Palliative Care Psychiatry - TW

[wesleycrusher]

TW for mental illness, eating disorders and suicide

.
.
.
.
.
.
.
.

Should Patients Be Allowed to Die From Anorexia?
Treatment wasn’t helping her anorexia, so doctors allowed her to stop — no matter the consequences. But is a “palliative” approach to mental illness really ethical?

This is a long article in NY Times, but really interesting. The ending of the article was thought provoking. A few other points that stood out to me:

In somatic medicine, a patient didn’t need to have a good reason for stopping care. She didn’t even have to try getting better in the first place. A cancer patient could decline chemotherapy that would very likely save her life. Because she didn’t think the benefit was worth the pain. Because she wanted to go home to her children. Because she preferred to be treated by a homeopath. She could do what she wanted, just because she wanted to. Why should patients with mental illnesses be held to a different standard?

and 

It was this kind of patient, typically a woman with a decade of failed treatments behind her — “kind of hobbling along in life,” Yager said — who found her way to him.

Yet when Yager, who was then working at the University of California, Los Angeles, looked for guidance on what to do for such a person, he found almost nothing. All he could see were articles instructing him on how to exert his will over recalcitrant patients, how to give them more standard treatment aimed at full weight restoration. And sometimes, because that was all he had to offer, his patients would simply stop coming to appointments. Yager would discover, later, that they had gone home and died alone on their sofas. Maybe by starvation, maybe by suicide. Maybe in pain. “I felt like a failure,” Yager told me. “They fired me, basically, at the end, knowing that I wasn’t able to help them anymore and wasn’t eager to just see them through the end.” In a desperate attempt to not abandon them, he had abandoned them. Bludgeoned them with care. Rescued them to death.

[fortnightlily]

This is a fascinating topic, and I'm glad there are providers out there challenging norms to tackle it, however complex. I'm definitely someone who recognizes that it can be incredibly difficult to determine if someone's in "enough of a right mind" to make decisions for themselves, but I err on the side of deferring to people's own agency. I'm also not someone who places a high value on keeping someone alive at all costs, and thinks there should be better options for people who want to end their own lives while inflicting as little trauma on themselves or others as possible.

[sonrisa]

This hits a little too close to home. We have friends trying to keep their anorexic 17 year old daughter alive who are having the opposite problem - the doctor keeps sending her back home without treatment. She has dropped below 80 pounds and will not eat and has four organ systems at risk of shutting down. Every week or two they go in and the doctor just says - "if she keeps going like this she risks death. Let’s give her one more chance to gain on her own and if she doesn’t we’ll hosptialize her next week." but the next week comes, and she always has lost a little more weight - but all they are offering is ‘one more chance’ for her to turn things around on her own without any professional help (just a worried family doing what they can without any help or progress).

[wildrice]

This is a timely topic for me, too. I haven't made it all the way through the article yet, but it gives me some things to consider further. As I've posted about on ML, my youngest sister is going through a major health crisis with gastroparesis and while she tells us the doctors say it's from unknown reasons, we have reasons to suspect it's from having an eating disorder for the last 20+ years that she hasn't shared the extent of for many years. She had treatment multiple times when she was younger, but I think her last inpatient was back in 2009. She's supposedly "recovered", but has remained very thin despite binge eating multiple times a day every single time we have been around her for the last decade or more (which to be fair, isn't frequent - she has chosen to live alone and far away from family). She also exercises multiple hours a day most days, or at least did before the current crisis started. I don't know if she ate healthy most of the time and just slipped up sometimes or if she was engaging in binge (and subsequent purging) behavior regularly when we were just not there to see it. I like to think the former but recent events have me thinking maybe the latter.

I have long believed that there was more going on with her for a variety of reasons I won't bother expanding on here, but it has also felt like she's an adult who is aware of her issues and knows what she needs to do to get help if she wants it - so I have stayed out of it. She's currently fighting to fix the physical issues she's dealing with so that she doesn't die, but it's occurred me lately that perhaps what she's dealing with more than anything is late stage eating disorder disease. She has been receiving nutrition through a TPN (bloodstream, basically) in recent months but still binged at Christmas dinner - despite the fact that her stomach literally doesn't work. She has reported eating nothing in months, but the quantity of food her stomach held seems impossible for a normal stomach, but especially for one that isn't used to holding any food at all anymore. It really freaked my family out to see. 

