Month: February 2023

Given that former President Jimmy Carter has decided to spend his remaining time with his family at home under hospice care, I thought it would be a good time to clarify what hospice is all about. When you choose to enter a hospice program, it is usually because you, your family and your doctor feel that your life will be ending soon – either within weeks or up to six months. You choose to stop medical treatment designed to cure your illness and instead receive “comfort care” designed to lessen pain and make you comfortable at home.

You may not know — 

1. Hospice does not provide 24 hour care at home. Many people think that all care will be covered. Unfortunately it is not. The family and the patient will need to hire home health aides to support the patient with daily activities like dressing, showering, eating, and moving around. Hospice will provide necessary medications, medical equipment like commodes, special hospital style beds, walkers, etc., incontinence supplies, and weekly visits from aides, chaplains, physicians, and other health professionals. But most hours of the day, you and your family will be alone and in charge.
2. Going on hospice does not necessarily mean you must die within six months. That time period is somewhat arbitrary. End of life care may vary for each person. When the initial legislation was passed, it was thought that the majority of patients would likely die within a week or two of admission to a hospice program, because most enter the program late in their illness stage. More recent research indicates that 90% do die within the six month time frame. Legislators were likely concerned that hospice would become another “entitlement” and expand to cover a number of services over time. Thus, the six month limit was inserted to make it clear that this was “end of life” treatment only.
3. The time limit of hospice care is not rigid. My father, who died at 94, was on hospice for several months. The care he received supplemented what the family and other health professionals could provide, and it lessened his pain so he could die peacefully. My mother, who died at 98, was on hospice 3 or 4 times before she died of something unrelated to her original diagnoses. She would go on hospice for a few months, feel better, gain weight and  be taken off hospice. Then she would show signs of decline and go on hospice again! All in all, she spent about two years on and off of hospice, and the family was grateful for the flexibility the program provided to make her comfortable during that time.
4. There are some differences between non profit hospices and for profit hospices.  Which is better? A comprehensive study by Milliman in 2019 showed that there were in fact significant differences between the two types of organizations. For profit organizations tend to keep patients longer and have better net margins from Medicare reimbursement. But non profit hospices deliver 10% more nursing services, 35% more social worker visits and twice as many therapy visits. When choosing a hospice, consult with your doctor but also ask others in your community about their experience.
5. If you go on hospice you cannot receive any more medical treatment. It is true that being a hospice patient means you have agreed not to seek further treatment or a cure. However, you can keep your physician and still receive medications and other services that will give you comfort and support. You are not completely cut off from the health care system.
6. Palliative care is not the same as hospice care.  Most people have no idea what palliative care is. It is a form of care that is available to patients with serious illness, even if there is no prediction of imminent death. Palliative care allows you to continue receiving medical treatment, usually at home or in an outpatient setting, where hospice generally requires you to stop curative medical treatment. Your doctor can help you decide which form of care is best for you. Both programs have goals to make you as a patient as comfortable as possible.