Please don't die. How to talk to someone about a medical choice?
October 2, 2017 9:03 AM Subscribe
How can a family talk to someone about a getting a medical procedure that they say they don't want and manage their feelings about it?
This person is in their early 60s, living in a country with an early life expectancy and a poor medical system where anyone that can afford it goes abroad for anything beyond urgent care services. People die of things that are preventable in other countries regularly. The individual has been told that they need heart surgery - maybe a stent or valve repair/replacement (they hear different things from different doctors). The cost would be notable but doable for the family. The individual is currently fine day-to-day but the effects of the heart issues are starting to intrude into normal life.
Family attempts at convincing this stubborn individual to take this more seriously (framed as "we want you to live") are met with an ever-growing list of excuses why they don't want to do it: they don't want to stop smoking/drinking/eating foods they like; it is too expensive (usually with a mention of some big upcoming expense); maybe the health system will get better and more of the cost will be covered, so better to wait; they don't want to be on blood thinners/anti-rejection drugs; all my friends are dying off anyway; etc.
It is difficult to know if the individual really wants to die (although it doesn't seem so); if they are merely being pragmatic about the cost versus extension of/quality of life; if maybe they will change their mind when the effects become more severe; or if they are able to be convinced.
Questions:
- Are there other ways for the immediate family to approach this matter and convey that they would really like this person to be treated beyond "we want you to live because we love you"? Because that isn't working with this stubborn and logical person. One that I've thought of would be to argue that the cost associated with dealing with the effects/keeping them out of pain might be similar to the preventative measure. Another might be trying to find friends/acquaintances that have had the procedure and can talk about it with them. But other ideas are welcome.
- If the individual continues to not want to be treated, how can family manage their feelings about this and interact day-to-day with this person? It is already quite emotionally painful for them. Note that there is no infrastructure of therapy or support groups or hospice care in their location.
This person is in their early 60s, living in a country with an early life expectancy and a poor medical system where anyone that can afford it goes abroad for anything beyond urgent care services. People die of things that are preventable in other countries regularly. The individual has been told that they need heart surgery - maybe a stent or valve repair/replacement (they hear different things from different doctors). The cost would be notable but doable for the family. The individual is currently fine day-to-day but the effects of the heart issues are starting to intrude into normal life.
Family attempts at convincing this stubborn individual to take this more seriously (framed as "we want you to live") are met with an ever-growing list of excuses why they don't want to do it: they don't want to stop smoking/drinking/eating foods they like; it is too expensive (usually with a mention of some big upcoming expense); maybe the health system will get better and more of the cost will be covered, so better to wait; they don't want to be on blood thinners/anti-rejection drugs; all my friends are dying off anyway; etc.
It is difficult to know if the individual really wants to die (although it doesn't seem so); if they are merely being pragmatic about the cost versus extension of/quality of life; if maybe they will change their mind when the effects become more severe; or if they are able to be convinced.
Questions:
- Are there other ways for the immediate family to approach this matter and convey that they would really like this person to be treated beyond "we want you to live because we love you"? Because that isn't working with this stubborn and logical person. One that I've thought of would be to argue that the cost associated with dealing with the effects/keeping them out of pain might be similar to the preventative measure. Another might be trying to find friends/acquaintances that have had the procedure and can talk about it with them. But other ideas are welcome.
- If the individual continues to not want to be treated, how can family manage their feelings about this and interact day-to-day with this person? It is already quite emotionally painful for them. Note that there is no infrastructure of therapy or support groups or hospice care in their location.
In the end, it is their choice. Some people would rather not modify their lifestyles or go through expensive/arduous procedures simply to extend their lives. They could perhaps even be feeling that other decisions are out of their control and so are focusing on what they do have control over. Perhaps something to consider.
With that said, this person could be feeling depressed (age, health changes, changes in their perception or reality of who relies upon them personally or financially, losing loved ones, perhaps approaching the age at which their own parents died - these can all contribute to depression). As amtho says above, can you or other family members find a way to demonstrate how much this person is needed or relied upon? This might help, as might therapy - if it is available and something this person would agree to. More practically speaking, finding peers who have had the procedure might be very helpful, as you suggest. Even an online support group or communal blog of individuals with similar conditions, for them to review and consider.
As for family members' feelings on the subject, I have no easy answers. This is a painful situation, but if their mind is made up, respecting their decision, and respecting their autonomy in that decision, may make all the difference to them (they might even change their mind if they see that loved ones aren't trying to push them in a direction they feel uncomfortable with or unready for).
posted by pammeke at 9:24 AM on October 2, 2017 [3 favorites]
With that said, this person could be feeling depressed (age, health changes, changes in their perception or reality of who relies upon them personally or financially, losing loved ones, perhaps approaching the age at which their own parents died - these can all contribute to depression). As amtho says above, can you or other family members find a way to demonstrate how much this person is needed or relied upon? This might help, as might therapy - if it is available and something this person would agree to. More practically speaking, finding peers who have had the procedure might be very helpful, as you suggest. Even an online support group or communal blog of individuals with similar conditions, for them to review and consider.
