Alzheimer's Advance Directive

[b2bailey]

Just finished watching a PBS show on subject.
Along with the emotional factors for families, the financial implications were stressed. They are predicting an 'epidemic' amongst aging baby boomers.

My family doesn't have a history, but who knows?

So here is my question. I know there are a variety of 'advance directives' but have never seen an instruction that would say:
"In the event of an Alzheimer's or dementia diagnosis, please withhold my daily meds that may have been administered in the past, and do not prescribe anything besides pain relief in the future."

I just can't see any purpose in extending my life if I have reached the point of not being able to function. I'm not asking for physician assistance to die -- but would not want to prolong staying alive by use of medical prescriptions or procedures.

Thoughts or comments?

 

[Passepartout]

DW says that here, the official Advance Directive form has a line for you to insert any condition you want left untreated. Her clients include Christian Scientists who basically let nature take it's course, all the way to 'use all means to preserve life.'

You should see your estate planning or elder law professional to have your wishes laid out clearly, including with your primary doctors and the person you nominate to carry out your wishes if you are unable.

 

[b2bailey]

Thank you. I immediately found a helpful form online.

 

[b2bailey]

Part 2 of my question has a tinge of morbid curiosity. Are people who are suffering from advanced Alzheimer's given continued treatments such as dialysis?

 

[dougp26364]

Part 2 of my question has a tinge of morbid curiosity. Are people who are suffering from advanced Alzheimer's given continued treatments such as dialysis?

Yes, and heart bypass surgery, heart valve replacements, pacemakers (all of which I've seen done) and any other procedure anyone in charge directs them to have. I once had a patients family member threaten to file a malpractice claim against a surgeon who refused to do bypass surgery on his father with advanced dementia. The problem wasn't the surgeon wouldn't do it but couldn't do it. The patient had bypass surgery twice before and, in this case, wasn't a candidate for bypass surgery regardless of his mental status. Once it was fully explained that his fathers mental status wasn't the issue he calmed down a bit.

Even with advanced directives a family member is often able to bypass their loved ones direct written wishes. Right or wrong I've seen this done. You need a STRONG patient advocate with durable power of attorney FOR HEALTH CARE decisions (it can be a different form than durable power of attorney for financial affairs) to make medical decisions to stand up for the patient. A person strong enough to stand against the pressure of family/friends who want everything done. Unfortunately that doesn't always happen.

I have reinforced with my family that, should I be diagnosed with any form of dementia, they are to only treat pain and allow natural death to occur. No hospitalization other than hospice. No procedures, no treatments, no forced feeding or hydration. Once my brain is gone, I'm gone.

 

[Patri]

The hope is that dementia is properly diagnosed, and confusion is not the result of medicine interactions.

 

[Passepartout]

Even with advanced directives a family member is often able to bypass their loved ones direct written wishes. Right or wrong I've seen this done. You need a STRONG patient advocate with durable power of attorney FOR HEALTH CARE decisions (it can be a different form than durable power of attorney for financial affairs) to make medical decisions to stand up for the patient. A person strong enough to stand against the pressure of family/friends who want everything done. Unfortunately that doesn't always happen.

This cannot be overstated. There is no substitute for advance planning for ANY eventuality to assure that our wishes for OUR OWN care are honored.

 

[b2bailey]

Yes, and heart bypass surgery, heart valve replacements, pacemakers (all of which I've seen done) and any other procedure anyone in charge directs them to have. I once had a patients family member threaten to file a malpractice claim against a surgeon who refused to do bypass surgery on his father with advanced dementia. The problem wasn't the surgeon wouldn't do it but couldn't do it. The patient had bypass surgery twice before and, in this case, wasn't a candidate for bypass surgery regardless of his mental status. Once it was fully explained that his fathers mental status wasn't the issue he calmed down a bit.

Even with advanced directives a family member is often able to bypass their loved ones direct written wishes. Right or wrong I've seen this done. You need a STRONG patient advocate with durable power of attorney FOR HEALTH CARE decisions (it can be a different form than durable power of attorney for financial affairs) to make medical decisions to stand up for the patient. A person strong enough to stand against the pressure of family/friends who want everything done. Unfortunately that doesn't always happen.

I have reinforced with my family that, should I be diagnosed with any form of dementia, they are to only treat pain and allow natural death to occur. No hospitalization other than hospice. No procedures, no treatments, no forced feeding or hydration. Once my brain is gone, I'm gone.

