My father-in-law had two encounters with cancer over the three years he lived with us. The first was managed by radiation. When the tumor showed up in essentially the same place (his throat) a second time, our family concurred with his physicians that hospice care was the best option, since he was not a candidate for chemotherapy and the tumor could not be eradicated through radiation alone.
I don’t recall precisely the date Dad became an official hospice patient but it was in early 2017. Despite the fact that he was a hospice patient for months, it didn’t seem that people fully understood that he was under hospice care until he moved into the Hospice House June 27.
Because I have observed that there are several misconceptions about hospice, here’s my attempt to bring accuracy to three of them.
1 – Hospice is not always a brick and mortar place
Dad was officially a hospice patient starting sometime in February 2017 (I think). However, he still lived at our house until his move to Hospice House June 27 prior to his death on July 2.
He was not alone in being a hospice patient receiving treatment at home.
Although many of us associate “hospice” with a specific building where the patient spends their last days, the majority of patients receiving hospice care (58.9% according to data from the National Hospice and Palliative Care Organization) do so at their own home, with 31.8% getting care at inpatient facilities and 9.3% rounding out the figure at acute care hospitals.
Why this matters: It seems that people (and maybe it’s just my perception, but it’s a mistake I made before having a family member on “at home hospice,”) think hospice is primarily an in-patient facility. This leads to not understanding that your friend/acquaintance/co-worker with a relative “on hospice” may be living 24/7 with the stresses and needs of a terminally ill person. Although they receive medical assistance, some help with hygiene needs like bathing, music therapy and other volunteer interaction and provision of some durable medical equipment and medicines, it’s still, to an extent, all on them.
2 – Hospice is a business
This is another one that falls in the “maybe it’s just me” category regarding my understanding of how it all works.
Before having a family member on hospice (and seeing his Medicare bills), I had fallen into some gauzy idea that hospice is “nice” (which it is) and that it is primarily funded by donors (which it is not) and fueled by volunteers (which it is, to an extent – volunteers like Jim are indispensable both to the patient’s care plan and to the caregivers’ sanity).
According to the Kaiser Foundation, about a quarter of traditional Medicare spending (between $23,181 and $43,353 per capita depending on age) for health care goes to beneficiaries ages 65 or older who are in their last year of life. Hospice makes up roughly 10% of Medicare spending.
Debt.org says Medicare spent $13 billion in 2010 on hospice care, averaging $10,700 per patient. .
Why this matters: This matters for a number of reasons, but here’s an example of why it matters drawn from my experience. Dad qualified due to his hospice status to have someone come and help him bathe several times a week. As his illness progressed, the activity changed from assisting him with getting to the shower and taking the shower, to sponge baths in bed.
One day, the aide did not arrive to help Dad with his shower.
I notified hospice.
The aide (a regular who had been to our house multiple times) called and insisted she had indeed come and he had refused. (Refusing was not uncommon — but the point is she had not come.)
Because I work from home, and my work space at the time was about five feet from Dad’s chair, I knew it was impossible that she had come and been refused. I said, “do you mean to tell me you walked in, tried to get him in the shower, and he refused while I remained oblivious?”.
Aide: “oh wait I remember — I got sick and couldn’t come.”
I can’t confirm whether she billed hospice for the visit or not, but I also can’t confirm she did not.
It was not an issue of someone doing a nice thing for Dad failing to show up (that I could have forgiven, of course). It was an issue of the fact that it costs Medicare a certain fee for her to come (and she gets paid).
Accountability matters. When it comes down to it, our taxes are on the line here.
3 – The Medical Care Economy is Complicated
When my mom approached (unbeknownst to us, in a way) the end of her two-month medical crisis in February, she was in ICU. My father was presented with the option of “putting her in hospice.”
I was not present for the discussion (I wish I had been), but I was an advocate for the hospice option. Apparently I believe the myths myself, because I pictured her in a facility similar to Dad’s situation — a lovely place with freedom for the family to spend time 24/7 with the patient and a different philosophy about end of life than a hospital has.
Turns out, she was put “on hospice,” but although that meant a change in her treatment plan, it meant she stayed right there in that ICU bed. Hmmm.
I’m not a medical economist, but I have to admit not being surprised when someone who had worked extensively in hospice and hospitals said, “hospitals don’t want people to die for accreditation reasons.” It would be very complex to unwind this, but it’s tempting as a layperson to say “surely an accreditation agency would understand a patient with a fatal condition dying.”
I do think my mom’s transition to “hospice” was necessary because there were related changes in how she was being treated that resulted in a more dignified end.
