How do I tell my dad he's (probably) not going to get better?
November 21, 2016 10:10 PM Subscribe
Dad had stroke. 3 years on, he still has difficulty swallowing and talking. How do I tell him that his chances of full recovery are very low? Complication: he's pinning his hopes on trying an unproven, expensive, and potentially dangerous experimental drug.
My father had a brainstem stroke 3 years ago. He was lucky to survive, but is disabled. He has trouble talking, swallowing and eating.
I've spoken to doctors, and they say that chances of recovering the functions he lost are very slim. It's likely that the functions he's lost are not going to come back - most of the recovery happens right after the stroke, not this long afterwards. The only thing proven to help, if at all, is rehabilitation - focused throat and mouth exercises.
He says he wants to eat real food. His culture (Korean), like many others, places much weight on eating well - a diet of rice (i.e., whole grains), vegetables, and meat, which are all things he can't eat. He reasons that because he can't eat those things, he can't be healthy, and thus recover. His diet of liquid nutrition is holding him back from being his old self.
So he's looking for cures. He's been talking about a supposed cure in the form of an off-label use of the drug etanercept. He saw this drug work for other stroke patients on Youtube, and wants to try it himself.
The problems are many, as I see it: 1) there's no evidence it works, according to the American Academy of Neurology (AAN) link, 2) it is associated with serious side effects as per the same report from the AAN 3) it's expensive, at $440 per vial + other medical fees, and 4) it's offered in CA and FL, and he's in Sydney, Australia - not sure he can travel with his list of problems, which include sometimes not breathing at night so he sleeps with a machine that monitors his breathing.
So, how do I tell him that he's probably not going to get better, and that experimental treatments probably won't help him? Has anyone else had difficult conversations like this?
My father had a brainstem stroke 3 years ago. He was lucky to survive, but is disabled. He has trouble talking, swallowing and eating.
I've spoken to doctors, and they say that chances of recovering the functions he lost are very slim. It's likely that the functions he's lost are not going to come back - most of the recovery happens right after the stroke, not this long afterwards. The only thing proven to help, if at all, is rehabilitation - focused throat and mouth exercises.
He says he wants to eat real food. His culture (Korean), like many others, places much weight on eating well - a diet of rice (i.e., whole grains), vegetables, and meat, which are all things he can't eat. He reasons that because he can't eat those things, he can't be healthy, and thus recover. His diet of liquid nutrition is holding him back from being his old self.
So he's looking for cures. He's been talking about a supposed cure in the form of an off-label use of the drug etanercept. He saw this drug work for other stroke patients on Youtube, and wants to try it himself.
The problems are many, as I see it: 1) there's no evidence it works, according to the American Academy of Neurology (AAN) link, 2) it is associated with serious side effects as per the same report from the AAN 3) it's expensive, at $440 per vial + other medical fees, and 4) it's offered in CA and FL, and he's in Sydney, Australia - not sure he can travel with his list of problems, which include sometimes not breathing at night so he sleeps with a machine that monitors his breathing.
So, how do I tell him that he's probably not going to get better, and that experimental treatments probably won't help him? Has anyone else had difficult conversations like this?
Best answer: The problem with stroke recovery is that we don't understand it very well, and doctors in particular are dangerously ill-informed unless they are stroke specialists.
I'm a Speech and Language Therapist specialising in dysphagia (problems swallowing), but not a stroke specialist. I have seen people improve years after stroke, and there are certainly reports in the literature of various exercise-based therapies causing improvement many years after.
However, these improvements tend to be small and incremental. Sometimes they're enough to make a big difference to the person, so sometimes they're worth it.
I haven't heard anything about the experimental drug.
If I were in your dad's shoes and I had some money, I would be finding out whether I could be evaluated by The Rose Centre in New Zealand or the Steele swallowing lab in Toronto. Those are the places that are publishing vaguely encouraging results right now.
I don't think you will be able to convince your dad from the outside that he won't recover more. I have had that conversation with many, many people and never succeeded. The best alternative is probably to try to divert his efforts onto things that are not dangerous or financially ruinous. For some people that can be stroke activism, for some it is continuing to strive towards recovery.
You don't give many details about his swallow disorder (as that isn't what your question is about!) but I assume he has had a second opinion from a super specialist Speech and Language Therapist? Recently? Sometimes there are small things that can be done easily.
posted by kadia_a at 11:24 PM on November 21, 2016 [18 favorites]
I'm a Speech and Language Therapist specialising in dysphagia (problems swallowing), but not a stroke specialist. I have seen people improve years after stroke, and there are certainly reports in the literature of various exercise-based therapies causing improvement many years after.
