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Sorting Out the Confusion Between Palliative Care & Hospice Care

Do you understand the differences between palliative care and hospice care?

If you’re unsure, you’re certainly not alone and even people who do understand the differences, don’t always properly distinguish between them for the rest of us.  As a result, confusion continues.

I must admit my knowledge about both was limited until my mother was hospitalized in 2008 due to her rapidly progressing metastatic breast cancer. During her stay at Mayo Clinic’s St. Mary’s Hospital in Rochester, Minnesota, I vividly recall when a palliative care information team entered her room one afternoon to discuss it. My mind immediately jumped to hospice care – this must be the end. My next leap was – get out! What I did actually say to them I have no idea, but I do remember initially sitting there stewing…

So yes, even an esteemed institution such as Mayo Clinic did not initially provide the best explanation to my family about the differences between palliative care and hospice care. Or maybe it was just me. Admittedly, my mind was in a fuddle at the time. And I realize now that we could have certainly used a whole lot more guidance regarding palliative care a whole lot sooner. But you know what they say about hindsight…

I’m not sure why there is still so much confusion about palliative care vs hospice care because they are quite different, though of course they are intertwined as well. Hospice care always incorporates elements of palliative care, but hospice care is certainly not always part of palliative care.

Part of the problem is that so often the two are lumped together. For example, very often you get handed information about palliative and hospice care in the same brochure. This is fine if the distinction is clearly made, but too often it’s not. Why does it matter? Well, because not understanding or misunderstanding about the differences might inhibit a person from seeking out either. And that’s too bad.

What is palliative care?

  • The goal of palliative care is to help improve a patient’s quality of life by helping her deal with symptoms, discomfort and/or stress of her serious illness. Some of these issues (but not only these) include:  pain, fatigue, shortness of breath, nausea, bowel issues, sleep issues, lymphedema, and emotional stress.

  • Many illnesses may warrant palliative care, not just cancer. Others (again, not just these) include heart disease, lung disease, kidney failure, diabetes, dementia and HIV/AIDS. Any health condition that is seriously interfering with your day-to-day quality of life should qualify.

  • Receiving palliative care does not mean the patient is on her deathbed. Again, it’s about comfort care and support. I believe palliative care options should be discussed with every cancer patient as part of cancer care protocol.

  • Receiving palliative care does not mean a patient’s regular medical treatment has ended. A patient can receive both types of care simultaneously.

  • Palliative care can be delivered by any doctor, as well as by others on a patient’s medical team, but of course, the best option is to receive it from a physician or other professional who has been specifically trained in delivering palliative care. As usual, there’s lots and lots of disparity in this area as well.

  • Palliative care is available (though of course, you’ll probably have to ask for it) at any point in a patient’s illness – upon diagnosis, throughout treatment and beyond. And palliative care can be offered for a patient of any age, even an infant.

  • Palliative care can be delivered in a clinic setting, hospital setting, at home or in any extended-care-type facility.

  • Often palliative care is given using a team approach utilizing the skills of any combination of doctors, nurses, dietitians, psychologists, physical therapists, social workers and others deemed possibly helpful. Every situation is unique.

  • Palliative care is covered by insurance, Medicare and Medicaid.

To learn more and to find a directory click here.

What is hospice care?

  • Hospice care is for the patient at the end of his/her life. Generally hospice care is offered when life expectancy is six months or less, but there is flexibility for obvious reasons.

  • The primary goal of hospice care is the same as for palliative care – providing support, comfort and relief from pain and other symptoms. Family support is a huge component of hospice care as well.

  • Again, usually hospice care is a team approach with individualized care to meet the needs of each patient and family.

  • Hospice care is covered by insurance, Medicare and Medicaid.

  • Generally, active treatment for cancer, or whatever the illness is, ends or significantly lessens in aggressiveness.

  • Hospice care is often delivered at home, but can also be given in a hospital and other various care facilities. (regrettably, this is something I did not fully understand).

So those are the basic differences between palliative care and hospice care. If I’ve missed anything, please feel free to point it out and I’ll do a little editing. For further information on hospice care click here.

