A Peek at Palliative Care

April 21, 2022 5:31 PM

Goals of Care I have been a palliative medicine specialist for more than a decade. Medical teams consult me for the most difficult discussions. I know how to build a picture of the future—and how and when to share that future. For me, these conversations are as automatic as hanging my stethoscope around my neck and clipping my pager to my belt. I often tell learners that bad news floods the brain with emotion so that it is not a good time for decision-making. But as I leave clinic that day, my medical brain comes back; what happens if Dad goes to the hospital?

Via Shunichi Nakagawa, an interesting follow for insight into palliative care.

posted by ThePinkSuperhero (27 comments total)

Thank you from the bottom of my heart to all palliative care nurses & doctors. As my MIL was dying of pancreatic cancer she insisted we should all be in palliative care - aren't we all slowly dying day by day?

Special thanks to the nurse who called us the night before she passed away so we could tell her we loved her & say goodbye. My husband was on a plane the next morning but she had passed before he landed.
posted by muddgirl at 6:35 PM on April 21, 2022 [9 favorites]

The wife got another ward visit from palliative last week after an emergency hospital admission that kept her in overnight. They're usually pretty good about reassuring her that they're about more than end-of-life care, and are the experts in managing severe symptoms. That's what she was looking for, being very nauseous and in pain, but this guy would not shut up about how she's dying, and how does she feel about that, and what arrangements does she need to make, and how much more treatment can she stand, and on and on until she peremptorily asked him to get out. She could not really get the symptom management she needed from the ward doctor, so we've just had a hell of a week waiting for her to be able to restart chemo tomorrow, during which she lost another 10lbs that she can scarcely afford.

If I'm honest with myself, there's a pretty fair chance that he's going to turn out to be right about the dying thing, but our oncologist has not yet written her off, and keeps coming up with treatment options. I'm sure palliative will do better as and when she needs them for real. I'm not ready for that thought yet though. And likely won't be.
posted by rhamphorhynchus at 6:50 PM on April 21, 2022 [29 favorites]

The people at the facility my father spent his last days in were so kind and compassionate. I'm profoundly grateful for people who are drawn to this kind of caregiving.

Occasionally I find myself thinking of the facility resident (she'd been there almost two years, she told me) who chatted with me as I was waiting in the lobby to go in and see Dad. When I stood up and excused myself, she said "Maybe I'll see you again!" I didn't have the heart to say that I was pretty sure Dad's remaining time was too short for that to be possible, so I just smiled and said "That would be nice."

I hope she's doing well.
posted by Lexica at 6:58 PM on April 21, 2022 [6 favorites]

Thank you for sharing this.
posted by eirias at 6:59 PM on April 21, 2022 [1 favorite]

Very human.

When one can keep one's professional role distinct from one's family role:

I envision a stone wall between the doctor me and the daughter me, built up brick by brick, and go on.

When one can't:

As so many patients do, my mother responds, “I’m not ready for that yet.”
If she were my patient, I would explore gently, asking, “Tell me what you know about hospice?” and respect her decision even if I disagreed.
What I say in that particular room is, “No Mom, you NEED hospice. For my sake.” She agrees.
Later, when the hospice social worker comes by to meet her, Mom asks what hospice can do for her. I automatically launch into the speech I have given a thousand times and interrupt myself after the first sentence, saying to the social worker, “You go ahead.”

posted by otherchaz at 7:21 PM on April 21, 2022 [11 favorites]

These moments are beyond operating specifications of humans. I have no room in my heart to blame anyone who loses their shit at these times. Past a certain point, we are all just animals in pain, however we might try to pretend differently.
posted by notoriety public at 7:28 PM on April 21, 2022 [17 favorites]

These moments are beyond operating specifications of humans.

I strongly suspect that this is a cultural failure, specifically a capital-W Western cultural failure. Death is a fact of life, a part of life's cycle, and for most of the world's human history has simply been part of the human experience, one of the ceremonies and cycles of the world.

