By Karen Diefendorf
The first modern hospice began in England in 1967. It was introduced in the United States by its British founder, who came to Yale University in 1974 to speak about its benefits at a medical symposium. In 1982, Congress included a provision to create a Medicare hospice benefit.
Here is some basic information:
• is not a place, but a concept of care;
• can be given anywhere . . . home, nursing home, assisted living, hospital, hospice house, etc.;
• is for those with a terminal illness that no longer responds to cure-oriented treatments;
• is the “something more” that can be done when there is no cure;
• is a support program for the patient and family;
• is pain and symptom management;
• provides emotional and spiritual support;
• teaches the family how to provide care;
• provides regular visits from a care team during the week;
• has 24/7 on-call nursing services;
• focuses on noncurative, comfort care;
• tailors an individualized plan of care;
• does not hasten death or prolong life;
• is about living life to the fullest with dignity and comfort.
A physician must certify a patient as terminally ill, that is, issue a prognosis of six months or less to live. Hospice cares for cancer patients, but also for those with chronic obstructive pulmonary disease (COPD), muscular diseases, dementias, and many other noncancer illnesses.
Many patients actually improve while under hospice care and are discharged until such time as they need the care again. Why? Because the patient begins receiving regular medical care with focused attention on his illness. Imagine the blessing of having a care team, made up of a medical director, attending physicians, registered nurses, hospice aides, chaplains, social workers, volunteers, and bereavement care specialists who can be there all along the journey at the end of life.
Another surprise was that, generally, Medicare, Medicaid, Veterans Affairs, private insurance, and even charity pay for all hospice care. In most cases, the patient and family have NO out-of-pocket expenses related to the hospice diagnosis. This includes medical supplies, equipment, and medications related to the hospice diagnosis.
People in nursing facilities and hospitals can receive hospice services . . . but why would it be necessary in those settings? First, the hospice care team is specially trained in pain and symptom management. Hospice nurses work closely with the medical director and attending physician, so much so, that the RN becomes the trusted eyes. Nursing facility and hospital personnel do not have the same level of experience or comfort in administering certain types of pain and comfort medications as a hospice nurse.
Another misconception about hospice is that a loved one who is recommended for hospice care by a physician has only days or hours to live. Sometimes it happens that way, such as when a patient wants to try every curative option available right up to the end of life. Sometimes it happens because medical personnel, who are trained to cure, have a hard time telling the patient that the next “trial” can only prolong the inevitable, and may make them very sick.
In addition to this crisis care approach, there is routine hospice care that provides weekly visits by a nurse or nursing aides, along with monthly visits by a chaplain and social worker. Respite care is provided for up to five days, so that the primary caregivers can get a break or much needed rest. Finally, if pain cannot be controlled in the home or facility, there is general inpatient care.
Some hospices provide pediatric hospice, but there is a difference in care. With pediatric hospice, patients from birth to age 18 may continue curative treatments while the hospice care team assists the family with in-home comfort care and pain control.
There are many benefits of hospice care, but enrolling the patient earlier is better. Benefits include the stabilization of symptoms, a decrease in emergency room and doctor’s office visits, less caregiver stress and more time for education in treatment, and some patients actually live longer and with greater quality of life. In fact, research shows that patients in hospice care live almost one month longer than those who do not receive such care.
Finally, just because patients begin hospice does not mean they are doomed to continue with it if they change their minds. Patients can stop hospice any time and seek curative treatment if they so desire. If a patient gets better, services stop, but are available again if needed.
Hospice is a benefit that allows for medications, equipment, supplies, and personalized care that pertain to the patient’s diagnosis. And it can be another dimension of providing pastoral care to your church.
Karen Diefendorf, a retired U.S. Army chaplain, serves as chaplain with Hospice Care of South Carolina.