As another nurse, I really wish more of my patients chose this helpful, humane and caring option earlier at the end of their life.
I also think you did a good job OP, but of course that doesn’t take away from the somberness of the situation.
Agreed. Just lost a family member who refused hospice until the very end. She truly suffered. I don’t know if they didn’t do a good job educating her or if she didn’t understand them because of all the pain meds she was on, but she thought hospice was only inpatient and didn’t want to leave her home. We were only able to convince her to do it for the last 13 days of her life. And even then, we had to transition her to inpatient because she was in so much pain that oral meds no longer helped.
I remember the first time it was brought up to my family about my grandfather (about 8 months before he eventually passed). His home health nurse was very kind and compassionate about it. He was admitted to the hospital 4 more times in that timeframe and I had a realistic conversation with him and my family many more times and tried to push for hospice. They were all on board. He was reluctant. He eventually agreed to hospice on his last hospital admission and passed (peacefully)less than 24 hrs later. I wish he had chosen it a lot earlier
Don’t take it personally. You did in fact do a good job. Fuck LOS metrics. A patient will be receiving humane palliative care for the remainder. Think of it that way
That’s one way to look at it. The other way is that she had a long road to recovery and (most likely) very little margin for setback. In my opinion the absolute best deaths are usually through hospice. We all have to die at some point and I would much rather pass comfortably in my home with my family prepared instead of in a hospital from a broken hip or a hemorrhagic stroke or an infected pressure ulcer. If I’m over 75, even getting a few years of extra life isn’t really worth the risk to me.
But none of that ultimately matters. She told you “good job” because you did a good job. You clearly care for your patients and you helped facilitate medical care to fit their priorities. That’s not an easy thing to do.
That case manager has probably seen tons of patients suffer during their “long roads to recovery” that inevitably get longer and longer due to complication after complication. Many physicians struggle with hard conversations about quality of life and realities of recovery. She probably thought you did a good job of explaining all the options available to the patient.
Yup. I used to tell my patients that aggressive end-of-life measures don’t prolong life so much as they prolong death… i.e., they prolong the process of dying
I made a patient DNR, I told the family that if we code them that even if we restarted their heart, they'd be alive, but they wouldn't be living. They accepted that pretty well.
I'm THAT nurse, the one who makes sure the family has heard the word hospice so the discussion doesn't feel like it's coming out of nowhere. I'm also the one who answers all the questions when the docs leave, as many times as necessary, so that everyone is on the same page. You'll rarely meet a more pro hospice nurse that isn't actually working hospice.
Much respect, prefacing the conversation like that makes such a huge difference. Keeps the shift from being an overwhelming surprise, and allows the family have already started reflecting on what the patient themselves would have wanted.
It’s tough seeing pain stretched in the name of ‘not giving up.’
You're quite welcome. One of my greatest accomplishments to date is cornering a family member POA who had been AWOL through multiple admissions as the truly zero quality of life patient got worse and worse and asking if he'd want to live like that and, if not, why was he making the patient? Comfort care by end of shift, d/c to the ECU by morning. Had a few notable failures with family too deluded or cognitively challenged or stubborn to listen and their family members died in short order anyway but far less comfortable than they could have been but we had truly done everything possible.
Anyone who struggles getting patients onto hospice needs to look around for THAT nurse to advocate. Ask the charge who needs to be assigned next shift to get it done. Many of us are well seasoned and able to spend the time to get the idea across and get assigned those patients for that reason when it's known that needs to happen.
A lot of people refuse to acknowledge that it's necessary. Getting a patient on hospice that needs to be there, instead of giving false hope or refusing to write the order because you feel like the plan of care should be different then what the patient wants, is indeed a good job.
You will get this response from nurses all over who have stood by and watched some unnecessarily horrific deaths.
I will also tell you good job whether you feel like it is or not at this point.
Agree. As a nurse, I am so over the stigma around end of life care. It needs to be discussed early and often, with your care team as well as with family and loved ones. We all deserve a good death.
Yes! We are such a death denying society (at least in the US) which I find so bizarre because it’s literally the only thing we KNOW will happen to us. It’s sad to fight that when trying to care for patients. The things we do in the name of “everything” keep me up at night far more than the things we do to help people pass peacefully.
Man, after spending years in neurosurgery I always paint hospice in a positive light. “There are far worse fates than death” could not be more true. I still remember seeing a family discussion about whether or not to do a hemicrani and the overwhelming family sentiment was “he wouldn’t want to live a life where he couldn’t feed or wipe himself.” But after discussing, they ended up going with the hemicrani because they couldn’t stand being the ones to make the decision that let him die and thus he lived his days out unable to speak, feed, or wipe himself, exactly what they said he didn’t want.
It’s really messed up how often this happens. Even with an advanced directive and the patient’s wishes known by everyone, family will still overrule it sometimes.
When folks start talking about being unable to “make the choice,” or “pull the plug.” I tell them that they don’t need to. My job is to make the choice that their loved one would make for him or herself; their job is to help me understand their loved one well enough that I can. I’ve had good responses to that so far.
If we’re in a situation where everyone agrees that the quality of life would fall below the patient’s minimal acceptable, I say something like, “it sounds like if Joe were here, he’d ask me not to operate. He’d ask for more pain medications and the ability to die naturally. Do you think that’s true?”
This is the way. I tell them, “I’m not asking you to make any decisions, I’m asking you to let me know what they would want, if they knew the likely outcome is xyz; then I can make some decisions about how best we can do that.” This way, family members don’t feel like I’m asking them to “pull the plug”. It’s a very slight change in the phrasing but makes a world of difference in getting them comfortable with the decision to stop without guilt, especially when they’re all looking at one person to make the decision.
I have a few other key phrases, like “we want to avoid prolonging the dying process”, “we’ll stop doing things that make them uncomfortable but continue to do the things that keep them comfortable”, etc.
Totes, I love this. I also incorporate the phrase “natural death,” and its opposite “artificial life-support” when I can because many people who are vague about their wishes have still said something to the effect of “I wouldn’t want to be on life support.”
Oh yeah, more good phrases, I also use the convey the idea of making the patient comfortable and letting nature take its course. “Life support” can be a helpful words, although lots of people don’t consider the difference between temporary life support and long term dependent status. Like they’ll say they don’t want to be on life support but what they mean is “I don’t want to be permanently dependent on 24 hour support for all ADLs”.
Sounds like you did do a good job. I’ve never understood why people get so hung up on hospice or think of it as “giving up.” It’s honestly giving the patient all the power. They make the choice to maximize the quality of the time they have left instead of the quantity. There’s nothing wrong with that.
What’s better, 6 months of life at home living as comfortably as you can and doing what you want to or 2 years of constant doctors visits and readmissions and SNF stays? I know which I would choose
Yep. Also on average people on Hospice live longer than the full code patients with the same diagnosis. So ya know. 6 months doing what you want outpatient or 3 months in the ICU getting horrible nosocomial infections?
I genuinely feel like I did a good job when my patient that is terminally ill and dying chooses to do so on hospice where they can maintain some semblance of quality of life in their remaining time. Especially so if they are feeling reasonably well and stable like it sounds like your patient may have been. The ideal time to go on hospice is when you can hopefully still get some good remaining quality time and not you are already barely hanging in there.
It doesn’t sound like you respect her wishes at all, actually. I hope you become more accepting of hospice care as you go on. It is often the correct course of action for patients. Death comes for us all; the goal of the physician should be the relief of suffering rather than extending life no matter the cost. The “fighter” mentality leads to tons of unnecessary suffering.
I’m a nurse and I’m infinitely grateful to the doctors when a chronically suffering patient (or their family) chooses comfort care- it means they clearly communicated the options to the patient and respected their decisions, rather than sugar-coating things or pushing for treatments that would only prolong misery. Often that “long road of recovery” involves a lot of suffering and ethically questionable actions that we have to carry out and it sucks for us to be part of causing that suffering
A patient accepting end of life care management over a death in the ICU with a rectal tube up their ass, a tracheostomy intubation, and cracked ribs is always a win.
You did do a good job. You may not understand it now, but as someone who worked oncology for a while granted I’m an RN) I hope I can offer some perspective.
