What to ask the doctors?
December 27, 2017 11:12 PM Subscribe
My ex-husband had a stroke a couple of days ago. My son is his next of kin. We are both somewhat at a loss to work out what questions we should be asking, especially as it is early days.
X had two clots on the brain. The first was removed in surgery that started in wee small hours after ambulance took him to hospital at 11pm, 26 December. Also part of his skull was removed to allow for swelling. They said they might put it back in a few months, depending. The second clot is apparently deeper and entangled. They called it an AVM. Today 28 Dec he was responsive post-surgery, the tubes (breathing?) have been removed and he spoke to our son on the phone. My son was a bit shocked but I don't think he has chatted with someone immediately post-majory surgery on strong pain relief.
X has been moved from ICU to the ward. He is 160kg. Son is considering undertaking the carer role (supported by oz gov welfare system) if and when X is discharged.
What are the obvious and not so obvious questions we should be asking the medical staff? Obviously, they can't tell the future: whether there is permanent / extensive brain damage and whether the second clot will kill and when. So what do we ask?
Other factor: both X and I have been diagnosed with Aspergers. Son may be on the spectrum but isn't interested in finding out just now. However, sometimes he asks me what is socially expected of him in these circumstances as he sensed that his pragmatic behaviour confused the staff (was invited to spend time with unconscious father prior to surgery and said "looks like you have it sorted"to the staff instead of holding X's hand or patting him or saying good luck - because, after all, X was asleep - I would have done the same thing). So if there are super-obvious questions or etiquette for patient's family in these circumstances, do share.
We live in Queensland, Australia, so no cost for ambulance or treatment.
X had two clots on the brain. The first was removed in surgery that started in wee small hours after ambulance took him to hospital at 11pm, 26 December. Also part of his skull was removed to allow for swelling. They said they might put it back in a few months, depending. The second clot is apparently deeper and entangled. They called it an AVM. Today 28 Dec he was responsive post-surgery, the tubes (breathing?) have been removed and he spoke to our son on the phone. My son was a bit shocked but I don't think he has chatted with someone immediately post-majory surgery on strong pain relief.
X has been moved from ICU to the ward. He is 160kg. Son is considering undertaking the carer role (supported by oz gov welfare system) if and when X is discharged.
What are the obvious and not so obvious questions we should be asking the medical staff? Obviously, they can't tell the future: whether there is permanent / extensive brain damage and whether the second clot will kill and when. So what do we ask?
Other factor: both X and I have been diagnosed with Aspergers. Son may be on the spectrum but isn't interested in finding out just now. However, sometimes he asks me what is socially expected of him in these circumstances as he sensed that his pragmatic behaviour confused the staff (was invited to spend time with unconscious father prior to surgery and said "looks like you have it sorted"to the staff instead of holding X's hand or patting him or saying good luck - because, after all, X was asleep - I would have done the same thing). So if there are super-obvious questions or etiquette for patient's family in these circumstances, do share.
We live in Queensland, Australia, so no cost for ambulance or treatment.
Just an aside, (Australian here) the OP may be referring to themselves as next of kin because in our system, it likely gives him power of attorney when it comes to Do Not Resucitate and other legalities that might arise in a life or death situation. So he gets to call the shots regarding what happens to his father.
posted by Jubey at 11:46 PM on December 27, 2017 [7 favorites]
posted by Jubey at 11:46 PM on December 27, 2017 [7 favorites]
Perhaps think of dividing your questions into his current state of health, and post-discharge questions. His current state of health - they should be able to tell you about tissue damage they can see on scans and how that may affect recovery, they should be able to give you a bit of an idea of prospects (for example, after my father-in-law's stroke, doctors were quite blunt after a week about his prospects of much more recovery).
Post-discharge questions - can he get discharged to rehab first, what caring work will the carers role involve (eg can he be left alone unsupervised), and what are the future risks (eg with my FiL there was a decision about whether he should keep taking Warfarin).
posted by fever-trees at 12:39 AM on December 28, 2017 [3 favorites]
Post-discharge questions - can he get discharged to rehab first, what caring work will the carers role involve (eg can he be left alone unsupervised), and what are the future risks (eg with my FiL there was a decision about whether he should keep taking Warfarin).
posted by fever-trees at 12:39 AM on December 28, 2017 [3 favorites]
As far as the "I see you have it covered" issue is concerned, I wouldn't worry about it. I'm sure that the hospital staff has seen it far, far worse than that.
posted by Melismata at 6:47 AM on December 28, 2017
posted by Melismata at 6:47 AM on December 28, 2017
At 160 kg it might be safer to transfer to rehab. If X now has mobility issues, it will be hard or impossible for a single carer to assist with tasks such as transfer from bed to chair, chair to toilet, etc. Also, if X is now a fall risk, consider rehab as it is a multiple person job to get him off the floor.
