The US hospice movement: redressing modern medicine

Emily Bethea
University of Chicago, Illinois, United States (Spring 2011)

 

Hospices de Beaune, founded in 1443 in Beaune, France by Nicolas Rolin - Photography by Thierry

Hospices de Beaune
Founded in 1443 in Beaune, France by Nicolas Rolin,
chancellor of Burgundy, as a hospital for the poor and needy.
Photography by Thierry

Unlike its modern concept, hospice began as “a house of rest and entertainment” not only “for pilgrims, travelers, or strangers” but also “for the destitute or sick.”1 Like the images conjured by these words, the first hospices are believed to have originated in the 11th century when the Crusaders permitted the incurably ill into centers dedicated for treatment of the sick. Years later in the early 1300s, the order of the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes, with the purpose of providing refuge for travelers and care for the ill and dying.2 For the next few centuries the hospice practice languished until its revival in 17th century France by the Daughters of Charity of Saint Vincent de Paul. In 1902 the Irish Sisters of Charity built upon this evolving concept with the founding of St. Joseph’s Hospice in London.2 It was here in the 1950s that Cicely Saunders, who later founded St. Christopher’s Hospice, developed many of the foundational principles of modern hospice care.

Working first as a nurse and later as a medical social worker before returning to school to complete her medical degree, Saunders observed the frequent lack of support and indifferent care provided for those approaching death. When she finally founded St. Christopher’s Hospice in London in 1967, she emphasized that “hospice” was not only a type of institution, but, more importantly, a concept of care. She educated those around her on the spectrum of medical care, indicating the relative importance of psychological support and rehabilitation to various stages of acute, chronic, and terminal illness.2 In a system that historically created silence, the hospice environment described by Saunders fostered open and honest conversation among the sick, their loved ones, and the medical care team, creating an environment of comfort and acceptance as patients approached death. Her new vision had a strong impact on Florence Wald, the former Dean of the Yale School of Nursing. Wald commented, “When I saw that she had forged a way to handle some of the problems we were dealing with—inclusion of families in the decision process and emphasizing patient choice—I got hooked, and by 1965 I had decided to get into hospice care.”3

In 1974, along with an interdisciplinary team of doctors, nurses, and clergy, Florence Wald helped to open Connecticut Hospice, the first hospice in the United States. Soon thereafter, multiple hospice programs began taking shape throughout the country.4 With St. Christopher’s as the model and Connecticut Hospice as the new American innovator, these newly-developing US hospices established basic standards for care. In North America hospice evolved to focus on care centered in the home, with inpatient facilities as back-up. The US programs also began distinguishing themselves from Britain’s by placing “a greater emphasis on use of volunteers and more focus on psychological preparation for death.”2

Navigating the insurance reimbursement system presented one of the biggest challenges to the evolution of the US hospice system. In the early 1970s, few insurance companies covered these services, and these select few still required that the patient be homebound for reimbursement of care. Compounding the problem, the payment structure devalued the importance of psychosocial treatment. As a result, services for family members and caregivers, such as therapy sessions and bereavement counseling, were not covered under any provider.5

Over the next decade the hospice movement strove to reach out to the many Americans without end-of-life guidance and support. When faced with insufficient staff for the inpatient units and home care programs, the movement devised successful outreach efforts to promote the hospice vision and train volunteers. Likewise, as services required additional funding to meet demand, leaders of the hospice movement undertook successful initiatives to increase public awareness so that public monies could be liberated to sustain programs. The addition of hospice services to Medicare coverage on September 3, 1982 represents one of hospice movement’s largest victories to date. Not only did this development allow for increasing numbers of patients to benefit from services, this change prompted insurance companies to reimburse end-of-life treatments as part of their plans.

Just 10 days after the Medicare reimbursement authorization, US President Ronald Reagan, by request of the Senate, proclaimed the week of November 7-14 to be National Hospice Week. Coinciding with the newly recognized Medicare coverage, this announcement saw the most rapid expansion of the hospice movement yet. Over the next 20 years the hospice system expanded from 30 to 40 programs, to over 2,000 hospice programs in 1995, and an excess of 4,000 in 2008. The monetary support for this rapidly expanding industry followed suit. The cumulative budget for hospice programs nationwide increased from 10 million in the late 1970s, to 2.8 billion dollars in 1995, and 10 billion in 2008.6 Still, this country’s need for hospice resources continues to grow. As of 2007, hospice sites are expanding at a national rate of about 3.5 percent per year.7 In 2007, 1.4 million people in the United States utilized hospice, reaching around a third of dying Americans.

