Expert: Mary Gordon - 11/22/2011

Question
My Mom, 76 has been diagnosed with micro vascular dementia.  Recently she fainted and was taken to the hospital where a CT scan, brain MRI and echocardiagram was done.  The results of the echo showed an aortic stenosis with a 7cm function, called severe by the cardiologist.  She was diagnosed with this a little over a year ago but was asymptomatic. The cardiologist recommended a valve replacement.  She already is in mid-stage dementia, around 3 years into it but only truly diagnosed last spring.  She is tired all the time (seems to have come on rather rapidly)and is quite depressed.  We were about to move her into assisted living since she can no longer take care of herself.  Our problem is, do we go ahead with the open heart surgery? We are reluctant to prolong life if it means her living as a severe dementia patient or have the surgery possibly allowing her more time of being ambulatory while the dementia runs its course (knowing that the surgery could exacerbate the situation).  Any guidance would be appreciated.

Answer
Hi Bruce, I think you already have an inkling of what I'm going to say.

You have to come at this from the vantage point of a flinty eyed realist - which is a hard thing to do when it comes to loved ones and their situation. No wishful thinking, no rose colored glasses. I know if you could restore her to health, you'd do anything possible. Look at it strictly in terms of what is being traded off, and what the family hopes to achieve by taking this leap. Put aside fear, and guilt and any pressure being put on your family by surgeons and doctors who are looking at this from a purely mechanical viewpoint. They don't love your mother, and won't have to live with the results of any surgery. You, and the rest of the family have to be comfortable with the benefits and risks and at peace with your choices - and they are not easy ones.

You also have to think about what she would want - you know her better than anyone, you know what she has left to lose, and what she wanted for herself. What is the most loving, compassionate option?  Will this intervention buy her better quality of life? Her lifespan itself is already limited by her dementia.  Will putting her through surgery make her more comfortable, happier, make her safer, more loved, more peaceful and serene? Will it improve her ability to enjoy some aspects of her life?

You probably know that anesthesia alone can cause cognitive impairment in the elderly (called POCD or post operative cognitive impairment).  This is exaggerated in people with dementia, and is quite apart from the post surgical "delirium" she will go through. POCD often results in permanent decline - i.e. some people will come back slowly, but often not to where they were prior to surgery. If you haven't seen it yourself, it is hard to imagine how dramatic it can be.

In early dementia, prior to formal diagnosis, my mother in law broke a hip. At the time, she was living on her own and doing just fine other than a little forgetfulness. Post surgery, she was totally loopy. It was frightening. The hospital brought in a social worker to talk to us. They thought we were lying and in denial about her pre-surgery condition, and they wanted us to immediately put her in a home. She did recover somewhat, but it took months and months, and she was never back to where she'd been pre-surgery.

She had another fall in mid dementia and broke the other hip, and again, the impacts of anesthesia and trauma were dramatic. Despite the fact the repair was entirely successful mechanically we were never able to get her walking again, and that was also the end of all continence. She just had no idea what the purpose of our efforts was, and couldn't try to participate. It hurt, she was scared, and confused, and finally we just decided to let her be.

Heart surgery for your mother will involve huge physical and emotional trauma and stress. You should expect a dramatic delirium in the aftermath. She will be in a strange place outside of her familiar surroundings and routines. She will not understand what is going on or why. She won't understand what has happened to her. She will not be able to cooperate with procedures and therapies that may help her recover, because she lives in the "now". Visualizing an abstract future she can influence by cooperating and working hard at recovery will be beyond her ability. She will be full of drugs and in pain. She will be weak. She will need someone from the family with her all the time, because hospitals are not equipped to manage patients with dementia (including getting her to eat enough). She will be frightened and confused by painful tests, procedures and exercises and not understand what anyone is trying to do for her. She is likely to need chemically or physically restraints to prevent her from pulling out tubes or trying to get up unassisted. She will not understand verbal instructions or questions, and staff are likely to think her lack of response is a hearing difficulty rather than a cognitive one.

Physical recovery in a healthy person for a valve replacement is at least three months, and six months in a less healthy person - and for your mother, it could even be longer due to the cognitive issues..

Surgeries like aortic valve replacements that usually involve a heart lung machine are particularly nasty for dementia patients. For whatever reason, they seem susceptible to what doctors sometimes call "pump head" or postperfusion syndrome, which is a form of post surgical cognitive impairment that is permanent about half of the time.  No one really understands the cause and there is lots of debate about the real cause. It could be from debris and trauma causing mini-infarcts (i.e. fat globules, plastic bits, broken blood cells, little bubbles, dislodged plaque). It could be related to the way the machine pumps blood, which is not the same as a person's own heart, and it could be the rewarming process or the underlying disease itself. Doesn't really matter what the root cause is though - the net result can be startling, and certainly defeat the purpose of the surgery if the hope is to buy better condition - which has to consider mental as well as physical factors.  

There is a less invasive procedure that does not require an open chest, bypass or heart lung machine called transcatheter aortic valve replacement (TAVR) but it is not widely used in the US, and carries with it a really serious stroke risk, particularly for people like your mother..

Best practice guidelines often say things similar to what I've said as per this from the British Medical Journal:
"The advent of TAVR has made it possible to relieve aortic stenosis in the majority of patients, regardless of their physical condition. However, just because valve replacement may be done, does not mean that it should be done. The decision to replace the aortic valve, either surgically or via catheter, should consider the expected benefit. Patients with terminal illness, significant dementia, or advanced comorbidities in whom valve replacement would not be expected to provide a meaningful improvement in life should not be referred for valve replacement."

Just from my own perspective, I suspect I would consider palliative care options, keep her comfortable and as happy and content as achievable  for as long as possible, and let nature take its course. My mother in law survived to the bitter end of her dementia, and it wasn't anything I would wish on my worst enemy. She spent the last two years of her life propped up in bed, helpless and unaware of her surroundings. She was very healthy physically, so she had nothing that might have mercifully carried her off before she got to that point. It sounds like a terrible thing to say. I don't think she was suffering because she was oblivious to her own situation, but it was horrible for everyone who loved her knowing she was living out her worst nightmare and there was nothing to be done but wait.

Your family needs to have a frank talk with the doctors so your expectations are realistic and you can make a truly informed choice. You might want to talk to her neurologist as well, so you really get some perspective on her specific risks.

I know this is awful. I wish you strength and peace in whatever you decide.

Mary