Anyway, I guess all that to say - it does make me wonder what life looks like for her going forward. Can she recover from the mental aspect of this? Does she want to change (or maybe more accurately, feel capable of changing) her propensity toward binge eating (and presumably purging after) to attempt to save her GI system from total collapse? How do you even treat an eating disorder where the patient is physically incapable of digesting food? I hate to just accept that she's never going to recover and live a somewhat "normal" life, but maybe that is just the reality for some people. The physical patches here are only going to help her for so long if she doesn't fix the mental aspect - but maybe there IS no fix?

Maybe PDQ on the first two paragraphs, though I may or may not actually delete later.

[meanie]

My grandmother worked with people who had eating disorders for decades at a private hospital in CT. The hospital had a lot of wealthy patients so I don't think her experience was normal, but they had a group of people who basically lived there permanently. 

The same grandmother died after a horrible battle with colon cancer. I watched her writhe in pain. I 100% support dying with dignity after watching what she endured.

I struggle to feel the same way towards eating disorders, but ultimately my personal opinion doesn't matter. To be clear though - I mean my gut reaction says no, but my brain KNOWS it should be treated the same...if that makes sense.

[sonrisa]

((wildrice))

[wildrice]

Jan 10, 2024 14:18:39 GMT -5 sonrisa said:

((wildrice))

Thanks - and right back at you, too. I am sorry this is impacting someone close to you, too. That sounds very scary and like something someone in the medical system should do something about The healthcare in this country is just shameful. 

[wanderingback]

Posting so I can read this later.

There was a recent article discussed in a group chat with other doctor friends I have about medical aid in dying for people with mental health problems because Canada is passing laws for this.

In general I 100% think people have bodily autonomy and should be able to choose their life path and that includes people with mental illnesses.

In my experience in this country we are so hyper focused on fixing things that we often miss the forest for the trees when it comes to treating people with autonomy and dignity. People should be able to choose quality of life over quantity if that is what they want.

[Saudade]

I have lots of thoughts on this, especially as a medical professional. It's a very interesting article with some great points. I'm not sure I'll be able to eloquently summarize my thoughts but I'll try.

As a former ICU nurse, we had a position where we had to round on different units in the hospital, one of which was the eating disorders unit. It was heartbreaking.
We had several patients that declined treatments and then were in ICU: cancer, heart, etc. One time we had a young person who had been diagnosed with cancer and the patient and family decided naturopathy was the treatment they desired. That patient died in our ICU.

I've placed so many holds on patients, only to have them return after they've been discharged from the psych unit and I have to put another hold on them. I will fulfill my professional duties, but that doesn't mean I agree with what I have to do.

Part of this is not fair. Medical professionals should not always have the power to demand what happens to a patient. We can't say "you must do this" as it removes agency from that person. Psych patients are not different. They also deserve agency in their healthcare. I can allow a patient to go home with a fatal medical diagnosis but if it's mental health I have to place a hold and force them to be hospitalized. I think there is a lot more room for nuance than we are allowed to acknowledge.

We also don't get enough training on it in school, which is another issue. I don't know about medical school, but from what I know from my friends and colleagues experiences, they don't feel they had adequate training either.

I've participated in so many "end of life" discussions in the ICU and each one is unique. mofongo can attest to this I'm sure. Families experience it in different ways and providers input can vary wildly, as can their delivery and bedside manner. It can make a world of difference. We have many times had to keep patients alive that we knew had no chance of meaningful recovery.

[gretchenindisguise]

I think some mental illnesses are terminal and it would behoove us as a society to view it as such.

[UMaineTeach]

Jan 10, 2024 22:09:26 GMT -5 gretchenindisguise said:

I think some mental illnesses are terminal and it would behoove us as a society to view it as such.

I agree
I also know someone who keeps himself from dying by suicide by keeping in mind that it’s an option.

He works through the thoughts of suicide he has and suggests that knowing it’s an option relives some of the stress. Almost like, hey there’s no rush on this.

I can’t entirely understand the reasoning, but he’s been suicidal for like 30 years and is still alive. A psych hold wouldn’t help him.

