Surgery at stage 6+ ?

ninalu

Hi All,
My mother is late-stage 6+ and living in a memory care nursing home. She's mostly non-ambulatory and her ability to verbalize / communicate is limited. However, she's communicative with her face, hands, eyes - very loving, kind, connected, sweet. Her physical health is fairly robust - eats well, at good weight, other physical risks have been well managed. As her condition has progressed, we do everything we can to keep her out of the ER and hospital because psychological stress has shown to be physically risky for her. 

She had a fall recently which showed a lumber vertebrae compression. The vertebrae, previously fractured in an earlier fall, has become compressed and they are recommending surgery. I'm meeting with the neurosurgeon to discuss their recommendations and better understand the diagnosis, inherent risks, recommended procedure, risks of the procedure, and expected benefits.

My concern is that surgery for her could be a dangerous affair. Not doing surgery could be dangerous too. It's not clear to me that any of us understand how much pain she's in due to this compressed, fractured vertebrae.

I would very much appreciate your thoughts on the risks of surgery for an 84 year old dementia patient. Is it absolutely a no-no to have surgery at this stage? What should I know? What should I make sure to ask while meeting with the surgeon? 

Thanks very much for helping me prepare for this.  

M1

Ninalu I'm sorry this happened. I suspect what they want to do is called kyphoplasty or vertebroplasty, which is injecting cement into the compressed vertebra to stabilize it. Its a controversial procedure, not clear that it helps. If shes not very mobile anyway, I don't know that it would help. Hard to judge. Does she seem to be in pain? You could treat pain with narcotics. Has shevhaf a hospice evaluation?  Sounds like she would qualify, and they could help with pain management too.

On the other hand, this is a relatively minor procedure, usually done as an outpatient. If it's anything more extensive, I wouldn't put her through it.

Very hard to know. They say this is like asking a barber if you need a haircut. Just because you can do a procedure doesn't mean you should.

Keep us posted...

DrinaJGB

Any elderly -much less dementia patient who undergoes any type of anesthesia is going to have a huge set-back cognitively from any type of surgery.  My DH fell and broke his femur in 2017 which required emergency surgery. Before surgery he was improving, but afterwards he had taken several steps back cognitively. And I do mean several.

Upon seeing his neurologist a year later I was asked how he did after having anesthesia, and I described his mental decline was significant. The neurologist kept nodding his head and declared that yes--any surgery with anesthesia has an enormous impact on the cognitive functioning of any patient with brain damage---which can last months if not years---which was  most assuredly and unfortunately our  precise experience.

King Boo

There are 2 parameters that need to be considered:

-pain.

-is she near death

When I was making decisions, the whole worrying about anesthesia effects generally was tossed out the window - because the nature of the injury, the pain and the stage of my LO dictated that the surgery was absolutely needed, regardless of outcome.  It would have been unconscionable for me to leave him untreated.   So while pretty far into dementia, he was also pretty far from death.

We did not have any complications from anesthesia.

However, if one was on hospice or within weeks to a few months of anticipated death - this might have impacted decision making.

But chronic pain is a truly terrible thing.  Eliminating the pain was my main goal - if it accelerated the disease process (which was going to happen anyway at some point) was a necessary risk.   And it didn't happen.

dayn2nite2

Because "memory care" is all over the map in what services they offer and the level of care provided another issue is:  Has this facility agreed to take care of her until death?  Are there more costs associated with worsening of the disease (charging for extra lift assistance, extra care, dedicated caregivers)?

If she is in a memory care that is very limited as to how far they'll go with her, I might pick out a facility she can move to before scheduling this surgery, because you are guaranteed a worsening of cognition/disease here.  While you're waiting for the surgery I would certainly have a palliative care specialist come in and assess for how much pain she's in and get that treated right away.  Chronic pain also worsens cognition.

If they will take care of her through worsening and eventual death, I'd just get the surgery done but with the full expectation that she will certainly become worse after the anesthesia.

abc123

Hi Nina,

I'm checking in to say hello and see how you & your Mom are doing. Have you decided how to move forward? I'm sure you will make the best choice for her. We are here for you. Please let us know how things are going.

ninalu

hi abc,
Thank you for checking in! All replies and perspectives have been so helpful to me. 

Mom and I are headed for the surgical consult tomorrow (wednesday) and I plan to report back once I know their proposed treatment, prognosis, etc. I expect to have more questions. 

I certainly agree that treatment is warranted in the presence of chronic pain, and that's one of the first things I'm seeking clarity on: is there a way for us to know how much pain she's experiencing? and if the treatment we offer is actually helping? 

Lady Moxy

My sister and I went through a similar decision-making process just two weeks ago. The key, if surgery is the choice, is to make sure that blood clots don't form afterward. 