Palliative and hospice care are very important options for a highly specialized kind of care. It’s essential to understand the differences so you can utilize them for yourself or a loved one if and when you ever need to. They are also two more areas where self-advocacy or advocacy via a care giver is absolutely vital. You will need to speak up and speak out when necessary.

As it always should be, there’s no need to suffer in silence.

And as a patient, or as a family member, there’s no need to go it alone here either.

Are you, or have you ever been confused about the differences between palliative care and hospice care?

Do you have personal experience with either type of care and if so, do you have anything you’d like to share about it?

Has incorporating palliative care ever been discussed with you at any point during your cancer treatment?

 

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image via mdanderson.org

 

26 thoughts on “Sorting Out the Confusion Between Palliative Care & Hospice Care

  1. This is SUCH an excellent and important post! You are right there is great confusion and misunderstanding about these services. You’ve done a wonderful job of articulating the differences. Thank you!

  2. It’s so good to read you distinguishing the difference, Nancy. Thanks for this clear resource – I’ll be sure to share it with our community!

    (And I only knew the difference between of having spoken at a palliative care conference once. Otherwise, I’d probably have no reason to understand differently.) ~Catherine

    1. Barb, There is a lot of confusion about these two topics. And it’s really important to know that palliative care is available as an option for any cancer patient at any stage. Thank you for reading and for your feedback too.

  3. The first time I was hospitalized after my diagnosis, I was shocked to be wheeled into the “Palliative Care” ward. I was scared that I was sicker then I thought. But it was just the cancer care ward. Still, I had to warn my family before they visited so they wouldn’t be scared too.

    Here in Ottawa we have terrific palliative care practitioners. I am fortunate to be treated at the Pain Clinic. We also have a Psychosocial unit providing counselling, support groups, nutrition courses and other thing. I simply can’t say enough about our Cancer Centre.

    1. Kate, Yes, I bet that was rather shocking and extra scary until you understood things better. It’s wonderful that you have access to such terrific palliative care practitioners. And it’s wonderful that those other services are readily available as well. There is so much disparity here with all things healthcare. This is one more area… Thanks for sharing.

  4. We have similar care here in Calgary as Kate does in Ottawa. I feel very fortunate for living here. But there are always missing pieces and I think this is certainly one Nancy…

    The first time I heard the word palliative during my cancer was when just last year, four years after first dx of stage III… when my oncologist introduced me to my palliative care practitioner. I wanted to tell her to go away, I wasn’t near death quite yet. I totally associated palliative care with end of life and hospice.

    My understanding now is that I’m undergoing constant palliative care because stage IV is incurable. Which means that no matter what treatments I’m in, chemo, AI’s, surgeries, pain management, ongoing or intermittent, they are palliative care treatments because they can’t treat to cure the underlying cause of this stage of the disease. Finally made sense to me when I wrapped my brain around it. Even an aggressive course of action, which I’m currently undertaking, is considered to be palliative, to give more life… not to cure the disease.

    Thank you Nancy, I enjoyed this article. I just this week had to do the final brain wrapping around this issue. Timely. 🙂

    1. Carolyn, Yes, you have an awful lot to “wrap your brain” around and you make a good point about your stage IV being an ongoing kind of palliative care. It’s also interesting that your first reaction when introduced to your palliative care practitioner was ‘go away’ – much like mine was, as I mentioned in the post. It’s too bad when palliative care gets associated too closely with hospice care. I’m glad you enjoyed the post. Sometimes it must feel like your brain can’t wrap itself around yet another thing… Thanks for sharing.

  5. Both of my parents passed away under hospice care. It was a blessing, it allowed them to pass without the fear and pain that they were beginning to experience. I don’t have experience with palliative care, but am aware of it and would take advantage of it if I felt the need in my future. Great post which will help others navigate the ins and outs of our medical system.

    1. Claudia, I’m glad your parents were able to have access to hospice care and that the experience for all of you was a blessing. How wonderful at such a time. And yes, understanding options that are available is so important. Thanks for reading and commenting.