There are a couple other things to consider when taking on a caring role in the home. PT and OT appointments might be regularly required. How would X get there, does he require your son to drive? Does that work with your sons work schedule? Same with doctors appointments.
If X is independent enough at discharge to be about safely and an outpatient rehab process is compatible with employment, then you can think about discharge home.
posted by crazycanuck at 7:55 AM on December 28, 2017 [2 favorites]
There are a couple other things to consider when taking on a caring role in the home. PT and OT appointments might be regularly required. How would X get there, does he require your son to drive? Does that work with your sons work schedule? Same with doctors appointments.
If X is independent enough at discharge to be about safely and an outpatient rehab process is compatible with employment, then you can think about discharge home.
posted by crazycanuck at 7:55 AM on December 28, 2017 [2 favorites]
Your responsibility is to your son, not to your ex. Does your son have goals in life (a job, education, relationships) that would be at odds with taking on the carer role? Being a full-time caregiver would most likely mean derailing most of his current plans and may end up being decades of poorly paid 24/7 labour. Strokes can bring out the worst in people - if your ex was someone who had "deposited" a lot into the relationship with his son then the son may be able to take on this burden well, as opposed to a selfish father who once again was not prioritizing his son - you don't want to encourage a dysfunctional relationship to become even more unhealthy for your son.
I also believe that caregiving is best performed by professionals without emotional entanglement. Probably the best guidance is to help your son be an advocate for his father to continue under professional care and explore options that will meet his father's needs without committing your son to be the caregiver. There is a fork in the road where those who take on personal caregiving for relatives often find it difficult to step back and get professional help. It is much easier to inisit on the professional caregiving and use personal caregiving as a supplement.
Good luck, I'm sorry you are having to deal with this, I am sure it is very difficult for your family.
posted by saucysault at 8:52 AM on December 28, 2017 [1 favorite]
I also believe that caregiving is best performed by professionals without emotional entanglement. Probably the best guidance is to help your son be an advocate for his father to continue under professional care and explore options that will meet his father's needs without committing your son to be the caregiver. There is a fork in the road where those who take on personal caregiving for relatives often find it difficult to step back and get professional help. It is much easier to inisit on the professional caregiving and use personal caregiving as a supplement.
Good luck, I'm sorry you are having to deal with this, I am sure it is very difficult for your family.
posted by saucysault at 8:52 AM on December 28, 2017 [1 favorite]
Good idea to seek some advice here, and I'm sorry you're going through this difficult and complex situation. A couple thoughts:
1) No need to worry about how hospital staff are reading you. It's none of their business, and as a nurse I can assure you, they see many different reactions and just the fact that family is there visiting is positive.
2) I would advocate for as many/much services as you can post discharge. For example, if they are on the fence about if X needs inpatient rehab, I would push to get it. You can't get it later, and he will need the help and probably benefit from PT/OT/speech therapy. You can't know how much he will benefit unless he gets the chance to receive those services.
3) Big picture after a little time has passed, this is a good opportunity for everyone to start talking about their wishes around medical interventions. In the US, we have a form called the POLST, that allows people to pick which medical interventions they do and don't want if they are in extreme medical circumstances or if they are old. Perhaps there is something analogous there. But at minimum, starting to have those conversations is really important.
4) Note: the biggest risk factor for stroke is having had a previous stroke. This is part of why I emphasize exploring what kinds of interventions X (and all of you) want in the future. But also addressing any lifestyle factors that could have contributed to the stroke (smoking is the biggest but could be others for X) would be really important.
posted by latkes at 8:56 AM on December 28, 2017 [3 favorites]
1) No need to worry about how hospital staff are reading you. It's none of their business, and as a nurse I can assure you, they see many different reactions and just the fact that family is there visiting is positive.
2) I would advocate for as many/much services as you can post discharge. For example, if they are on the fence about if X needs inpatient rehab, I would push to get it. You can't get it later, and he will need the help and probably benefit from PT/OT/speech therapy. You can't know how much he will benefit unless he gets the chance to receive those services.
3) Big picture after a little time has passed, this is a good opportunity for everyone to start talking about their wishes around medical interventions. In the US, we have a form called the POLST, that allows people to pick which medical interventions they do and don't want if they are in extreme medical circumstances or if they are old. Perhaps there is something analogous there. But at minimum, starting to have those conversations is really important.
