Hospice care is the sort of care that we get when we are on our last legs. Most of us know that.
But what hospice care truly is, once you dig into it, is quite surprising to a lot of folks.
This piece aims to fix that. It talks about hospice care from a lay perspective, and it also, at the end, addresses some of the wonderful things that can come about via hospice care. It’s not an easy thing to be part of, but it most assuredly can be a wonderful thing to be a part of.
I have learned this stuff over a few years, and today I was part of a hospice conversation involving my family, so it is all very fresh right now . . .
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Hospice care is care that our loved ones (or ourselves, for that matter, but here we’ll talk about loved ones only) can receive when they are no longer trying to improve their medical situation. You can think of it as the time period after our loved one has decided not to fight any more — has decided to let things take their course, with assistance from a full-fledged medical and nursing team to help the loved one have a great exit from this mortal plane, but otherwise to allow things to play on through.
So all the Dr. House sorts of doctoring — where the doctor heroically brings someone back from the brink of death to go on to live a normal life — is off the hospice table. Dr. House is not in the room, let alone at the table. That means no surgeries, mostly no fancy wiz-bang technology stuff (MRIs, etc.), and, in general, no aggressive this that or the other thing, etc.
Instead, hospice care is about maintaining the comfort of our loved one, and about doing whatever it takes to ensure that our loved one has as excellent a quality of life as is possible, given the circumstances.
The precise language of this, as I understand it, revolves around the distinction between medical care and palliative care. Medical care seeks to reverse disease and rectify physical problems. Palliative care revolves around treating the symptoms of disease and physical problems, so as to increase quality of life and comfort.
Hospice care includes tons of palliative care, but only small parts of medical care, and by and large only those sorts of medical care that are incidental to the palliative objective (there are always gray areas).
So does that mean that it is all about the last few weeks of our loved one’s life?
Allow me to get technical here for a moment, in terms of paperwork and in terms of the noses (pronounced NO sees, and being the plural of nosis, as in the end of the words diagnosis and prognosis).
Technically, hospice care can last for years and years and years. But at the paper-filling-out level (there is a lot of that when it comes to the medical world, isn’t there?), hospice is all about a doctor signing off on our loved one having a life-limiting diagnosis with a prognosis of six months or less. Less fancifully, the beginning of hospice is all about a doctor signing off on your loved one being really, really not well, and stating that the loved one is not likely to see more than another couple of seasons at most.
As I understand it, that time frame is broken down further into 90-day chunks, but also that you can have doctors sign off on multiple six-month prognoses, so that it is possible to receive hospice care for years — though not likely, given that each time your loved one re-ups for hospice care it involves a doctor looking your loved one over and the doctor then putting his or her professional opinion in writing that your loved one t’ain’t long for this world.
The main reason I’m writing this piece is to talk about this particular misconception of the hospice world. Nearly universally, people think that hospice is some kind of a service provided by someone or other and that there is only one hospice in your area. That is not true.
Hospice providers are independent entities that specialize in providing a certain kind of care — hospice care — so there are lots of them and they compete. This is the U.S.A., right!? And we like our medical world to be full of profit motive and market forces and survival of the fittest (however all of that is defined in this most unique of contexts . . . ), don’t we?
Not all hospice providers are created equal. My first experience with hospice was about six years ago tomorrow (as I just now realize . . .), and, other than the nurse, who was totally great and wonderful and kind and helpful and knowledgeable and everything you could ever hope for, I’m sorry to say that the company she worked for failed at doing everything it was supposed to do. That company was a joke and a nightmare (a wicked recipe, that), and as I understand it, they might have lost their license and gone out of business (if so, I’ll bet dollars to donuts that the nurse ended up working for a better company).
So when you first start walking down this path, please talk to those you trust and who know something about hospice and/or have experience with hospice, and please also do some looking online too to make sure that you are getting the best hospice provider you can.
Here I have to narrow the discussion to older folks because that is what I know about — people who are 65 or older and on Medicare Part A. Medicare Part A is the part of Medicare that covers hospital costs. It’s the part that everyone gets as a matter of course, as opposed to the other parts (Part B, Part D, etc.) which you have to fill out paperwork to receive (yes: when you turn 64 or so, you should start studying up on this, and if you get your medical insurance on your own and not through an employer, you doubly should start doing your homework on this stuff).
So . . . hospice care is covered, big time, by Medicare – Part A, as I understand it, and regardless of whether your loved one is at the hospital or in an assisted living facility or a nursing home or at his or her home-home. Details vary (this is a world in which complexity and nooks and crannies are very much with you at the table . . . ) (one example/sticky detail: if your loved on is on Medicare Part A Rehab at a Medicare Part A Rehab facility, then going onto hospice care might well convert you to private pay, which means that you will foot the bill for the rehab facility room, but if you have long term care insurance it might well foot at least part of that bill, etc., etc., etc. ). So hospice care can be the solution — or at least a partial solution — to a lot of financial difficulties people have providing long term care to their loved ones.
Ever since my experience with the death of a loved one six years ago tomorrow while she received hospice care, I have been drawn to the idea of righteous death. The idea here is that some of us will be lucky enough to be part of ushering our loved one into the great unknown in a way that occurs in as wonderful a way as the trip from here to there can possibly occur for our loved one.
There comes a time, after all, when it’s best to leave the party, yes? Hospice, well done, increases the likelihood that our loved one, when the time comes, will have a righteous death.
Six years ago we were lucky: our loved one had a 100% righteous death (we shielded her well from the failures of the hospice company, and she loved her hospice nurse). It was one of the most wonderful things I have ever experienced. I will never forget it, and the memory of that time very much adds to, and in no way diminishes, my memories of my loved one.
I still miss my mom-in-law. She was truly wonderful. And it would be fantastic if my also-wonderful wife still had her truly-wonderful mom. It really was a loss. But given the choice between a righteous hospice-assisted death and an I’m-going-to-fight-this-disease-tooth-and-nail-until-the-very-end sort of death (even if it kills me?), the choice seems like a total no-brainer to me.
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I close with a word of caution: I did not verify any of this info. It is top-of-mind. And raw. I think it is all accurate, but it might not be.
The resources available to us for learning about caring for our loves ones tend to be hard to understand: jargony, full-of-tree and lacking-in-forest, and fairly often quite sales’y. Hopefully my lay view here can be helpful to you.
And anyone out there knowing more than I do, please, if I’ve gotten something wrong, pretty please do let me hear from you and I’ll correct it.
Thanks John. Good advice to research hospice companies. We had a fabulous hospice experience with my mom's righteous death, thankfully. I think it's really helpful to have these issues front and center, so thanks for writing about death and dying and difficult conversations. Info is power, right?