[mrsukyankee]

We talk often in our team meetings when a student has died by suicide (usually hasn't seen one of us), that we can't make someone live. If they want to die, they will find a way to do it. I do wish starting counselling with all younger people was a thing - even if it's just one session when they are littles to have someone to talk to and see that it's not a bad thing. That coping mechanisms were taught often from a young age. That there was space for people to go whenever they wanted to deal with unhelpful thoughts and feelings. I wish getting help was easy and normalised. And I wish medication was better and not stigmatised. There's a lot of wishes I have around mental health.

[karinothing]

Jan 10, 2024 14:43:55 GMT -5 wanderingback said:

Posting so I can read this later.

There was a recent article discussed in a group chat with other doctor friends I have about medical aid in dying for people with mental health problems because Canada is passing laws for this.

In general I 100% think people have bodily autonomy and should be able to choose their life path and that includes people with mental illnesses.

In my experience in this country we are so hyper focused on fixing things that we often miss the forest for the trees when it comes to treating people with autonomy and dignity. People should be able to choose quality of life over quantity if that is what they want.

@@

In regard to dying with dignity for mental illness is there any discussion over providing mental health care for the family of the person making the decision? I am not sure if I am wording this right. A few years ago, my friend's son took their life and two years later his mother took her life on his birthday. Both suicides obviously sent huge ripples through the family and while I will never know for sure, I don't think his mom would have taken her life if the son had never taken his. I guess what I am saying is when someone dies after a long terminal physical terminal illness death can come as a peaceful moment to the family. Suicide, in my experience, doesn't seem to have that same effect even if the person has been struggling with mental illness their entire life. And there are many papers and studies written on suicide contagion. 

I don't know if I think this means people who suffer from mental illness shouldn't be afforded the same rights as someone that suffers from a terminal physical illness or whether the feelings of their family even matter, but I do think the impact on family is different and I would worry about it triggering additional suicides. 


I don't know and obviously I have personal history that impact my feelings about this.   I guess ultimately, I would just hope that this would be a whole healthcare situation where the family (and friends?) was provided with adequate support. 

[wildrice]

karinothing, I obviously know nothing credible about this since I'm not a professional, but I wonder if dying by suicide in a palliative or euthanasia way would actually be a lot easier on the family. There would be more of a sense of closure and chance to have a conversation around the choice being made. They may not accept it, but at least they wouldn't be burdened with the questions and "what ifs" that typically come with suicide. There is grief no matter what when someone dies, but a sudden and unexpected loss adds a second layer of trauma to the experience of losing someone.

[wanderingback]

Jan 11, 2024 8:38:38 GMT -5 karinothing said:

Jan 10, 2024 14:43:55 GMT -5 wanderingback said:

Posting so I can read this later.

There was a recent article discussed in a group chat with other doctor friends I have about medical aid in dying for people with mental health problems because Canada is passing laws for this.

In general I 100% think people have bodily autonomy and should be able to choose their life path and that includes people with mental illnesses.

In my experience in this country we are so hyper focused on fixing things that we often miss the forest for the trees when it comes to treating people with autonomy and dignity. People should be able to choose quality of life over quantity if that is what they want.

@@

In regard to dying with dignity for mental illness is there any discussion over providing mental health care for the family of the person making the decision? I am not sure if I am wording this right. A few years ago, my friend's son took their life and two years later his mother took her life on his birthday. Both suicides obviously sent huge ripples through the family and while I will never know for sure, I don't think his mom would have taken her life if the son had never taken his. I guess what I am saying is when someone dies after a long terminal physical terminal illness death can come as a peaceful moment to the family. Suicide, in my experience, doesn't seem to have that same effect even if the person has been struggling with mental illness their entire life. And there are many papers and studies written on suicide contagion. 

I don't know if I think this means people who suffer from mental illness shouldn't be afforded the same rights as someone that suffers from a terminal physical illness or whether the feelings of their family even matter, but I do think the impact on family is different and I would worry about it triggering additional suicides. 


I don't know and obviously I have personal history that impact my feelings about this.   I guess ultimately, I would just hope that this would be a whole healthcare situation where the family (and friends?) was provided with adequate support. 

I’ve never personally assisted with medical aid in dying but yes in general people have family involved. They will say their goodbyes, have family involved, etc. Palliative and hospice care are typically very holistic and provide both care for the patient and the family before and after the person’s death.

[dirtyred]

One of the docs I worked with a long time ago said that we only question a patient's mental status if they disagree with us.

