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Is there an appropriate time to decline surgical procedures?

My loved one was taken to hospital for suspected internal bleeding; the doctor suggested an egd which would require general anesthesia. The patient is 88 and suffering from dementia/alz for probably about 15 years. Is this or any surgery requiring general anesthesia worth the risk?
Status: Open    Sep 20, 2015 - 10:30 AM

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Sep 25, 2015 - 01:04 PM

My 95 year old cousin had internal bleeding and the doctor wanted to do a similar procedure? I asked the doctor what he would do once they determined the cause of the bleeding. He answered” Probably nothing at her age. Since she was not having any discomfort, we declined the procedure. She died peacefully, about a month later.

On the other hand, my mother-in-law, who had severe lung disease, was having so much pain that she consented to have surgery. I would like to say that it was worth it, but she had surgical complications and did not have the peaceful death that I would have wished for her.

I wish you and your loved one well in making this decision. To answer your question, there is no ‘appropriate time’ to decline a medical procedure. Each situation depends upon the individual.
It doesn’t make the decision any easier, but on the other hand we still have the right to make our own decisions.

Jan 25, 2016 - 10:41 AM

Thanks for your question. It’s an important one when faced with 10 or 15 years of dementia in an older person. Unfortunately I can’t give you a simple, straightforward answer about each and every procedure – there are so many combinations we can imagine. I think what you are really asking is this: what is really most important to my loved one? What are her or her top priorities? And if we can identify that, then how do I (we) ensure that everything done or not done agrees with those priorities? There will always be tradeoffs unfortunately, even more so in persons with advanced dementia.

When you or I have a medical problem there are tradeoffs too, but we can better manage them. For example, we tolerate pain and suffering while hospitalized (have you needed an IV line for 3 or 4 days recently…it’s no picnic!). But we expect to be cured by modern medicine, and we often expect to ‘get back on our feet’ so to speak. Go back to work, care for ourselves, take vacations and so on. And we assume we will survive the treatments or procedures, obviously.

With dementia – especially advanced dementia, where the person may no longer be independent or even able to communicate – they cannot avoid the tradeoffs. They simply don’t have the reserves that we do. That’s why it’s so important to know what the top priority really is. Is it survival at all costs, the most number of days alive regardless of pain, function or ability to communicate? For many that is the goal, and that’s fine. In that case there is no surgery or procedure too burdensome, as long as there is a very good chance of prolonging life, of supporting that goal.

But for others the priority might be no pain or suffering at all, regardless of how long – or short – life is. In that case even an EGD would not be tolerable, because it violates that priority. For others the most important priority is being at home surrounded by loved ones, or even dying at home. In that case even an urgent ambulance ride to the ER in the middle of the night would violate their priorities and their wishes. That person might benefit from hospice services early, not just in the final week before death as so many people do. Hospice can help families keep their loved ones at home, free from pain, and supported in the final six months or year of their lives, but only if it’s requested early.

The hardest part is coming to agreement on what the top priority really is. It takes honest conversation with patients and with families, and I know how hard that can be. Support for those conversations from physicians is hit or miss. Some do it well, others not at all. Palliative care physicians and their teams do it better than most, so you can ask for some guidance there if the hospital has that service available. Or a primary care physician who has known the patient for a good amount of time. Just telling the hospital physicians that you would like a thoughtful conversation about decision making, and demanding that they make the time to do so, might get everyone to slow down just enough to get you the help you need.

Finally, know that you are not alone in grappling with these issues. Many, many families struggle with the same questions, so thank you for being courageous enough to ask.