As for family members' feelings on the subject, I have no easy answers. This is a painful situation, but if their mind is made up, respecting their decision, and respecting their autonomy in that decision, may make all the difference to them (they might even change their mind if they see that loved ones aren't trying to push them in a direction they feel uncomfortable with or unready for).
posted by pammeke at 9:24 AM on October 2, 2017 [3 favorites]
Since the person is making decisions based on logic and reason, using facts they may not yet have considered is, as you've been doing, probably the best way to approach discussing the subject with them.
Beyond that, realize that ultimately we are all in charge of our own bodies and have the right to make decisions about how our bodies are treated - even when our loved ones disagree with our decisions. People refuse recommended chemotherapy and surgery all the time - this sounds like a similar situation. You can certainly share how you feel, but if you want to be heard, be aware of the boundaries this person has drawn and respect them.
posted by summerstorm at 9:27 AM on October 2, 2017 [4 favorites]
Beyond that, realize that ultimately we are all in charge of our own bodies and have the right to make decisions about how our bodies are treated - even when our loved ones disagree with our decisions. People refuse recommended chemotherapy and surgery all the time - this sounds like a similar situation. You can certainly share how you feel, but if you want to be heard, be aware of the boundaries this person has drawn and respect them.
posted by summerstorm at 9:27 AM on October 2, 2017 [4 favorites]
It sounds like they are dealing with a lot of fear. Have they ever had any type of surgery before? It can seem routine when you're in a society where it has become normalized but heart surgery is quite scary no matter what.
Fear leads to shame, which is what I'm getting from their list of excuses. There are a few different angles of approach here.
Connecting them with an unrelated third party who has had experience undergoing similar health problems and surgeries is a good idea. Also perhaps they could have a video consultation with a doctor who they have reason to trust (like someone who has treated a family member) who can talk things through in a lot of detail. Anything to alleviate ignorance could help, although they have to first admit to that ignorance - and thus some of the shame.
You could also appeal to their sense of pride. Are they proud enough to admit their fear and have the courage to overcome it? Cite times in the past that they have shown courage and connect that to what's happening now. Instead of minimizing their fear you'd be validating their emotions while making it clear that they have the ability to get past them.
They are probably dealing with shame about being a burden on the family, and have thought about how much that burden will increase during recovery. Avoidance of course won't actually relieve that burden. But the family members who would be dealing with it directly could talk about how the difficulties incured would be spread around so no one person would suffer, how willing they are to help, how they know the ill person would do the same in their place for any one of them, etc. Admitting that it will be a difficult process for everyone could help make it seem more doable since no one person will have to shoulder it.
posted by Mizu at 9:32 AM on October 2, 2017 [4 favorites]
Fear leads to shame, which is what I'm getting from their list of excuses. There are a few different angles of approach here.
Connecting them with an unrelated third party who has had experience undergoing similar health problems and surgeries is a good idea. Also perhaps they could have a video consultation with a doctor who they have reason to trust (like someone who has treated a family member) who can talk things through in a lot of detail. Anything to alleviate ignorance could help, although they have to first admit to that ignorance - and thus some of the shame.
You could also appeal to their sense of pride. Are they proud enough to admit their fear and have the courage to overcome it? Cite times in the past that they have shown courage and connect that to what's happening now. Instead of minimizing their fear you'd be validating their emotions while making it clear that they have the ability to get past them.
They are probably dealing with shame about being a burden on the family, and have thought about how much that burden will increase during recovery. Avoidance of course won't actually relieve that burden. But the family members who would be dealing with it directly could talk about how the difficulties incured would be spread around so no one person would suffer, how willing they are to help, how they know the ill person would do the same in their place for any one of them, etc. Admitting that it will be a difficult process for everyone could help make it seem more doable since no one person will have to shoulder it.
posted by Mizu at 9:32 AM on October 2, 2017 [4 favorites]
I think that talking to some people who have had the procedure might help give them a more complete picture of what be involved, especially if this is a person who has not had a lot of experience with international medical care.
Another option would be to pick someone who can be a loving and supportive listener and have them talk to about all the reasons why they don't want to do it and agree with them that those sound like good reasons and that even though the family wants them to do the surgery, the listener can see why not doing seems like a good idea. The listener doesn't need to complete agree with not doing it but rather show acceptance and respect for the family member's position. Sometimes this will help reveal more real reasons for the objection, sometimes having one's feelings and reason accepted can help free the person up to change position instead of getting locked tighter and tighter in response to the opposition.