  6. Thanks for helping me learn the distinction, Nancy. I wasn’t familiar with palliative care, and my doctors have not discussed it with me. I do take medications to relieve pain from side effects, but I don’t know if that is really the same. I really appreciate the resources and time you put in to educate your readers about these important distinctions. XOX

    1. Jan, If your doctors and others are helping you manage pain and other issues that you are having, then yes, I’d say that’s palliative care. Maybe they just haven’t used that terminology for whatever reason. Thanks for reading and for the lovely comment. xox

  7. I didn’t know the difference. I don’t think I’ve paid attention to people using the term palliative care before. Like you said in reply to Jan, I think sometimes the term palliative care just isn’t used.

  8. dear Nancy,

    you have done a great service by posting the distinctions between palliative care and hospice. and believe me – many of us who’ve worked in the hospice arena for a long time were also stymied by the introduction of palliative care! in my experience with hospice work, it never meant a direct go to one’s death bed. it was for any life-limiting disease, and could be accessed with a physician’s cerification that the patient’s condition was such that there was most likely a life span of 6 mos. or less. during that six month period, there was always ongoing assessment – severe illness rarely follows a straight downward line on a continuum of decline (just as wellness has it’s up’s and it’s downs) and indeed, with hospice services, we often found patients improved, especially with pain management, support for the patient and their family, increased mobility,etc. – and those patients, not showing any further decline often signed off hospice – to go back to work or travel or do whatever they wished. and there were many patients who heard about newer treatment options and wished to pursue them. in these cases, they too signed off hospice with the understanding that if their disease progressed they could again come back under the care of hospice. I think palliative care was put into place so that interventions as I mentioned – better pain management, helping to increase stamina and mobility with physical therapy, more appropriate nutrition, emotional support and helping to access all options prior to hospice care could be utilized.

    I think the reason it has been so very confusing has been the issue of “turf” – which is often the case when “newer and better” collide with traditional modalities. it wouldn’t surprise me at all that at the confluence of palliative care and hospice, some clinicians felt some infringement upon their expertise, and when clinicians are confused and wonder what the point is of anything newfangled, those attitudes trickle down and affect and confuse patients. I do believe, however,that palliative care has found it’s rightful place, and that hospice care is much more accepting, indeed, now partnering with palliative care to assure a more fluid and comprehensive approach to caring for patients – especially since there are now so many diseases that have been deemed, “incurable but treatable”.

    much love and light,

    Karen xoxo

    1. Karen, With your hospice work experience you have a unique vantage point here, so thanks so much for sharing your insights. I hadn’t really thought about that “turf” angle. It’s sad, to think that could be behind some of the confusion. Collaboration almost always works best for any patient in any situation, so I’m glad you feel there is more partnering happening in this arena now. Thanks much for reading and adding to this discussion.

  9. Thank you, Nancy, for such an informative post. The two are often confused, and I admit I had been confused about the two a few years ago. Being in this online community has helped sort out the confusion. Medical institutions and brochures don’t often explain the differences clearly, if at all.

  10. My Oncologist told me when I first began this entire thing that I qualify for Palliative Care and up and until there is a change in my condition Hospice will be automatically available. For me Palliative care is having my port flushed at home, I still have a home care nurse come visit She will do an update if there are any changes in my physical condition If I require anything for example a bath rail will be provided etc. We’ll do an inventory of my meds . I find the whole idea of palliative care reassuring…I feel we are very fortunate to have these services available to us…It takes a lot of stress off family members who would be our care givers…. Alli xx

    1. Alli, Your healthcare in Canada seems to really get stuff right. I’m glad you’ve always been aware of and had access to quality palliative care. And you are absolutely right about access to this kind of care relieving stress for not only the patient, but her family as well. Great point. Thanks for sharing.

  11. Thank you for your clear and understandable explanations.
    I do have a question.
    If I understand you correctly, anytime we are given treatments specifically to enhance quality of life issues caused by cancer or our cancer treatments, that would fall in under palliative care, even if they do not use that term. Is that correct?

    1. Elizabeth, I would say that’s correct, but of course, I’m no expert. When there are symptoms directly impacting your quality of life and you seek out solutions, you are seeking palliative care. And such care should be available to everyone upon diagnosis. It’s not just for end-of-life issues, which is still what many people think of when they hear the term. Thanks for reading and commenting.

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