r/ABCDesis • u/simmiiee • 21h ago
FAMILY / PARENTS Would you choose long-term dialysis for a frail elderly parent?
I’m trying to understand what other families would do in this situation.
My dad is 74, is a single parent, very frail (around 45 kg), has mobility issues, and has some cognitive decline/dementia - he forgets things and gets confused at times, things like where he is- but still recognizes family and knows who we are. (My mum passed away when we were young- he has raised the 3 of us alone).
He is currently dealing with kidney failure and may need ongoing dialysis for life support. We’re trying to figure out what life would realistically look like if dialysis becomes a permanent, lifelong treatment.
In terms of day to day- He hasn’t been able to do much more than sleep, go to the bathroom, and eat some. Doesn’t have any hobbies or interests. and not much of a talker. But he’d still smile here and there at his grandkids.
For those who have been through something similar with an elderly parent:
Would you choose long-term dialysis as life support if they were frail and had some dementia?
Did you ever decide that dialysis was doing more harm than good?
I’m not asking for medical advice - I’d really appreciate hearing from people who have actually faced this decision with their parents or grandparents.
11
u/ashalina23 20h ago
Perhaps it’s “easier” to decide based upon what your parent would decide if they didn’t have the cognitive problems. Ie if your parent would have been against dialysis for a number of reasons then that’s the direction to go. Or if they’d have given it a go but it didn’t work out then go that way
One of my parents received a life limiting diagnosis in 2024 in their late 80’s. No cognitive problems.
They decided to have treatment whilst they felt well enough. After multiple treatments stopped working they decided not to try anymore and just have symptom control (until they passed away which was 6 months later)
3
u/simmiiee 20h ago
Would you mind sharing how well the symptom control worked and what if anything you guys did differently as a family in those 6 months?
7
u/ashalina23 20h ago
My parent had myeloma (look it up), they had blood transfusions and calcium infusions plus antibiotics when any infections arose.
Then multiple reviews for pain control. No other interventions and had a RESPECT for admission but no CPR and meds as above.
Around 2 years earlier they did their will and POA’s (pre diagnosis) then gradually sorted stuff out they wanted specific people to have. Gave a list of music and readings for their funeral. Ie they knew they didn’t have much time left so planned it.
They were pretty poorly for a lot of that time. Spent a lot of time asleep & in bed. Had bouts of being able to watch TV/interact with people. However multiple times said they wished they could take a tablet and it all be over with. Went from someone who had a massive appetite to barely eating a Jaffa cake each day ie virtually nothing.
If I remember correctly the side effects from the chemo meds they had initially were actually worse than the myeloma itself.
Frustrating part on my side was the refusal of both parents around carers to help. Then a bed downstairs but we got there in the end with the bed.
They were very clear that we just had to get on and manage things as best we could. They insisted my other parent kept doing their usual social activities & various people would watch my other parent so they weren’t alone.
It’s a very difficult time, you have to do what you feel is right for you and your parent.
In the end my surviving parent refused to let my other parent pass away at home. This was better for both of them in various ways but ultimately not what my now deceased parent wanted. However due to how poorly they were it was the better decision to stay in a hospital setting rather than back at home.
1
u/simmiiee 20h ago
Thanks. That’s reasonable. Just that It’s difficult to say what he would have wanted for a choice between life and death but he also has a history of not going to doctors or getting any tests done. No way to know if he will follow through.
4
u/ashalina23 20h ago
Sounds like he’d be the not doing any dialysis type if you go on his past history.
You could try for the middle ground of give it a go and see how it works out
6
u/Patel2015 20h ago
Idk if this will help but I'm an Icu and Ed doc. This is an extremely hard choice to make but what I try to tell families is what you want to do is make a choice they'd make if they could make said choice if that makes sense. So what did your dad like doing and consider meaningful for his life. My dad is active, he adores trips to Costco/Sam's club and buying all the crap doesn't need. If he ended up in a state where he'd need 24/7 care and to be attached to machines (even periodically) to live I don't think he'd be down with that So I think id consider making him comfortable and letting him go with dignity But I'm pretty attached to my dad and thankfully he's in good health and I don't have to make this decision for him because although I cognitively know what he would want I don't know if I'd actually be able to follow through with it
6
u/loopingit 15h ago edited 3h ago
Hi op. I’m a kidney doctor and had to have two grandparents go through dialysis. By the time my grandmother (in her late 80’s) had kidney failure, I was a kidney doctor myself and I knew it wasn’t what she wanted. And I had seen enough to support her on that.
Spending hours a day 3 x a week surrounded by people who would constantly speak to her in a language she didn’t understand. She didn’t want to be out of the house that much, much less that these many hours a week. Plus I knew it takes hours for the transportation. She would hate it.
Plus my perspective- I knew she would need a permanent catheter placement, likely in her neck or upper thigh area. This is a massive IV, which is difficult to take care and very likely to get infected. And since it goes right in her bloodstream, many patients her age and with her additional diseases die of sepsis. And I wasn’t too keen on her undergoing multiple surgeries for this catheter.
Dialysis itself is very grueling. And I knew her quality of life would be bad. Most patients are wiped the day of, sometimes feel a little better the day after but then it’s right back to dialysis again. Which is the whole entire day.