Thank you so much for your comment. It was good to see I am not alone in my thinking.

 

[b2bailey]

The hope is that dementia is properly diagnosed, and confusion is not the result of medicine interactions.

This cannot be overstated. There is no substitute for advance planning for ANY eventuality to assure that our wishes for OUR OWN care are honored.

Something stressed in this show I watched -- making the hard decisions without advance directive is the worst part.

I've been inspired to get the paperwork done to spare my children the pain of "deciding" what to do. While my husband was alive, I trusted him to do what I would want. And I had to act on his wishes when he could no longer swallow -- and said no to feeding tube.

 

[riverdees05]

What was the name of the show? I would like to see if could find it. Having gone through this with both my parents, I don't want my daughter to have to endure it with me. But never had heard much about Advance Directive.

 

[Passepartout]

What was the name of the show? I would like to see if could find it.

It's called Alzheimers: Every Second Counts. Here's a link to the video: http://www.pbs.org/video/2365941501/

 

[MULTIZ321]

The hope is that dementia is properly diagnosed, and confusion is not the result of medicine interactions.

Also make sure hearing loss is ruled out. It's not unusual for a patient to be improperly diagnosed with dementia when the diagnosis is really severe hearing loss.

Richard

 

[bogey21]

This thread reminds me that I have to talk to my kids and make sure they understand that my Advance Directive means what it says. I don't want them thinking "he really didn't mean that".

George

 

[VacationForever]

To OP, I think you are having knee jerk reaction after watching the PBS show. Alzheimer's Disease runs an average of about 10 years before the person passes. The issue is when Alzheimer's is first diagnosed, it is usually in its 2nd or 3rd year, but the patient can still lead a pretty full life and does enjoy life, whether it is a watching a musical performance or a movie. The patient is able to maintain the relationship with his/her family and KNOWS what is going on, other than losing short term memory. To withhold regular daily medication is not appropriate. Only when it progresses to advanced stage - usually in the last year of person's life, before the person's brain is "gone". An advanced health care directive that address the advanced/final stage is entirely appropriate.

 

[moonstone]

I think its a wise idea to have the Power of Attorney of Health Care made out/signed while you are "of sound mind". If it is signed after the diagnosis has been made the validity of it can be argued. I saw many of these when I worked in a long term care home. I was amazed at how vague some were while others were very specific on treatment or other wishes. I guess it depends on the lawyer drawing it up.

A good friend of mine is in a huge legal battle with her estranged brother over their Mom's POAHC papers. She was the primary caregiver until her mom had to be admitted into a care facility with advanced Alzheimer's. Since she lived near her mom (& over 1000 miles closer than her brother) she had looked after her mom for years after her dad passed. The mom left her 75% of her estate (as a thank-you) and now the brother is fighting her for half. He is saying since the papers were signed after the official diagnosis they aren't valid and the mom was swayed in her decision and the estate should be divided equally. It's an ugly mess!


~Diane

 

[b2bailey]

To OP, I think you are having knee jerk reaction after watching the PBS show. Alzheimer's Disease runs an average of about 10 years before the person passes. The issue is when Alzheimer's is first diagnosed, it is usually in its 2nd or 3rd year, but the patient can still lead a pretty full life and does enjoy life, whether it is a watching a musical performance or a movie. The patient is able to maintain the relationship with his/her family and KNOWS what is going on, other than losing short term memory. To withhold regular daily medication is not appropriate. Only when it progresses to advanced stage - usually in the last year of person's life, before the person's brain is "gone". An advanced health care directive that address the advanced/final stage is entirely appropriate.

Good information. Thank you.

 

[vacationhopeful]

All family members must be onboard with the patient's directive ... and it really is the patient's JOB to educate ALL family members over the prior years. Grief (or is it guilt?), which drives most people to hang onto their family members ... despite reason (IMHO). And many times, causes long term divisions within the family.

 

[dougp26364]

To OP, I think you are having knee jerk reaction after watching the PBS show. Alzheimer's Disease runs an average of about 10 years before the person passes. The issue is when Alzheimer's is first diagnosed, it is usually in its 2nd or 3rd year, but the patient can still lead a pretty full life and does enjoy life, whether it is a watching a musical performance or a movie. The patient is able to maintain the relationship with his/her family and KNOWS what is going on, other than losing short term memory. To withhold regular daily medication is not appropriate. Only when it progresses to advanced stage - usually in the last year of person's life, before the person's brain is "gone". An advanced health care directive that address the advanced/final stage is entirely appropriate.