The idea that death, even death that is a long time coming, is somehow beyond us is a peculiar sort of vanity. People have been dying for a really long time.
posted by mhoye at 7:48 PM on April 21, 2022 [14 favorites]

[deleted fightiness - not been a great week, sorry]
posted by rhamphorhynchus at 7:57 PM on April 21, 2022 [4 favorites]

[deleted fightiness - not been a great week, sorry]
Honestly, that's exactly what I'm talking about. I have never been so intimately and personally challenged as you are right now, and if anything I say offends you, I apologize unambiguously. You are bearing what must be borne, and I am not the one to tell you you're doing it wrong. I believe in you.
posted by notoriety public at 8:02 PM on April 21, 2022 [14 favorites]

Oof. My sister is the only MD in our immediate family and it's definitely crossed my mind that what you do becoming That Relative is bear the burden of helping the aging parents navigate the medical system in a way nobody else can. I think I'ma go ahead and NOT forward her this article. She regrets med school enough for other reasons already.
posted by potrzebie at 12:38 AM on April 22, 2022 [1 favorite]

Wow. Ok. Thank you for posting this. Such richness to explore.

The stone wall metaphor really resonates: I spent many years building that wall inside myself, thinking it would preserve me, and somewhere along the way it started to crush me under all. that. weight. It turns out to be harder to dismantle than I realized.

Palliative care was hands down my favorite rotation in medical school. (Yeah, even more than neurology.) You'd think that spending an entire month on deathcare would be depressing, but it's not! It was incredibly affirming. Two big things I learned about family meetings. One: always, but always, sit down. Even if you have to perch on a windowsill. And two: start not with the medical summary but with an invitation: "Tell me about your mother."

The case history format (90 year old man with acute on chronic kidney disease...) does help me see in one way, and it's been so ingrained in me now that it's hard to let go. Just like every fairy tale starts "Once upon a time", every case presentation starts with that one-liner. But that crystallization loses so much. The founder of a recovery program for substance users. The first female editor of a major women's mag. A member of the French Resistance. The inventor of freaking barcodes! The person who kept the neighborhood fed, or took in all the strays, or loved to travel.

I was taught to include a bit of that in the one liner ("90 year old retired ad exec with acute on chronic kidney disease") but that's fallen out of favor, I don't know why, maybe Epic. The one liner gets prepopulated now, often garbled GPT-3-like junk but if you delete it you don't get paid. Because all those other elements can be entered into a mortality model to code level of complexity, but where do you enter "master gardener" or "avid reader" or "father of four." Even though those things are more relevant to their care than the UTI they got four years ago and is now tattooed on their chart until the end of time.

Sorry I didn't mean for this to be an Epic rant (seems like most of my comments about medicine turn into Epic rants). Maybe that's why I liked palliative so much. It got me back to the core of what actually matters, not what the bean counters say. It's, like, subversive. I also saw how transformative hospice was for my paternal grandfather, and how their absence prolonged my maternal grandfather's suffering. I know which I want for myself.

That's not even touching the main theme of being the doctor-daughter. I need to sit with that a little more before I can articulate. Hopefully without another Epic rant.
posted by basalganglia at 2:09 AM on April 22, 2022 [44 favorites]

I strongly suspect that this is a cultural failure, specifically a capital-W Western cultural failure. Death is a fact of life, a part of life's cycle, and for most of the world's human history has simply been part of the human experience, one of the ceremonies and cycles of the world.

This is definitely not the case in Ireland, where funerals are generally still big multi-day events involving the whole community, local radio news updates list out the names and funeral arrangements of everyone who died, and "did you hear who died?" is an acceptable conversation starter.

What upset many people like me about Covid lockdown (I lost a close friend to cancer age 37) was that we couldn't give loved ones the big send-off that they deserved and that we needed. Funerals are supposed to be for the dead, but they're really for the living.
posted by kersplunk at 2:21 AM on April 22, 2022 [11 favorites]

Hopefully without another Epic rant.

No, please Epic rant forever. In between my brother living and my father dying fell the Epic takeover of our hospitals and I swear to god it is the fucking worst.
posted by We put our faith in Blast Hardcheese at 6:40 AM on April 22, 2022 [4 favorites]

Hospice RN here. Impending death of a loved one, everything gets thrown out the window. Nice people bitch. Jerks become softies. Tight-knit families come apart at the seams. Estranged people come together, a mother who hasn't spoken to her son in decades crawls out of the woodwork. There’s parties, there’s wailing. Sticker shock that a funeral is so expensive. Relief that medicare covers part of the care. It’s never not a shitshow. We give people space, we come in for a hug if they want, we tell them there’s time, we tell them there’s a day. An hour or two. I only super cry when there’s a kid outside the window (fuck you Covid) saying bye to his grandpa/fishing buddy. Otherwise you have to think it’s a job, albeit one that deals with important life events, so you have to do it well.

