, Web Services & Library Promotions Coordinator, Health Sciences Libraries
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