The hospice movement has grown from the ideals of a few dedicated believers to become a multi-billion dollar industry. While the early battles of hospice programs related to lack of consistent funding or resources, new challenges have arisen in the 21st century. In recent years for-profit care has come to constitute “the fastest-growing slice” of the hospice market.8 The monetary foothold of for-profit hospice companies influenced changes in hospice financial structure and reimbursement policies.8

On a positive note, funding for hospice continues to increase; however recent polling has revealed that a large portion of the population still lacks desirable end-of-life care. A 2004 interactive survey suggested that prior to death 40% of patients experience severe pain, and 25% report moderate to severe anxiety or depression.9Cumulative data also demonstrated that while 80% of Americans believe people with terminal illness would like to receive end-of-life care to help address symptoms such as pain, depression and anxiety, less than 25% of the dying population are actually enrolled in hospice.10 And while, in recent years, increasing numbers of patients have been enrolled in hospice care, the caregiver time spent per patient has been declining. The median length of stay in hospice also appears to be diminishing, from 90 days in 1987 to 20 days in 2000.11 The majority of patients are likely being enrolled very close to their death when it is difficult to take full advantage of the services provided.

We must find ways to meet these new challenges as our hospice program continues to evolve. Most importantly, as Edward Livingston Trudeau, an American physician who established the famous Adirondack Cottage Sanitarium for treatment of tuberculosis, emphasized, “it is our utmost duty to cure sometimes, to relieve often, and to comfort always.” Looking back on the development of hospice over the past 50 years, it is vital to remember the original goal as we move forward. Revisiting a concept as old as medicine itself, hospice proponents sought to redress a balance in modern medicine by effectively comforting the dying and their loved ones. Let us not forget their lessons.

 

Cover illustration: Hospices de Beaune, Grande salle des pôvres, by Christophe Finot

 

References

  1. Oxford English dictionary. Hospice.
  2. Connor Stephen R. Hospice: practice, pitfalls, and promise. Washington D.C.: Taylor & Francis; 1998.
  3. Twycross  R. Hospice care – redressing the balance in medicine. JRSM. 1980; 73: 475-481.
  4. Craven J, Wald FS. Hospice care for dying patients. Am J Nurs. 1975; 75: 1816-1822.
  5. Markel Sinon. The hospice concept.CA. 1978; 28; 225-237.
  6. Cartwright A, Hockey L, Anderson J. Life before death. London: Routledge and Kegan Paul; 1973.
  7. Plocher D, Metzger P. The case manager’s training manual. Jones & Bartlett Publishers.
  8. Verderber S, Refuerzo B. Innovations in hospice architecture. Washington D.C.: Taylor & Francis; 2006.
  9. Davis H. Growth in hospice care redefines its role in medicine. Buffalo News. 2009 Feb 28 [cited 2009 Mar 21].
  10. Harris Interactive Poll prepared for the National Hospice and Palliative Care Organization. A study about end of life care. 2004.
  11. Medicare: More beneficiaries use hospice but for fewer days of care. GAOHEHS. 00-182. US Govt Acct Office (GAO); 2000.

 


 

EMILY BETHEA was born in Madison, Wisconsin and completed her undergraduate degree in Biochemistry from the University of Wisconsin in 2007. She continued her graduate education at the University of Chicago Pritzker School of Medicine and is scheduled to receive her MD in June of 2011. She is hoping to pursue her long-term career goal—aiding in the development and improvement of preventative care in medicine—as she continues into her Internal Medicine residency at Brigham and Women’s Hospital in Boston, MA. Emily plans to continue her involvement in hospice and pursue a fellowship in palliative care in the future. She believes this will enable her to better understand and treat patients with complicated and terminal illnesses, in addition to being able to educate those around her about end-of-life care.

 

Highlighted in Frontispiece Spring 2011 – Volume 3, Issue 2