Following surgery for her hip fracture, my mom refused to take blood thinners, or any pain medication. As a result, she did not walk after surgery. Now, mom is totally bedridden with a blood clot that is traveling up her thigh.

harshedbuzz

ninalu-

Good luck with the consult today.

I just wanted to weigh in on two thoughts. 

Be sure to ask what other options there are and what happens if you do nothing. I would also ask about the recovery and physical limitations after. It's unlikely someone in late stage 6 would be capable of recalling her list of "don'ts" or participating actively in rehab which means Medicare will boot her out of a rehab center quickly. Sometimes I thrown in the "what would you do if it were your mom?" line of questioning. 

My mom (not my dementia parent) has the spine from hell. She's always had a little scoliosis, stenosis and now has osteoporosis and several fractures/disc issues in the lumbar region. This was worsened by her very first "dementia injury"- she went to report the sighting of her neighbor with EO eloping down the 15th fairway of their golf course while her husband was having a shower and their dog attacked her. You can imagine that a well dressed and "normal" looking lady traipsing through an expensive course would be at risk of flying balls and angry words. 

Her neurosurgeon felt the repair would be too extensive and recovery long, so he suggested pain management. YMMV. As awful as my mom's X-rays and MRIs look, she's done pretty well over the years with and occasional epidural steroid injection done under sedation. FWIW, she hasn't had one in over 5 years. She has prescriptions for Oxycodone and Tramadol but I can only think of a few instances in which she has used them while waiting on an injection. 

Two of my aunts had surgery with dementia. One had a TKR with a spinal and the other a hip replacement after a fracture under general anesthesia. The TKR-aunt had a stroke in recovery and never walked again. She lived another 8 years without pain, so it wasn't entirely bad. The other aunt was early middle-stages and was slammed into late 6 by the experience. She required private-pay sitters and died within 4 months. It's a gamble.

The other thought is that you would probably have a sense of whether she was in pain. You describe her as communicative and eating well- if she were in pain, she would probably be more withdrawn, grimacing and have lost her appetite. In your shoes, I might engage hospice and skip surgery unless there is a compelling reason to move forward with the surgery. 

HB

mommyandme (m&m)

Exactly what I was thinking HB, pain management.  Cortisone shot or something of that nature especially since she’s not very mobile.

ninalu

Hi everyone, 
Thank you for helping me weigh out how to handle mom's compressed vertebrae. You've given me a lot of good counsel and things to consider. 

For some background, mom is in a SNF with special focus on memory care. She'll be there until her death, I expect. She is not near death - she's fairly robust physically still. But she's a robust fragile person, if you get my drift. It's for this reason that I hadn't thought hospice is an option or needed yet. Mom is definitely in pain at least some of the time, but we don't know what's causing it. The ER doctors focused in on this vertebrae during the evaluation after her last fall. My biggest concern and unknown is that mom would be unable to accurately report ANY pain she's in and that, coupled with her temperamental toughness, agreeableness & stoicism, would further prevent caregivers from understanding and therefore completely managing her pain. 

After reading your responses I'm more reassured about my concern. As I hear you all, if mom were in significant pain, we (myself and caregivers) would pick up on it through her behavior and facial expressions. Even if she couldn't tell us, "I'm hurting!"

The visit outside of her facility was an eye-opening experience for me. I now realize that her leaving the facility in transport is something we must minimize. It is overwhelming and stressful for her to leave a familiar, safe environment. The outside world is too cold, too loud, too fast / jarring, too confusing - all causing an unacceptable amount of stress. She cried out in pain and upset several times, but when asked about the pain it was her chest and not her back that hurt. Last month she was treated with heavy antibiotics for a intractable pneumonia. She also has elevated troponin levels on a regular basis, which may or may not be significant. Medically, the doctors don't seem concerned about this. But when I researched it, I saw that this is a marker of heart muscle damage. For a couple decades now she's had tachycardia and palpitations. 

So. Where this leaves me is:

- The neurosurgeon wants an MRI to assess whether this vertebrae continues to degrade or if it has stabilized and healed. If the latter, she doesn't need any intervention. If the former, they'd do an outpatient kyphoplasty (like M1 suggested), which the doc said is an easy-breezy local anesthetic situation. I asked him if he has treated patients like my mom and he said that especially for fragile patients like my mom, it's very important to stabilize them. 

- It's not clear that an MRI is doable, according to the nurses at her SNF. The head nurse and doctor will evaluate if she can withstand an MRI. I'll learn more as they assess mom's case. If they decide that no, mom can't do an MRI (she can't lay flat, etc) then what? I'll have to take this piece as it comes. 

