dementia, general anaesthetic, cancer - please help me think this through

[chocolate-chip chooky]

My mother (82) has dementia. She still lives at home with my father, but they have considerable help in the home from aged care services.

She recently started having nosebleeds, and the ENT found a lump and strongly suspects cancer - either squamous cell carcinoma or mucosal melanoma. 

The only way to know for sure is with a biopsy, which would be under general anaesthetic. 

My sister and I are thinking through what the best plan of action here is.

We have been warned that general anaesthetic can cause up to a month of delirium and it can speed up the overall progression of dementia.

Do any of you have experience with dementia and GAs?

[chocolate-chip chooky]

I'll also add that if we do identify the cancer, some treatment options are not possible for our mother. 

So it's quite a challenge to work out the risk vs benefit of the biopsy.

[Ottakee]

I would talk to the doctor about the risks/benefit for her having the biopsy and treatment options if needed.

[chocolate-chip chooky]

16 minutes ago, Ottakee said:

I would talk to the doctor about the risks/benefit for her having the biopsy and treatment options if needed.

Oh yes, we are in discussions with both the GP and the ENT.

I'm just hoping for some personal experiences to add the human touch to the mix.

[bolt.]

I think your first steps should be to generate a flow chart with branching paths of all the possibilities and paths:

Biopsy with general anesthetic vs no biopsy // biopsy having a positive vs negative result //  having cancer without having a biopsy vs not having cancer and not having a biopsy (but still having dementia) // various treatment paths and options after a positive result, including no treatment // various treatment (or no-treatment) locations (home or not home, permanently or temporarily).

Once you've got it all laid out visually, look at each end point. Ask yourself in detail, with research if needed: (a) What is it like to live with this exact outcome? ( b ) How hard is the path between the present moment and this outcome? (c) What is the potential impact of these choices on how long she might live? (d) What is this path and outcome like for a caregiver?

One thing to consider is the sense of balance/tension between living as long as possible, vs the discomfort of living with increasing dementia symptoms, vs the discomfort of enduring cancer treatment  (if needed). It's not always about how many years are left, but also about how 'good' those years are.

And, with absolute certainty -- once you understand the situation yourself -- you need to explain it to her, and really listen to her heart when she tells you how she feels about things. You don't have to let her make this decision if she's not capable (you probably shouldn't be doing that) but it's important to involve her, and to try to take her wishes as seriously-as-is-reasonable given her condition.

Of course, you and your sister should give your dad the best advice you possibly can -- but unless he's incapable, he's the actual person in the position to make this decision. It's not a 3-way vote: legally it's his call.

[prairiewindmomma]

40 minutes ago, chocolate-chip chooky said:

My mother (82) has dementia. She still lives at home with my father, but they have considerable help in the home from aged care services.

She recently started having nosebleeds, and the ENT found a lump and strongly suspects cancer - either squamous cell carcinoma or mucosal melanoma. 

The only way to know for sure is with a biopsy, which would be under general anaesthetic. 

My sister and I are thinking through what the best plan of action here is.

We have been warned that general anaesthetic can cause up to a month of delirium and it can speed up the overall progression of dementia.

Do any of you have experience with dementia and GAs?

Yes…..lots of agitation and aggression and hallucinations for a couple of weeks. Three day hospital stay with a heavy cocktail of meds to keep everyone safe and a few weeks beyond before kind of a restabilization. Effects werent permanent, and I think dementia would’ve progressed roughly along the same timeline, fwiw.
 

Spouse was still making decisions at that point but was really surprised by how bad it got. I think denial played a part in his decision process—he hadnt fully accepted the progressive nature of dementia. 
 

Relative had another round of GA after a broken pelvis. Patient had been fully mobile prior to fall/pelvis fracture so had surgery under GA. Repeat of the above experience. After that the spouse made the decision to do only comfort care. Relative survived a couple more years but did not leave the facility….even for a ride to get icecream as any change in routine became intolerable for them.

[chocolate-chip chooky]

25 minutes ago, bolt. said:

I think your first steps should be to generate a flow chart with branching paths of all the possibilities and paths:

Biopsy with general anesthetic vs no biopsy // biopsy having a positive vs negative result //  having cancer without having a biopsy vs not having cancer and not having a biopsy (but still having dementia) // various treatment paths and options after a positive result, including no treatment // various treatment (or no-treatment) locations (home or not home, permanently or temporarily).