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By jbrodsky42 on Sep 03, 2016 - 10:04 AM | Like (0)  |  Report

This is a well-written, compassionate...and very realistic approach to quality of life issues.
As an RN/NP I have been involved in most aspects of Patient care(in-patient and out-patient) for 50+ years; recently my 77 year old sister came to live with me from out-of-state. My 4 month search for her brought her back to CA after a 15 year of never hearing from her. She always had an odd personality, never worried about much or planned for tomorrow...including any medical care, although she had Medicare insurance. Apparently she had a stroke in 2015, but refused hospital admission. She is penniless with her only asset being an $1100 SS check/monthly.
She has had a lifetime of medical care in the past 2-3 months...and is scheduled for colon cancer surgery next week. Fortunately a laparoscopy approach makes recovery much easier than a few decades ago. However the CT scans have exposed other possible issues, thus
bringing up the question "when is enough, enough." Sis has mild-moderate dementia which improved somewhat with correcting her unknown hypothyroid & hypertension issues. Equally concerning, she and I have never been particularly fond of each other and her oddness is in my face 24/7. I also have durable power of attorney for her, following the sage
advice from someone who works with Alzheimer patients. To get to the point (LOL), her PCP,
surgeon, endocrinologist, and Pat, & myself have had the quality of life vs Hail Mary's approach. Sadly Pat forgets in 10".
Sort of like the current immigration issue, many/most dodge the quality issue for "politically correct" reasons, possible feeling it's too close to home to digest. Fortunately our Drs embraced the conversation.

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Sep 24, 2015 - 09:46 AM

As a physician(anesthesiologist) and a daughter of a dementia patient I am so glad that you are asking this question! There are several things to think about when you consider medical intervention for your loved one.

#1 . What were the (pre-dementia) wishes of the patient? In my case it is very clear that my mom would have no desire to live the way she is in her current state and would not want any life prolonging measures. Hopefully you (or another family member or doctor) had those discussions with your loved one before her dementia developed.

#2 . What do you hope to achieve with the surgical procedure or medical intervention? Is the procedure to alleviate pain, to enhance function, to prolong life or to find out what is the cause of an abnormal symptom or laboratory value?

In your case the procedure suggested (EGD) is to investigate a cause for 'suspected' internal bleeding. Many elderly have low (hemoglobin) blood counts or anemia and 'internal bleeding' is often suspected and can be due to gastritis/ulcers (commonly due to aspirin use, nonsteroidal anti-inflammatory (NSAID) pain medicine use, or steroid use) or it could be a tumor or cancer of the gastrointestinal tract. Gastritis or ulcers can easily be treated empirically with medicines for a few weeks to see if it helps without putting your loved one through an EGD or anesthesia. If it is a cancer, do you really need to know? - Are you going to treat it aggressively with surgery and chemotherapy? What would happen if you just watched and waited? I would discuss these scenarios with you doctor before having any procedure done.

Having said that, although your loved one is 88 years old, if they do not have significant heart or lung disease or morbid obesity, the risk of general anesthesia for EGD is relatively low although having it done in a hospital setting rather than an outpatient clinic setting might be prudent.

#3. Often test are ordered by doctors as a knee-jerk reaction to a problem (iron deficiency anemia - order an EGD and colonoscopy) without considering the unique needs and priorities of a dementia patient. Do not be reluctant to question your doctor about the need for any test, procedure or surgery! Don't be afraid to ask:
What could the problem be?
How could this test/surgery help and what is the likelihood it will?
How could this test/surgery hurt and what is the likelihood it will?
What if we watched and waited?
Will this make my loved one more comfortable? How?

#4. It is difficult to make decisions for another person, especially those that do not prolong life. The important question to ask is , from the view of your loved one, is this the life they would like prolonged. Your job is to help them make the choices they would have liked to make.

Good luck and keep on questioning, you are on the right track.

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Oct 04, 2015 - 10:38 AM

Pre-planning based on the specific patient's wishes can answer that question and do so long before circumstances force an answer.

A clear and very specific "If this-do that" patient defined checklist can work exceedingly well in facilitating exactly that - An answer on what to do.

No guessing, no agonizing on what to do - the patient has very clearly told you what to do EVEN IF THEY CANT SPEAK FOR THEMSELVES AT THAT POINT.

Is then clearly based on the Patient's own stated wants not yours or the MD's - no guessing, no guilt over the answer, just knowing precisely what the patient wants and delivering on their stated "if-then" wants.

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