Dispelling 3 Myths About Hospice

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.

Hospice myths

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?”.

*****pause*****

Aide: “oh wait I remember — I got sick and couldn’t come.”

Sigh.

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.

Hospice myths

Wife of one, Mom of two, Friend of many.

155 Big Green Pen Minutes Day Eleven: Remember

I am participating in the 31 Days of Free Writes October challenge. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation. (Confession: I *may* not be able to resist spell-checking!)

Today’s prompt: Remember

I remember what was going on in this picture, taken in February of this year.

Jim, our incredible hospice volunteer, had asked me, “Do you think your FIL would want to ‘golf’?”

I really was at the point that I barely thought he could walk to the bathroom, much less “golf,” but I knew better than to throw out a negative. Therefore, I said, “you can try….”

Next visit, he showed up, club in hand. He patiently set up the scenario pictured here. He took Dad’s chair outside so he could sit when he got tired. He patiently walked him outside, down a set of stairs he never navigated anymore, and they “golfed.”

This is a picture I snuck from my bedroom to send to our family members so they could see (Dad was a HUGE golfer in his prime).

Here’s the thing — I have not called Jim, the stalwart of our Hospice experience as far as volunteers go — since Dad died on July 2.

I kept meaning to, then kept putting it off. And now I can’t find his phone number.

The last day we talked, he was leaving for a trip and I think we both knew in our intuitions that Dad would not be around when he returned from his trip.

But I want him to know:

I remember his incredible kindness.

I remember the mid-day naps I could take, knowing he was here — even the days he literally just sat in our living room because Dad was in bed — but it gave me the space to relax for a few minutes.

I remember how kind he was to the cats, giving them time to sniff him every time he walked in the door.

I remember how, when Dad asked if he had a yellow DNR form too, he said “yes.” (It was the only answer that would have worked, true or not.

I remember you Jim, and how you helped Dad take a “shot” at having a glimpse of normalcy and compassion every time you walked in the door.

(Editor’s note: I am going to make sure Jim receives this …..)

Writing Challenge

Wife of one, Mom of two, Friend of many.

12 Things I Would Do If I Didn’t Have to Work

Imagine this! Your life fairy godmother just waved her wand and *poof!* you can do whatever the heck you want to do with your time.

What do you choose?

Mama Kat suggested we blog about “10 things you would do if you didn’t have to work.” Before sharing my list, I must add two caveats:

First: I love working. There have certainly been things throughout my career that I did not love and did not do to the fullest of my capabilities, but in general I value being part of a team, contributing to a goal, making a difference. If I won the lottery, I suspect I would keep working in some capacity, but I would take advantage of the windfall to fit in a heck of a lot more of the things I am about to list.

Second: Up until May 2014, when I left Healthy Kids, I had always worked full time (with tiny breaks when I moved back to Tallahassee from NYC and my two maternity leaves). The whole time, I thought “I don’t know how I’m fitting this all in” and almost always felt like I wasn’t giving anything 100% because I was split so many ways.

Having been out of the traditional work force for three years, I can attest that (at least for me) it is true that “people who have the most to do get the most done.” When your day is unstructured, it takes an iron will to whip it into some kind of order. If I did not actually have to work, I absolutely know I would need to have some type of structure (probably in the form of work!) to keep myself together and prevent inertia. (This is why taking on a structured part-time job in January 2017 that, although it is done from home, requires my full attention from 6:45 am to 12:30 pm every day was a game changer.)

Here is my list of 10 (plus two bonuses), in relatively random order (paging Fairy Godmother STAT!):

Travel to Valencia, Spain

I took a Spanish course in college that was far above my fluency level. Ironically, I learned so much from this class — from being forced to keep up with a group composed mostly of native speakers. I am not sure exactly what it was, but something about Valencia piqued my curiosity and ignited a desire that has been in my gut for decades.

Personal Life Goals

Picture me here! That’s what I’m doing. Credit: Flickr user Bruno.

A Spanish Immersion Program

Perhaps this should be in the number one slot (but I would be willing to muddle through a trip to Valencia with my less-than-advanced Spanish!). No matter how many courses I take and how much practice I get locally, nothing replaces having to live with a language for its usefulness to language learning.