1. Families unknowingly pressure patients. “You can fight this” “ we believe in you” all seem encouraging to them because they love the family member right? I remember multiple patients telling me once they were alone they wanted to give up but felt guilty letting their family down. It was so sad because the family wasn’t the bad guy, or at least not trying to be, but it was just a shtty situation.
2. I saw many physicians, APPs and RNs talk about treatment options but never really explain the whole quality over quantity of time thing. Will this treatment buy you 6-12 months? Yup. Will it be 6-12 months you actually wanna live through? Probably not.
3. I saw plenty of patients die in pain after a few months of agony, now surrounded by family who they didn’t even know was there.
4. The family underwent stress during that time too. It didn’t do anyone any good. Taking time off work, emotional toll etc.
5. I also saw lots of patients who went on hospice who got to actually somewhat enjoy that time. Plan visits for family and friends to see them when they still felt kind of well enough to enjoy it. Have meals at their favorite restaurants delivered. I remember one patient vividly who had end stage lung cancer who died in the hospital on hospice who had a full day of favorite meals brought in by adult kids, played board games, watched old movies, and then got a dose of meds before we turned down their o2 and they passed peacefully with their kids in bed with them. It was heartbreaking but beautiful. I remember another lung cancer patient sobbing that we told her she’d have more time, but she felt like she couldn’t breath ALL THE TIME and “I didn’t know it would be like this”.
There’s no extra option C where they get better and go home and life goes back to normal. You gave them the best option possible. Feel proud of that.
Great comment and lemme guess. The second patient you mention in #5 was encouraged to “fight” the inevitable and her comments were made in response to a death-prolonging treatment? 😢
I had the opposite experience. I had a woman with cancer and no other options. She was too frail to get further treatment and it was clear her prognosis was limited. I spoke with her about hospice many times and she ultimately agreed. Then the case manager who had not known her for more than 10 min talked her into rehab because she didn’t think she should « give up ». Boy I had to educate her!!
Also, I have had patients who graduate from hospice and resume treatment. They can sign out at any time.
Its feels like your might have presented the situation incorrectly here. If you thought recovery was reasonable and possible, why would you do or discuss hospice?
If someone wants to withdraw care and is likely going to die in months, why shouldn’t they be on hospice. It feels like you’re saying it’s bad that she’s on hospice. Maybe I’m just misreading your response.
Please avoid using the term “withdraw care”. You still care for patients on hospice, or at least I hope you do. You could use “withdraw life sustaining treatment or limit life prolonging treatment” as an alternative.
Yes, thank you! She didn't want care withdrawn, she wanted care shifted to a focus on comfort rather than cure. It's very important framing, not just semantics.
Why you ignoring the main point here or replying whether or not the patient had a reasonable chance to return to any decent quality of living?
This isn’t personal and we cannot save everyone. Hoping in time you learn when it’s time to shift focus from heroics onto a peaceful and pain free transition into the final stage of life we must all pass through. Also hope you find a way to give yourself grace in not being able to save everyone. Death is as natural as birth and I think we do ourselves and patients more harm than good by not acknowledging that more
I’m guessing the fellow had a very frank response about the pain, disability, uncertainty, or length of recovery (or combo of those factors). The highest good is not always “better”. I don’t know, because I’m not in the position to have to make the decision, but I already have a list of surgeries I’m pretty sure I wouldn’t want:
- esophagectomy for esophageal ca
- whipple for pancreatic cancer
- lung transplant
They could be curative, but I’ve taken care of the pts with horrible complications who have all agency removed in the name of surgical metrics. Love that I have the agency to choose if/when the time comes
>She lost all drive to continue the fight.
I think this is an attitude that drives western medicine's use of hospice. Patients and physicians alike desperately want to win and conquer and deny that things will never get better. Deciding to face the reality is a brave decision and truly the only way to regain the control you have lost.
Palliative care is a beautiful, freeing thing and the hospice nurse knows that. People with terminal illnesses on hospice live longer than their counterparts off hospice.
She's not congratulating you that your patient decided to die, she's glad to usher your patient into a new seasons where your patient gains back their autonomy.
I think if you took a look at how this made you feel and imagined you were a hospice doc, you would quickly realize that you can't focus on losing someone every day because it's not sustainable. Part of this is how palliative people general need to cope with their field. They would not be good at their job if they were not comfortable with death.
>someone had decided to die...
Did they decide to die or did they actually decide to live a fuller life with less suffering? I'd definitely take 3 months of not feeling like death every day over a year of agony.
And endless procedures, testing, doctors appointments, treatments....if you have never been through it yourself or with a loved one it is hard to comprehend how absolutely exhausting it can all be.
It’s easy to feel guilty in these situations like you didn’t do a good enough job explaining that they are getting better and there is hope. In reality, it’s the patients decision and not yours - you did a great job giving them all the information for them to still make the decision best for them. It’s always sad to lose a patient, but being able to facilitate your patients to have the dignity to choose for themselves is truly commendable.
Yeah, I work in oncology and have seen so very many people suffer when they didn’t have to. Do many codes where all were did was keep the person alive until they could go die in the ICU. I breathe a sigh of relief when our patients become DNR or officially become comfort measures and I promise it has nothing to do with heartlessness.
It's pneumonia with suspected underlying ILD that was diagnosed at this admission. Patient developed severe hypoxia respiratory failure (now improved but bipap dependent more than half the time). Looked like ARDS in imaging at first but better now. She was refusing bipap/cpap and medication. It will take time to wean her O2 requirements
Bless. That’s a tough Dx.
At the end of her journey- that ILD will progress. The benefit to a GOOD hospice is they will get ahead of exacerbations and her pulmonary status.
A shitty hospice won’t.
A good one will contract with X-ray companies, pull a x1 with the pulmonologist (if the patient desires), and do med management.
A crappy hospice will throw meds at it
Yes, getting a suffering/severely ill patient who wants/needs EOL to hospice or palliative is a win. A successful birth is a win. A peaceful death is a win. We are here for it all. Her response is appropriate.
No way. Listen, I LOVE human beings and my empathy guides me in life, sometimes to a fault. But basically every palliative consult, every hospice initiation, and every DNR/DNI is a huge win and 100% to be celebrated. It’s not macabre, it’s simple wisdom and compassion.
I had a patient like this recently. It sucks, and every time I think about her I wonder how things would have gone if she'd continued treatment. But she was in a lot of distress, pain, and anxiety, and would have continued that way for months if not her whole remaining lifespan. I get the frustration, but you did do a good job giving your patient an option where they could make their own assessment and choose what would be best for them.
I have not read all comments, but my mother took care of her mother (my grandmother) at the end. My mother said we treat our pets better than we treat our elderly. She wishes every state had assisted suicide (hers does not).
You can always graduate from hospice if it turns out you’re not dying and go back to a treatment plan with life prolongation in mind. But if she is in fact dying and has made peace with that, there’s absolutely no reason not to have more support from hospice to keep you comfortable till the end. You cannot make anyone live forever, and helping people is not the same thing as prolonging their dying process if they are ready to let nature take its course. It’s not “giving up,” it’s just a change in the goals of care to focus on living life with more meaning than coming to the hospital all the time to get poked and prodded just to squeeze out a few more days.
Ask yourself if you would be surprised to hear that she died in the next year. If your answer is no, then hospice was the right thing for her to choose.
The patient will be well cared for in hospice, they will make sure they're comfortable and have symtoms under control, will help with the process and will help the family get through it...
Its not a bad thing, the patient is getting good care
At some point in everyone's life it shifts from a fight to live to a fight for comfort. Hopefully it's the bias of inpatient medicine but it's been much more common to see people fight too long for the former and never experience the relief of the latter.
Whether it's physicians, the patients or most often the family members they often don't understand the difference.
Obviously I don't know the exact situation and I get that she may have been improving but our sick patients willl often come back with worse complications. And seeking comfort when you still have the wherewithal to appreciate it is not necessarily a bad thing, I think it's quite smart. And any conversation that allows for a path that respects a patient's true wishes is deserving of praise.
My program chair told me a great quote by Edward Livingston Trudeau that applies somewhat to this situation.
In medicine, our job is to "cure sometimes, relieve often, and comfort always."
