In her 1972 testimony before Congress, Dr. Elizabeth Kubler-Ross, author of the 1969 best-selling book On Death and Dying, stated that “We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality.” What she wanted was recognition on the part of the government that families could be helped more with home care and visiting nurses at the end of a loved one’s life than with institutional and aggressive medical care. Her testimony was a description of a philosophy of medical care known in England as hospice – a medieval word for the traveler’s hostels run by monks in the Alps.
The hospice movement begins in the USA
The hospice movement in the US had begun in the 1960s when the nursing school dean at Yale University invited Dame Cicely Saunders, the mother of the hospice movement in England, to teach for several months. Hospice growth was stuttering over the next few decades, with growing pains coming not only from wrangling over Congressional allocations of money, but also from the process of trying to identify the suitability of patients for hospice care. The requirement for a prediction that a patient entering hospice care would live less than 6 months proved extremely difficult, particularly when the patients did not have cancer.
Initially, hospice care was viewed negatively by many as either giving up on life or as a form of euthanasia or doctor-assisted suicide. It is none of these. Hospice is a shift away from attempting to cure medical problems and toward care of the whole patient by a multidisciplinary team with the patient and family at the center. From demonstration hospice projects launched in 1979 to the current care of more than 1.65 million Americans a year, the philosophy of caring rather than curing has proven itself good. In 2007, a paper in the Journal of Pain and Symptom Management reported that patients who had hospice care lived slightly longer than similarly ill patients who were treated conventionally. This surprising conclusion was followed two years later by a New England Journal of Medicine report that patients with non-small cell lung cancer may live longer with hospice care than with other therapies.
Shifting the focus
Hospice is medical care, but care with an aim different from the curative focus of conventional medical care. There is no fighting imagery used in hospice – no war on the cancer, no battle to be bravely fought. The care in hospice is palliative, emphasizing comfort and acceptance, with the meeting of physical needs in an environment as close to home as possible. The patient and family are the unit of care, and the team consists of the patient’s doctor, a hospice doctor, nurses, nurses’ aides, social workers, physical therapists, spiritual counselors, bereavement counselors and volunteers. The focus of patient care is pain and symptom control, as well as emotional and spiritual support for all involved.
Hospice care begins with a doctor’s referral when a patient and his family realize they are ready to turn away from the aggressive attempts to cure a problem which will eventually result in death. The Medicare Guidelines for entering a hospice program require that a patient have a terminal illness with less than six months to live. (Medicare is the payment source for most hospice care). But that six-month prognosis should not be confused with length of care in hospice – care is provided for however long it is necessary. Over 12% of hospice patients live past the initial 6 months of care.
Once a hospice referral is made, a team member, usually a nurse, begins an assessment of physical and emotional needs and crafts a team to meet those needs. Hospice provides the home equipment, medications and support for family as they learn to provide physical care. Volunteers help with respite care to allow family members time to themselves. Social workers evaluate economic needs and pastoral care members address spiritual and emotional needs. Short term hospitalizations are arranged if necessary for symptom control. While most hospice care takes place in the home, similar teams operate in institutions like hospitals, nursing homes and fee-standing hospice facilities, depending upon the availability and competence of family members.
A longer period of comfort
Sadly, over a third of hospice enrollees live less than a week. The time to begin thinking about hospice care is early in the course of a potentially lethal illness since preparation may help a patient live a longer period of a terminal illness in more physical and emotional comfort.
It is helpful to have time to see what hospice organizations are available locally, to check certifications, and to talk with people who provide hospice services. The National Hospice and Palliative Care Association is an invaluable source of information.* Hospitals are committed to helping arrange hospice care and a direct appeal to the hospital’s hospice coordinator is possible if the patient’s doctor does not make a referral. If a patient is not ready for hospice care, but is also unwilling to continue aggressive curative attempts, palliative care is also available – care aimed at comfort and symptom control alone rather than cure. An example is quitting or refusing chemotherapy for cancers which respond poorly.
Hospice care is paid for by most insurance policies in the US (but not in other countries) and under the Medicare Hospice benefit. Medicaid is also a payer. Surveys report that 94% of families feel their experience with hospice care was very good or excellent. The US Department of Health and Human Services is now behind expanding the availability of hospice care because it “holds enormous potential benefits for those nearing the end of life…” So as medicine moves into the brave new age of genetics, with new, individualized treatments for cancer, and more and more procedures to rewire, replumb and reconstruct the body, hospice care also moves forward, bringing the elderly and the dying out of isolation and educating the people who love them about the universal and necessary process of dying.