This statement clearly demonstrates why advanced directives can be so important. Each person should have the right to their own opinion and decided how they want to be treated. At what point a person wishes to allow natural death is often hotly debated among family members. Some say life at any cost. Others say stop at time of diagnosis. Then there's the grey area of stopping at some point in between. It's important to have a document that states what YOU want as far as treatment. Even then it may be difficult to determine without some sort of definitive test or event.

I was once told a story by the wife of a dementia patient. He husband had moderately advanced dementia. He was functional around the house. He recognized relatives. But he also would wander off without supervision. He and his wife went to dinner on a particular day and a particular restaurant, same time every week. While she did not allow him to drive to the restaurant, he still had his drivers license and she still allowed him to back the car out of the garage and into the driveway. One day, while she was getting ready, the phone rang. It was the restaurant. It seems her husband not only backed the car out of the garage but continued on to the restaurant without her.

So this story had a happy ending but, it got the wife to thinking about the progression of the disease and the decisions she would have to be making. She had no written direction from her husband about his wishes and the disease had likely progressed to the point where his decision making skill could be called into question by other family members. Some who would argue he couldn't make decisions reliably and those who would feel he still had enough ability to call his own shots.

Write the document BEFORE the diagnosis and have a strong advocate for your wishes as your durable power of attorney for health care decision. It's your choice. Don't let the burden fall onto your dearest relatives.

 

[davidvel]

As someone who drafts these documents for clients, and who has dealt with this issue personally, I can assure you that when a family/advocate faces these very difficult decisions it is hard. Even with the patient's wishes clearly set forth in a directive, many or most end of life decisions are not black and white, but many shades of grey.

Even with an AD, having the power to potentially decide one's fate is a tremendous burden. It is hard. It is sad; and this person is often the one who is closest and loves the patient the most. Many people put in this position have years of guilt, even when they rationally know they made the decision the patient would have. Any division in the family makes it 10 times worse.

 

[dougp26364]

All family members must be onboard with the patient's directive ... and it really is the patient's JOB to educate ALL family members over the prior years. Grief (or is it guilt?), which drives most people to hang onto their family members ... despite reason (IMHO). And many times, causes long term divisions within the family.

Actually, they don't. The patient has the right to make the decision, not the combined opinion of the family. Unfortunately it often works out as the combined opinion of the family and many times that doesn't follow the wishes expressed in writing by the patient. An advanced directive is often only as strong as the paper it's written on; and paper documents aren't usually very strong in these cases. There's very little consequences to family members when they go against the wishes of someone with dementia.

Which is why I keep coming back to the point of appointing someone to make those decisions for you, without the input of family or friends. It doesn't have to be ONE person appointed to make the decision. If your life has always been a family affair, appoint those in your family you would want to represent you. In my case I DON'T want it to be a family decision. I want it to be MY decision and my children, aunts, uncles and any other relative has NO input into what I consider my decision and my decision alone.

For you, I agree that all your family members need to be onboard. For others, not so much. I would go so far as to agree that it would be nice if all family members are onboard but, in my practical experience, that rarely ever happens. There's always one hold out to go a different direction.

 

[dougp26364]

As someone who drafts these documents for clients, and who has dealt with this issue personally, I can assure you that when a family/advocate faces these very difficult decisions it is hard. Even with the patient's wishes clearly set forth in a directive, many or most end of life decisions are not black and white, but many shades of grey.

Even with an AD, having the power to potentially decide one's fate is a tremendous burden. It is hard. It is sad; and this person is often the one who is closest and loves the patient the most. Many people put in this position have years of guilt, even when they rationally know they made the decision the patient would have. Any division in the family makes it 10 times worse.

I've seen this repeated over and over at the bedside. The paper doesn't hold a lot of weight. If you will, it's a lot like the line in Pirates of the Caribbean. "The code is more what you call guidelines, than actual rules."

 

[VacationForever]

I have worked with many AD patients and their families before our retirement. One of my favorite persons was a musician and a school teacher, a divorcee who was married to a medical doctor and she brought up 5 kids on her own. When she was first diagnosed, she actually put together an Advanced Health Care Directive, which surprised me that she was legally allowed to, and moved herself into a memory care unit.