Yeah. So.
posted by BlunderingArtist at 7:18 AM on April 22, 2022 [38 favorites]

Elder care has seemingly morphed from a place of calm and dignity to capitalisims last desperate chance to extract that final bit of wealth before it can be passed on to the next generation.
posted by kzin602 at 8:46 AM on April 22, 2022 [3 favorites]

I think it is the condition of being an adult human being in the world to never be far enough away from grief that articles like this don't claw at my heart a little in memory and/or anticipation of events. People that work in palliative care do extraordinary work. They make the hardest times bearable.
posted by thivaia at 10:29 AM on April 22, 2022 [1 favorite]

My dad's in home hospice now, and I've been staying at his house to care for him. I loved the hospice personnel from the minute they arrived. The way they treat my father as a person, not just a malfunctioning body. The way they listen to me and his wife and address our concerns as a matter of course.

Then this past month, my wife got hit with Guillain-Barre Syndrome, and I've been managing her care as well. The excellence and empathy that I've experienced with hospice has made dealing with my wife's medical team so much more frustrating.

I'm sure there are reasons I'm not aware of that make non palliative care so much less humane. I'm sure much of it comes down to time and money. I just wish all health care could be more like my dad's hospice team.
posted by Vigilant at 10:56 AM on April 22, 2022 [7 favorites]

@BlunderingArtist

My deepest thanks and respect to you and others in your profession.
posted by prambutan at 11:52 AM on April 22, 2022 [2 favorites]

Thanks for this. My dad is 90 and has mild dementia and problematic kidneys, too. It's not easy, but it has a painful beauty about it. "It" being the final years of a long and totally unique life.
posted by plasmatron7 at 2:35 PM on April 22, 2022 [1 favorite]

I remember during the hour of my dad's death watching the calm detachment that the palliative nurses moving around his bed showed. And in retrospect how them putting a folded red blanket at the foot of the bed meant that they knew before the rest of us how he would actually die. I can't imagine the weight of seeing those end-of-life moments every day, especially stepping in at the moment of death to calmly remove tubes and needles and clean things up. I've only seen that moment once and relived it in my head every day for years - I hope there's some comfort for them in being around others who do the same work. Thanks for posting this.
posted by bendy at 3:10 PM on April 22, 2022 [4 favorites]

Notes from someone whose spouse was on hospice care at home recently:

* obviously everyone will be a bit different, so take this all as general advice, not something written in stone.

* have the important talks ASAP. Push if need be. Spouse was projected to have a remaining 3-6 months, but passed away five days after entering hospice. Point is that medical science isn't exact, so do the heavy lifting.

* the hospice care should talk to you or have pamplett about what to expect as a person is doing and some of the scary or unpleasant things. Go over that several times.

* obviously have power of attorney, medical directives and wills made by this point. Having an actual grave site and/or funeral home already picked out may be soothing also.

* if at all possible, prepare to go on hospice early in the work week, during business hours and early in the morning. Spouse went in on a late Saturday afternoon and while the intake nurse was there within an hour of her being home, arranging very meds probably took a bit longer. Plus, spouse was tired as we went into the evening during that initial assessment.

* The person dying may fall into a coma and/or antigated at time and/or incomprehensible. There may be nothing you can do these times, other than hold them, stroke their head/cheek etc and remind them that are loved and with loved ones. It can help them and you go through this process.

* if given morphine to dispense, keep a log of dosage. After my wife passed that night and the hospice nurse came out, she was questioning me about how much morphine I had given her. Not in a bad or pressing way, but just keeping track of the morphine. I could understand this intellectually but having just had my wife die, I was bit touchy about the questions.

* discuss with nurse about when to deliver morphine and how often. If you have a question, be sure and call and ask them to be clear. The point is to make your loved one as comfortable as possible.

* If your loved one is at home, the the official time of death will be when nurse certifies time of death, i.e. when they can get there. Not a big deal, just an "oh, this the way it works legally"

* If your loved is at home you (and other family members) may wish to go to another room or part of the house as the caretakers remove the body. Hearing the stretcher bump into walls can be a bit unnerving.

* If the person who was passed is at home, have a can of coffee around, even if no one in the house drinks coffee. The nurse will collect any leftover morphine to mix with coffee grounds, to make sure it can no longer be used. Plus a cup of coffee might help folks stay awake if they have to wait for the hospice nurse and/or funeral home.