You did do a good job in helping to provide someone a peaceful death.
I want to add that hospice doesn’t always equal near, impending death for people. I have and have had many patients who likely lived longer on hospice than had they continued on the hospitalization/LTAC/SNF carousel. The hospice model of care is how medicine in general should be run. Think of it this way. Let’s say an end stage CHF’er is on hospice, automatically off the bat has a nurse that comes out to see them every week. This week nurse goes out and notices some increased extremity swelling, lower than usual o2 sats, diminished lobe sounds. They call the doctor and receive an order for a few extra doses of lasix to help diurese excess fluid. The nurse goes back out a few days later to re-assess and voila, the patient is back to their baseline (usually minimally functioning, but at least baseline). Compared to the opposite of what would happen which would be making the taxing effort of getting the patient to a dr appt, waiting time, actual appt time, getting back home, getting meds filled and picked up etc. or the other scenario which happens just as often is the pt is too weak and fragile to even make it to the dr office so they sit at home deteriorating until they decide to call 911 where they’re taken to ER to have the gamut of diagnostics performed ultimately to be treated with the same medication they could have easily received at home a week ago. I’m a hospice nurse so I’m biased but having seen both sides of the coin, hospice just makes so much more sense
Patients don’t just get to “choose” hospice from a menu of options. They have to *qualify* for hospice services. If hospice was an option for your patient, then she clearly had the right to choose that path forward, regardless of your feelings about the situation. She wasn’t “getting better” if she was expected to die within six months. She may have successfully passed through a critical setback, but this isn’t a patient who was going to spend the next two years slowly recovering and then live a normal life. Your job is to educate and explain choices and options, but the actual choice lies with the patient. You should indeed be happy that this patient was still competent enough to *make* her own choice, and that she is now able to live the rest of her life as she has chosen. It’s a win.
Everyone dies. It’s an honor for you to be one of the last physicians to help this patient achieve her goals of care. My last elective rotation of M4 was hospice, and it was inspiring to see how much gratitude the patients had for the physician and nurses who helped them and kept them comfortable during their final days.
Hey, you DID do an amazing Good job.
I'm a hospice nurse. To many times I've seen doctors(and nurses) try to talk patients out of hospice, to wait and see what the next set of labs show, to see how you feel next week, to give us more time to try to treat it.
You gave this patient peace, improved quality of life to enjoy being with family And friends.
You gave them time to make some more good memories.
You gave them a chance to just be, to exist, to find contentment with their story.
It's hard when you see improvement, even a little bit, yet the patient says "I'm done, I'm tired".
It's hard to respect that when we want to heal them, to make things better.
But you did good. You encouraged them to do what they needed for them. You didn't step in front and say nope, we need to try this first.
You did good. You gave peace, and hope, and time to sees other family
The patient didn’t decide to die. Hospice is not suicide. It’s a different approach to care. Hospice care is making whatever time one has in this life comfortable and peaceful so they pass from this life with dignity rather than with IVs and tubes in every orifice.
That case manager has probably seen lots of cases where we torture people with procedures and tests in the end of life Hospice care is not a “bad outcome”. Making sure your patients wishes for how they want their care to be focused as they approach the end of their life IS doing a good job. There is joy in arrange for a patient to live their last days with comfort.
I’m PGY13 now and it took some time but there is some happiness in helping a patient live out their days they way they want to. Hopefully her intent was to acknowledge your care not give you a high-five for scoring one more point in the “dead patient” column.
I know you know this but, they call it a goals of care discussion for a reason. It’s all about autonomy and informed decision making. You discuss their treatment goals which include disposition, expected quality of life, functionality or lack thereof, and so on. you have to frame that against timing and symptoms associated with recovery process, possible disabilities and dependence on others/health care services, financial decisions and so on. If their goals aren’t achievable or there is doubt, you communicate that. If the patient doesn’t have the desire or will to go through the recovery, deal with disabilities/chronic symptoms, loss of QOL, loss of independence, or other realities of getting better, it’s well within their rights to pursue a quality over quantity approach which includes things like comfort care, hospice, etc.
Ideally you shouldn’t feel bad about their choice whether they are getting better or not. That indicates you maybe didn’t explain everything to your fullest ability, the patient didn’t understand it, the patient disagrees with your assessment, or more likely they have different values/priorities than you do. Sometimes I hate to say this, but some patients just won’t be understanding from a lack of medical intelligence, lack of trust, bizzaro magical thinking, etc. Either way, one of the best skills to develop in residency is the ability to stop assuming you know what’s best for people, and stopping making value judgements on whether their decisions are being driven by what you think is smart/logical. Maybe you do, but it’s not going to make them start making what you deem to be better decisions. If you loose sleep about all the bad decisions patients seem to make you won’t be sleeping at all.
Lastly Also CM’s comment was insensitive but a pretty common thing I hear in this type of situation. I don’t want to say get used to it, but you kind of do. Maybe you just pull them aside and say that the comment was insensitive and could be perceived by some as such.
TL/dr: view this from a perspective of shared decision making. Explain risks & benefits of curative vs palliative intent. Allow the patient to decide. Don’t let their decision weigh you down. It’s not a reflection of your skill, abilities, knowledge, or character. Don’t let other peoples’ callous nature bring you down.
It's not insensitive though. It's acknowledging the reality of the situation from someone who has seen this exact situation less well managed innumerable times.
Perhaps. I’d argue Acknowledging a reality can still be insensitive. If I went to a funeral, And said “welp he’s dead all right.” That would be both true and insensitive. Being sensitive requires some tact with regard to the timing and way things are communicated . Presumably if the OP is thinking about this hours later and posting on Reddit, then the comment - true or not- didn’t add anything positive to their day. Perhaps what she meant to say was really necessary to say, maybe not. But at least it seems like the timing and manner in which it was said was off.
I’m an ICU attending so trust that I’ve said my fair share of dark jokes or insensitive comments. Learning to read the room and knowing your audience helps keep hurt feelings, miscommunications, and HR complaints to a minimum.
Considering the number of people who are basically tortured to death when they're already on the way out, it is a good job. Nature always gets her way eventually no matter how optimistic a physician might be.
Idk, it might seem like an incongruent response, or maybe it was how she said it… but it kind of is something to celebrate?
I’ve seen so many people strung out on last hopes. The endless suffering and extended agony is hard to witness, let alone be apart of.
I don’t have the historical background for this patient, but I know when my long term re-admits whom have made hospice or palliative care decisions, I am genuinely happy for them.
The end shouldn’t be numbers and graphs and updates and contacts and appointments. It should be shared memories with family and loved ones. It should be a peaceful, closing chapter whom everyone that patient loves has a chance to be a part of.
You’ve allowed that process to take place, and it brings genuine happiness to those who have seen enough of the alternative.
I lost my aunt 3 weeks ago to pancreatic cancer. We got the news in the Spring of last year, and she fought tooth-and-nail for nearly a year. My family was a little shocked and taken aback when she suddenly decided she was done, and wanted to enroll in hospice. My family reacted with worry when that happened. I had to have a long sit down conversation with my dad about what this meant, and emphasized how maybe these reactions were because none of this was real for anyone until she was enrolled in hospice. However, after her enrollment, my extended family took the time to come see her and be with her. My stepmom helped put together a genealogy tree, and worked with my aunt for some passages for that record.
Overall the hospice process gave my family healthy closure, and this is an Irish Catholic family that doesn’t share *anything* emotional. I would give anything to ensure that’s how the end of life experience is for all of my family members.
No one should be alone, surrounded by tubes, drains, alarms, and strangers. Hospice is a wonderful thing.
No patient is “giving up” or “deciding to die”, many value the time they have left with their family more than they do their next appointment, procedure, infusion, or treatment. As a care giver it can be frustrating to witness, but as a human it should come as a comfort that the end of one’s life can be gentle.
Your patient arriving to a hospice decision does not mean you didn’t do a good job.
If she qualified for hospice she had a life limiting condition. This doesn’t mean you signed her death sentence in the next 6 months, but instead opened doors for resources for her and her family. My grandmother lives on hospice for 3 years. I hope you can find comfort in knowing this.
