What Is Hospice?

Case Study

Mrs. R is a 68-year-old woman admitted to the hospital for an exploratory laparotomy. She has been treated for ovarian cancer and has been experiencing symptoms consistent with intermittent bowel obstruction, but her overall performance status has been good. Her severe abdominal pain has been under good control with transdermal fentanyl patches. She recently switched from oral controlled-release morphine because of inconsistent absorption, nausea, and vomiting. She has a supportive family, with a healthy husband at home and a daughter living nearby. During laparotomy, it was determined that she had widespread metastatic disease and no surgical resection was attempted. She remained on transdermal fentanyl during the perioperative period, with intravenous patient-controlled hydromorphone for acute postoperative pain management. Discharge to home is anticipated on postoperative day 5, at which time the patient states she cannot afford to fill the prescription for fentanyl patches and she is worried about how she is going to manage at home. What can you do to be most helpful to Mrs. R?

Defining Hospice and Palliative Care

Hospice is comprehensive and coordinated palliative care for patients with limited life expectancy, provided both at home and in institutional settings. Hospice care is based on a "biopsychosocial" model rather than a "disease" model of care. The essential philosophy of hospice care is the focus on comfort, dignity, and personal growth at life's end. This encompasses biomedical, psychosocial, and spiritual aspects of the dying experience, emphasizing quality of life and healing or strengthening interpersonal relationships rather than prolonging the dying process at any and all cost. Hospice care also supports the well being of those (usually family members) in caregiving roles and provides bereavement care for survivors, both during the dying process and after the death occurs.

In the United States, palliative care is a related and developing field that has evolved out of the collective hospice experience.^[1,2] Palliative care is a broader application of hospice concepts, applicable to patients with a significant burden of illness, but much earlier in the disease trajectory. Palliative care should be integrated with curative or life-prolonging treatments, while hospice is explicitly noncurative.

The intent of palliative care is to prevent and relieve suffering through early identification and careful assessment and treatment of pain and other physical, psychosocial, and spiritual problems. Anticipatory planning is an important component of palliative care. Like hospice, palliative care integrates the psychological and spiritual aspects of patient care. In certain settings, such as hospitals, palliative care services employ a team approach to address the needs of patients and their families. In all healthcare delivery settings, for patients with burdensome or advanced illnesses, palliative care should be provided in one form or another, by the treating physician, a nurse specialist, or a team, depending upon each patient's needs and circumstances.

In the United States, most hospice care is provided in the home, but it can be rendered in any environment, including inpatient settings, long-term care facilities (nursing homes, assisted living centers), or anywhere else the patient lives. There are currently over 3000 hospice programs operating within the United States. Most are small programs with a census of less than 30 patients whose budgets are bolstered by charitable giving.^[3]

Most hospice care is reimbursed under the current Medicare Hospice Benefit (MHB), and most private insurers cover hospice care in their plans as well. In more recent times, there has been an increase in larger multisite programs to create more efficient operations. This can allow more effective use of limited resources to reach far more patients from all social spheres, with the ability to provide more and more advanced palliative services for symptom control and improving quality of life. The therapeutic intent is a blending of the humanistic patient- and family-centered philosophy that characterizes traditional hospice with the myriad innovations that have been derived through scientific advances of modern medicine.

There are several barriers to access of hospice care, including cultural divisions, uncertainty regarding regulations surrounding the MHB, and fears or ignorance about the meaning of hospice. Hospice care, coming at a time of life when emotions are highest, requires a delicate touch, and it is important that clinicians be able to enumerate the advantages clearly. Clinicians can learn to emphasize that, coupled with sophisticated management systems and certain financial benefits, patients who elect modern-day hospice care may have significant improvements in the quality of their end-of-life experience.

History of Hospice

The roots of hospice can be traced to early Christendom, where hospices served as places of respite for weary travelers. Through the Middle Ages, hospices proliferated and expanded their role to provide care for the sick and dying. In 19th century Ireland and France, hospices were established specifically to provide terminal care. Dame Cicely Saunders (nurse, social worker, and physician) started writing about a new concept of hospice shortly after World War II, and came to Yale University to speak about it in 1963. She opened up the first residential hospice, St. Christopher's, in a London suburb in 1967.

Hospice care in the United States began in the 1970s with small grassroots programs and demonstration projects, followed by rapid proliferation in the 1980s, largely as a result of legislation that created a defined MHB. The last decade has seen continued modernization and rapid expansion of hospice services, concurrent with growing acceptance of palliative medicine, as a credible and much-needed specialty and domain of the healthcare continuum to improve advanced illness outcomes and end-of-life care. During this time, hospice has broadened its scope from a service almost entirely dedicated to cancer patients to a service dedicated to the care of all patients with life-limiting illnesses such as end-stage cardiac or pulmonary disease, advanced dementia, and other diseases.