But I still have lingering questions about why it mattered (if it did) to the hospital to be able to change the coding sent to Tricare to “hospice” rather than “inpatient ICU.”
Why this matters: As our population ages, the boundary between traditional hospitals and hospice care seems certain to continue blurring. We may not see the financing details, but behind the scenes, they make a difference in how policy plays out and how our loved ones are treated.
To further explore one angle of this issue, the book And a Time to Die: How American Hospitals Shape the End of Life looks interesting. Here’s an excerpt:
…although most people die in hospitals, hospitals are not structured for the kinds of deaths that people claim to want. For example, Medicare’s reimbursement methods dominate what happens to the majority of hospital patients at the end of life. In its attempt to control spending over the last two decades, Medicare has systematically been eliminating its cost-based payments to hospitals and nursing homes, and hospitals are not explicitly reimbursed for providing palliative care. The institutional response to these cutbacks has been for nursing homes to transfer dying patients to hospitals to avoid the cost of intensive treatments, and for hospitals to discharge patients, once they are labeled “dying,” so as not to incur the cost of palliative care. Simply put, at this point in history, dying people are not wanted in medical institutions, and it shows. ~ Sharon R. Kaufman
The Philosophy Behind Hospice
In addition to the three myths that I recommend dispelling, the most important thing to understand about hospice is that it is (in addition to not being solely a “place,” being a business and being a complicated part of hospital financing) an entity with a philosophy that gives its patients dignity and a semblance of control over the end-of-life process.
There are several good explanations of the hospice philosophy, but I like the American Cancer Society’s:
The hospice philosophy accepts death as the final stage of life: it affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease, working to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered – it includes the patient and the family in making decisions.
Having a front row seat to a family member’s death experience, and being a part of the hospice process, deepened and revised my understanding of how to define hospice.
So many people say, “they [hospice staff/volunteers] are angels on earth.” I sure as heck don’t disagree (and owe a special enormous shout-out to our social worker, our nurse, the music therapy students, and our volunteer). They all had a part in helping Dad have as peaceful an end of life as possible and keeping us as a family somewhat sane.
In sharing these observations, my hope is that the general public understands hospice a little better (and can have a more accurate picture of what it is when they are consoling friends/family members who are part of a hospice process).
I also think accountability is critical, and an understanding of the business underpinnings behind it all. Our taxpayer dollars are at stake, and our loved ones are too busy doing the sacred and essential work of dying to be able to intervene.
Wife of one, Mom of two, Friend of many. My pronouns are she/her/hers.
Jon Mertz says
Paula, Good thoughts to consider. I see the end of life conversations change to being more open and, ultimately, having a better quality of life. In my experience, hospice care simplified many of the insurance and care experiences. Hospice is about care and, as with any service, it is depending on all involved to be centered in humanity. An added care element to hospice that needs to be explored and embraced is palliative care, an important element for better quality of life and end of life. Thank you for sharing your experiences. Jon
Paula Kiger says
Hi Jon. Thank you for your comment. It’s an important point about palliative care, and I have to admit I need to do more research to give it its due. I wish there were more of a continuum — and as you say being centered in humanity is a key to making that happen.
The Hellion says
I know it really helped my mother…and the people who helped her at the end were so compassionate..and I might add, she was not the easiest woman to be around sometimes…but their compassion was never ending…
Paula Kiger (@biggreenpen) says
True for us too. I’m really glad you had that resource and reassurance.
Paula this is a great reference and eye opener to those familiar or not with hospice. My Mother was living in a nursing home and we were thrilled when she was put on hospice because it meant another set of eyes to check on her since my sister and I do not live close and neither of us liked the doctor at the home. Once on hospice the doctor was not the point person for her care but the hospice nurse. They were nurses at my Mother’s nursing home.
Paula Kiger (@biggreenpen) says
That’s definitely an important point. Hospices nurses have their own special commendations they richly deserve. I am glad that was available to your mom.
b+ (Retire In Style Blog) says
Excellent information. There is nothing like listening to someone that has had the experience. Thank you.
Paula Kiger (@biggreenpen) says
Thanks for dropping by and reading!
Paula – you are so right. There is so much you don’t know until you go through it. My Dad was on hospice in his assisted living center for 6 days before he died. Our experience with this was wonderful. But don’t even get me started on the rehab hospital prior to that and how they kept him and did not report his condition accurately so they could charge Medicare…If I knew then what I know now!
Paula Kiger says
It’s all daunting (the administrative pieces, the Medicare, the occasionally unethical practices, etc.). I am glad his end of life was handled in such a dignified way. It really matters.