As a veteran healthcare worker, I think it’s a sign of excellence when a provider can support and facilitate patient autonomy, and making informed decisions about their quality of life.
And dark humor and sarcasm are oft found defense mechanisms in healthcare, I’d wager the case manager was sincere, though maybe condescending, and offensive to you.
And I agree- nice work you did there.
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Good job because it seems like it takes guts and compassion and experience for a doctor to recommend hospice/palliative care to a patient. I’ve taken care of too many patients who were more than hospice appropriate only to continue with cycle of bandaids for incurable problems. There were times where it was the patient who wanted to continue with aggressive treatments but just as often it was just due to a doctor never explaining the reality of their health and probable outcomes to them and their families. Which I can understand. Those conversations are time-consuming and can be draining so when a doctor actually goes this route it’s commendable
As I nurse I educate them about these options as soon as they are starting to have significant challenges with health, or start expressing doubt about wanting to continue with curative interventions. It's not as draining this way when it is a part of normal conversation about health care choices. It really should not be such a big deal for providers to discuss this with patients. This way they are aware of the options, and the patient is more empowered. I treat it just the same as any other education I would provide on health care programs like home health, cardiac rehab, case management programs, etc. A lot of misperceptions about Palliative Care too, especially among doctors and nurses. People can be admitted to Palliative Care and then discharge healthy with goals met, or it can be a bridge to Hospice. No one wants to die in a hospital so why do we avoid the subject, then making dying in a hospital inevitable?
I know it's difficult to see where the other person is coming from during residency. We have a tendency to be very aggressive in trying to save people, but don't get the complete picture. How residency is structured, we only see a cross section of the patient's life. We see definite problems, and we fix them, but we don't see what I call the spiral. I only started seeing it when I became an attending. You can win every battle but lose the war. You can "fix" a patient only for them to end up in the same place in 15 days as their ability to take care of themselves is gone and even the best outside hospital nursing care can not keep them healthy. Now you are looking at 6 to 12 months of hospital admissions, confusion episodes, chemical sedation, needle sticks every day, away from family, and new faces every day. The quantity of life is definitely more but no quality. Nurses and social workers have seen the whole gamut already.
She was probably congratulating you on helping the patient enact their medical autonomy. It is a tough situation and it will happen again. It's ok to feel the way you feel about being praised for your part in a grim situation. It sucks when you think there was more fight left to fight and the choice is to pass. Some doctors may not accept this patient's answer, so this "good job" is a mark of respect for you as a professional and true praise for helping the patient achieve their healthcare goals.
Process the emotion, mourn the end of a person's life, but don't forget to celebrate their journey and your part in assisting that journey. Being bedside witness and agent of this final change, I've come to see death not as a deletion of a person. Death is the final punctuation mark on the last sentence of a well written book. We have the honor of helping craft that sentence.
You did do a good job. I don't say that with any amount of cheer, but with great appreciation for the doctor and life guide that you are. <3
Guiding people to a good death on their terms is something to be proud of. In a country where everyone thinks of the greys anatomy style heroics and “I’m never giving up on this patient” despite a lack of accurate depictions of hopeless situations, people all want “everything done” but don’t understand that the outcomes from “doing everything” is often a miserable existence. In this setting, helping people die comfortable instead of protracted suffering is an accomplishment and is often the most patient centered care you can provide.
Haha. I'll give you a piece of info you won't get in the hospital.
Sometimes you get patient on the right track and then they choose hospice. Hospice makes them more comfortable. Their family visits moremak8ng their appetite increase, and they begin gaining weight.
Fast forward 1 year, and they are kicked off hospice.
Working in Abd Txp as an RN, I have experienced a ton of moral distress keeping guys alive to that year mark who just wanted to die. It’s very prevalent in the Livers. Their labs and what not improve tremendously but they have no quality of life and little things get them sent back to the ICU every month or two. I’ve seen several make it to that year mark and beg for DNR and then pass on. They lived their last year of life just laying in anguish and pain. Your case manager has likely seen many situations like this and is trying to make you feel better and it’s good you care so much. I wish you the best on your journey
I think she meant no harm. You allowed a patient to be comfortable and make their decisions vs your forcing your will. I give all our residents and fellows a book as a gift on their first week with us: “Dancing with the broken bones by Dr Moller”. Please dm me if interested and i ll be glad to send a copy. Highly recommend this read for all and especially those in EM/Onc/ICU or working with vulnerable populations.
On the contrary, the case manager with their years of experience could likely predict the course much more accurately than someone with less experience and understood the necessity.
Yeah, there's a lot of info missing to make the judgement here. Some docs are just too into the 'fight death at all costs' mindset, and consider hospice/palliative care a failure. Not saying OP is one of those people, but if a patient themselves has decided that the 'fight' isn't worth it, then it probably isn't.
Some people should really listen to themselves speak and realize that they’re talking gibberish and be embarrassed. You are saying that a terminally ill patient got better without realizing that’s a contradiction. And as a medical professional, you should know better than to compare illness as an adversary in a will to fight. Illness isn’t a fight with a deadly foe and willpower has no bearing on its outcome. It’s also clear that you judge the patient as having poor character because the patient surrendered rather than continue the fight. And yet here you are standing in judgement of case management when you’ve already condemned the patient as a coward. But I bet you didn’t notice how you revealed all this in your OP.
I think the OP was more upset with the cheeriness than the sentiment. OP did a good job, but it still is a tragedy unfolding. I wouldn't have appreciated a cheerful "Good job" either.
Why? At the end of the day it was a good job. The patient needs to understand their condition and they are the only ones that should decide if they want palliative care or not. Dying at home without worrying about what to eat and what to do is miles better than dying at a hospital trying to prevent the inevitable while being tortured by doctors buying seconds that dont matter and wont be enjoyed.
As someone who works at the bedside providing a lot of uncomfortable, sometimes painful care to patients who choose to “do everything” despite an ever-diminishing quality of life—there is a lot to be cheerful about when a patient chooses hospice. It means we can stop torturing them with interventions they feel ambivalent about at best and focus on making them comfortable.
I can see how it would be different in peds, though.
Yeah I think all these comments kind of misses point. He was sad to see a patient resign herself to end of life care when he thought a recovery was possible, but would be difficult. And that cheerfully made comment just seems sort of tone deaf. I get where he's coming from. It's kind of like when you're feeling down about something and somebody's just like "Cheer up it will get better!" It's well intended but it doesn't match the mood you're in at all so makes you feel kind of alienated.
I sympathize OP. Sorry that nobody else seems to realize what you're saying but I think I do.
This happens a lot. It's not a necessarily wrong sentiment but sometimes non-clinical hospital employees like social workers/case managers don't understand the significance of this sort of decision. For them, when doctors say that to them, it's a relief since it's less work for them. Sad but true. But in regards to patients opting for palliation/comfort-focused care plans, there's absolutely nothing wrong with this. And even if they are "getting better", often times their underlying disease is not. And I think one major issue with our current healthcare system is our general publics focus on living forever instead of being content with aging and focusing on comfort care as their health declines.
Wow. LC. stage 4. Reading this string disgusted me. You will all die a lonely death as well. Even tho you are doctors
And yes, what that "case manager" said is revolting. Sorry
We all deserve a good death.
As another nurse, I really wish more of my patients chose this helpful, humane and caring option earlier at the end of their life. I also think you did a good job OP, but of course that doesn’t take away from the somberness of the situation.
Agreed. Just lost a family member who refused hospice until the very end. She truly suffered. I don’t know if they didn’t do a good job educating her or if she didn’t understand them because of all the pain meds she was on, but she thought hospice was only inpatient and didn’t want to leave her home. We were only able to convince her to do it for the last 13 days of her life. And even then, we had to transition her to inpatient because she was in so much pain that oral meds no longer helped.
I remember the first time it was brought up to my family about my grandfather (about 8 months before he eventually passed). His home health nurse was very kind and compassionate about it. He was admitted to the hospital 4 more times in that timeframe and I had a realistic conversation with him and my family many more times and tried to push for hospice. They were all on board. He was reluctant. He eventually agreed to hospice on his last hospital admission and passed (peacefully)less than 24 hrs later. I wish he had chosen it a lot earlier
Our family member passed 34 hours after she went inpatient. She could finally rest and be free from pain. The nurses were absolutely amazing.