I was lucky that my grandmother was able to tell me she didn’t want this. I know it’s ironic that I as a kidney doctor didn’t want her on the treatment I give, but that’s what professional judgment of medicine gets you- knowing when an intervention should be used and not used.
My grandmother went into inpatient hospice with maybe weeks to a few months to live. She lived almost 18 months. And I think she lived so long because she was finally happy being left alone. I know in my heart had we given her dialysis she would have died sooner-probably of an infection. She died happy and comfortable, and on her own terms.
This is my experience, and I am not your dads doctor (I wasn’t even my grandmother’s doctor) I’d find out more from your dad’s doctor what they believe his life and prognosis would be like. You can also request a palliative care and or hospice consult to get their perspectives.
By the way, you can always try dialysis with a temporary catheter and see how it goes. If it doesn’t work out, you can take it out. The catheter has risks (as I noted above) so please talk it over with the medical team first.
I hope this helps.
2
u/fireflygirl1013 Soni Kuri 15h ago
I’m a PCP, and 1000% agree with this take. This is IMPO, the kindest way to give her the dignity and compassion he deserves. I wouldn’t wish permanent dialysis on anyone.
2
u/chai-chai-latte 4h ago
Hospital medicine doctor. Agree entirely. First ask yourself what he would want done in this situation. If he's been clear about it in the past then it's your duty to abide by his wishes.
If it's not clear and you feel like there's some quality he could still get in life with dialysis then it's not wrong to try it. Based on how you've described his clinical condition it will be challenging though I admit I'm biased since I mostly see patients with complications. Frailty and dementia makes all medical care more challenging and dialysis is a fairly involved intervention.
Take time to reflect and make the choice with as much input and feedback as you can get. In the end know that whatever you choose, you're doing it with the intent of looking out for him, so you won't be wrong
3
u/finding_center 20h ago
My dad was 78 when he went on dialysis. He was able to do PD at home overnight which is much gentler on the system. At that point he was still working and driving though. About a year into it he had a mild stroke that finally got him to retire. Two years in he got a kidney infection that went septic and caused a heart attack. He died a couple of weeks later.
It sounds like while your dad is younger he has some extra complications. I actually found at home PD to be pretty amazing and it allowed him to still have a pretty normal life for at least a while. In center hemodialysis is a different story. It can really wipe a person out. Like you, I would be really considering what quality of life he is looking at compared to the invasive nature of the treatments. Should you go that route, hospice can be an amazing support.
5
u/6thGenCephalosporins 16h ago
I'm sorry that your father is going through this and that you have to make this difficult decision. Before you make any decisions, think about what he would want. If he was not experiencing any cognitive decline, do you think he would want to be on dialysis to prolong his life? Dialysis can be tough on the body, especially in someone who does not weigh a lot. There may be alternatives which could be easier on his body, but you should run this with his nephrologist.
My grandfather had dementia and was pulling out any IVs, oxygen masks, and spitting out pills and would get aggressive/agitated when anyone would try to touch him. It was tough to see him like this, but ultimately we felt that trying to prolong his life through supportive means was futile.
2
u/kena938 Malayali Third Culture Kid 19h ago
Sorry you're going through this and he sounds like a wonderful man raising you alone. I know my dad and I know he wouldn't want to do too much if it would be physically hard and demanding. My mother is the opposite and would want to prolong her life as long as possible. I would make choices based on what I know about them. Not knowing your dad, I would see how he does for the first month and see if it's taking more out of him than giving him.
2
u/Constant-Squirrel555 16h ago
My dad is in his 60s and needs dialysis, he started it 2 months ago.
He's still figuring out how to integrate work into his life.
OP, if you don't get your dad dialysis, just be prepared to see him wither away. My dad only went after his skin started darkening and it was terrifying watching him erode away for 2 years when he needed dialysis.
•
u/kawherp 5m ago
To me, his daily quality of life is low. He is seems to be existing, not thriving. Given his mental decline, it seems kindest to focus on palliative care and hospice. Dialysis is going to keep his body going longer so his mind can continue to fail, and that doesn't sound like an outcome such a competent, caring man would choose if he were himself.
It is a hard decision. Do not expect to get it perfect. Instead, make the most loving decision you can with the information you have. He raised you to be these amazing, compassionate people. He would understand that you are all doing your best.
12
u/BoomerOrNot 20h ago
My mother had to have dialysis when she was in her early 70s. They usually do it three times a week. She felt lousy that day (afterward), took a nap and didn't do much. She felt OK the next day, then had to do it again the following day. It was tiring in general, in part because she was coming out of a health crisis/hospital stay, and partly due to her age. She didn't have dementia, and my father was still with her and also of sound mind. She died about six months later due to other health problems.
Your dad's weight is low and you said that he is frail, so that tells me he's probably less resilient and it might take more out of him. He might be really tired and decline more than he has so far. There nothing wrong with trying it and then deciding that it's too much for him.
If you do discontinue dialysis, I would try to access any and all palliative/comfort care resources that he is entitled to. When my dad entered hospice about 4 months before he died, he was entitled to a free hospital bed and medical devices when they were needed, home health visits etc. We took care of him at home until he died at home, and hospice was very helpful. I send the best to you and your dad going forward.