Good luck - this sounds stressful and the underlying of a power struggle regarding something so important must be hard for everyone in the family
posted by metahawk at 9:39 AM on October 2, 2017
Another option would be to pick someone who can be a loving and supportive listener and have them talk to about all the reasons why they don't want to do it and agree with them that those sound like good reasons and that even though the family wants them to do the surgery, the listener can see why not doing seems like a good idea. The listener doesn't need to complete agree with not doing it but rather show acceptance and respect for the family member's position. Sometimes this will help reveal more real reasons for the objection, sometimes having one's feelings and reason accepted can help free the person up to change position instead of getting locked tighter and tighter in response to the opposition.
Good luck - this sounds stressful and the underlying of a power struggle regarding something so important must be hard for everyone in the family
posted by metahawk at 9:39 AM on October 2, 2017
My dad was incredibly unhealthy - smoked, drank significantly, ate a large bag of potato chips every night with soda, zero vegetables, all of that. His first chronic disease was COPD and he continued to smoke. It finally took several heart attacks and a surgery where his chance of dying was much higher than his chances of living and months in the hospital to actually clue in that he was likely to die soon if he kept living this way. Even still, he waffles between green smoothie binges and too much beer. Mostly the latter.
The long period of my early teens to late twenties led to a lot of resentment of him by my sisters and I - my sisters in particular as they still live in the same province as he is, are nurses, and therefore know that they're more responsible for him should he require familial care. We could not understand how he could be so selfish - knowing the toll it took on us to watch him decline in his 50's, he still acted the way he did.
Now at 35, I have a lot more empathy for my dad. His life was a lot harder than I gave him credit for - he lost a good job, had a house purchase massively bite us in the ass, we eventually ended up on social assistance, his marriage ended, and he took jobs that he hated just to support three kids. Despite all of that hard work, and all of his kids who are successes in their own lives because of him, I think deep down my dad looks at himself as someone who failed in life. That burden has got to be overwhelming and ever present and so I understand why, feeling this way, his valuation for the future is probably less than mine. He's in his 60's, unlikely even with perfect adherence to his doctor's rules ever to be able to do more than take a golf cart around 18 holes, so the upside to fixing his issues, in his mind, is pretty low.
I found peace with my dad's decisions through better understanding that there is a huge chasm between joy and outright suicide in life where most of us live - many people have low-lying suffering that you cannot see or they won't talk about that factors into their day-to-day life and big decisions. No surgery or life change can fix that for some people. My dad has heard my wishes for him to live a better, healthier, longer life - I know that. He's not making the choices that I would make in his position, but then again, I also don't have a 62-year-old failing body, his feelings and baggage, daily pain, and the various other forces that are acting on him every single day that might lead me to a different conclusion.
posted by notorious medium at 9:41 AM on October 2, 2017 [26 favorites]
The long period of my early teens to late twenties led to a lot of resentment of him by my sisters and I - my sisters in particular as they still live in the same province as he is, are nurses, and therefore know that they're more responsible for him should he require familial care. We could not understand how he could be so selfish - knowing the toll it took on us to watch him decline in his 50's, he still acted the way he did.
Now at 35, I have a lot more empathy for my dad. His life was a lot harder than I gave him credit for - he lost a good job, had a house purchase massively bite us in the ass, we eventually ended up on social assistance, his marriage ended, and he took jobs that he hated just to support three kids. Despite all of that hard work, and all of his kids who are successes in their own lives because of him, I think deep down my dad looks at himself as someone who failed in life. That burden has got to be overwhelming and ever present and so I understand why, feeling this way, his valuation for the future is probably less than mine. He's in his 60's, unlikely even with perfect adherence to his doctor's rules ever to be able to do more than take a golf cart around 18 holes, so the upside to fixing his issues, in his mind, is pretty low.
I found peace with my dad's decisions through better understanding that there is a huge chasm between joy and outright suicide in life where most of us live - many people have low-lying suffering that you cannot see or they won't talk about that factors into their day-to-day life and big decisions. No surgery or life change can fix that for some people. My dad has heard my wishes for him to live a better, healthier, longer life - I know that. He's not making the choices that I would make in his position, but then again, I also don't have a 62-year-old failing body, his feelings and baggage, daily pain, and the various other forces that are acting on him every single day that might lead me to a different conclusion.
posted by notorious medium at 9:41 AM on October 2, 2017 [26 favorites]
I don't know whether it will be possible to convince this relative to explore heart surgery, but I notice that misunderstanding seems to be driving part of their reluctance. For example, if your relative needs a valve replacement that wouldn't necessarily require anti-rejection drugs or long-term anticoagulation (blood thinners). Though mechanical valve replacements do require taking anticoagulants long-term, a tissue valve, which generally only requires temporary use of blood thinners, is often a reasonable option for a person in their 60s. And neither valve type requires the sort of medications a transplant requires. I know less about stents, but I don't think they usually require warfarin/coumadin nor anti-rejection medications. My point is that perhaps if you can make your relative appreciate their mistaken assumptions it might soften their resistance. Sometimes looking at the facts can help a person to consider options they may be dreading. If someone can help this relative see how good the treatment options may be, they might be willing to get a consultation at least. It sounds like at the moment very little is known about their condition, so that would be an excellent first step.
