6 of the 13 Things Someone Should Tell You About Hospice

[I am writing a book on hospice. One section includes 13 Things people should know about hospice. There are far more than thirteen, but I wanted a manageable list for someone suddenly trying to learn about hospice. Below are the first six.

I ask for your help. What was missed that you think should be known about hospice? Maybe your suggestion will be similar to one of the remaining seven not included here. Or maybe it will help me add a better one! I look forward to suggestions.]

#1 – Hospice is (not) about giving up.

When hospice is considered, many people (including doctors) declare a variation of: “There’s nothing more we can do.” No cures remain. No procedures will stop the disease’s progression. No cutting-edge experimental drugs will make a difference. It’s time to throw in the towel, cash in the chips, raise the white flag . . . hey, wait!

Hospice, with its six months or less to live, is designed to maximize time with family, to express and/or receive love, forgiveness, and gratitude. Hospice care can include long chats about today and shared memories about yesterday. Unfortunately, many patients are near death when entering hospice. [Based on 2016 data, 27.9% of patients die in a week or less.] I do think too many wait too long to even consider hospice. Since hospice is a choice, and allows people to be at home and engage with the loved ones in their life, it is not about giving up. It is a choice to make the most of every precious day.

#2 – A hospice evaluation is completely, totally free.

If you think you—or a loved one—may be ready for hospice care, you can ask a hospice for an evaluation. You don’t have to have formal permission from any doctor. The hospice you contact will get in touch with your physician to let them know the step you are taking and to obtain some basic information. This won’t cost you a penny. In other words, free. If that evaluation of your current health condition leads to a hospice nurse to consider you “hospice appropriate,” two physicians (your doctor and the hospice medical director) will have to confirm the decision. There will be other forms and hoops to leap through, but getting a first opinion from a hospice, and being able to talk with a knowledgeable medical professional, will be relatively easy and without any costs.

#3 – It helps your doctor when you help your doctor.

I hope you talk to your doctor about your end-of-life hopes or fears long before needing hospice care. Let her or him know your preferences. Maybe you’ll change your mind, perhaps when younger wanting “everything” done during a health crisis, and then later indicating you don’t want any extraordinary measures. Keep your doctor in the loop. Ask what forms need to be completed to make your choices known and legal. However, if you’ve never openly talked with any doctor about end-of-life wishes, and are now facing a serious illness, you may need to start the discussion. Some doctors are comfortable talking about dying and death, but some aren’t. If you think it is time to understand your end-of-life choices, maybe you’ll have to help your doctor get the conversation underway. Never assume your doctor will start talking first.

#4 – Hospice is “free” because you’ve already paid for it from a lifetime of taxes given to Medicare . . . except it’s not really free.

There is much in hospice that will be covered by Medicare (and other form of health insurance, which often mimic Medicare’s guidelines). You will rightly be told that the hospice benefit pays for medication, the hospice staff caring for the patient, and for “durable medical equipment” (hospital beds, commodes, etc.). However, there is a however.

Hospice only covers the medications needed for the primary diagnosis. It does not cover every potential illness a patient may have. For example, if pancreatic cancer is deemed the life-limiting illness, all medications related to it are covered. If you also have a heart condition requiring medication, those necessary drugs will likely not be covered. I have also known families that were frustrated when a hospice couldn’t cover the costs of a specialized bed for a loved one. While hospice benefits are generous and extensive, they are limited by clear guidelines. I urge everyone to ask your hospice about what is, and what is not, covered.

#5 – Every hospice is different and you can compare one with others.

Some people live in regions with few hospices . . . and perhaps only one. But most have a number of local-to-you agencies. Where I live (Fresno, California), there are currently eleven hospices. Two are non-profit, the rest are for-profit. Is a non-profit better? Not necessarily. Does the size of the organization matter? Not necessarily. Just like hospitals, supermarkets, and restaurants, every hospice is different. But how can you decide which hospice is “better?”

Three ideas:

  • Medicare’s website has a section on hospice comparisons. Search for it using Medicare, hospice, compare. [Since web addresses change, I don’t want to misdirect you, but those search words should easily get you there.]
  • Word-of-mouth! If a trustworthy friend recommends a hospice, listen to their input.
  • How you experience a first contact also matters. If a hospice nurse does an evaluation and you don’t feel “comfortable” with that person/company, have another hospice do a second (or third) evaluation.

A good hospice always emphasizes giving the patient control and choices about decisions. Having choices should be at the beginning of the relationship with hospice.

#6 – Hospice won’t move in with you.

Many folks are glad the hospice nurse (and other hospice staff) won’t be in their home 24/7. After all, with guests, you have to try to keep the place somewhat clean! Unfortunately, some think they have read (or heard from a friend of a friend) that hospice does everything. If the hospice team doesn’t move in with you, they are at your instant beck-and-call.

Sorry, that’s not true.

Hospice is designed to be supportive. When hospice is involved, families and friends assume the responsibility of caring for their dying loved one. The hospice team offers guidance and training for giving medications, along with other daily tasks. But it’s the family/friends who handle the round-the-clock care. A nurse visits, usually several times a week. Others—chaplains, home health aides, social workers—vary in their frequency, depending on the patient’s needs and requests.

Families often must consider hiring caregivers for additional support.

If there is a pain crisis, the hospice benefit includes “continuous care.” A nurse stays with the patient until the pain is managed. There is also “respite,” where a patient can be cared for in skilled nursing facility (or the hospice’s facility, if they have one) for up to five days.

Please, remember, families take the lead for the 24/7 support of the loved one.

#7,8,9,10, 11, 12, 13 – Your ideas are . . .

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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  1. No, the hospice nurse DOESN’T visit “several times a week”. Normal , routine care is 1 , maybe 2 visits a week, under most circumstances. Sometimes daily visits are needed , but that is rare. We do come more often if needed, and at ALL hours and weather ( ok, not driving in hail) but the family should be taught how to and provide most care.

  2. We wasted a lot of time looking at Hospice places available, when we could have just taken my husband home. (Where he wanted to be). You can do hospice at home. Not very clear in the article.

    • Lolly:

      First, I am so sorry that you “wasted” time as you tried to do the best to care for your husband. Second, I do appreciate your feedback.

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