Hospice Hurdles: Fear of dying, misread benefits
REPOSTED from the Times Tribune.
BY LAURA MARION AND DR. GLEN DIGWOOD / PUBLISHED: NOVEMBER 26, 2019
About 7,452 people die every day in the United States. According to the United Nations World Population Prospects report, one person dies approximately every 12 seconds. With all this loss, why are we so fearful of dying?
Most Americans do fear death, but that has not always been the case.
Death, many years ago, was much more commonplace and almost accepted. Life expectancy in 1960 was only slightly over age 69. By 2016, that number had increased to an average age 10 years longer for men and nearly 12 years longer (81) for women.
“The American culture focuses on science and medicine as a solution to the problem of dying,” according to author Lawrence R. Samuel, Ph.D. We have become accustomed to being “fixed”; there are pills, procedures and treatments for everything.
We also have an aging population, with the largest generation, the baby boomers, beginning to die.
Death is really a normal part of the life cycle, and we need to confront that fact and accept the inevitable.
Seriously ill people want to avoid inappropriate prolonging of the dying process. They want to relieve burdens on their families, and they want appropriate treatment of pain and other symptoms. These goals can be achieved with hospice, which is available to all with Medicare, Medicaid and nearly every private insurance.
Americans may be fearful of the word “hospice” without truly understanding the benefits. Hospice professionals hear it every day: “Please don’t mention hospice. I don’t want hospice. Please don’t say the ‘H’ word.”
Why?
One reason is that we have medicinized dying. In addition, there are major misconceptions and misunderstandings about what hospice is and what it provides.
Hospice is a philosophy of care based on the principle that all people have the right to die pain free and with dignity.
A hospice care belief is that patients’ loved ones deserve the support and guidance needed to provide care to the terminally ill. The focus is on caring, not curing.
Hospice care can be delivered in homes, nursing facilities, personal care facilities, hospitals and free-standing inpatient hospice facilities. The primary goals of hospice care are pain and symptom management.
The person (patient) and family are seen as a unit of care, and the bereaved receive the attention of bereavement counselors for up to 13 months after the loved one’s death.
Some hospices may offer palliative support in massage therapy, pet therapy, raike or music therapy. Hospice benefit covers the cost of all medical equipment related to terminal illness, all medications related to terminal diagnosis, related diagnosis and symptom management.
The benefit also pays for inpatient care for pain and symptom management, as well as respite care to alleviate some of the burden on caregivers. The hospice team is available 24 hours a day to families and patients.
The biggest fear of hospice is dying.
Living the last days, weeks or months in hospitals, offices and treatment centers may be a choice for some, but the vast majority of people say they want to be in their homes when it’s time to die. For example, 70% of individuals surveyed by the California Healthcare Foundation in 2017 said they wish to die at home — yet 68% do not.
Medicare statistics show that the average hospice beneficiary in 2018 received only three to four weeks of hospice care, despite the fact that hospice services are available up to the last six months of a person’s life, with verified diagnosis by two physicians.
Patients do not have to pass within that time frame. Hospice services are justified routinely to continue prolonged care past the initial six months.
Different medications are used to manage pain, shortness of breath, nausea, vomiting, constipation, diarrhea and other symptoms. Many people fear some of the medications used to treat symptoms, but hospice professionals will educate and explain to patient and families that medications do not expedite or slow the dying process.
Although professionals expect that a change in our cultural mindset about death and dying will be a long and difficult road, this statement by Dr. Deepak Chopra summarizes it best: “The intention to live as long as possible isn’t one of the mind’s best intentions, because quantity isn’t the same as quality.”
LAURA A. MARION, R.N., B.S.N., is director of Allied Services Hospice and Palliative Programs. GLEN D. DIGWOOD, D.O., is medical director of Allied Services Palliative Program and palliative director, Geisinger Northeast Region.