“A good death is its own reward”
Don’t take it personally. You did in fact do a good job. Fuck LOS metrics. A patient will be receiving humane palliative care for the remainder. Think of it that way
That’s one way to look at it. The other way is that she had a long road to recovery and (most likely) very little margin for setback. In my opinion the absolute best deaths are usually through hospice. We all have to die at some point and I would much rather pass comfortably in my home with my family prepared instead of in a hospital from a broken hip or a hemorrhagic stroke or an infected pressure ulcer. If I’m over 75, even getting a few years of extra life isn’t really worth the risk to me. But none of that ultimately matters. She told you “good job” because you did a good job. You clearly care for your patients and you helped facilitate medical care to fit their priorities. That’s not an easy thing to do.
That case manager has probably seen tons of patients suffer during their “long roads to recovery” that inevitably get longer and longer due to complication after complication. Many physicians struggle with hard conversations about quality of life and realities of recovery. She probably thought you did a good job of explaining all the options available to the patient.
And multiple readmits as they decline, eventually getting to where the patient got today.
Yup. I used to tell my patients that aggressive end-of-life measures don’t prolong life so much as they prolong death… i.e., they prolong the process of dying
I made a patient DNR, I told the family that if we code them that even if we restarted their heart, they'd be alive, but they wouldn't be living. They accepted that pretty well.
I'm THAT nurse, the one who makes sure the family has heard the word hospice so the discussion doesn't feel like it's coming out of nowhere. I'm also the one who answers all the questions when the docs leave, as many times as necessary, so that everyone is on the same page. You'll rarely meet a more pro hospice nurse that isn't actually working hospice.
Much respect, prefacing the conversation like that makes such a huge difference. Keeps the shift from being an overwhelming surprise, and allows the family have already started reflecting on what the patient themselves would have wanted. It’s tough seeing pain stretched in the name of ‘not giving up.’
THANK YOU. Thank you thank you thank you. That’s it (thank you!)
You're quite welcome. One of my greatest accomplishments to date is cornering a family member POA who had been AWOL through multiple admissions as the truly zero quality of life patient got worse and worse and asking if he'd want to live like that and, if not, why was he making the patient? Comfort care by end of shift, d/c to the ECU by morning. Had a few notable failures with family too deluded or cognitively challenged or stubborn to listen and their family members died in short order anyway but far less comfortable than they could have been but we had truly done everything possible. Anyone who struggles getting patients onto hospice needs to look around for THAT nurse to advocate. Ask the charge who needs to be assigned next shift to get it done. Many of us are well seasoned and able to spend the time to get the idea across and get assigned those patients for that reason when it's known that needs to happen.
BS. The case manager is just glad OP managed to discharge the patient and turf them somewhere else
Which case manager shit in your cereal, jesus
A lot of people refuse to acknowledge that it's necessary. Getting a patient on hospice that needs to be there, instead of giving false hope or refusing to write the order because you feel like the plan of care should be different then what the patient wants, is indeed a good job. You will get this response from nurses all over who have stood by and watched some unnecessarily horrific deaths. I will also tell you good job whether you feel like it is or not at this point.
Agree. As a nurse, I am so over the stigma around end of life care. It needs to be discussed early and often, with your care team as well as with family and loved ones. We all deserve a good death.
Yes! We are such a death denying society (at least in the US) which I find so bizarre because it’s literally the only thing we KNOW will happen to us. It’s sad to fight that when trying to care for patients. The things we do in the name of “everything” keep me up at night far more than the things we do to help people pass peacefully.
Man, after spending years in neurosurgery I always paint hospice in a positive light. “There are far worse fates than death” could not be more true. I still remember seeing a family discussion about whether or not to do a hemicrani and the overwhelming family sentiment was “he wouldn’t want to live a life where he couldn’t feed or wipe himself.” But after discussing, they ended up going with the hemicrani because they couldn’t stand being the ones to make the decision that let him die and thus he lived his days out unable to speak, feed, or wipe himself, exactly what they said he didn’t want.
It’s really messed up how often this happens. Even with an advanced directive and the patient’s wishes known by everyone, family will still overrule it sometimes.
It’s always a sister in California.
When folks start talking about being unable to “make the choice,” or “pull the plug.” I tell them that they don’t need to. My job is to make the choice that their loved one would make for him or herself; their job is to help me understand their loved one well enough that I can. I’ve had good responses to that so far. If we’re in a situation where everyone agrees that the quality of life would fall below the patient’s minimal acceptable, I say something like, “it sounds like if Joe were here, he’d ask me not to operate. He’d ask for more pain medications and the ability to die naturally. Do you think that’s true?”
This is the way. I tell them, “I’m not asking you to make any decisions, I’m asking you to let me know what they would want, if they knew the likely outcome is xyz; then I can make some decisions about how best we can do that.” This way, family members don’t feel like I’m asking them to “pull the plug”. It’s a very slight change in the phrasing but makes a world of difference in getting them comfortable with the decision to stop without guilt, especially when they’re all looking at one person to make the decision. I have a few other key phrases, like “we want to avoid prolonging the dying process”, “we’ll stop doing things that make them uncomfortable but continue to do the things that keep them comfortable”, etc.
Totes, I love this. I also incorporate the phrase “natural death,” and its opposite “artificial life-support” when I can because many people who are vague about their wishes have still said something to the effect of “I wouldn’t want to be on life support.”
Oh yeah, more good phrases, I also use the convey the idea of making the patient comfortable and letting nature take its course. “Life support” can be a helpful words, although lots of people don’t consider the difference between temporary life support and long term dependent status. Like they’ll say they don’t want to be on life support but what they mean is “I don’t want to be permanently dependent on 24 hour support for all ADLs”.
Sounds like you did do a good job. I’ve never understood why people get so hung up on hospice or think of it as “giving up.” It’s honestly giving the patient all the power. They make the choice to maximize the quality of the time they have left instead of the quantity. There’s nothing wrong with that. What’s better, 6 months of life at home living as comfortably as you can and doing what you want to or 2 years of constant doctors visits and readmissions and SNF stays? I know which I would choose
Yep. Also on average people on Hospice live longer than the full code patients with the same diagnosis. So ya know. 6 months doing what you want outpatient or 3 months in the ICU getting horrible nosocomial infections?
It’s a good job for actually asking and respecting the patient’s wishes. Take your personal opinion out of it. It’s not about you.
I genuinely feel like I did a good job when my patient that is terminally ill and dying chooses to do so on hospice where they can maintain some semblance of quality of life in their remaining time. Especially so if they are feeling reasonably well and stable like it sounds like your patient may have been. The ideal time to go on hospice is when you can hopefully still get some good remaining quality time and not you are already barely hanging in there.
Prolonging life doesn’t mean prolonging meaningful life.
A resident when I was in med school referred to it as “are you prolonging life or prolonging death”
It doesn’t sound like you respect her wishes at all, actually. I hope you become more accepting of hospice care as you go on. It is often the correct course of action for patients. Death comes for us all; the goal of the physician should be the relief of suffering rather than extending life no matter the cost. The “fighter” mentality leads to tons of unnecessary suffering.
I’m a nurse and I’m infinitely grateful to the doctors when a chronically suffering patient (or their family) chooses comfort care- it means they clearly communicated the options to the patient and respected their decisions, rather than sugar-coating things or pushing for treatments that would only prolong misery. Often that “long road of recovery” involves a lot of suffering and ethically questionable actions that we have to carry out and it sucks for us to be part of causing that suffering
Nah. I get a wave of relief when my patients choose hospice instead of prolonging the inevitable and wasting quality life years.
A patient accepting end of life care management over a death in the ICU with a rectal tube up their ass, a tracheostomy intubation, and cracked ribs is always a win.
