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Sorting Out the Confusion Between Palliative Care & Hospice Care

Sorting out the confusion between palliative care and hospice care matters because they are not the same thing.

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 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’s St. Marys Hospital in Rochester, Minnesota, I vividly recall when a palliative care team entered her room one afternoon to discuss it.

My mind immediately jumped to hospice care – this must be the end. The next leap was – not yet, go away! What I actually said to them I have no idea, but I do remember initially sitting there stewing.

So yes, even an esteemed institution such as Mayo 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.

I realize now we could have 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.

There’s talk these days of changing the terminology. Some suggest that calling palliative care “supportive care” might be better. I think it might be.

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 two more areas where self-advocacy or advocacy via a caregiver is absolutely vital. You will need to speak up and speak out when necessary.

As always, 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.

Hopefully, this post is helpful in sorting out the confusion that persists between palliative care and hospice care.

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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Sorting Out the Confusion Between Palliative Care & Hospice Care #palliativecare #hospice #caregiver #caregiving

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Linda Boberg

Thursday 29th of November 2018

My father was under palliative from an organization that did both palliative/hospice care when he decided to not treat his Kidney cancer. Caregivers went to his home, gave him baths, provided nursing, and even sent a minister. His doctor said that he could live another 5 years when he was diagnosed so imagine how surprised we were when at 3 months he fell and went to the hospital where my sisters were told that since he was under hospice care, he should not be in the hospital and that all they could do was give him water until suitable caregivers were found for him. So did the hospital not understand palliative/hospice care? When my sister told the ER people that he was being treated by this organization, did they assume that he was under hospice care? The hospital nurses did not care for them; the hospice/palliative care nurses took over (and none of these people were happy about their roles). We'll never know since he died two days later. It is a confusing issue.

Nancy

Friday 30th of November 2018

Linda, Your experience is very sad. Hospice care can be given in a hospital setting, so the fact that particular hospital staff said your father shouldn't be in there is troubling. And all they could offer was water? Really? It sounds like there were some missteps all around and I'm sorry about that. I appreciate you sharing about your experience. Thank you.

Elizabeth J.

Tuesday 29th of July 2014

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?

Nancy

Tuesday 29th of July 2014

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.

EAK13

Wednesday 29th of January 2014

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

Nancy

Wednesday 29th of January 2014

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.

Beth L. Gainer

Tuesday 28th of January 2014

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.

Nancy

Tuesday 28th of January 2014

Beth, You're welcome and thank you for reading!

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