Last month, Flo Wineriter described what the clients of the Hospice movement see. This time he focuses on the inner workings.

Hospice care in Utah and in most areas takes place at home. There are Hospice Care facilities (in a few states and in other countries) where several terminal patients live, but generally, Hospice services are given in the home of the patient, and is provided by a team of people, professionals and lay care givers.

A Registered Nurse is the "captain" of the Hospice team. The RN consults with the patient and the family to determine goals and objectives: the physical needs of the patient and how those needs can be met. He or she keeps the family doctor informed of changes in the patient's condition, and recommends the type and amount of pain control medications.

The RN also teaches the family "care giving techniques" and familiarizes them with signs of imminent death. Families are urged not to panic and call 911 when those signs of death appear. The reason for this caution is that emergency medical technicians are required by training and by law to do everything possible to restore and maintain life, and to get a patient to the hospital. Phoning 911 for a terminal patient is simply delaying death and subjecting the patient to unnecessary pain and agony, and is contrary to the goal of Hospice care.

For example: recently, a family panicked, and called 911. The patient was resuscitated, and rushed to the hospital. A tracheotomy was installed, and the patient was kept alive in a vegetative state for a few days until the patient's personal physician could convince the hospital to remove the emergency life support system and let the patient die. The Hospice RN felt guilty because she had failed to sufficiently impress upon the family not to call the paramedics, and the family felt guilty for causing the patient to suffer unnecessarily.

Another member of the Hospice team is the social worker. He meets with the family to discuss insurance coverage, community resources, and family conflict resolutions. He also helps resolve psychological problems concerning the patient and family members.

A physical therapist is a member of the Hospice team, and helps the patient and family establish exercises that will enhance muscular condition.

Home Health Aids are available to come into the home and assist with bathing, bandage changes, feeding, toileting and any other health related activites.

Trained volunteers are members of the Hospice Team. They receive about 16 hours of training in human relations, learning how to listen to people and how to respond to expressed needs as well as unexpressed needs. Volunteers help patients accomplish their "wish list" of things they want to do during the final days of their life. Volunteers also provide respite time for the primary care giver: they take care of the patient for a few hours while the primary care giver goes shopping, visiting, to a show, out to dinner or just for a walk. They give the primary care giver some "time off" from the intensity of taking care of the patient. The final member of the Hospice Team is the oncologist, a medical doctor who specializes in the care of cancer patients. The Hospice Team oncologist may never see the patient, but acts in an advisory position when other team members have questions, and also acts as an intermediary between the Hospice Team and the patient's personal doctor.

The entire Hospice Team meets every week to discuss the progress of each patient, to exchange information about patients and, most importantly, to give support to each other.

Caring for patients who are in the process of dying is uniquely intense. Hospice Team members get very involved and attached to their patients. Watching a patient deteriorate and die is a very emotional experience. One never gets hardened to it or crass. Consequently, team members need to express those feelings and concerns in a safe environment, and that is what takes place during the weekly team meetings.

Believe me, it is a moving experience to sit with a nurse, a social worker, a doctor, and another volunteer and watch tears flow as they discuss one patient after another. A Hospice Team meeting is different from any other meeting in the medical profession.

Follow-Up Service

Hospice care continues after the death of a patient. Often the RN is the first person called by the family when a patient dies. My wife is a Hospice RN, and she is called and leaves home at all hours of the night to go to the home of the deceased, and help with contacting the mortuary and preparing the body for the arrival of the mortuary people.

Hospice Team members often attend viewings and funerals to give solace and support to family members.

Bereavement volunteers contact the family members by mail within a few days of the death and provide them with a pamphlet explaining the grieving process. At the end of 30 days the bereavement volunteer contacts the family to determine if they are having unusual grief problems, and to offer help in contacting community resources.

Hospice provides an eight week bereavement counseling group that helps mourners understand their grief and come to terms with the changes in their lives. The bereavement volunteer then contacts the family again at 90 days after the patient's death, with follow-up calls at six and twelve months after death.

All this work centers on the Hospice mission:

To provide terminally ill persons thoughtful, considerate care that helps them find comfort and meaning during the final days of their lives.

--Flo Wineriter