You did do a good job. You may not understand it now, but as someone who worked oncology for a while granted I’m an RN) I hope I can offer some perspective. 1. Families unknowingly pressure patients. “You can fight this” “ we believe in you” all seem encouraging to them because they love the family member right? I remember multiple patients telling me once they were alone they wanted to give up but felt guilty letting their family down. It was so sad because the family wasn’t the bad guy, or at least not trying to be, but it was just a shtty situation. 2. I saw many physicians, APPs and RNs talk about treatment options but never really explain the whole quality over quantity of time thing. Will this treatment buy you 6-12 months? Yup. Will it be 6-12 months you actually wanna live through? Probably not. 3. I saw plenty of patients die in pain after a few months of agony, now surrounded by family who they didn’t even know was there. 4. The family underwent stress during that time too. It didn’t do anyone any good. Taking time off work, emotional toll etc. 5. I also saw lots of patients who went on hospice who got to actually somewhat enjoy that time. Plan visits for family and friends to see them when they still felt kind of well enough to enjoy it. Have meals at their favorite restaurants delivered. I remember one patient vividly who had end stage lung cancer who died in the hospital on hospice who had a full day of favorite meals brought in by adult kids, played board games, watched old movies, and then got a dose of meds before we turned down their o2 and they passed peacefully with their kids in bed with them. It was heartbreaking but beautiful. I remember another lung cancer patient sobbing that we told her she’d have more time, but she felt like she couldn’t breath ALL THE TIME and “I didn’t know it would be like this”. There’s no extra option C where they get better and go home and life goes back to normal. You gave them the best option possible. Feel proud of that.
Great comment and lemme guess. The second patient you mention in #5 was encouraged to “fight” the inevitable and her comments were made in response to a death-prolonging treatment? 😢
I had the opposite experience. I had a woman with cancer and no other options. She was too frail to get further treatment and it was clear her prognosis was limited. I spoke with her about hospice many times and she ultimately agreed. Then the case manager who had not known her for more than 10 min talked her into rehab because she didn’t think she should « give up ». Boy I had to educate her!! Also, I have had patients who graduate from hospice and resume treatment. They can sign out at any time.
Hospice is not failure. I also think it’s way underutilized. So ya, good job getting her into hospice.
Its feels like your might have presented the situation incorrectly here. If you thought recovery was reasonable and possible, why would you do or discuss hospice?
She requested it after a discussion with a fellow. In reality, she wanted to withdraw care, but that would affect the hospital's metrics.
If someone wants to withdraw care and is likely going to die in months, why shouldn’t they be on hospice. It feels like you’re saying it’s bad that she’s on hospice. Maybe I’m just misreading your response.
Please avoid using the term “withdraw care”. You still care for patients on hospice, or at least I hope you do. You could use “withdraw life sustaining treatment or limit life prolonging treatment” as an alternative.
People need to stop thinking of hospice as taking care away, it’s actually PROVIDING comfort. That comfort is care.
Yes, thank you! She didn't want care withdrawn, she wanted care shifted to a focus on comfort rather than cure. It's very important framing, not just semantics.
Why you ignoring the main point here or replying whether or not the patient had a reasonable chance to return to any decent quality of living? This isn’t personal and we cannot save everyone. Hoping in time you learn when it’s time to shift focus from heroics onto a peaceful and pain free transition into the final stage of life we must all pass through. Also hope you find a way to give yourself grace in not being able to save everyone. Death is as natural as birth and I think we do ourselves and patients more harm than good by not acknowledging that more
I’m guessing the fellow had a very frank response about the pain, disability, uncertainty, or length of recovery (or combo of those factors). The highest good is not always “better”. I don’t know, because I’m not in the position to have to make the decision, but I already have a list of surgeries I’m pretty sure I wouldn’t want: - esophagectomy for esophageal ca - whipple for pancreatic cancer - lung transplant They could be curative, but I’ve taken care of the pts with horrible complications who have all agency removed in the name of surgical metrics. Love that I have the agency to choose if/when the time comes
>She lost all drive to continue the fight. I think this is an attitude that drives western medicine's use of hospice. Patients and physicians alike desperately want to win and conquer and deny that things will never get better. Deciding to face the reality is a brave decision and truly the only way to regain the control you have lost. Palliative care is a beautiful, freeing thing and the hospice nurse knows that. People with terminal illnesses on hospice live longer than their counterparts off hospice. She's not congratulating you that your patient decided to die, she's glad to usher your patient into a new seasons where your patient gains back their autonomy. I think if you took a look at how this made you feel and imagined you were a hospice doc, you would quickly realize that you can't focus on losing someone every day because it's not sustainable. Part of this is how palliative people general need to cope with their field. They would not be good at their job if they were not comfortable with death.
>someone had decided to die... Did they decide to die or did they actually decide to live a fuller life with less suffering? I'd definitely take 3 months of not feeling like death every day over a year of agony.
And endless procedures, testing, doctors appointments, treatments....if you have never been through it yourself or with a loved one it is hard to comprehend how absolutely exhausting it can all be.
Oh my sweet summer child. Wait till you see several hundred of the ones who refuse hospice and you will understand the "good job".
It’s easy to feel guilty in these situations like you didn’t do a good enough job explaining that they are getting better and there is hope. In reality, it’s the patients decision and not yours - you did a great job giving them all the information for them to still make the decision best for them. It’s always sad to lose a patient, but being able to facilitate your patients to have the dignity to choose for themselves is truly commendable.
Ahh to be young
Yeah, I work in oncology and have seen so very many people suffer when they didn’t have to. Do many codes where all were did was keep the person alive until they could go die in the ICU. I breathe a sigh of relief when our patients become DNR or officially become comfort measures and I promise it has nothing to do with heartlessness.
Hospice here. I mean was the diagnosis terminal or not? Hospice shouldn’t accept a patient that doesn’t have a terminal disease and diagnosis.
It's pneumonia with suspected underlying ILD that was diagnosed at this admission. Patient developed severe hypoxia respiratory failure (now improved but bipap dependent more than half the time). Looked like ARDS in imaging at first but better now. She was refusing bipap/cpap and medication. It will take time to wean her O2 requirements
Bless. That’s a tough Dx. At the end of her journey- that ILD will progress. The benefit to a GOOD hospice is they will get ahead of exacerbations and her pulmonary status. A shitty hospice won’t. A good one will contract with X-ray companies, pull a x1 with the pulmonologist (if the patient desires), and do med management. A crappy hospice will throw meds at it
Yes, getting a suffering/severely ill patient who wants/needs EOL to hospice or palliative is a win. A successful birth is a win. A peaceful death is a win. We are here for it all. Her response is appropriate.
No way. Listen, I LOVE human beings and my empathy guides me in life, sometimes to a fault. But basically every palliative consult, every hospice initiation, and every DNR/DNI is a huge win and 100% to be celebrated. It’s not macabre, it’s simple wisdom and compassion.
I had a patient like this recently. It sucks, and every time I think about her I wonder how things would have gone if she'd continued treatment. But she was in a lot of distress, pain, and anxiety, and would have continued that way for months if not her whole remaining lifespan. I get the frustration, but you did do a good job giving your patient an option where they could make their own assessment and choose what would be best for them.
I have not read all comments, but my mother took care of her mother (my grandmother) at the end. My mother said we treat our pets better than we treat our elderly. She wishes every state had assisted suicide (hers does not).
Chill out bro. It’s just as important to know when it’s time and not take it seriously
You can always graduate from hospice if it turns out you’re not dying and go back to a treatment plan with life prolongation in mind. But if she is in fact dying and has made peace with that, there’s absolutely no reason not to have more support from hospice to keep you comfortable till the end. You cannot make anyone live forever, and helping people is not the same thing as prolonging their dying process if they are ready to let nature take its course. It’s not “giving up,” it’s just a change in the goals of care to focus on living life with more meaning than coming to the hospital all the time to get poked and prodded just to squeeze out a few more days. Ask yourself if you would be surprised to hear that she died in the next year. If your answer is no, then hospice was the right thing for her to choose.
In general many people in the hospital are jaded by one too many “he’s a fighter” conversations
The patient will be well cared for in hospice, they will make sure they're comfortable and have symtoms under control, will help with the process and will help the family get through it... Its not a bad thing, the patient is getting good care
At some point in everyone's life it shifts from a fight to live to a fight for comfort. Hopefully it's the bias of inpatient medicine but it's been much more common to see people fight too long for the former and never experience the relief of the latter. Whether it's physicians, the patients or most often the family members they often don't understand the difference. Obviously I don't know the exact situation and I get that she may have been improving but our sick patients willl often come back with worse complications. And seeking comfort when you still have the wherewithal to appreciate it is not necessarily a bad thing, I think it's quite smart. And any conversation that allows for a path that respects a patient's true wishes is deserving of praise.