Once you've got it all laid out visually, look at each end point. Ask yourself in detail, with research if needed: (a) What is it like to live with this exact outcome? ( b ) How hard is the path between the present moment and this outcome? (c) What is the potential impact of these choices on how long she might live? (d) What is this path and outcome like for a caregiver?

One thing to consider is the sense of balance/tension between living as long as possible, vs the discomfort of living with increasing dementia symptoms, vs the discomfort of enduring cancer treatment  (if needed). It's not always about how many years are left, but also about how 'good' those years are.

And, with absolute certainty -- once you understand the situation yourself -- you need to explain it to her, and really listen to her heart when she tells you how she feels about things. You don't have to let her make this decision if she's not capable (you probably shouldn't be doing that) but it's important to involve her, and to try to take her wishes as seriously-as-is-reasonable given her condition.

Of course, you and your sister should give your dad the best advice you possibly can -- but unless he's incapable, he's the actual person in the position to make this decision. It's not a 3-way vote: legally it's his call.

This is very helpful, thank you.

My sister and I have EPOA. We already make our parents' medical and financial decisions. It is going to be difficult to work out to what extent our father is capable of joining the decision-making. 

[chocolate-chip chooky]

16 minutes ago, prairiewindmomma said:

Yes…..lots of agitation and aggression and hallucinations for a couple of weeks. Three day hospital stay with a heavy cocktail of meds to keep everyone safe and a few weeks beyond before kind of a restabilization. Effects werent permanent, and I think dementia would’ve progressed roughly along the same timeline, fwiw.
 

Spouse was still making decisions at that point but was really surprised by how bad it got. I think denial played a part in his decision process—he hadnt fully accepted the progressive nature of dementia. 
 

Relative had another round of GA after a broken pelvis. Patient had been fully mobile prior to fall/pelvis fracture so had surgery under GA. Repeat of the above experience. After that the spouse made the decision to do only comfort care. Relative survived a couple more years but did not leave the facility….even for a ride to get icecream as any change in routine became intolerable for them.

Thank you for sharing this. I'm sorry you all went through this, but I really appreciate you sharing it.

[PeterPan]

I just did a multi hour training on dementia advocacy and the doctor (top level university researcher) doing the workshop didn't mention this issue at all. Googling, it seems like the data is pretty mixed.

I agree with the others that the conversation is with the doctor to ask what treatments the biopsy actually opens up and what treatments could be pursued without a general anesthesia procedure.

I just went through hospice for a person I advocated for, so I know it's hard to be at that point. I think if this is a person you would DNR (ie. you would not choose ICU, you would not recussitate if the heart or lungs stopped), then it's fair to ask how far you want this to go. Sometimes they have middle of the road options, things that keep people comfortable. 

It's hard stuff.

[PeterPan]

32 minutes ago, chocolate-chip chooky said:

I'm just hoping for some personal experiences to add the human touch to the mix.

Keep it simple. If your mom had the clarity to speak for herself, would she want an invasive procedure at this time? What would she say?

I find that my prediction of what someone would want for DNR or a procedure generally matches what they themselves turn out to want when I'm able to explain it to them with terms they're able to understand. Which is to say I think you should feel CONFIDENT that if you make a compassionate prediction based on what you know of her you're probably right. And if you think you can explain it to her to some degree, you could field it and see what she says. 

I'm trying to think how you'd explain that. It would depend on what the treatment options are and the likelihood. I would be very frank.

-They have a treatment that involves x (surgery, whatever) and to decide whether to do it involves y (hospital stay where you may feel disoriented for at least a week, etc.). It has z likelihood of working and will improve your life, may not improve your life, etc.

If she's able to express her wishes, she may say that being in a hospital and feeling disoriented is not what she wants, surgery is not what she wants, and you may feel absolved. It's very hard to say no, we're not doing something. Sometimes people REALLY WANT EVERYTHING NO MATTER WHAT and sometimes people are like nope, I'm done. And there are middle of the road options too. I would be looking for a middle of the road option from the doctor. You can ask them WHAT THEY'D DO if it was their mother. Seriously. Definitely ask that.

If your mother has peace with life and death, sometimes comfort is a good thing and making that middle of the road choice that works toward comfort is a good path.

[prairiewindmomma]

Some additional things I will toss in, just out of my BTDT of life experiences…..

Head radiation involves making a custom plastic mesh mask which is snapped into a treatment table. It is claustrophobic to wear and as treatment happens you smell burned plastic. By about treatment 20 or so we could also smell something akin to singed flesh. Patient had a blistering rash for the last 10 treatments.

