My husband died July 20 under the care of Hospice. I learned a lot about hospice during this experience and wanted to share some of that information with you, our readers.
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 —
- 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.
- 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.
- 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. Be sure that your choice of a hospice will give you “continuous home care (CHC)” support in your last days if you qualify for it. (See more below)
- Going on hospice does not mean 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.
- Hospice is required by law to offer 24 hour care at home (called “continuous home care” ) but may not offer it unless you or your doctor specifically ask for it. If you enter the hospice program with the expectation you have several more months of life and want to enhance the quality of your life, you will receive 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. In the early stages, as long as you or your family can take care of you or you have hired home health aides yourself, hospice will likely come once or twice a week to enhance the care you are already receiving. However, if you and your family need more assistance as the end comes, you can request (demand) what is called “continuous home care” which is a hospice supplied nurse who will be with you and your loved one 24 hours a day until the time of death. This benefit is usually provided if requested and the patient qualifies, but some hospices do not proactively “offer” it, because it is expensive to provide. In fact fewer than 1% of hospice days nationally include CHC. Continuous home care is mainly appropriate for the last week or two of life, but you and your doctor can and should ask for it. In fact, be sure to ask about it before you join a hospice. If the hospice is vague or refuses to supply it, ask why and if necessary change to another hospice.
- 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.
| Question | Palliative Care | Hospice |
|---|---|---|
| Who can be treated? | Anyone with a serious illness | Anyone with a serious illness who doctors think has only a short time to live, often less than 6 months |
| Will my symptoms be relieved? | Yes, as much as possible | Yes, as much as possible |
| Can I continue to receive treatments to cure my illness? | Yes, if you wish | No, only symptom relief will be provided |
| Will Medicare pay? | It depends on your benefits and treatment plan | Yes, it pays for some hospice charges |
| Does private insurance pay? | It depends on the plan | It depends on the plan |
| How long will I be cared for? | This depends on what care you need and your insurance plan | As long as you meet the hospice’s criteria of an illness with a life expectancy of months, not years |
| Where will I receive this care? |
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Source: www.nhpco.org/palliativecare/explanation-of-palliative-care.Copyright © National Hospice and Palliative Care Organization. All rights reserved.
Probably the biggest barrier to receiving hospice care is that the decision to forgo any further curative treatment and accept comfort treatment only is a difficult one for many people to make. It means understanding that death may be near, and that fact is hard for many patients (and families) to acknowledge. In addition, health professionals are trained to prolong life and may encourage terminal patients to keep trying different treatments, even though they may not extend life at all. A friend of mine struggled with the hospital where his brother was being treated, because all his brother wanted was to die at home with his dog in his lap, while the hospital and doctors wanted to keep trying ways to keep him alive a little longer. Finally, his family intervened, and he died a few days after discharge, at home with his beloved dog, just where he wanted to be.
My husband decided to go on hospice because his quality of life was no longer how he wanted to live. He told us that if he got to the point of not being able to move, stand up, dress or feed himself, watch baseball — life was no longer worth living. When that time came, he voluntarily chose hospice. The key in choosing your own path is to be clear with yourself and your family what you want. The longer you eat or drink liquids, the longer it will take to die. Hospice is there to make you comfortable and that often includes morphine and antii-anxiety medications. My husband bravely chose to stop eating or drinking or taking medications and he died 9 days after signing up. It was a peaceful death. It was what he wanted and we supported him in that decision.
Making a plan for end of life removes the burden from your family and loved ones of those decisions. One of my next posts will be about making that plan and why it is important.