Hospice Philosophy

GOAL: To introduce staff/volunteers to the overall philosophy of Hospice and the goal of hospice services at Home Health & Hospice Care.

OBJECTIVES: Upon completion of this session, the participant should be able to:

  • Discuss the concept of Hospice, its history and philosophy.
  • Verbalize her/his own personal reasons for becoming interested in the Hospice program.

“When medical science can no longer add more days to life,

hospice care can add more life to each day.”

History of Hospice
The concept of hospice originally comes from the Middle Ages, when hospices would provide refuge for travelers, many of whom were sick or dying. In the 20th century, hospice began to be re-envisioned in the framework of our modern and medically-advanced society as a way to compassionately care for people who were terminally ill. The modern hospice movement began in the 1960s and over the next couple of decades had four important pioneers contributing to its formation:

Cicely Saunders - Cicely Saunders began working as a Registered Nurse and Medical Social Worker in England. Through her early work, she formed a relationship with a young Polish refugee who was dying, and as a result of that experience began to develop thoughts about how dying people were cared for. She believed that pain and symptoms should be well-managed, that dying people should have an opportunity to process their fears and concerns, and that their families should be supported. To learn more about the experience of dying people, she began volunteering at St. Luke’s Home for the Dying Poor and decided simultaneously to go back to school and become a physician so that she could have a broader impact in her work. In 1964, she opened St. Christopher’s Hospice in London, which became the first modern hospice. St. Christopher’s served as a model for others around the world to learn from. Among many concepts that Saunders researched and taught is the concept of “total pain” – encompassing physical, emotional, spiritual, social and even financial aspects of a person’s suffering – and an integrated approach for treating the whole person.

Elisabeth Kubler-Ross – Dr. Elisabeth Kubler-Ross was a Swiss psychiatrist working in the United States in the 1960s. She began studying our societal relationship with death and dying. She set out to find dying people in a hospital in Chicago so that she could interview them and better understand their experience. As she went from floor to floor of the hospital, she was repeatedly told by staff that they had no one dying there. This launched her work documenting a broad societal disconnect with death and dying, and the subsequent inability to support dying people in their process. By truly listening to people who were dying, she tried to become a spokesperson for their experiences. She described the profound sense of isolation and solitude that the medical establishment was imposing and began to teach medical, nursing and theology students a new way to work with the dying. She was a catalyst worldwide to sensitizing people to the experience of dying. She is most well known for her groundbreaking book On Death and Dying, which was published in 1969, in which she identified and described five stages of grief: denial, anger, depression, bargaining and acceptance.

Florence Wald – Florence Wald was a Registered Nurse working as the Dean of Nursing at Yale Medical School when she became interested in the work that Dr. Cicely Saunders was doing in England. After spending some time with Saunders at St. Christopher’s, she came back to the United States to begin developing the concept of hospice here. She began from the nurse’s perspective, but then expanded to model the interdisciplinary approach we know in hospice today, bringing together nurses, doctors, social workers and bereavement professionals in her work with the dying. In 1971, she spearheaded the creation of Hospice, Inc, in Connecticut and began offering hospice services in homes, hospitals and nursing homes. In 1981, the first hospice house opened in the U.S., also in Connecticut.

Balfour Mount – Balfour Mount was a Canadian physician at the Royal Victoria Hospital in Montreal. He first read Kubler-Ross’ book On Death and Dying in the early 1970s and subsequently contacted Dr. Cicely Saunders. In 1973, he went to London to study the workings of St. Christopher’s Hospice. He came back inspired to implement care of the dying in Canada. He chose the term Palliative Care (“palliative” meaning “to improve the quality of”) and created the first Palliative Care Unit, integrating hospice care into a hospital setting. He helped to advance the concept of integrated, whole person care. He also taught extensively about quality of life and how to optimize it.

Modern Hospice Care
Here is some basic information about how hospice care works in the U.S. today:

Hospice is a philosophy of caring for those living with a life-threatening illness.
The hospice philosophy holds that end-of-life care should emphasize quality of life. Hospice neither prolongs life nor hastens death. The object is to treat the whole person, and not just the disease. The hospice philosophy focuses on patient/family-centered care that addresses the physical, spiritual, emotional, and practical needs of the patient. An interdisciplinary team of health care professionals works with the patient and family to design and implement a plan of care unique to the patient’s diagnosis and needs. In addition, hospice provides all medications, services, and equipment related to the terminal illness. Hospice care continues after the patient’s death by offering bereavement services for the family and loved ones for a minimum of 13 months. Learn more about hospice philosophy.

Hospice cares for people where they live.
Hospice services can be provided in a variety of environments, including homes, assisted living facilities, nursing homes, in-patient hospice facilities (such as our Community Hospice House), and hospitals. A recent Gallup poll found that nine out of 10 Americans, if faced with a terminal illness, would want to remain in their homes and receive the services that hospice provides. Currently, more than 80 percent of hospice care in the U.S. is provided in the home. In 2007, a total of more than 1.3 million dying Americans received care from hospice providers throughout the nation, and that number continues to rise. Learn more about hospice care in a nursing home environment.

Hospice is a Medicare benefit.
Congress originally established the Medicare Hospice Benefit in 1983 to ensure that all Medicare beneficiaries could access high-quality end-of-life care. For those who do not have access to Medicare, most states offer a Medicaid Hospice benefit. (New Hampshire became the 2nd to the last state in the nation to adopt a Medicaid Hospice benefit in July 2010.) Some hospice services are also reimbursed through private insurance. However, the vast majority, over 80% of patients, are Medicare beneficiaries. Learn more about the Medicare Hospice Benefit.

Hospice care is reimbursed on a per diem basis.
The Medicare reimbursement for hospice care is a set rate per day. There are four hospice rates, each linked to one of the four levels of hospice care: routine home care, general inpatient care, respite care, and continuous care. Learn more about hospice levels of care.

Hospice care is not limited to cancer patients.
Hospices now care for over half of all Americans who die from cancer and a growing number of patients with other chronic, life threatening illnesses, such as end-stage heart or lung disease, or dementia.

Palliative Care
Hospice is one example of Palliative Care, but people who are not yet eligible for hospice may access Palliative Care in other ways. Access the Palliative Medicine intro we viewed in class. If you know someone who is struggling with pain or symptom issues, or having difficulty making choices in relation to advanced illness management, suggest that they consider requesting a "palliative care consult". You can also share this article that helps to describe palliative care.

Additional Links

Recommended Library Resources

  • Video: Pioneers of Hospice: Changing the Face of Dying
  • Book: On Death and Dying by Elisabeth Kubler-Ross
  • Book: Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. available to read online