However, these improvements tend to be small and incremental. Sometimes they're enough to make a big difference to the person, so sometimes they're worth it.
I haven't heard anything about the experimental drug.
If I were in your dad's shoes and I had some money, I would be finding out whether I could be evaluated by The Rose Centre in New Zealand or the Steele swallowing lab in Toronto. Those are the places that are publishing vaguely encouraging results right now.
I don't think you will be able to convince your dad from the outside that he won't recover more. I have had that conversation with many, many people and never succeeded. The best alternative is probably to try to divert his efforts onto things that are not dangerous or financially ruinous. For some people that can be stroke activism, for some it is continuing to strive towards recovery.
You don't give many details about his swallow disorder (as that isn't what your question is about!) but I assume he has had a second opinion from a super specialist Speech and Language Therapist? Recently? Sometimes there are small things that can be done easily.
posted by kadia_a at 11:24 PM on November 21, 2016 [18 favorites]
Best answer: I don't think it's on you to tell him he's not going to get better. That's a job for his doctors. You can tell him this treatment is a bad idea, for the reasons you outlined above. But he's probably already been told he won't improve, and if he's not ready to settle don't tell him he has to settle. Encourage him as much as you can, but in practical ways.
Rice, meat and vegetables are all things that can be had in liquid form. (Rice milk, veggie smoothies and meat soups.) Are there reasons he can't drink these things? Even if they won't make the difference he's hoping for, at least it might make him feel like he's doing what he can.
My sympathies.
posted by Ursula Hitler at 1:24 AM on November 22, 2016 [6 favorites]
Rice, meat and vegetables are all things that can be had in liquid form. (Rice milk, veggie smoothies and meat soups.) Are there reasons he can't drink these things? Even if they won't make the difference he's hoping for, at least it might make him feel like he's doing what he can.
My sympathies.
posted by Ursula Hitler at 1:24 AM on November 22, 2016 [6 favorites]
Stroke recovery is changing a lot, and not just with drugs. It used to be seen as a fairly flat thing, but is now coming out as a more unknown and changeable field. Your dad is not asking for a full recovery. He's looking for the ability to improve his quality of life. Is he fixating on this drug as a shortcut over physical rehab which is a really bad sign, or seeing it as a way to improve his chances along with rehab? Has he worked with different rehab people to see if there's someone he clicks better with - sometimes it can be a personality thing for finding someone who he feels like he trusts and who motivates well and who truly understands his particular situation.
The three things you list are not mountains compared to what a difference this could make to his overall life. The AAN will take a careful approach, it's a new drug and the negatives listed seem in part to depend on the overall health of the patients in the trial, the expense is something that only he needs to consider (unless you are the one supporting him financially), and sick people can travel with enough preparation and assistance. He could do stop-overs on the plane trip to break it up into short-haul flights.
I've had to take expensive meds at times to improve quality of life for chronic illness and chosen at times not to pursue expensive treatment because of costs, and I've had multiple TIAs, so I'm aware acutely of cost and lifestyle choices post-stroke recovery. Being able to eat isn't just a cultural thing, it's a huge emotional and personal thing and part of daily life. The times I've had to go on a liquid diet because of health issues have been intensely depressing and restrictive. I would want to hear practical cautious support for rehab and exploring this as an option from my daughter, not dismissal of it as a stupid fantasy. I would also not want to hear my hopes for any recovery as futile - hope for improvement is precious and needs to be encouraged.
Doctors, in my experience focus on medically quantifiable improvement, not quality of life improvement. They want cured, not better. Your dad wants better.
posted by dorothyisunderwood at 1:31 AM on November 22, 2016 [8 favorites]
The three things you list are not mountains compared to what a difference this could make to his overall life. The AAN will take a careful approach, it's a new drug and the negatives listed seem in part to depend on the overall health of the patients in the trial, the expense is something that only he needs to consider (unless you are the one supporting him financially), and sick people can travel with enough preparation and assistance. He could do stop-overs on the plane trip to break it up into short-haul flights.