Not all chemo has terrible side effects, but bowel continence is harder to manage than fatigue and nausea. 

[Drama Llama]

I am so sorry you are facing this. I think you should ask what treatment would be like if they found cancer.  Is it something you would put her through?  Chemo can be brutal.  

[PeterPan]

4 minutes ago, Drama Llama said:

you should ask what treatment would be like if they found cancer. 

They can have middle of the road options too that are aimed at comfort.  

[City Mouse]

Anesthesia was the start of some very bad times for my dad’s last 9 months or so. If he had know what effect the anesthesia would have on him and his dementia, he would have absolutely refused the medical treatment (stent placement then a pacemaker). That would have caused him to die much quicker, but it is what he would have wanted. 

Edited July 1 by City Mouse

[Drama Llama]

7 minutes ago, PeterPan said:

They can have middle of the road options too that are aimed at comfort.  

Right, that's why I'm suggesting she ask.  It's possible that they'll say "if it's cancer then knowing will allow us to make her more comfortable".  To me, that might make it worth it.  I just think more information is needed.  

[chocolate-chip chooky]

13 minutes ago, prairiewindmomma said:

Some additional things I will toss in, just out of my BTDT of life experiences…..

Head radiation involves making a custom plastic mesh mask which is snapped into a treatment table. It is claustrophobic to wear and as treatment happens you smell burned plastic. By about treatment 20 or so we could also smell something akin to singed flesh. Patient had a blistering rash for the last 10 treatments.

Not all chemo has terrible side effects, but bowel continence is harder to manage than fatigue and nausea. 

Thank you for this.

The ENT said that for mucosal melanoma, radiation is the best treatment, but it would not be an option for our mother.

The only treatment option would be immunotherapy via monthly infusions. This also would be very difficult/traumatic for our mother (and everyone involved).

Realistically, if it is mucosal melanoma, I think we'd be looking at palliative care.

[chocolate-chip chooky]

Our mother has an AHD, so this is helping the decision-making somewhat.

It's whether to undergo the biopsy (under GA) that's the biggest and most urgent decision.

 

[Katy]

Many doctors when dealing with their own family would recommend minimal, local anesthesia, imaging, and possibly hospice. Quality of life arguably matters more at the end than treatment. Many doctors don’t want to hurt or anger families, so you may have to ask. IME everyone in the medical field prefers hospice and comfort to trying to prolong life in similar situations. 

[PeterPan]

1 minute ago, chocolate-chip chooky said:

The only treatment option would be immunotherapy via monthly infusions. This also would be very difficult/traumatic for our mother (and everyone involved).

I've known someone who did the infusions and after some bumps it worked out well for them. However they did not have dementia. The infusions maintained their quality of life and gave them maybe 6 more good months. 

So your sense is your mother would find the treatments disorienting, confusing, etc.? Go with your gut and don't 2nd guess it. If the treatments would not be curative, then the question is whether they're worth the problems they cause. 

3 minutes ago, chocolate-chip chooky said:

I think we'd be looking at palliative care.

The doctor can write the scrip. In our area palliative is only once a month visits, where hospice is every week. Of the two, for this situation, I would ask for hospice. I know it's hard.

[chocolate-chip chooky]

4 minutes ago, Drama Llama said:

Right, that's why I'm suggesting she ask.  It's possible that they'll say "if it's cancer then knowing will allow us to make her more comfortable".  To me, that might make it worth it.  I just think more information is needed.  

I think it's not a matter of if it's cancer. I think it's a matter of what type it is.

 

 

[Drama Llama]

Just now, chocolate-chip chooky said:

I think it's not a matter of if it's cancer. I think it's a matter of what type it is.

 

 

I'm sorry.

[PeterPan]

2 minutes ago, Katy said:

Many doctors when dealing with their own family would recommend minimal, local anesthesia, imaging, and possibly hospice. Quality of life arguably matters more at the end than treatment. Many doctors don’t want to hurt or anger families, so you may have to ask. IME everyone in the medical field prefers hospice and comfort to trying to prolong life in similar situations. 

Bingo. It's a really hard phone call to make and people tend to wait longer than they had to. 

[PeterPan]

If it makes you feel any better, the data is people on hospice LIVE LONGER than people who do not use hospice. Now that's over a population and not going to fit one specific story/situation. But yes, in general, hospice *improves* quality of life and can bring with it resources, comfort, coordinated case management, and other things that actually statistically extend predicted outcomes.

