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It’s early July, and so many of us are working with new trainees: fellows, residents, interns, medical students, nursing students…any kind of trainee. Last year at this time I wrote a post about explaining palliative care to patients and their families, this year I thought I’d write about how we explain hospice.

 I’ll put myself out there first and look forward to reading how others approach explaining hospice in the comments.

My general explanation about hospice starts out with the experiences and perceptions of patients and family.  I usually ask something like: “Have you heard of hospice?  Tell me more about what you’ve heard.”  I try and respond to that, addressing experiences and misperceptions, and somehow work toward a statement like the following:

Hospice is both a concept of care and a benefit.  Let’s talk about the concept first.  

Hospice is for people with serious illness like yourself who want to focus on quality of life.  The primary focus of hospice is on helping people to live each day as good as it can be.  

People in hospice have generally made a choice to focus on living at home, whether that be in the community, a nursing home, or a residential hospice home.   While people on hospice are occasionally admitted to the hospital, the general preference of patients on hospice is for receiving all care in their home.

Hospice is also a benefit.  Medicare (or the VA in my case) pays for hospice services to you for free.  Hospice services are delivered by an interdisciplinary team of doctors, nurses, social workers, chaplains, and volunteers.  Hospice provides outstanding and expert care for persons with serious illness like your self.  They are the experts in treating pain and other symptoms, and in helping address your financial and spiritual concerns.

It’s important to recognize what hospice can do for you, and what they can’t do.  They will generally send a nurse to see you in your home for an hour or so two or three times a week.  A social worker and chaplain will visit with you to provide support.  Someone may come to sit with you so that your wife can take a break.   Hospice is available by phone 24 hours a day, but is not able to provide 24 hour care for days at a time.    

That’s an approximate version of how I explain hospice, and how I teach trainees to explain hospice.  I think it’s helpful for them to hold on to the general structure of hospice being both a concept, or philosophy of care, as well as a defined benefit.

I think it’s also important to convey a sense of what hospice can and cannot provide for patients.  For example, I have many patients and family members (and trainees in July) who believe hospice will provide 24/7 nursing care.

Note also that I avoid some of the language about “hospice is for people who have gone through every curative treatment imaginable and are finally exhausted and ready to die.”

In part due to such perceptions about hospice, the word hospice can feel like a “loaded term.”  One of my mentors during fellowship used to reverse everything I just did in an attempt to avoid the baggage people sometimes associate with hospice.  Before mentioning hospice, he’d say something like:

There is a service that focuses on keeping you as comfortable as possible after you leave the hospital.  They provide home nursing services that provide expert pain and symptom relief.  They have social workers and chaplains that can visit with you.  They are available by phone 24 hours a day 7 days a week.  

Does that sound like something you’re interested in?  

Yes?  Great, that service is called hospice.

Sometimes this technique backfires, and the patients and family feel they have been tricked into agreeing to something they’ve heard about and view very differently from the way it’s described (Gotcha!).  I have to say, however, that the way this mentor did it was seamless, and accomplished the objective of matching treatment to patient goals first, then dealt with the misperceptions later.

OK – let’s hear it – how could my explanation be improved?  How do you explain hospice?

