Dispelling hospice myths
by Terre Mirsch
Twenty years ago, when I facilitated community education programs, less than half of the people in the audience had heard of hospice. Today, it is rare when that I find anyone in the audience who has not heard of hospice, and most feel that that they are well informed about this important benefit.
While this is good news, this awareness is often accompanied by misunderstanding. I commonly hear “I didn’t know hospice provided those services” or more commonly, “I thought that hospice was just for people in their final moments of life”. My response: “Yes, hospice can provide great comfort to people and their families at the very end of life; we can provide even greater support if we have the opportunity to know and care for people for many months rather than just a few weeks, days, or hours”. Late referrals and misrepresentation of hospice in the movies or on television add to the misconceptions that prevent patients and families from choosing hospice earlier and experiencing its full benefits.
Below are some commonly held myths and realities:
- Myth: Hospice means giving up hope.
Reality: Hospice affirms life, providing opportunity for growth, reconciliation, and reminiscence. Hospice redefines hope with a focus on quality of life.
- Myth: Hospice hastens the dying process.
Reality: Several research studies prove the many benefits of hospice care, including the reality that some people live longer when they receive hospice or palliative care services. Optimal management of pain and other symptoms, additional practical help, and emotional and spiritual support can contribute towards this outcome.
- Myth: Hospice is a place.
Reality: Hospice care usually takes place wherever the person lives including a private residence, nursing home, assisted living or personal care facility, or any other residential setting. Some hospices also care for those that are homeless. Almost 70 percent of
hospice care is provided in the home setting, while only 30 percent is provided in a hospice inpatient facility or hospital.
- Myth: Hospice is only for people with cancer.
Reality: Only 40 percent of the people receiving hospice care have cancer, while others have progressive heart, lung, kidney, or liver disease; nervous system conditions such as dementia, stroke, Parkinson’s disease, or Amyotrophic Lateral Sclerosis (ALS); or other life limiting illnesses. Increasingly, older adults with complications due to general frailty and functional decline are also eligible to receive hospice care.
- Myth: Hospice is limited to six months of care.
Reality: There is no limit to the number of times someone can enroll in hospice or how long they can remain on service, as long as eligibility criteria are met. Eligibility criteria are defined by the insurance company and/or the hospice program and usually include evidence that an illness is progressing.
- Myth: Hospice requires that you have a primary caregiver.
Reality: Most hospices care for people who do not have a caregiver, and many have special programs to provide extra support to enable those without caregivers to remain in their homes.
- Myth: Hospice care is expensive.
Reality: Hospice care is covered by Medicare, most state Medicaid plans, and many other insurance plans. In fact, hospice care can provide financial benefits by covering the cost of medications, supplies, and supportive care at a time when there may be financial worries. Many hospice programs provide care to those in need without regard to ability to pay.
According to the National Hospice and Palliative Care Organization (NHPCO), more than 1.5 million people received hospice care in 2009. However, for every person receiving care, there are two more people who could benefit. Additionally, far too many people are referred for care during the last weeks, days, or hours of life.
Dispelling myths and gaining a greater understanding of the realities of hospice care will improve access to this important benefit for all in need. Please share any additional questions about hospice care with us so that we can be sure to address them in future blog posts.