“You matter to the end of your life. We will do all we can not only to help you die peacefully but also to live until you die.” Dame Cicely Saunders
In 1985, my father-in-law died at home on hospice care and his family’s tender loving care. In the 1980s, hospice was a new Medicare benefit, and we didn’t know what to expect. A nurse came to the house and taught my mother-in-law how to administer pain meds and showed her ways to make him comfortable while dealing with the ravages of stomach cancer. Under Medicare rules, family members must provide most of the caregiving or hire a professional if no family member steps up. One of the biggest hospice myths is that someone will stay with your loved one 24/7. Family caregiving was the case with my father-in-law and every hospice patient I met in my twenty years of volunteering.
The hospice team provides occasional nursing, help with bathing, a social worker, chaplain, and volunteer to sit with the patient or give some respite for the family.
A staff person is usually available by phone 24/7 to answer questions or have meds re-filled. I once received a morphine delivery for my dying aunt at 3:00 AM. A doctor responded to my frantic call, and I had the meds within an hour. Doctors are generally available to the team to write prescriptions, answer clinical questions, or certify the patient’s eligibility to enter or remain in hospice. It used to be doctors who met with potential patients; most of the time, it’s nurses interviewing patients and families to qualify the patient for enrollment.
Insurance covers hospice, but many hospices provide free services for the uninsured.
To cover the costs for the non-insured, most hospices hold fundraisers so they don’t have to turn away anyone in need. In California, the nonprofit hospice where I volunteered, Providence Trinity Care Hospice, held many fundraisers. ‘Sunday by the Sea” was my favorite event. It’s advertised as a “Gourmet Food & Wine Tasting Gala” and does not disappoint. It’s held annually at a gorgeous mansion on a cliff overlooking the Pacific Ocean. Local restaurants serve delicious tidbits, and others offer wine and other beverages. There is a silent auction full of terrific items, and the adage, “no friends at an auction,” proves true when people are bidding against each other for coveted tickets to a Los Angeles sporting event or a ride on the Goodyear Blimp. It’s a day full of fun, fellowship, and laughter; the money raised helps support a wonderful hospice that serves thousands per year, including pediatric patients, in Southern California.
Most people say they wish they had known about hospice sooner or had their loved one on the service longer.
According to the Medicare Payment Advisory Commission, the median length of stay in hospice care is 17 days, and the average lifetime length of stay is 92 days. Former President Jimmy Carter helped Americans understand this when he entered hospice in February 2023, and nearly a year later, he is still enrolled and alive. Still, that is a far cry from the six months that hospice allows. As Final Exit Network’s Surrogate Consultant, I often hear stories from people about the withholding of essential pain meds. I offer my services to rectify the situation. However, my family’s experiences with various hospices since the 1980s were only positive. Staff members were knowledgeable and kind. They could see the signs of approaching death and tried to prepare us for what was coming. Social workers often call family members, urging them to go to the bedside of a dying loved one before it is too late. As a volunteer, I try to follow their example, although preparing a family for a loved one’s death is more about listening, holding a hand, and being present during these sacred moments.
Hospice is far different in 2024 than in 1985. In a total reversal, now most hospices are for-profit rather than nonprofit.
Unfortunately, there is more fraud and cutting corners in today’s hospice environment. With many, profit is the driving force, but not all are that way. Ira Byock, a long-time palliative care doctor, writes about the problems with today’s hospice. “For one thing, I want to be very clear. I am not against for-profit hospice care. I’m not against even publicly traded or private equity-owned for-profit hospice care. I am passionately against bad care, and there is a lot of bad hospice care that preys on highly vulnerable patients and is unnecessary.” (2023)
The philosophy of hospice should still apply: stay ahead of the pain and offer comfort and family support to the end.
People need to do their due diligence and choose wisely. If you find you have hired a bad hospice, choose another one. I find most people do this work because they are called to it, not for a big payday. See the resources below to help in your search.
Resources
Helen Bauer and Jerry Fenter are long-time hospice professionals who share their knowledge and information. I recommend their Heart of Hospice podcast as a place to start your hospice journey.
Please see my 18 Tips for Choosing a Hospice
Email me any questions or concerns; I am here to help.
January 6, 2024
Althea Halchuck, EJD, CT, BCPA
Death Maven™