But I get that it's a hard phone call to make. 

[chocolate-chip chooky]

Just now, PeterPan said:

I've known someone who did the infusions and after some bumps it worked out well for them. However they did not have dementia. The infusions maintained their quality of life and gave them maybe 6 more good months. 

So your sense is your mother would find the treatments disorienting, confusing, etc.? Go with your gut and don't 2nd guess it. If the treatments would not be curative, then the question is whether they're worth the problems they cause. 

The doctor can write the scrip. In our area palliative is only once a month visits, where hospice is every week. Of the two, for this situation, I would ask for hospice. I know it's hard.

 

The issue with the infusion treatments is that it is VERY hard to get our mother into a car, through anywhere public and busy, getting her to sit still in a chair etc. She had one iron infusion recently (following a big nosebleed), and it was very difficult for everyone involved.

She had a 5 min CT this week, and it took three staff members to manage her.

Infusions would be like this every month, indefinitely. And if she won't hold still, they just don't do it. So we can't even know that the treatments would consistently happen.

I think that my sister and I are at peace with the idea of palliative care if it is mucosal melanoma.

Palliative care would be in-home. So no hospital visits.

[chocolate-chip chooky]

So, really, our big decision is whether to actually get the biopsy done.

Is it worth it to find out what this is? That's the big question.

The doctors we are talking with are very open, and ask us questions like 'what would your pre-dementia mother have thought about this?' They are both being very open to all paths.

So, this is good. But we aren't really getting clear guidance on the risk/benefit balance of the biopsy.

[prairiewindmomma]

Questions I would ask:

Do they have home infusion services and would she tolerate an iv backpack?

Would the immunotherapy be corrosive and require a port or could it be done just through the veins? 
 

Is there a shot or pill alternative? (Dd’s initial treatment was through peg-intron shots rather than iv.) 

I think you are asking the right questions….Begin with the end in mine. What is your goal for her here and how likely are you to achieve it?

[Kareni]

I have no advice, @chocolate-chip chooky, but am sorry that you are faced with this decision.  Sending good wishes to you all.

Regards,

Kareni

[PeterPan]

12 minutes ago, chocolate-chip chooky said:

The issue with the infusion treatments is that it is VERY hard to get our mother

Then you have your answer.

8 minutes ago, chocolate-chip chooky said:

Is it worth it to find out what this is?

So to be clear, you would know what it is but have *no* viable treatment options?

 

[Danae]

10 minutes ago, chocolate-chip chooky said:

 

I think that my sister and I are at peace with the idea of palliative care if it is mucosal melanoma.

So what would the treatment be if it was squamous cell? And if that’s something you think she could tolerate, would her doctor consider trying that treatment without the biopsy, knowing that you would not treat mucosal melanoma?

[PeterPan]

9 minutes ago, chocolate-chip chooky said:

'what would your pre-dementia mother have thought about this?'

That's not the question. The question is if your mother were looking at her sister or loved one and THEY had dementia and this diagnosis, what would she want for them? If she understood her current reality, what would she want for herself?

14 minutes ago, chocolate-chip chooky said:

And if she won't hold still, they just don't do it.

Be at peace. Do not make this hard even though it is. She is not comfortable to receive the treatments and has no other treatments. Knowing the diagnosis does not open up any viable paths for treatment. 

I don't think you're wrong to focus on basic things like her comfort with things attached. Your assessment of her and what makes her feel comfortable and uncomfortable seems so spot on and makes sense.

I think that COMFORT is one of the remaining dignities we give people. Pain relief, keeping them clean, advocating for their comfort, these are extreme kindnesses. 

[chocolate-chip chooky]

1 minute ago, PeterPan said:

Then you have your answer.

So to be clear, you would know what it is but have *no* viable treatment options?

 

If it turns out to be mucosal melanoma, I think we are pretty clear that it would be straight to palliative care.

But if it turns out to be squamous cell carcinoma, they may be able to remove it via surgery. There would then be no ongoing treatment, as far as I can understand at this point, but it would grow back slowly. 

The questions are whether the surgeries under GA are worth it for an 82yr old already in declining health and with dementia.

[PeterPan]

Just now, chocolate-chip chooky said:

But if it turns out to be squamous cell carcinoma, they may be able to remove it via surgery. There would then be no ongoing treatment, as far as I can understand at this point, but it would grow back slowly. 