4) Note: the biggest risk factor for stroke is having had a previous stroke. This is part of why I emphasize exploring what kinds of interventions X (and all of you) want in the future. But also addressing any lifestyle factors that could have contributed to the stroke (smoking is the biggest but could be others for X) would be really important.
posted by latkes at 8:56 AM on December 28, 2017 [3 favorites]
I am a nurse working on a ward where stroke and brain surgery patients are cared for after ICU discharge and before rehab. latkes' advice is excellent; here are a couple more ideas:
- Do they have recommendations for how your son can participate in care during his hospitalization?
If your son is considering getting involved in care at home, it may be a good idea to start now while he has some opportunities to see what this might be like. He might be able to participate by doing things like helping with meals when X is ready to eat, maybe some hygiene care. He might be able to go through physical or speech therapy exercises with X, depending on what's needed and what the team on the ward prescribes. This question might also help your son get a handle on the staff's expectations of him.
- Is there a social worker, either on the ward or at the hospital, who can sit down with your son and talk about the kinds of resources and supports he might be able to access if he becomes a full time carer?
A social worker who has experience with this patient population will have lots of expert knowledge--they are a great resource! It may also be possible to organize a family meeting with the whole care team once you are getting ready for discharge planning, but the social worker should be there from step one to help guide your son and X through the system and ensure they are getting the support they need.
posted by snorkmaiden at 7:30 PM on December 28, 2017 [1 favorite]
- Do they have recommendations for how your son can participate in care during his hospitalization?
If your son is considering getting involved in care at home, it may be a good idea to start now while he has some opportunities to see what this might be like. He might be able to participate by doing things like helping with meals when X is ready to eat, maybe some hygiene care. He might be able to go through physical or speech therapy exercises with X, depending on what's needed and what the team on the ward prescribes. This question might also help your son get a handle on the staff's expectations of him.
- Is there a social worker, either on the ward or at the hospital, who can sit down with your son and talk about the kinds of resources and supports he might be able to access if he becomes a full time carer?
A social worker who has experience with this patient population will have lots of expert knowledge--they are a great resource! It may also be possible to organize a family meeting with the whole care team once you are getting ready for discharge planning, but the social worker should be there from step one to help guide your son and X through the system and ensure they are getting the support they need.
posted by snorkmaiden at 7:30 PM on December 28, 2017 [1 favorite]
Sorry this has happened to your family especially at Christmas. Look after yourselves too and remember that you can talk to your GP to ask for support for yourselves or explanations about the medical side of things and navigating the hospital system.
If you want updates from the most senior doctors, the best way is to make sure you're at the bedside when they do rounds, usually in the mornings. Asking to see "the doctor" at random times of day means a junior duty doctor who might not know the patient is paged to come instead. The senior doctors will be off in theatre or clinics by then, not on the ward.
Some sort of document to explain your ex husband's wishes for CPR etc should be filled out by the next of kin (perfectly fine terminology). Where you are, it's called an Advanced Resuscitation Plan (ARP).
The best way to support good care for your ex husband is to trust the professionals looking after him. Ask lots of questions and find out your options but don't demand, push or get aggressive. If he's suitable for rehab, the ward team will be even keener to get him there than you are, don't worry!
posted by Stephanie_Says at 1:58 PM on December 29, 2017
If you want updates from the most senior doctors, the best way is to make sure you're at the bedside when they do rounds, usually in the mornings. Asking to see "the doctor" at random times of day means a junior duty doctor who might not know the patient is paged to come instead. The senior doctors will be off in theatre or clinics by then, not on the ward.
Some sort of document to explain your ex husband's wishes for CPR etc should be filled out by the next of kin (perfectly fine terminology). Where you are, it's called an Advanced Resuscitation Plan (ARP).
The best way to support good care for your ex husband is to trust the professionals looking after him. Ask lots of questions and find out your options but don't demand, push or get aggressive. If he's suitable for rehab, the ward team will be even keener to get him there than you are, don't worry!
posted by Stephanie_Says at 1:58 PM on December 29, 2017
Response by poster: So a year later, 2 more brain surgeries and replacing a bit of his skull that they kept, he's recovering far better than doctors expected, with no discernable brain damage.
posted by b33j at 6:32 PM on December 10, 2018 [4 favorites]
posted by b33j at 6:32 PM on December 10, 2018 [4 favorites]
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It's possible this could come across as seeming cold -- using words like son or father might be perceived better by the staff.
I'm sorry not to have any other information on what to do.
posted by yohko at 11:25 PM on December 27, 2017