Hospice

We live in a time when many diseases are treatable and even curable. However, there is a time when death becomes certain and is beyond our control. When it becomes clear that curative approaches will no longer provide benefit to a patient, hospice care may become appropriate. Hospice is a unique type of healthcare whose philosophy involves treating the patient rather than the disease and emphasizes quality of life rather than length of life. They seek to keep patients pain free and try to ensure quality end-of-life care and a dignified death surrounded by loved ones. Although it can be given in the hospital, the majority of hospice patients receive care at home.

Deciding to utilize hospice can be a difficult and personal decision to make. Therefore, the patient, family, and medical practitioner should discuss hospice as an option and decide when it is appropriate. Patients receiving hospice care generally have a life expectancy of six months or less however if the patient improves dramatically, it is always possible to discontinue hospice services and return to treatment for his or her disease.

The hospice staff is highly trained in making sure patients are comfortable and that all medical and emotional needs are appropriately met. Generally, an interdisciplinary team including physicians, nurses, social workers, counselors, clergy, and volunteers work closely together to ensure each patient is receiving comprehensive care.

Services provided include:

Physician and nursing service

Pain and symptom control

Spiritual care

Medical supplies

Home health aide assistance

Social work and counseling services

Bereavement services for family members to help them through the grieving process after the death of the loved one

Respite care to allow family caregivers to rest and rejuvenate

Family conferences to provide updates, stay informed, and express any concerns

All services are available 24 hours a day, 7 days a week.

The first hospice was founded in London in 1967 by Dr. Cicely Saunders. This type of skilled care was introduced to the United States when Dr. Saunders spoke to a group of medical practitioners at Yale University. Her passion for this subject gained the interest of many in the U.S. who spoke at senate hearings regarding the importance of dying with dignity and tried to gain federal funding to help provide the appropriate supports for patients and families. In 1978, the Department of Health, Education, and Welfare deemed hospice an appropriate use of federal funds and initiated an accreditation program through the Joint Commission of Accreditation of Hospitals. The first hospice organization in the United States was then established.

Hospice has generally been well received. A 2004 issue of the Journal of the American Medical Association published a study entitled Family Perspectives on end-of-life care at the last place of care. The group states that over the past few decades the incidence of patients dying in hospitals and nursing homes has increased. They set out to compare the end-of-life experience for patients who died in institutions versus in a home (hospice) setting. They interviewed family members of approximately 1600 patients in 22 states. The results showed that 3 in 4 family members reported the hospice care was “excellent”, while less than half were happy with the institutional care of their loved ones. The family members with institutional experiences described problems with receiving adequate pain medication, lack of emotional support, and poor communication from medical caregivers. Overall, this study suggests that hospice patients receive better quality end-of-life care than patients in institutions. Furthermore, quality of care at the end of life is exceedingly important to patients; even more than length of life. This was shown by a group at the University of Pittsburgh in May 2004. They surveyed over 100 people offering different scenarios of patient deaths. It was shown that 75% of people were willing to trade life expectancy for a better quality care in the last month of life. In fact, the majority of participants said they would be willing to trade as much as seven months. These studies collectively show that Americans are beginning to value high quality end-of-life care and the experience provided through home hospice.

Medicare has a hospice benefit allowing patients to receive the full extent of hospice services necessary for that individual patient. Most private insurance companies also include hospice services. Additionally, if patients have inadequate insurance coverage they can pay out of pocket, however if this is not possible most hospices provide services free of charge. Your medical provider can give you more information.

If you or a member of your family could be a candidate for hospice, discuss it with your medical provider. It is important to make your preferences known in advance to allow your healthcare professional to provide the best care and information possible.

Despite the success of numerous skilled hospice programs, and favorable patient experiences, many people continue to die in the hospital rather than at home. There are certain patients who perceive hospice care as “giving up” and prefer to remain on treatment until the very end of their lives. However, this is often the result of lack of appropriate communication from medical caregivers regarding patient options. It is important that caregivers are comfortable asking about individual values and desires regarding end-of-life care at the proper time. This allows the practitioner to counsel each patient and help to make important and difficult decisions regarding the last few months of their lives. As the life expectancy in the United States increases, the need for hospice is going to grow considerably in conjunction with an increase in funding. This will require that medical professionals re-evaluate the changing needs of their terminally ill patients and continue to communicate hospice as a solution where appropriate.

For further information or to find a hospice organization near you, please visit The National Hospice and Palliative Care Organization.