Ok, let's chew on that. I'm just thinking out loud with you because it makes sense that it's something to talk through and think through. 

Hospice has chaplains and nurses and it could be a good thing to talk through with them too. I'm a big fan of just calling them up and talking through things. Now maybe it's not that way where you are, but where we are I can call  hospice and get a triage nurse 24/7, a live human who understands things and will listen. Huge fan of talking it through and it might be an option for you, a non-committal thing, just to talk with someone. Sometimes it helps.

It would grow back *slowly*. How soon would it become symptomatic again? 

If slowly also means without symptoms and it gives her a reasonable period of time (closer to 6 months), yeah I'd do the biopsy. If the time without symptoms in reality is likely to be short (under 3 months) and that time might equal the recovery time from the surgery, then I wouldn't probably do it. 

I'm not a doctor, but I'm just thinking out loud with you. The benefit (time added with the chance of treatment) is greater than the cost (time of recover). What are the *odds* of it being squamous vs. the other kind? Are the odds at least 50/50 or is it much less likely?

[PeterPan]

5 minutes ago, chocolate-chip chooky said:

The questions are whether the surgeries under GA are worth it for an 82yr old already in declining health and with dementia.

I think you could in good conscience decide not to do the biopsy, absolutely. No doubt, no questions. 

What would I do if it were *my* person? I would ask how much *good* time they would have if it turns out to be squamous and what the reasonable odds are of it being squamous. You also have a deep knowledge of your mother and how she probably would assess her own situation and what she would want for herself.

I think, just me, I'd be ¾ toward not doing the biopsy and would need *compelling* evidence to do the biopsy. But it's not a wrong answer either way.

[chocolate-chip chooky]

1 minute ago, PeterPan said:

Ok, let's chew on that. I'm just thinking out loud with you because it makes sense that it's something to talk through and think through. 

Hospice has chaplains and nurses and it could be a good thing to talk through with them too. I'm a big fan of just calling them up and talking through things. Now maybe it's not that way where you are, but where we are I can call  hospice and get a triage nurse 24/7, a live human who understands things and will listen. Huge fan of talking it through and it might be an option for you, a non-committal thing, just to talk with someone. Sometimes it helps.

It would grow back *slowly*. How soon would it become symptomatic again? 

If slowly also means without symptoms and it gives her a reasonable period of time (closer to 6 months), yeah I'd do the biopsy. If the time without symptoms in reality is likely to be short (under 3 months) and that time might equal the recovery time from the surgery, then I wouldn't probably do it. 

I'm not a doctor, but I'm just thinking out loud with you. The benefit (time added with the chance of treatment) is greater than the cost (time of recover). What are the *odds* of it being squamous vs. the other kind? Are the odds at least 50/50 or is it much less likely?

I really appreciate you talking it through with me.

I have a phone appt with the ENT tomorrow, so I'll have a list of questions ready to ask. 

[Katy]

I would ask if based on already existing imaging she qualifies for hospice, or if they need a biopsy for that. I would also ask if she can be given anxiety meds and local anesthesia. 

[chocolate-chip chooky]

17 minutes ago, prairiewindmomma said:

Questions I would ask:

Do they have home infusion services and would she tolerate an iv backpack?

Would the immunotherapy be corrosive and require a port or could it be done just through the veins? 
 

Is there a shot or pill alternative? (Dd’s initial treatment was through peg-intron shots rather than iv.) 

I think you are asking the right questions….Begin with the end in mine. What is your goal for her here and how likely are you to achieve it?

She doesn't tolerate the IV line in her arm, and there's no way she'd keep a backpack on.

No one has mentioned home services or shot or pill alternatives. 

Thank you for talking it all through with me.

[chocolate-chip chooky]

3 minutes ago, Katy said:

I would ask if based on already existing imaging she qualifies for hospice, or if they need a biopsy for that. I would also ask if she can be given anxiety meds and local anesthesia. 

The ENT has already ruled out a local anaesthetic.

I'm not sure what 'hospice' would look like. That word hasn't been used yet. 

Thank you for talking it all through with me.

Edited June 30 by chocolate-chip chooky

[PeterPan]

Are you a religious person? I read a book last year by Joni Erickson Tada on euthanasia and life/death matters. I just had time on my hands and downloaded a slew of her little books to read, one each day. And I think it kind of applies because we have that struggle with how we handle dementia compassionately and what it means to *value life*. If we DON'T do things, does that mean we don't value her life? Does that mean she doesn't have value because she has dementia? 