I've had to take expensive meds at times to improve quality of life for chronic illness and chosen at times not to pursue expensive treatment because of costs, and I've had multiple TIAs, so I'm aware acutely of cost and lifestyle choices post-stroke recovery. Being able to eat isn't just a cultural thing, it's a huge emotional and personal thing and part of daily life. The times I've had to go on a liquid diet because of health issues have been intensely depressing and restrictive. I would want to hear practical cautious support for rehab and exploring this as an option from my daughter, not dismissal of it as a stupid fantasy. I would also not want to hear my hopes for any recovery as futile - hope for improvement is precious and needs to be encouraged.
Doctors, in my experience focus on medically quantifiable improvement, not quality of life improvement. They want cured, not better. Your dad wants better.
posted by dorothyisunderwood at 1:31 AM on November 22, 2016 [8 favorites]
Best answer: I agree that this is a job for his medical team. Just be aware telling him and convincing him are two different things; the latter may never happen regardless of how the former is handled. My best to your family.
posted by Room 641-A at 3:24 AM on November 22, 2016 [3 favorites]
posted by Room 641-A at 3:24 AM on November 22, 2016 [3 favorites]
Two years before prostate cancer killed him, my father had a stroke that left him badly aphasic, confined him to a wheelchair and made him too uncoordinated to feed himself.
The last two years of his life would in no way have been better for him if he'd given up hope of recovering the abilities the stroke had cost him.
If my father had wanted to take a punt on an unproven treatment with some evidence in support as well as a plausible proposed mechanism of action, I'd have been behind him 100%.
If I'm reading the linked AAN material correctly, adverse effects have only been reported with many-times-repeated use of this drug while the proposed stroke treatment involves one use of it.
I'm having difficulty seeing the upside in talking your father out of this.
posted by flabdablet at 6:32 AM on November 22, 2016 [12 favorites]
The last two years of his life would in no way have been better for him if he'd given up hope of recovering the abilities the stroke had cost him.
If my father had wanted to take a punt on an unproven treatment with some evidence in support as well as a plausible proposed mechanism of action, I'd have been behind him 100%.
If I'm reading the linked AAN material correctly, adverse effects have only been reported with many-times-repeated use of this drug while the proposed stroke treatment involves one use of it.
I'm having difficulty seeing the upside in talking your father out of this.
posted by flabdablet at 6:32 AM on November 22, 2016 [12 favorites]
I don't have personal experience with strokes, but I do have an incurable cancer. Food no longer tastes good to me, and my mouth is sore. Losing the pleasure of eating even in this way is miserable, though in my case it is probably temporary. Hope for getting better might be what is enabling your father to get through the day. Do you really want to take that away from him? Even if you somehow succeed, you may end up regretting it.
Doctors are not always right about outcomes. There are many cases where doctors' predictions have turned out to be wrong or where one doctor thought a situation was hopeless and another thought a patient should be treated, with ultimately positive results. Some studies have shown that people in so-called denial have better health outcomes. You simply cannot know what will ultimately happen with your father.
If your father can afford this treatment, it should be his choice whether it is worth trying. Similarly, he may feel that the dangerous side effects are worth the risk. Again, this should be his choice. I understand that it is very difficult for you to deal with this, but please do not try to get him to give up whatever hope he has.
posted by FencingGal at 7:08 AM on November 22, 2016 [5 favorites]
Doctors are not always right about outcomes. There are many cases where doctors' predictions have turned out to be wrong or where one doctor thought a situation was hopeless and another thought a patient should be treated, with ultimately positive results. Some studies have shown that people in so-called denial have better health outcomes. You simply cannot know what will ultimately happen with your father.
If your father can afford this treatment, it should be his choice whether it is worth trying. Similarly, he may feel that the dangerous side effects are worth the risk. Again, this should be his choice. I understand that it is very difficult for you to deal with this, but please do not try to get him to give up whatever hope he has.
posted by FencingGal at 7:08 AM on November 22, 2016 [5 favorites]
Response by poster: Thanks for the suggestions.
To clarify, I'm not trying to take away his hope for improvement. My hope is for him to continue rehabilitation, as it's the only proven strategy for improvement.
But I'm not sure I can support his wish to try out an experimental treatment. The only evidence for this drug is an open-label (i.e., non-blind) trial with no control group. 'Improvement' was assessed by personnel in the medical clinic which had licensed the drug for stroke treatment. It's possible that this drug works, but it's flimsy evidence at best.
If he wants to try out this drug, he'll need lots of help, as neither his or his wife's English is sufficient to pull it off. I'm probably the only one in the family who can translate both Korean and English adequately for the task. Money is a limitation, and it likely rules out him being able to hire/find people who can help in my place.