* Consider getting a pulse ox monitor. In our case, regularly monitoring those readings informed us when she was starting to pass, so we could call family to be there. Specifically we were able to "see" her pulse ox slowly dip from the usual '90s into the 40s or so. Probably best speak with the nurse about this, as I have no medical knowledge, just something I noticed that helped to prepare myself and others.

* again, none of this is written in stone, everyone is unique, so consult with the nurse and medical team about specific things you can do.
posted by Brandon Blatcher at 7:46 AM on April 23, 2022 [14 favorites]

So, I would advise against having a pulse ox monitor to watch, in general. But I love the involvement of a family who seek comfort in tracking numbers.

Clinically, in hospice, it rarely corresponds to a decline in any helpful way, prognostication-wise, which is a complex method we hospice professionals take all of these little pieces of assessment (circulation, pulse quality, breathing, skin appearance, decline in activity, appetite, etc.) and say, yes, less than a week or less than two days, etc. I never look at pulse ox, truthfully, but that might be my facility’s preferences too, as my docs don’t either. At worst, family might focus on this piece of data overmuch, and worry every time the number dips, instead of hanging out with their loved one.

My two cents! Again, I do like the involvement!
posted by BlunderingArtist at 7:56 AM on April 23, 2022

Yep, totally makes sense, I have a single experience of one. Absolutely defer to the knowledge of those trained in these matters.
posted by Brandon Blatcher at 8:07 AM on April 23, 2022

The one liner gets prepopulated now, often garbled GPT-3-like junk but if you delete it you don't get paid. Because all those other elements can be entered into a mortality model to code level of complexity, but where do you enter "master gardener" or "avid reader" or "father of four." Even though those things are more relevant to their care than the UTI they got four years ago and is now tattooed on their chart until the end of time.

as the person building reports from EHR and PM data, sometimes names stick out. and then one month they don't show up (our clients are mostly urology/prostate cancer right now), and you just pull up their record to make sure you didn't fuck up the filters, and no, there's the latest care note saying patient has passed, but they're all stored in the same text field, so right after that, you read how their wife has passed recently so they've started taking public transit, or how their son or daughter is the main contact, etc etc

I see you. I see them.
posted by rubah at 7:37 PM on April 23, 2022 [3 favorites]

After hearing Dr Ira Byock speak in Missoula and then reading his book "The Best Care Possible", I totally agree with the previous mom's suggestion that we should all be living in hospice care all the time.
Quality life can make for a quality death.

Big hearted thanks to all the care givers getting us through this. May your kindness return to you seven times.
posted by Mesaverdian at 11:37 AM on April 24, 2022 [3 favorites]

rubah, I'm glad those notes are going somewhere and being read by someone. I don't get notified of my patients' passing unless their spouse/partner/child has access to their MyChart account and manually sends a message to each of the clinicians individually, typing out something like "Jim won't be coming to his next appointment because he died on Sunday" over. and over. and over. You can't copy-paste MyChart messages, I think to minimize accidental copypasta, so they literally have to type those characters one by one. I can't even imagine.

Messages get filtered/triaged, so if said message happened not to use the Keyword of the Day, I don't see it at all. Until I get a auto-triggered request from Jim's pharmacy to refill his meds, and I realize I haven't seen him in a year, so I open the chart and get a little gray pop-up warning me that I am about to open the chart of a deceased patient. And then I find the message that Jim's spouse/partner/child sent like eight months ago that I never responded to because it didn't get routed to me, and I feel like a horrible human for abandoning this person in their pain.

Can't speak to other EHRs, but Epic seems to actively go out of its way to make caregiving harder.
posted by basalganglia at 3:48 PM on April 24, 2022 [4 favorites]

Having been both on the IT setup and now an end user of multiple EHR including epic People like to blame the EHR, but most of the time the issue is with administration in what they ask from the vendor during the sales process and how they screw up the setup to dehumanize everyone involved. Most setups do not help for hospice/palliative care. I would love it if they first thing I saw was they wanted from their health(and this case end of life care). I love helping take care of my patients who end up on hospice and palliative care and wish more of them would start it sooner. I usually make it a part of every well visit for 18 years and up to make advance directives as a not so subtle hit we will all will become sick or injured and definitely die. Not to mention planning all the odds and ends that need to be completed after someone passes. I expect i will be the author’s shoe in the not too distant future and this is a good reminder I have a quite a few things to take care of.
posted by roguewraith at 1:12 PM on April 28, 2022 [1 favorite]