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7 Things to Consider Before You Call or Start Hospice Care

This is part of Cake's collection of Health articles. Create a Cake profile for free to discover, document, and share your end-of-life wishes.

MSN, PCP-BC, ACHPN, CPHON

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Hospice is commonly thought to be only for people when they are actively dying, with hours or days to live. While hospice care does include physical, psychosocial, and spiritual care at the end of life, hospice care offers so much more, and can be considered well before you or your loved one is dying. 

Jump ahead to these sections:

This article will address both the objective criteria needed to be eligible for hospice and more subjective considerations that will vary from person to person.

First, Check Your Hospice Eligibility and Requirements

The criteria of when a person is allowed to enter hospice care is driven by insurance. Hospice care is usually billed to Medicare Part A, but most private insurers have a hospice benefit as well. 

For this reason, the Medicare criteria provide the most commonly used benchmark. Here are some facts about hospice eligibility for adults. I’ll make a few distinctions related to hospice for children but if not otherwise specified, I’m talking about adults.

1. Two doctors (a doctor you choose and a hospice doctor) must certify that if you or your loved one’s disease takes its expected course, you’ll die within 6 months

Despite this requirement, many people stay on hospice for longer than six months. This is allowed as long you still meet all criteria and your doctors continue to certify that you will most likely die within six months.

2. For adults, treatments, surgeries, and interventions that are directed at curing your disease must be discontinued

There are some exceptions to this that are at the discretion of the hospice medical director and are considered on a case by case basis. 

For example, if you have end-stage kidney failure and are ready and otherwise eligible for hospice, but you want to live until a special event two weeks away, a hospice may agree to allow you to continue on dialysis for those 2 weeks. (The hospice, not Medicare Part A will pay for dialysis.) Children with a life-threatening illness are allowed to continue medications and interventions that are intended to treat their illness. This is called concurrent care. 

3. For the most common illnesses, there are specific criteria that must be met in order to start hospice

The criteria are evidence-based and look at symptoms, disease-specific gradings, lab values, or failure of usual medications used to treat a specific illness. 

The criteria for each disease is different. If you’re interested in the details of eligibility criteria for each disease, I suggest you ask the hospice you want to work with. Eligibility for hospice is reviewed every 90 days for the first two certification periods and every 60 days thereafter.

4. You do not need to have a health care proxy or do not resuscitate order (also known as a DNR, part of the POLST/MOLST forms) to be enrolled in hospice. However, I believe that everyone, even healthy people, should have a health care proxy identified and that person should know your wishes related to aggressive medical care in the event you can not make decisions for yourself.

Then, Consider the Personal Aspects of Deciding when to Start Hospice

So, even if you or your loved one meets the objective criteria to be on hospice, there are so many important subjective and personal considerations when deciding if it's time. It may be time to start hospice if:

5. You no longer want to go to the hospital for treatments. Instead, you prefer to be treated at home or wherever your hospice care is being delivered. Of note, you can always change your mind about going to the hospital.

6. You want to stop medications and interventions that make you feel lousy and opt for ones that make you feel better, even if that means your life might be shorter.

7. You and your family want extra support and resources focused on your wishes, on what’s important to you and your family, and you want to do that on your terms. You want a team of specialists who are willing to partake in difficult, sad conversations, and who will hold space with you and your family when the hope for getting better is shifting to the hope for comfort and peace.

Myths About When to Start Hospice

You must be bed-bound and close to death. The best hospice care decisions aren’t made in crisis. Hospice care is best when it’s  initiated after you and your loved ones make a calm and informed decision. You can still be working, caring for yourself and family, and even travel when on hospice.

You’ll automatically get a “morphine drip” that will hasten your death. If morphine or a similar medication is used, it’s only with the intention of increasing comfort. Research suggests people on hospice actually live longer than their counterparts who don’t start hospice when facing certain diseases. 

You must go somewhere to get hospice. Most hospice care is delivered at your home. But it can also be in a nursing home, assisted living, a hospital, or a hospice facility.

Starting hospice is giving up. Hospice care is the opposite of giving up. Entering hospice care means control over your life. It’s a shift from a hope for a cure to hope for comfort and quality of life. Starting hospice can be empowering and brave.

Getting the Care You Need and Deserve

Hospice is a type, a small part in fact, of palliative care medicine. Ideally, all people with serious and life-threatening illnesses have a palliative care team adding support to their primary medical teams. When I say palliative care now, I am not talking about hospice. When you are receiving palliative care, you can still get chemo, dialysis, VNA at home, or physical therapy. 

Adding palliative care specialists to your medical team earlier, when you are still receiving the interventions above, will help you know more about hospice and when it’s time to consider it. To learn more about the differences between palliative care and hospice, visit our blog post on the subject