JET talks about (and the specific term slips my mind right now) the idea of *extraordinary* measures. And she talks about each person with disabilities who faces that wall needing to say for themselves what to them is extraordinary. And I think about people in other times and what would have happened to my people had the same situation occurred in another time? 

I think in general, if someone has made peace with life/death, then taking *extraordinary* measures isn't always what that person wants. 

I don't know where that's going, because I don't think it's extraordinary or out of range to want to know if your mom could still have good days. I just think, for me as a religious person, I keep it very simple--when I'm dying, let me die. That's it. 

2 minutes ago, chocolate-chip chooky said:

I'm not sure what 'hospice' would look like. That word hasn't been used yet. 

You can call your local hospice and talk it through with them. Are you in the US? Where I live, hospice is paid for by medicare/medicaid and you can choose your provider. They will talk to you at ANY TIME on the phone. You could call them right now!!! I HIGHLY encourage you to call and talk with them. 

When you make the call, hospice in our area typically comes within 2-4 hours to do an intake and the nurse does intake, learning the whole situation, taking vitals, gathering all info. They then talk with their doctor to determine whether the patient qualifies for hospice and arrange all the paperwork. 

Hospice in our area gets you a weekly nurse visit (case manager), monthly chaplain and social worker visits (not forced), and access to medications, supplies, case management, etc. All of this can be accessed 24/7, which might give you peace of mind with your mother's complexity. 

AHD is currently considered as qualifying for palliative, so you're going to do one or the other no matter what. If they do comfort care with the cancer treatment, I *think* you can do that *and* be on hospice. It's a common misconception that hospice means terminating care. Talk with the doctor, but I think you can do comfort care for the cancer, including those IVs if they find a way, AND receive hospice.

 

[barnwife]

Other people are giving you really good things to think about. So I'll just say that cancer sucks and I'm sorry you are walking this path with a loved one.

 

 

[wathe]

A biopsy will help with prognostication.  It will be an aid to planning.  Once you know what you are dealing with, then you will be able to make good decisions about future care: whether or not any potential disease modifying treatments would be consistent with your mothers wishes, values and goals.

But, if you already know that the decision will be palliative care (ie symptom management, quality of life, and relief of suffering) no matter what the biopsy shows, and that your mother would decline active treatment, then there probably isn't much to be gained with the biopsy.

"Hospice" is a word that means different things in different places.   Here, it is a physical place where patients are admitted to receive end-of-life care ---  like a very special hospital, with a home-like atmosphere.  In the USA, it seems rather to denote a level of in-home visiting nursing care in one's own home.

[bookbard]

I'm sorry you're dealing with this.

One point to think about. When my MIL got her diagnosis of a terminal illness, it helped her get a place in a nursing home very quickly. She enjoyed the atmosphere there (very social) and it meant all of end of life caring was taken care of. So - that may be something, if you were thinking about when to make the move into a nursing home. 

[Pawz4me]

43 minutes ago, PeterPan said:

If they do comfort care with the cancer treatment, I *think* you can do that *and* be on hospice. It's a common misconception that hospice means terminating care. Talk with the doctor, but I think you can do comfort care for the cancer, including those IVs if they find a way, AND receive hospice.

 

Here in the US with hospice services you can't receive treatments that are meant to extend life. You continue on medications/treatments that maintain quality of life, but not ones that are meant to extend life. Immunotherapy for cancer is a life extending therapy. Radiation can be life extending or palliative (comfort).

Also, to qualify for hospice here in the US typically the patient needs a doctor to say that the patient's life expectancy is six months or less (although that can be extended if needed, because of course it really is a guess). Just having a cancer diagnosis might not get that prognosis. Even w/o treatment many cancer patients live much longer than that.

[PeterPan]

15 minutes ago, wathe said:

"Hospice" is a word that means different things in different places.   Here, it is a physical place where patients are admitted to receive end-of-life care ---  like a very special hospital, with a home-like atmosphere.  In the USA, it seems rather to denote a level of in-home visiting nursing care in one's own home.