More Yoga

Arguably, I could do more  yoga starting … NOW! The minute I finish this blog post. But my list for today (besides the fact that there may well be a Category 3 Hurricane here within 48 hours) is lengthy. I have been to yoga once in the past six months, and I have missed its benefits … for my body as well as my mind. I’d love to buy an “unlimited” yoga card and use it without my mind reeling from the 1,001 other things I should be doing.

Personal Life Goals

More Aggressively Pursue Options for My Tachycardia

If you have been a reader for a while, you may be aware that I have multifocal atrial tachycardia, mostly exercise-induced.

Victor Martinez of the Detroit Tigers apparently has a similar problem (he has atrial fibrillation, which is worse (relatively) than my MAT). He is scheduled to have an ablation, and I hope it works (I was not a candidate for an ablation after my electrophysiology study in April 2015). It’s important to keep in mind what Terry Francona, the Cleveland Indians manager, who also had an ablation, said: “You’re talking about life, not just baseball.”

What would I do differently about my medical situation if I didn’t have to work? (Caveat: I’m sort of assuming that along with her dispensation allowing me not work, the Fairy Godmother gives me a bit of a blank check!).

My tachycardia issue has gone far past interfering solely with my running at this point. I need to find a solution.

The nurse practitioner at my appointment yesterday scheduled me for another check in four months and said, “you know, another EP study wouldn’t be the end of the world; the circumstances that prevented an ablation before may have gone away by now.” She’s right, but I hesitate to take the time off from work (the gig economy doesn’t come with medical leave).

But there are some additional avenues I have hesitated to follow. A friend with extensive personal experience has urged me (strongly) to get a second opinion from the Cleveland Clinic. She is right (and to be fair, my electrophysiologist said he would help me pursue a second opinion if it was important to me), but I hesitate, wary of the long list of diagnostics I need to send them and the price tag. Ironically, I would (and have) advocate to any friend to be their own strongest advocate for their health.

The past year of not running has (in some very small ways) revealed some qualities about life I had been missing (hello, Saturday mornings!), but good golly I miss running. I miss exercise endorphins. I miss my running community.

Clean My House

Yes, I have written before (as recently as last week) that I know myself well enough to know I need help to overcome my housecleaning inadequacies. BUT with a little extra time, I think I could master the basics.

Help at a Public School

In my mind’s eye, this means reading with elementary school kids, but I imagine there are some middle schools and high schools that could also use a caring adult to pitch in. There’s so much work to do — teachers are stretched frightfully thin and I would love to help relieve some of the stress.

Be a Hospice and/or Alzheimer’s Association Volunteer

This one is inspired by our recent experience and the ways volunteers made the process of navigating terminal illness with a loved one more bearable. I know in our area, the outlying counties beyond Leon are more stretched for volunteers; I would be willing to drive quite a ways if it would help a family be a hair less stressed.

Go to New York City Much More Frequently

Best case scenario: I have a tiny, but safe, studio in New York that is available to me year-round and I use it. I could go with an annual two-week stay or briefer, quarterly stays. I need NYC far more often than I get it.

Take a Cruise

I’ve never been on a cruise and would love to check this off my list! I’m not too picky about which line (although Disney Cruise Lines would be extra-magical!) or where I go. I just want to be able to chime in to cruise conversations with some experiences of my own.

Spend Time at the Beach

When we went to Daytona Beach earlier this month to help Wayne Kevin with arrangements regarding school, we had dinner at the beach both nights we were there. I only got a quick glance at the sea, a few moments on the sand, but even that little bit of time was restorative.

Personal Life Goals

Write More Letters

It’s no secret that I love snail mail but I send out far fewer letters than I would like. I would especially love to send out “just because” notes.

Travel to Australia

I have relatives in Australia; visiting them (and the country) would be a dream! Not sure what I would do first, or what my priority would be, but three top contenders would be to see the Sydney Opera House, to visit New South Wales (I know this is a broad desire!), and to visit something well off the beaten tourist path (I have plenty of time to come up with a plan on that).

YOUR TURN

What would you do if you didn’t have to work?

Personal Life Goals

This post is a response to a Mama’s Losin’ It prompt: 10 things you would do if you didn’t have to work.

Wife of one, Mom of two, Friend of many.