posted by reren at 10:08 AM on October 2, 2017
posted by reren at 10:08 AM on October 2, 2017
Focus on the most likely culprit: money. He literally may not have it, and doesn't want to admit it. Or he may have the money but doesn't want to spend it from a desire to not become a financial burden upon, and when he dies provide an inheritance to, his children. The family taking up a collection and presenting the cost of the surgery and rehab to him as a gift might make a difference.
posted by MattD at 10:52 AM on October 2, 2017 [2 favorites]
posted by MattD at 10:52 AM on October 2, 2017 [2 favorites]
In my (US) experience, the cost of a stent or even valve replacement can be dwarfed by the cost of a cardiac care unit following a heart attack. and you can schedule and plan for the stent/valve. After having stents placed I took an anti-clotting drug for a year but it didn't require the serious monitoring warfarin entails. There was very minimal pain or incapacity after the procedure and the improvement was noticeable.
posted by uncaken at 11:14 AM on October 2, 2017 [1 favorite]
posted by uncaken at 11:14 AM on October 2, 2017 [1 favorite]
He's in denial. Death is abstract, making life changes to avoid is a big pain, smoking, drinking and eating bad food is fun, so being in denial is effective in the short term.
Going to another country and having surgery are very scary. Death, being abstract, not so much.
Money. Pain. Cultural barriers, maybe.
Someone can ask him Why don't you want to have this medical care to help you live? and not just tell him what to do. Maybe he'll say why. Who does he really respect a lot? That person can sit down with him and explain why his loved ones need and want him to live, how very sad and devastated they will be to lose him. And that he has the chance to have life-saving medical care that will help him live. They can describe what happens when a person has a heart attack - sometimes they die right away. Sometimes they are quite incapacitated. It hurts a lot. If he has the surgery he will be better able to walk and laugh and have sex and do other things that make life worth living. Also, visiting family and seeing their new country will be exciting. The family feels it is well worth any costs. And address the denial and fears. And that's about it. People make choices for all sorts of reasons.
When I went to take care of my Mom when she was starting radiation for esophageal cancer, all the way to meet with the doctor she kept saying she wasn't going to have the radiation. With the doctor, she was silent so I asked what would happen if she didn't have the radiation to get any cancer cells the surgery missed. He gave me a look and explained the possibility that there were still cancer cells present. Mom was so anxious that she was just ranting, but it seemed to help to hear the grim reality.
good luck.
posted by theora55 at 11:24 AM on October 2, 2017 [2 favorites]
Going to another country and having surgery are very scary. Death, being abstract, not so much.
Money. Pain. Cultural barriers, maybe.
Someone can ask him Why don't you want to have this medical care to help you live? and not just tell him what to do. Maybe he'll say why. Who does he really respect a lot? That person can sit down with him and explain why his loved ones need and want him to live, how very sad and devastated they will be to lose him. And that he has the chance to have life-saving medical care that will help him live. They can describe what happens when a person has a heart attack - sometimes they die right away. Sometimes they are quite incapacitated. It hurts a lot. If he has the surgery he will be better able to walk and laugh and have sex and do other things that make life worth living. Also, visiting family and seeing their new country will be exciting. The family feels it is well worth any costs. And address the denial and fears. And that's about it. People make choices for all sorts of reasons.
When I went to take care of my Mom when she was starting radiation for esophageal cancer, all the way to meet with the doctor she kept saying she wasn't going to have the radiation. With the doctor, she was silent so I asked what would happen if she didn't have the radiation to get any cancer cells the surgery missed. He gave me a look and explained the possibility that there were still cancer cells present. Mom was so anxious that she was just ranting, but it seemed to help to hear the grim reality.
good luck.
posted by theora55 at 11:24 AM on October 2, 2017 [2 favorites]
It may be that he cannot afford unpaid time off work for himself and/or whoever needs to care for him post surgery...
posted by Murderbot at 8:15 PM on October 2, 2017
posted by Murderbot at 8:15 PM on October 2, 2017
Rather than having him agree to an abstract idea, has anyone presented him with a detailed, mock itinerary for exactly what the plan might be?
posted by little_dog_laughing at 12:51 AM on October 3, 2017 [1 favorite]
posted by little_dog_laughing at 12:51 AM on October 3, 2017 [1 favorite]
This thread is closed to new comments.
posted by amtho at 9:14 AM on October 2, 2017 [2 favorites]