The suggestion about getting a medical professional he trusts to deliver the news might be the best bet. I am not prepared to risk anyone's (let alone my father's) wellbeing on flimsy evidence. But I suspect my not helping him to get the experimental treatment will cause friction.
posted by butwheresthesushi at 9:29 AM on November 22, 2016
To clarify, I'm not trying to take away his hope for improvement. My hope is for him to continue rehabilitation, as it's the only proven strategy for improvement.
But I'm not sure I can support his wish to try out an experimental treatment. The only evidence for this drug is an open-label (i.e., non-blind) trial with no control group. 'Improvement' was assessed by personnel in the medical clinic which had licensed the drug for stroke treatment. It's possible that this drug works, but it's flimsy evidence at best.
If he wants to try out this drug, he'll need lots of help, as neither his or his wife's English is sufficient to pull it off. I'm probably the only one in the family who can translate both Korean and English adequately for the task. Money is a limitation, and it likely rules out him being able to hire/find people who can help in my place.
The suggestion about getting a medical professional he trusts to deliver the news might be the best bet. I am not prepared to risk anyone's (let alone my father's) wellbeing on flimsy evidence. But I suspect my not helping him to get the experimental treatment will cause friction.
posted by butwheresthesushi at 9:29 AM on November 22, 2016
Best answer: Before I say anything, I do want to point you to these studies: one, two, three. I'd actually come here to say, "Yeah, no, etanercept is a TNF inhibitor that's used for rheumatoid arthritis (I have been on it for this disease) and has nothing to do with stroke, this is not a good idea," but then I found these, which indicate some success many years after stroke. So it's probably more in the realm of "potential, but still extremely experimental and prohibitively expensive treatment" rather than "BS miracle cure stuff found on Youtube." Etanercept has many serious side effects listed, but many autoimmune patients are on it for years without experiencing any of them except for increased susceptibility to infections (you get colds more often, you have to go off of the drugs if you want to have surgery). Like any biologic drug, it has its risks, but they are manageable. I am definitely not saying that you should ignore your instincts here and get behind this "cure;" just wanted to pass on that information, which I found surprising.
As someone with several chronic illnesses, I know very well the necessity of balancing trying everything and hoping for a "cure" with accepting reality, adjusting psychologically, and getting on with the practicalities of life. In your father's situation, only you & your family can judge that, and money (as well as the difficulties of travel you mention) are a very real concern.
I have always opted to not try the expensive experimental treatments, and focus on making my day-to-day life more livable with proven interventions, but several family members and relatives do not agree. Honestly, I think it's some peoples' way of coping. A kind of deferral/denial: the idea that if you stop trying new treatments, you've "given up." So really I think the realm problem here might be less medical and more psychological: your father hasn't found acceptance yet. It sounds like he is having trouble coping with the reality of his changed life, and so is hanging on to hope for a miracle cure -- understandably so; sudden disability can be so hard. But people can waste years of their life chasing after cure, and not living the remaining life that is in front of them.
Is there any possibility of counselling? (I know the language barrier might be an issue.) Helping him come to terms with this might require a lot of time and talking through it, and it shouldn't fall entirely to you to have to convince him. Failing that, do you have any trusted relatives or family friends who are coping with health challenges, old age, etc. that he could talk to for some perspective? Do any of his doctors have a particularly good "touch" with patients, and would they be willing to sit down with him and have a full and honest discussion (or two or three) about the likelihood of his recovery? Sometimes doctors just provide facts and possible treatments without thinking to emphasize to the patient what's really the most likely outcome, and how they should orient their coping. I do agree the information about the treatment should come from a medical professional. My (very traditional) Chinese grandmother sounds like your father, and we always have more success getting the doctor to tell her something first.
My best wishes to your family. It sounds like you are trying your best to take care of your father psychologically and physically, and that it's a difficult, frustrating situation. I hope you can resolve it without too much friction.
posted by stellarc at 4:27 PM on November 22, 2016 [2 favorites]
As someone with several chronic illnesses, I know very well the necessity of balancing trying everything and hoping for a "cure" with accepting reality, adjusting psychologically, and getting on with the practicalities of life. In your father's situation, only you & your family can judge that, and money (as well as the difficulties of travel you mention) are a very real concern.