Yeah, that's why I was asking. It may even vary by state. We have various hospice options and inhome is one. Here palliative is a newer thing, not as widely available, and means case management for complex symptoms. It gets you once a month visits from the nurse, no chaplain, etc. Hospice can be at home, in a facility, etc. and comes with tons of resources. That's in the US. And to qualify you'd be within 6 months of end of life based on the intake assessment. However strange things happen where people are on hospice longer. My grandmother was on hospice with her AHD for over a decade, but that was before the new trend with palliative. Now that person would go palliative now that we have both options. It will even be the same provider and you have your choice of providers.

[wathe]

Palliative care here means a palliative approach to care, rather than a particular service or level of service.  It an approach based on relieving suffering and optimizing quality of life and quality of death, in the context of life-limiting illness.   It can complement disease-modifying treatment.  Some patients with life-limiting illness are followed by a palliative care MD for years.

I am an advocate for starting a palliative approach as early as possible for those with life-limiting illness, even if they are also receiving disease-modifying (life-prolonging) treatment.  Our cancer centre does this, and it really does improve patient-centred outcomes.

[Pawz4me]

10 minutes ago, wathe said:

Palliative care here means a palliative approach to care, rather than a particular service or level of service.  It an approach based on relieving suffering and optimizing quality of life and quality of death, in the context of life-limiting illness.   It can complement disease-modifying treatment.  Some patients with life-limiting illness are followed by a palliative care MD for years.

I am an advocate for starting a palliative approach as early as possible for those with life-limiting illness, even if they are also receiving disease-modifying (life-prolonging) treatment.  Our cancer centre does this, and it really does improve patient-centred outcomes.

This is how I’m familiar with the term’s use here. Many people believe it’s just an accompaniment to hospice (end of life) care, though. It’s a term that constantly has to be explained to new members on the cancer support board I belong to. There’s a lot of confusion about it. 

[kbutton]

1 hour ago, chocolate-chip chooky said:

 

But if it turns out to be squamous cell carcinoma, they may be able to remove it via surgery. There would then be no ongoing treatment, as far as I can understand at this point, but it would grow back slowly. 

The questions are whether the surgeries under GA are worth it for an 82yr old already in declining health and with dementia.

Is there a reason they can’t plan for the biopsy to turn into removal surgery all in one encounter? It would be fewer times being put under.

I think that would make a difference in how I sorted it out depending on how the actual recovery from the surgery would go (pain levels, ability to leave the wound alone, etc.). 

 

[Bambam]

I'm just going to throw in an elderly relative's experience with squamous cell Carcinoma. She was older and also had memory issues. They (family) elected to have it cut off in office where they took a slice, made you wait while they sent it off to lab to get analyzed, and if they didn't get it all, they took another slice, repeat.  The procedure wasn't so much the issue, as the fact she didn't remember what had happened later and kept taking the bandage off the wound and getting very upset at her appearance. The treatment of the wound due to this was not ideal at all, and the lady had always been prideful of her appearance, so it was a grievous thing for her to have this - very grievous.  I was not involved in any of this, just a close relative reported the situation and issues and resulting problems (she was heavily involved and pretty upset by the after effects.)

So, you might investigate what the likely experience would if they do remove it via surgery - wound after care, any impact on physical appearance, will that distress your mom, will there be issues with breathing (since nose involvement) and will that distress your mom, etc.  

It's a hard decision. May you and your sister find a way to come to terms and an approach you feel is best. 

 

[Katy]

There are hospice homes in the US too, like a nursing home for the dying. But most people opt to stay at home. 

[klmama]

If hospice is what is recommended, ask anyone you know in the medical field or at care homes who they would want providing hospice to their family members.  The quality of care and follow through can vary considerably.  

[chocolate-chip chooky]

2 hours ago, wathe said:

A biopsy will help with prognostication.  It will be an aid to planning.  Once you know what you are dealing with, then you will be able to make good decisions about future care: whether or not any potential disease modifying treatments would be consistent with your mothers wishes, values and goals.

But, if you already know that the decision will be palliative care (ie symptom management, quality of life, and relief of suffering) no matter what the biopsy shows, and that your mother would decline active treatment, then there probably isn't much to be gained with the biopsy.

"Hospice" is a word that means different things in different places.   Here, it is a physical place where patients are admitted to receive end-of-life care ---  like a very special hospital, with a home-like atmosphere.  In the USA, it seems rather to denote a level of in-home visiting nursing care in one's own home.

Thank you very much for joining the conversation.

One of our big concerns is GA and dementia. There are so many stories about GA causing dementia to worsen, speed up etc, on top of the initial delirium concerns (which we've been told could last a month).