by: Alex Smith

This Post Has 15 Comments

  1. I am a hospice nurse on an 18-bed inpatient unit. I am not the one to "present hospice" but I find myself caring for many with a dismal prognosis, insistent on being full-code despite MD/NP efforts to explain the philosophy of hospice and how it might be a benefit, rather than a burden. How it may enhance and enrich the quality of life instead of diminish it. This can be frustrating on both ends, for there are many hands in the medical maze pot, and patients often get confused about what’s truly in their best interest. Having been an educator in end-of-life care, I concur with you Alex; we must always begin with where the patient is (emotionally, financially, physically, spiritually, and situationally), and glean through inquiry what is understood about his/her illness, treatment options, etc. We must help our patients define their own goals of care in a realistic framework. This takes time. I find that “conversion to hospice” is a process and for some, it may take repeated run-ins with futile care to truly listen to what hospice is and what we have to offer. I can’t begin to tell you how many times I’ve heard “If I only knew what hospice really was, I would have considered it much sooner,” or “this is the best care I’ve ever received in a hospital.” Despite our efforts, too many patients and their families still view hospice as “giving up” and palliative care as “I’m going to fight this to the end.” Those who have had a prior positive experience with hospice generally are more open to dialogue. Fear of death is a powerful motivator, and it can move us in directions that in retrospect we shouldn’t have gone. Having control over choices that best serve us, and aligning with those who will help facilitate those choices, is what’s important here. In that light, death can truly be embraced with dignity.

    My suggestions would include:
    1) Always sit down, don’t hover over the bedside and talk “down” to the patient. Be 100% present.
    2) Allow adequate time. If you only have 5 or 10 minutes, it probably won’t be enough time to have a meaningful dialogue.
    3) Remember that trust builds on every encounter. Listening and responding to patient and family concerns with starts from the first encounter.
    4) Begin with what the patient understands, help ferret out concerns, and help to establish goals of care.

  2. I'm a hospice and palliative medicine fellow just finishing my fellowship year. I've tried several different approaches to this, and I'm sure I'll try several more. I really try to emphasize what hospice is – a team that is focused on providing care at home with a focus on maximizing quality of life – and what it isn't – 24/7 care akin to acute hospital care. I believe hospice is the right fit for many but not for everyone and I do attempt to avoid feeling like I'm trying to "sell" hospice to the patient. That said, I'm proud of the type of care that hospice provides to patients. I find it really gratifying when I work with patients who do benefit from hospice and are able to have a natural death, which I think is in accordance with many people's goals.

  3. Is it not true that a lot (the majority?) of hospice care is rendered in nursing homes? That should be addressed in your introduction as well as the original concept of hospice care in the patient's home.

  4. Is it true that hospice care requires patients go give up antibiotics and other life-saving treatments? ACA creates a pilot project where patients don't have to make those either/or choices, which can also create aversion to hospice care.

  5. As a hospice physician, I see hospice patients shortly after admission and follow the same general format.

    After a quick introduction and assessment for any acute problems, I start off sussing what patient/family understand of disease, disease progression by having patient/family walk me down a timeline of illness which eventually leads to something along the lines of "how did you hear of hospice, how were you referred to hospice, how did you decide to start with hospice, what did they tell you about hospice"

    I get a variety of responses from "doctors say nothing can be done" to "we don't really know what hospice means" to "I just want to be at home comfortable"

    From there I can tailor my explanation by asking "how would you like us to help" and describe how hospice can and can't help. During this time I try to clear up misconceptions of hospice and build rapport.

    When I get patients whose goals are totally inconsistent with the philosophy of hospice yet are on hospice, I take the opportunity to describe the philosophy of hospice and hospice as a benefit, and how one qualifies to receive benefit (then get into prognostication as appropriate) then basically due a risk/benefit analysis to make sure goals/treatment preferences are matched.

    Thanks for the post Alex. An important topic.

  6. Thanks Alex. This is a very important topic. There is also the additional challenge of explaining hospice in the setting where "accepting" hospice is viewed as a means of obtaining/maintaining housing. For example, obtaining an inpatient bed in a county run hospice facility or VA hospice program, or being able to stay in a RCFE (assisted living)under California title 22. In some cases, the assisted living is their home, but they can't be allowed to live there until they die unless they are formally enrolled in hospice, because they have a "restricted medical condition".