- My impression is that her SNF is very conservative about employing big-guns pain medication. They have to comply with certain state regulations that limit using certain meds with this patient population. As an example, when mom entered the SNF, the facility insisted on weaning mom from Seroquel, despite my protests and detailed history explaining that it was the ONLY med that addressed a number of mom's most pressing symptoms (including significant PTSD and sundowning.) They weaned her and she did very poorly, didn't sleep a wink, had angry outbursts, and now she's back on it. I was very, very disappointed that mom had to go through that ordeal just to demonstrate that the med is necessary to the state. I was also disappointed that a detailed history (from myself and mom's excellent primary care doc) prior to admission wasn't enough to demonstrate need. Sign. I guess this experience was fairly typical but it made me concerned that I still need to be the eagle looking out for and fighting for mom's need. This is even when the care she gets is exceptional. Her SNF has exceeded all my expectations in other ways. 

The only clear next step I have is to stay on top of the MRI authorization / eval from the facility medical management. Can't they use sedatives for an MRI, if they're concerned she won't lay still? 

Maybe my next step is to call on hospice and get their perspective? In other ways, mom doesn't seem like she's ready for hospice - am I wrong here? 

Thanks for reading this long reply and thank you all for the helpful perspective. I feel a bit lost right now about how to be the best advocate for my mom. 

M1

Ninalu, thanks for the update.  There is an excellent online medical resource called Up To Date that I have access to through work, and I looked up any recent data on kyphoplasty--very little data that it helps.  I would leave it alone and ask for a hospice evaluation.  Most of us wait too long, so I wouldn't worry about asking for it too early.  

Most neurosurgeons are pretty conservative, but they get paid to do procedures.  So he's got a vested interest in doing it, sadly.  Like I said before, can and should are two different things.

I certainly know that all facilities have to be very conservative with pain medications (opioids) these days, but Seroquel is not an opioid and is not a sedative.  I've never heard of any restrictions on its use like that.  I'm glad she's back on it.

MN Chickadee

There must be some new federal regulations around pshychotropic drugs. At a minimum I know there is increased attention and scrutiny. One study found that bogus schizophrenia diagnosis have soared 70% in long term care in the last decade in order to get away with prescribing these drugs.  Some people's loved ones are unnecessarily zombies, some aren't even consulted when their PWD is prescribed one. It can be a loophole to sedate PWD instead of providing the more costly, staff intensive care that regulators are trying to promote. So regulators come up with these attempts to fix it, even though many of us know exactly what our LOs need.  I get how irritating it is when your LO is stable and they mess with it. We went through the same thing, where because my LO was on a carefully concocted cocktail of drugs (seizure med, mood stabilizing meds etc.) But the pharmacy was required to warn the prescribing physician, who then wanted to make sure she needed them all. Long story short is she did. I understand the desire to try to reduce their use, since they do come with significant risk and are being abused in many settings, but it is indeed a heavy handed brush for situations that require nuance. Nothing about any of this is easy.

 MRIs are notoriously difficult, if not impossible, for PWD in later stages. Many here have tried and failed. There are reasons sedation doesn't work either. And doctors and specialists who don't routinely work with dementia really really don't get it sometimes and will just go by the book, advising whatever they would for a normal person (and racking up billable procedures as M1 pointed out.)  It sounds like you may be coming to that difficult crossroads where it's time to start prioritizing the quality of her time left on earth versus lengthening it. MRIs and taking her out for appointments may actually be hindering the goal of giving her the best days you can as you reach the end.  My LO is also late stage 6, and I don't think there is any possible reason I could put her through any surgery now.  If you ask me if she is near death today I would say no, but I truly believe after a procedure like that she would be. The stress on her mind and body of such an experience would take its toll more than whatever we were trying to fix. The facility may balk at pain meds, but ultimately it is not up to them. I think if I were in your shoes I would indeed get a hospice evaluation and see if that helps clarify choices and go from there.

ninalu

Thank you for the advice and shared wisdom on how to proceed here. Giving mom the best quality life is absolutely what I want. 
  
I'll request a hospice evaluation and report back on how the next steps go. 

mommyandme (m&m)

My mother, late stage 6, has been with hospice since February.  She’s not near death but she’s declining, even though slowly.  Hospice takes on a different role with dementia and are extremely appreciated here. 

My mother will say “ ouch” often to express simple discomfort whether it’s physical or mental. Something isn’t right in her world but she can’t explain it.  She usually isn’t in any type of serious pain.  Since she doesn’t have much of a sensical vocabulary that is sometimes the word she chooses.

Hope you feel peace with some of the decisions today. 

ninalu

Hi everyone,
My mom was approved for Hospice care just today. A wonderful nurse did a thorough assessment of mom's progression over the last 6 months and then spent a long time talking to mom and I, observing, and asking very good questions. 

I wouldn't have known to ask for Hospice help at this stage without the wisdom and caring of all of you. I feel very, very grateful for you all. Thank you for helping me do the right thing by my mom and bring on extra support for the next steps in our journey.