Hospice Care

Written by Steven Burns
From his column To Your Health

Let’s talk about hospice. To many, it’s a mystery. Something that is a last resort, giving up, and even hastening death. I’ve heard patients who were at the end of their lives say, “I’m not ready for hospice yet,” but hospice can allow for a dignified death with less pain and more time and ability to talk with loved ones, re-establish friendships, and reach a peace about the inevitable end of life.

In the 11th century, hospices were established on the island of Malta in the Mediterranean. In the 14th century, the Knights Hospitaller of St. John of Jerusalem established the first hospice for the sick and dying on the Greek island of Rhodes. These organizations, which we might liken more to hospitals, were established to care for those returning from crusades in the Middle Ages. They would also care for poor people until their death, often without cost.

Much later, starting in the 1800s, the modern concept of hospice was established, first in England and then in the United States. Compassionate care and relief of suffering, with a focus on comfort rather than cure, was the emphasis.

While the word “hospice” initially referred to a place, it now refers to a form of care that can be done in any type of facility or at home.

So, the point of hospice is to give compassionate care, relieve pain, and provide dignity to a person who is nearing death. When a person enters a hospice program, life-extending therapies, such as chemotherapy, are stopped (with possible exceptions, like for when chemotherapy helps with pain). Patients and families may be surprised to learn of the medications used: Morphine, lorazepam, haloperidol, all for the relief of shortness of breath, pain, and anxiety. The doses are often very low, but may be increased as a terminal disease progresses and pain increases. Artificial methods to prolong life, such as feeding tubes, IV hydration, and ventilators, are not part of care.

1.61 million Medicare patients were enrolled in a hospice system for at least one day in 2019.
According to a 2021 report from the National Hospice and Palliative Care Organization, 1.61 million Medicare patients were enrolled in a hospice system for at least one day in 2019, the last year with complete statistics. That represents 51.6% of Medicare patients who died in that year. Most (98.2%) of the care was provided in the homes of patients.

I have had patients who received excellent hospice care, then improved and were released. We sometimes refer to this as “graduating” from hospice. It may surprise you to know 17.4% of hospice patients were discharged from hospice alive.

When should someone start thinking about hospice for a family member? In general, when they have a disease that is likely to cause their death, and care will be difficult for the family to provide at home, especially when there is pain, agitation, or shortness of breath. Sometimes patients with dementia, including Alzheimer’s disease, qualify for hospice care.

How does a person become a hospice patient? A physician or a family member can ask for an evaluation. In order for a patient to qualify, the patient must have a life expectancy of less than six months. One question I heard at a hospice conference was, “Would it surprise you if this patient died in the next six months?” A “no” answer is adequate for qualification. A nurse or physician evaluates the patient to find whether they qualify, and if they do, will start working on a plan to keep the patient comfortable and with family members, ideally in their own home.

Care is provided by nurses and trained assistants, as well as physical therapists, music therapists, chaplains, and others, working with physicians who oversee the program and prescribe medications. The hospice I work with the most allows me to direct the care of my primary patients, within the guidelines of hospice. If a patient’s primary care physician is unable to do this, a hospice physician oversees care.

Medicare, Medicaid, the Department of Veterans Affairs and private insurance typically pay for hospice care. While each hospice program has its own policy regarding payment for care, services are often offered based on need rather than the ability to pay. Still, it’s important to ask about payment options before choosing a hospice program.

If you think a family member may need hospice services, you can speak with their primary care physician, or, in in a hospital, with a social worker or nurse, or you can contact a hospice organization or your state department of aging.

Everyone dies. We can make the process of death a gentle, quiet, pain-free process with the use of the techniques offered through hospice. And, when a loved one passes, most hospices have bereavement counselors and grief support groups that can augment your church’s assistance. I recommend you keep in mind the benefits of hospice.

Dr. Steven Burns, M.D., is board-certified in family medicine and has been in practice for more than 30 years. Opinions are his own.