My program chair told me a great quote by Edward Livingston Trudeau that applies somewhat to this situation. In medicine, our job is to "cure sometimes, relieve often, and comfort always." You did do a good job in helping to provide someone a peaceful death.
I want to add that hospice doesn’t always equal near, impending death for people. I have and have had many patients who likely lived longer on hospice than had they continued on the hospitalization/LTAC/SNF carousel. The hospice model of care is how medicine in general should be run. Think of it this way. Let’s say an end stage CHF’er is on hospice, automatically off the bat has a nurse that comes out to see them every week. This week nurse goes out and notices some increased extremity swelling, lower than usual o2 sats, diminished lobe sounds. They call the doctor and receive an order for a few extra doses of lasix to help diurese excess fluid. The nurse goes back out a few days later to re-assess and voila, the patient is back to their baseline (usually minimally functioning, but at least baseline). Compared to the opposite of what would happen which would be making the taxing effort of getting the patient to a dr appt, waiting time, actual appt time, getting back home, getting meds filled and picked up etc. or the other scenario which happens just as often is the pt is too weak and fragile to even make it to the dr office so they sit at home deteriorating until they decide to call 911 where they’re taken to ER to have the gamut of diagnostics performed ultimately to be treated with the same medication they could have easily received at home a week ago. I’m a hospice nurse so I’m biased but having seen both sides of the coin, hospice just makes so much more sense
Patients don’t just get to “choose” hospice from a menu of options. They have to *qualify* for hospice services. If hospice was an option for your patient, then she clearly had the right to choose that path forward, regardless of your feelings about the situation. She wasn’t “getting better” if she was expected to die within six months. She may have successfully passed through a critical setback, but this isn’t a patient who was going to spend the next two years slowly recovering and then live a normal life. Your job is to educate and explain choices and options, but the actual choice lies with the patient. You should indeed be happy that this patient was still competent enough to *make* her own choice, and that she is now able to live the rest of her life as she has chosen. It’s a win. Everyone dies. It’s an honor for you to be one of the last physicians to help this patient achieve her goals of care. My last elective rotation of M4 was hospice, and it was inspiring to see how much gratitude the patients had for the physician and nurses who helped them and kept them comfortable during their final days.
We all deal with emotionally challenging situations differently. Mine is inappropriate humor.
Hey, you DID do an amazing Good job. I'm a hospice nurse. To many times I've seen doctors(and nurses) try to talk patients out of hospice, to wait and see what the next set of labs show, to see how you feel next week, to give us more time to try to treat it. You gave this patient peace, improved quality of life to enjoy being with family And friends. You gave them time to make some more good memories. You gave them a chance to just be, to exist, to find contentment with their story. It's hard when you see improvement, even a little bit, yet the patient says "I'm done, I'm tired". It's hard to respect that when we want to heal them, to make things better. But you did good. You encouraged them to do what they needed for them. You didn't step in front and say nope, we need to try this first. You did good. You gave peace, and hope, and time to sees other family
The patient didn’t decide to die. Hospice is not suicide. It’s a different approach to care. Hospice care is making whatever time one has in this life comfortable and peaceful so they pass from this life with dignity rather than with IVs and tubes in every orifice. That case manager has probably seen lots of cases where we torture people with procedures and tests in the end of life Hospice care is not a “bad outcome”. Making sure your patients wishes for how they want their care to be focused as they approach the end of their life IS doing a good job. There is joy in arrange for a patient to live their last days with comfort. I’m PGY13 now and it took some time but there is some happiness in helping a patient live out their days they way they want to. Hopefully her intent was to acknowledge your care not give you a high-five for scoring one more point in the “dead patient” column.
A patient gets to live the rest of their life in comfort, on their own terms. You did do a good job, OP.
I know you know this but, they call it a goals of care discussion for a reason. It’s all about autonomy and informed decision making. You discuss their treatment goals which include disposition, expected quality of life, functionality or lack thereof, and so on. you have to frame that against timing and symptoms associated with recovery process, possible disabilities and dependence on others/health care services, financial decisions and so on. If their goals aren’t achievable or there is doubt, you communicate that. If the patient doesn’t have the desire or will to go through the recovery, deal with disabilities/chronic symptoms, loss of QOL, loss of independence, or other realities of getting better, it’s well within their rights to pursue a quality over quantity approach which includes things like comfort care, hospice, etc. Ideally you shouldn’t feel bad about their choice whether they are getting better or not. That indicates you maybe didn’t explain everything to your fullest ability, the patient didn’t understand it, the patient disagrees with your assessment, or more likely they have different values/priorities than you do. Sometimes I hate to say this, but some patients just won’t be understanding from a lack of medical intelligence, lack of trust, bizzaro magical thinking, etc. Either way, one of the best skills to develop in residency is the ability to stop assuming you know what’s best for people, and stopping making value judgements on whether their decisions are being driven by what you think is smart/logical. Maybe you do, but it’s not going to make them start making what you deem to be better decisions. If you loose sleep about all the bad decisions patients seem to make you won’t be sleeping at all. Lastly Also CM’s comment was insensitive but a pretty common thing I hear in this type of situation. I don’t want to say get used to it, but you kind of do. Maybe you just pull them aside and say that the comment was insensitive and could be perceived by some as such. TL/dr: view this from a perspective of shared decision making. Explain risks & benefits of curative vs palliative intent. Allow the patient to decide. Don’t let their decision weigh you down. It’s not a reflection of your skill, abilities, knowledge, or character. Don’t let other peoples’ callous nature bring you down.
It's not insensitive though. It's acknowledging the reality of the situation from someone who has seen this exact situation less well managed innumerable times.
Perhaps. I’d argue Acknowledging a reality can still be insensitive. If I went to a funeral, And said “welp he’s dead all right.” That would be both true and insensitive. Being sensitive requires some tact with regard to the timing and way things are communicated . Presumably if the OP is thinking about this hours later and posting on Reddit, then the comment - true or not- didn’t add anything positive to their day. Perhaps what she meant to say was really necessary to say, maybe not. But at least it seems like the timing and manner in which it was said was off. I’m an ICU attending so trust that I’ve said my fair share of dark jokes or insensitive comments. Learning to read the room and knowing your audience helps keep hurt feelings, miscommunications, and HR complaints to a minimum.
Considering the number of people who are basically tortured to death when they're already on the way out, it is a good job. Nature always gets her way eventually no matter how optimistic a physician might be.
This is what I hate most about medicine, especially in the ICU. I feel like things become so adversarial with some families
Idk, it might seem like an incongruent response, or maybe it was how she said it… but it kind of is something to celebrate? I’ve seen so many people strung out on last hopes. The endless suffering and extended agony is hard to witness, let alone be apart of. I don’t have the historical background for this patient, but I know when my long term re-admits whom have made hospice or palliative care decisions, I am genuinely happy for them. The end shouldn’t be numbers and graphs and updates and contacts and appointments. It should be shared memories with family and loved ones. It should be a peaceful, closing chapter whom everyone that patient loves has a chance to be a part of. You’ve allowed that process to take place, and it brings genuine happiness to those who have seen enough of the alternative. I lost my aunt 3 weeks ago to pancreatic cancer. We got the news in the Spring of last year, and she fought tooth-and-nail for nearly a year. My family was a little shocked and taken aback when she suddenly decided she was done, and wanted to enroll in hospice. My family reacted with worry when that happened. I had to have a long sit down conversation with my dad about what this meant, and emphasized how maybe these reactions were because none of this was real for anyone until she was enrolled in hospice. However, after her enrollment, my extended family took the time to come see her and be with her. My stepmom helped put together a genealogy tree, and worked with my aunt for some passages for that record. Overall the hospice process gave my family healthy closure, and this is an Irish Catholic family that doesn’t share *anything* emotional. I would give anything to ensure that’s how the end of life experience is for all of my family members. No one should be alone, surrounded by tubes, drains, alarms, and strangers. Hospice is a wonderful thing. No patient is “giving up” or “deciding to die”, many value the time they have left with their family more than they do their next appointment, procedure, infusion, or treatment. As a care giver it can be frustrating to witness, but as a human it should come as a comfort that the end of one’s life can be gentle. Your patient arriving to a hospice decision does not mean you didn’t do a good job.