  7. I agree with the general principle you follow but differ in one key area. I stress to patients and families that the philosophy of hospice is in emphasizing quality of life in patients with a terminal illness. I explain that the cut-off used in the US is 6 months, that no one comes around to "terminate" hospice patients that survive 6 months. I express my regret that most people do not get the full benefits of hospice because they wait too late, reinforcing the popular misconception that hospice is for the very end. While I do not dwell on dying, I make it a point to talk about the fact that hospice is for people who have a disease that will eventually take their life, who have come to terms with it and wish to focus on living out whatever time they have left with the highest QOL.

    To the anonymous questions earlier in the thread: No, majority of hospice patients live in their homes (or friends/family) than live in nursing homes. Also, no to hospice taking away antibiotics. What antibiotics and how they are given (oral/IV) and for what indication are all case-by-case depending on the hospice, its resources and patient specific criteria.

  8. I am an Oncologist and
    Hospice Medical Director. This creats an internal tension between the wish to aggressively attack the unwanted cancer to offering a comfortable end of life surrounded by family at home. My challenge is how to slowly pass along this continuum with my patients and families. I always focus on having choices to offer from the beginning to the end. At the beginning that may mean chemotherapy choices and at the end pain control with a choice of varying degrees of sedation and constipation. Another critical feature of promoting hospice is to explain clearly that their physician will continue to be an integral part of their care.

  9. I think your explanation is superb – living each day to the best, and fullest it can be, given the reality of the health situation. Great post. This is a tricky subject to talk about – My wife and I had to delicately discuss how to approach her mom about this when she was declining in health. She passed before we got to that point, but the topic was difficult to get our heads around in words.

  10. Since, I myself is in the medical field and specializes Alzheimer care. So, Hospice Care is a great deal to give to these patients.
    For me Hospice care is a philosophy or approach to care rather than a place. Care may be provided devoted to end-of-life care.

  11. When explaining hospice for over 15 yrs. I still always start the same way, I hear their story. This of course can take quite a bit of time, since they have gone through so much. I understand they are not ready, and I tell them even knowing what I know, being in your shoes, I would never give up hope. I tell them it's ok to be scared, and ask them questions about what they know in regards to their disease process. It is sad many times for them when for the first time they realize they cannot go home alone, along with the services hospice provides, a nursing home or extra paid help will be quite expensive. I want them to fully understand choices, now…and along the path. I let them know I will be there holding there hand and supporting what decisions they make along the way.

  12. I am a Geri/Pall physician in the VA. I present hospice in a similar fashion- first assessing the goals of care, then lead into a discussion about what kind of support they want in the home. But I bring up hospice by adding a statement such as "Many patients who feel the same say you do- wanting to spend time out of the hospital, in their own home, focusing on quality of life for whatever time they have left, choose to get enrolled in a program called hospice." I find pt's and families are quite receptive to this approach, although some are surprised to learn that hospice can really help support their goals.

  13. Gotta Question my grandma was recently told by the Dr. that it may be time to call in hospice, I have always heard that Hospice is for end-of-life care, but my aunt (g-ma's daughter) is trying to tell me that that is not what hospice is for anymore she says that it is for that but it is also is for home care simular to a live in nurse minus the live in part.. Just trying to get a clear understanding of what Hospice is for, have they expanded into more than just an end of life care or is it still based on end of life care…
    P.s I do understand that end-of-life does not mean she is going to pass away today 1 week from today or even a 1 year from today just want a clear understanding. When Hospice is called in or the patients are told to call them in does that mean end-of-life is near???1

  14. Dear anonymous,

    Thank you for the excellent question (sorry for the delay in response though). Hospice is a model of care for people facing a life-limiting illness. The focus is in maximizing the quality of life that someone has for those individuals who a physician believes is near the end of life. At least this is how it is defined by Medicare, Medicaid, most private insurance plans, and other managed care organizations (the requirement is that a physician must certify that someones life expectancy =< 6 months if the disease runs its normal course). This doesnt mean that someone cant stay in hospice longer than 6 months. Indeed, there is a growing amount of evidence to suggest that those receiving care focused on symptoms may actually do better than those who don't, so hospice may actually prolong life.

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