[bookqueen15]

This hits really close to home for me and I haven't read the article yet, as I need to prepare myself first. My cousin, who was like a sister to me growing up (we're both only children) is currently dying from untreated anorexia. She has never gotten any real treatment her entire and has refused to do so, as much as her parents have tried to help her, even now.

[lust2hart]

Jan 11, 2024 12:36:22 GMT -5 dirtyred said:

One of the docs I worked with a long time ago said that we only question a patient's mental status if they disagree with us.

A couple of doctors interviewed for this article said something similar: 


Jennifer Gaudiani, Yager’s co-author, told me that she has asked her critics directly: What would you have done differently with those patients? “And it can’t be, ‘I would change the eating-disorder system to be more inclusive and accessible.’ Nope. We’ve got a patient in front of you, right now.” Should she be abandoned in the name of ideological purity? Gaudiani believes that the paper’s detractors demonstrate “an important flaw” in their logic: If a patient elects, willingly, to go into standard eating-disorder treatment, her decision is never scrutinized and her capacity is never questioned. But if, instead, the patient’s decision is “incongruent with lifesaving, then we question,” she said. “That’s not ethical.”

“It doesn’t make sense,” Yager agreed. “They’re ‘incompetent’ unless they want treatment?”

[gretchenindisguise]

This is just my unfiltered current thoughts. I think it requires a complete overhaul in how we view mental health as a society. It is still largely considered a moral failing in a way that physical illnesses aren’t.

“If you just did x,y,z the illness would go away” doesn’t leave room for the fact that research shows us x,y,z treatment isn’t 100% curative for 100% of patients. It is really far far shorter than that. Why do we allow for there to be medical failure in physical illnesses but not mental illnesses? Because at the end of the day we (general we here not specifically anyone in this thread) go back to the moral failing of “if they had tried harder it would have worked.”

[lust2hart]

Jan 11, 2024 14:16:32 GMT -5 gretchenindisguise said:

This is just my unfiltered current thoughts. I think it requires a complete overhaul in how we view mental health as a society. It is still largely considered a moral failing in a way that physical illnesses aren’t.

“If you just did x,y,z the illness would go away” doesn’t leave room for the fact that research shows us x,y,z treatment isn’t 100% curative for 100% of patients. It is really far far shorter than that. Why do we allow for there to be medical failure in physical illnesses but not mental illnesses? Because at the end of the day we (general we here not specifically anyone in this thread) go back to the moral failing of “if they had tried harder it would have worked.”

I love the way you said this!

[AJL]

PDQ - may delete some details later

I work as a therapist in a partial hospitalization eating disorders treatment center (a step below residential treatment and two steps below hospitalization). I typically work with adults. I have had a few patients who quit treatment when they were very much at their sickest. It's hard to see those patients refuse treatment because of how well acquainted I am with what the road looks like if their ED is left untreated. 

However, I can't make someone better and I can't make someone want to get better. My ethics also emphasize the agency of the individual. My job is to present and help guide my patient with tools and knowledge and practice and support to eventually eliminate ED behaviors and thought patterns. If I had a patient who was refusing to do any treatment at all, then I look at harm reduction. How can I support them to minimize the harm their behaviors are doing to their bodies and psyche as much as possible? 

To be very blunt (and maybe unpopular or shocking), I'm not uncomfortable with the idea that someone who is an adult and has agency to make their own decisions deciding to refuse treatment for an illness (mental or otherwise) even if it likely will hasten their death. All I can do is to continue to support that person where they are with the tools I have until they decide they no longer need me to help them. It's a difficult thing to think about, but this is where my ethics have led me. 

[dancelnow]

Jan 11, 2024 9:43:23 GMT -5 wildrice said:

karinothing, I obviously know nothing credible about this since I'm not a professional, but I wonder if dying by suicide in a palliative or euthanasia way would actually be a lot easier on the family. There would be more of a sense of closure and chance to have a conversation around the choice being made. They may not accept it, but at least they wouldn't be burdened with the questions and "what ifs" that typically come with suicide. There is grief no matter what when someone dies, but a sudden and unexpected loss adds a second layer of trauma to the experience of losing someone.

I wish this was an option. I do think it would bring the family some peace at least knowing they didn’t suffer physical pain as they died. No one has to walk in on the body then. And the suicide is deliberate, not the result of a bad moment. Back to the poster above about knowing it’s an option can relieve some suffering. Maybe having a plan with definitive if this, then that would save some people.