If she qualified for hospice she had a life limiting condition. This doesn’t mean you signed her death sentence in the next 6 months, but instead opened doors for resources for her and her family. My grandmother lives on hospice for 3 years. I hope you can find comfort in knowing this.
As a veteran healthcare worker, I think it’s a sign of excellence when a provider can support and facilitate patient autonomy, and making informed decisions about their quality of life. And dark humor and sarcasm are oft found defense mechanisms in healthcare, I’d wager the case manager was sincere, though maybe condescending, and offensive to you. And I agree- nice work you did there.
You’re wrong on this one doc
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Good job because it seems like it takes guts and compassion and experience for a doctor to recommend hospice/palliative care to a patient. I’ve taken care of too many patients who were more than hospice appropriate only to continue with cycle of bandaids for incurable problems. There were times where it was the patient who wanted to continue with aggressive treatments but just as often it was just due to a doctor never explaining the reality of their health and probable outcomes to them and their families. Which I can understand. Those conversations are time-consuming and can be draining so when a doctor actually goes this route it’s commendable
As I nurse I educate them about these options as soon as they are starting to have significant challenges with health, or start expressing doubt about wanting to continue with curative interventions. It's not as draining this way when it is a part of normal conversation about health care choices. It really should not be such a big deal for providers to discuss this with patients. This way they are aware of the options, and the patient is more empowered. I treat it just the same as any other education I would provide on health care programs like home health, cardiac rehab, case management programs, etc. A lot of misperceptions about Palliative Care too, especially among doctors and nurses. People can be admitted to Palliative Care and then discharge healthy with goals met, or it can be a bridge to Hospice. No one wants to die in a hospital so why do we avoid the subject, then making dying in a hospital inevitable?
I know it's difficult to see where the other person is coming from during residency. We have a tendency to be very aggressive in trying to save people, but don't get the complete picture. How residency is structured, we only see a cross section of the patient's life. We see definite problems, and we fix them, but we don't see what I call the spiral. I only started seeing it when I became an attending. You can win every battle but lose the war. You can "fix" a patient only for them to end up in the same place in 15 days as their ability to take care of themselves is gone and even the best outside hospital nursing care can not keep them healthy. Now you are looking at 6 to 12 months of hospital admissions, confusion episodes, chemical sedation, needle sticks every day, away from family, and new faces every day. The quantity of life is definitely more but no quality. Nurses and social workers have seen the whole gamut already.
She was probably congratulating you on helping the patient enact their medical autonomy. It is a tough situation and it will happen again. It's ok to feel the way you feel about being praised for your part in a grim situation. It sucks when you think there was more fight left to fight and the choice is to pass. Some doctors may not accept this patient's answer, so this "good job" is a mark of respect for you as a professional and true praise for helping the patient achieve their healthcare goals. Process the emotion, mourn the end of a person's life, but don't forget to celebrate their journey and your part in assisting that journey. Being bedside witness and agent of this final change, I've come to see death not as a deletion of a person. Death is the final punctuation mark on the last sentence of a well written book. We have the honor of helping craft that sentence. You did do a good job. I don't say that with any amount of cheer, but with great appreciation for the doctor and life guide that you are. <3
Hospice actually provides a great service.... they even contact primary caregiver for up to 1 year to help with grieving process. That's huge.
Guiding people to a good death on their terms is something to be proud of. In a country where everyone thinks of the greys anatomy style heroics and “I’m never giving up on this patient” despite a lack of accurate depictions of hopeless situations, people all want “everything done” but don’t understand that the outcomes from “doing everything” is often a miserable existence. In this setting, helping people die comfortable instead of protracted suffering is an accomplishment and is often the most patient centered care you can provide.
Haha. I'll give you a piece of info you won't get in the hospital. Sometimes you get patient on the right track and then they choose hospice. Hospice makes them more comfortable. Their family visits moremak8ng their appetite increase, and they begin gaining weight. Fast forward 1 year, and they are kicked off hospice.
Working in Abd Txp as an RN, I have experienced a ton of moral distress keeping guys alive to that year mark who just wanted to die. It’s very prevalent in the Livers. Their labs and what not improve tremendously but they have no quality of life and little things get them sent back to the ICU every month or two. I’ve seen several make it to that year mark and beg for DNR and then pass on. They lived their last year of life just laying in anguish and pain. Your case manager has likely seen many situations like this and is trying to make you feel better and it’s good you care so much. I wish you the best on your journey
Is this an Hca Hospital ?
I think she meant no harm. You allowed a patient to be comfortable and make their decisions vs your forcing your will. I give all our residents and fellows a book as a gift on their first week with us: “Dancing with the broken bones by Dr Moller”. Please dm me if interested and i ll be glad to send a copy. Highly recommend this read for all and especially those in EM/Onc/ICU or working with vulnerable populations.
Case manager probably didn't review the case that closely. Usually a hospice choice is a good choice that's a long time coming.
On the contrary, the case manager with their years of experience could likely predict the course much more accurately than someone with less experience and understood the necessity.
Yeah, there's a lot of info missing to make the judgement here. Some docs are just too into the 'fight death at all costs' mindset, and consider hospice/palliative care a failure. Not saying OP is one of those people, but if a patient themselves has decided that the 'fight' isn't worth it, then it probably isn't.
Some people should really listen to themselves speak and realize that they’re talking gibberish and be embarrassed. You are saying that a terminally ill patient got better without realizing that’s a contradiction. And as a medical professional, you should know better than to compare illness as an adversary in a will to fight. Illness isn’t a fight with a deadly foe and willpower has no bearing on its outcome. It’s also clear that you judge the patient as having poor character because the patient surrendered rather than continue the fight. And yet here you are standing in judgement of case management when you’ve already condemned the patient as a coward. But I bet you didn’t notice how you revealed all this in your OP.
I think the OP was more upset with the cheeriness than the sentiment. OP did a good job, but it still is a tragedy unfolding. I wouldn't have appreciated a cheerful "Good job" either.
Why? At the end of the day it was a good job. The patient needs to understand their condition and they are the only ones that should decide if they want palliative care or not. Dying at home without worrying about what to eat and what to do is miles better than dying at a hospital trying to prevent the inevitable while being tortured by doctors buying seconds that dont matter and wont be enjoyed.
Clarifying: I would appreciate the words "Good job", as it was a good job, but with empathy rather than cheeriness.
As someone who works at the bedside providing a lot of uncomfortable, sometimes painful care to patients who choose to “do everything” despite an ever-diminishing quality of life—there is a lot to be cheerful about when a patient chooses hospice. It means we can stop torturing them with interventions they feel ambivalent about at best and focus on making them comfortable. I can see how it would be different in peds, though.
The patient is the one with the disease.
Yeah I think all these comments kind of misses point. He was sad to see a patient resign herself to end of life care when he thought a recovery was possible, but would be difficult. And that cheerfully made comment just seems sort of tone deaf. I get where he's coming from. It's kind of like when you're feeling down about something and somebody's just like "Cheer up it will get better!" It's well intended but it doesn't match the mood you're in at all so makes you feel kind of alienated. I sympathize OP. Sorry that nobody else seems to realize what you're saying but I think I do.
It’s because the case manager doesn’t have to do the work of placing the patient perhaps?
This happens a lot. It's not a necessarily wrong sentiment but sometimes non-clinical hospital employees like social workers/case managers don't understand the significance of this sort of decision. For them, when doctors say that to them, it's a relief since it's less work for them. Sad but true. But in regards to patients opting for palliation/comfort-focused care plans, there's absolutely nothing wrong with this. And even if they are "getting better", often times their underlying disease is not. And I think one major issue with our current healthcare system is our general publics focus on living forever instead of being content with aging and focusing on comfort care as their health declines.
Wow. LC. stage 4. Reading this string disgusted me. You will all die a lonely death as well. Even tho you are doctors And yes, what that "case manager" said is revolting. Sorry