Society of Certified Senior Advisors: Five Myths About Hospice Care

Hospice care is all about living well during the time families have together.

When the topic of hospice arises, misconceptions and strong emotions abound. It makes sense: hospice care is end-of-life care and difficult for many families to discuss. However, we as CSAs know, talking about end-of-life desires and plans in advance can bring families meaning and calm when the time comes. To that end, let’s bust some myths about hospice.

Myth #1: Hospice is about killing off the patient.

It sounds extreme, but one common misconception, even among some providers hesitant to recommend hospice, is that hospice is meant to hasten a person’s decline and passing. But in practice, hospice is about making a person as comfortable and connected as possible during what may be the last days of their lives.

“Dying isn’t really the focus of hospice care,” Angela Novas, chief medical officer for the Hospice Foundation of America, told AARP. “The focus of hospice is to live well for the remainder of your time, however long that is.” To support people in maintaining that focus, hospice care is palliative care that emphasizes pain and symptom management.

Myth #2: Hospice is a place.

Hospice is a service, not a place. Hospice could even be said to be a team of people, including home health aides, social workers, doctors, nurses, clergy, and sometimes even death doulas. Hospice care also includes caregiver support in the form of counseling and respite care.

How to Choose an Excellent Hospice Provider: Questions to Ask

What is expected of family caregiver(s)? Will the hospice provide training if needed?
How often will a hospice team member visit? How long do most visits last?
When the hospice orders medication, is it delivered? If not, where can it be picked up?
What is the typical response time if caregivers need to reach the hospice team after normal business hours, on weekends, or on holidays?
Will the hospice send a registered nurse, nurse practitioner, or physician to the home if the patient’s symptoms are not being managed? How long will it take the nurse/doctor to arrive?
If the need for inpatient hospice care arises, how will the hospice respond? Where will inpatient care be provided?
Are there any services, medications, or equipment that the hospice doesn’t provide?
Can the hospice provide respite care to give family caregivers a break? How does the hospice arrange respite care? Where will the patient go during respite care — a hospice inpatient unit? A local nursing home?
If a hospice team member is not present at the time of death, how will the hospice provide guidance and support for the family?
If the patient or family is unhappy with some aspect of care, who should we contact at the hospice organization? How do we reach that person?

Because hospice refers to a service rather than a location, families must remember that the person receiving hospice will need a place to live. Whether that’s in their own home, a family’s home, or in a skilled nursing facility or other care community, will depend on the person’s wishes and the family’s situation. For most people, being able to spend that time at home in a familiar environment is the great benefit of hospice care.

Myth #3: No one ever leaves hospice care.

Hospice care is for people with a terminal illness and a life expectancy of six months or less as determined by a physician. However, the health of someone who enters hospice may improve to the point that they choose to restart curative treatments. (Also, what we think of as curative treatments may be prescribed in hospice under certain conditions; for example, a doctor might prescribe chemotherapy during hospice for pain management.) Hospice also includes different levels of care, including crisis care. It’s important for families to talk with their loved one’s primary doctor and the hospice service provider to understand who will decide when and whether to move a patient between different levels of care, and where any additional clinical care will take place.

In general, when a person enters hospice, their family and care partners will need to be prepared to call hospice before calling 911 during a moment of crisis. For many, this is difficult, and should be discussed among families and between families and hospice providers.

Myth #4: Hospice is prohibitively expensive.

Medicaid and Medicare cover hospice care for people who qualify. Under Medicare, qualifications include:

The insured person has been given a life expectancy of six months or less by a physician.
The care the person is receiving is comfort care only.
The person has Part A in place.
The person is enrolled in a Medicare-approved program.

There’s no limit to how long you can receive hospice services, but after two initial 90-day periods, the qualifications have to be confirmed every 60 days. Most private-pay insurance companies also cover hospice care.

Because Medicare has ongoing hospice coverage, hospice fraud is unfortunately common. Criminals sign up a Medicare recipient for hospice without their knowledge and begin receiving payments for “services.” When the insured person goes to file a non-hospice claim, they’re on record as being in hospice care, and their claim is denied. Report any suspected fraud to Medicare.

Myth #5: A small hospice provider is always better than a large one.

It really depends. A large, corporate hospice provider may have robust safety systems in place, be able to offer competitive rates, and be present in underserved areas. On the other hand, they may not be able to offer the same level of flexibility and personalized communication with family members as compared to smaller providers.

What matters the most is that the family vet hospice options, together with their loved one if possible, and ask for referrals from trusted sources. Asking the right questions (see sidebar) can help ensure that the family finds a best-fit hospice provider.