I have always opted to not try the expensive experimental treatments, and focus on making my day-to-day life more livable with proven interventions, but several family members and relatives do not agree. Honestly, I think it's some peoples' way of coping. A kind of deferral/denial: the idea that if you stop trying new treatments, you've "given up." So really I think the realm problem here might be less medical and more psychological: your father hasn't found acceptance yet. It sounds like he is having trouble coping with the reality of his changed life, and so is hanging on to hope for a miracle cure -- understandably so; sudden disability can be so hard. But people can waste years of their life chasing after cure, and not living the remaining life that is in front of them.
Is there any possibility of counselling? (I know the language barrier might be an issue.) Helping him come to terms with this might require a lot of time and talking through it, and it shouldn't fall entirely to you to have to convince him. Failing that, do you have any trusted relatives or family friends who are coping with health challenges, old age, etc. that he could talk to for some perspective? Do any of his doctors have a particularly good "touch" with patients, and would they be willing to sit down with him and have a full and honest discussion (or two or three) about the likelihood of his recovery? Sometimes doctors just provide facts and possible treatments without thinking to emphasize to the patient what's really the most likely outcome, and how they should orient their coping. I do agree the information about the treatment should come from a medical professional. My (very traditional) Chinese grandmother sounds like your father, and we always have more success getting the doctor to tell her something first.
My best wishes to your family. It sounds like you are trying your best to take care of your father psychologically and physically, and that it's a difficult, frustrating situation. I hope you can resolve it without too much friction.
posted by stellarc at 4:27 PM on November 22, 2016 [2 favorites]
If he's determined to look for a fix, I don't think there's much you can do to deter him. He will probably have to go through this treatment - or at least try to - in order to settle into a more realistic acceptance of changed circumstances.
If he wants to try out this drug, he'll need lots of help, as neither his or his wife's English is sufficient to pull it off. I'm probably the only one in the family who can translate both Korean and English adequately for the task. Money is a limitation, and it likely rules out him being able to hire/find people who can help in my place.
Where are you based (or rather which healthcare system are you dealing with)? The hospitals where I live provide certified medical interpreters for people in need of them - for free, I believe. I realize this is very lucky and probably not very common, but maybe speak to the relevant hospital's patient information department, or a social worker there?
Would you outright refuse to help if he asked? I would just worry that he might not be able to let any anger or resentment about that go, for a while... and that that might be hard on you later. Particularly if he and/or you believe in adult children being responsible for parents, or if - there are just a number of scenarios in which I can see this having long-term emotional impact. Would you be willing to negotiate time?
I think having him talk to a trusted friend knowledgeable about this, first, would be the way to go, for sure. (If they were also Korean, and ideally close to his age, I think that would be very helpful.)
posted by cotton dress sock at 7:19 PM on November 22, 2016 [1 favorite]
If he wants to try out this drug, he'll need lots of help, as neither his or his wife's English is sufficient to pull it off. I'm probably the only one in the family who can translate both Korean and English adequately for the task. Money is a limitation, and it likely rules out him being able to hire/find people who can help in my place.
Where are you based (or rather which healthcare system are you dealing with)? The hospitals where I live provide certified medical interpreters for people in need of them - for free, I believe. I realize this is very lucky and probably not very common, but maybe speak to the relevant hospital's patient information department, or a social worker there?
Would you outright refuse to help if he asked? I would just worry that he might not be able to let any anger or resentment about that go, for a while... and that that might be hard on you later. Particularly if he and/or you believe in adult children being responsible for parents, or if - there are just a number of scenarios in which I can see this having long-term emotional impact. Would you be willing to negotiate time?
I think having him talk to a trusted friend knowledgeable about this, first, would be the way to go, for sure. (If they were also Korean, and ideally close to his age, I think that would be very helpful.)
posted by cotton dress sock at 7:19 PM on November 22, 2016 [1 favorite]
Regardless of what you tell him, is he able to/ would it be comforting for him to eat his preferred foods pureed into a liquid? I know it's not what he WANTS, but if he feels it's important nutritionally, it could be really helpful.
posted by metasarah at 6:52 AM on November 23, 2016
posted by metasarah at 6:52 AM on November 23, 2016
This thread is closed to new comments.
I had to deliver a similar but different message to my ill father, and even *with* support from the hospital, he didn't want to listen. It was not a success. I realised much later that part of the problem was that the message came from me. So you also may want to think about who your father would treat as trusted in this context. You may not be the best person to take the discussion.
posted by frumiousb at 10:31 PM on November 21, 2016 [5 favorites]