She was unhappy there and the daughter who was named the Healthcare trustee, moved mother in with her. Yes, there was one time mother drove the car out in the middle of the night and police found her heading up to Oregon from California. Daughter removed the car keys from home and got a caregiver to "help" the daughter with the house and dog, as this woman would refuse care for herself if told that the care was for her, as she said she was perfectly capable on her own. Her daughter worked and there was a trust attorney who was appointed by the mother to oversee all decisions, and an independent fiduciary who handled her finances.

She went to a local Musical/Orchestral performance every week with the caregiver and always had a great time. She loved car rides which the caregiver would drive her. Her daughter said while mother could not remember what she did that day but her mood would reflect that her day was happy. Her daughter told us that there was once they watched a documentary on Alzheimer's Disease and her mother said she hoped she would never get it as it would be so sad, not remembering that was what she had.

As she succumbed to AD, she got weaker and was hospitalized. She never lost recognition of her children, and while dying, she cracked everyone up as she flirted with the young doctor and asked him to go home with her when she left the place. She died a couple of days later and I attended her memorial. She was a very remarkable woman who led a full life until the end.

Every case of AD is different, a diagnosis is the start of an end, but aren't we all headed that way anyway?

What did she die from? Pneumonia, which could have affected any non AD person, anyway.

 

[Blues]

Also make sure hearing loss is ruled out. It's not unusual for a patient to be improperly diagnosed with dementia when the diagnosis is really severe hearing loss.

THIS. I experienced it first hand when my father-in-law was hospitalized for several weeks after a car accident. He has severe hearing loss after a lifetime in the army, during the times before they would issue hearing protection. There was exactly one of the evaluation technicians who understood this, and had to constantly fight with her co-workers and supervising MD, that in fact he DIDN'T have dementia, he had hearing loss. Not being able to hear the questions is not the same as not being able to understand them. This is exacerbated by the fact that he, like many hearing loss patients, tends to guess at what was asked and answer in that context. Sometimes the results would have been hilarious, if not tragic due to the misdiagnosis.

 

[Carrie Palmer]

Just finished watching a PBS show on subject.
Along with the emotional factors for families, the financial implications were stressed. They are predicting an 'epidemic' amongst aging baby boomers.

My family doesn't have a history, but who knows?

So here is my question. I know there are a variety of 'advance directives' but have never seen an instruction that would say:
"In the event of an Alzheimer's or dementia diagnosis, please withhold my daily meds that may have been administered in the past, and do not prescribe anything besides pain relief in the future."

I just can't see any purpose in extending my life if I have reached the point of not being able to function. I'm not asking for physician assistance to die -- but would not want to prolong staying alive by use of medical prescriptions or procedures.

Thoughts or comments?

Though Alzheimer's is a degenerative disease, every person's journey with AD is different. For some it is slow and leaves mental function largely intact for several years. Quality of life becomes increasingly important and caregivers are a great influenecing factor.
I would suggest that we should explore all chances of extending our life. especially with many options available in front of us though not a complete cure.

 

[vacationhopeful]

Families can be destroyed by Alzheimers ... through lack of understanding, non-communication and who is 'left' with the care giving.

Having faced this separately with both parents ... and being the 'local' sibling ... I did get support from my other siblings both within 150 miles to 3000 miles away. Communication was key. Also important was understanding the relationships between our parents and us; us as siblings and when asked to act, it was not NOW the time to start discussing it. My siblings knew the current state of the issues our parents were having ... I knew who our parents would "leaned on/listen to" during these transitional events. And as the local child ... I used these far off siblings as "the closer".

I asked one sibling to take off work the next day and fly 3000 miles ... and help our father move his wife/our mother to a nursing home. There was no discussion ... no "WHY ME?" ... or "I'll see if I can take off." It was "I will call you later and give you my flight arrival info". When our father saw my sister walk into the house behind me the next afternoon, my dad's comment was "What are you doing here? Am I glad to see YOU (to my sister)" And I left immediately, saying I had to get back to work. My dad knew why she was there ... he just wanted (and needed) her support ... her medical opinion and approval. This sister was an RN and married to a medical doctor. And her appearance was the best support ever for him.

And when we had to move my father, it was another adventure ... moving him from the local hospital to another state (140 miles away) with little/no planning. And within 7 days, he was moved to a nursing home near that sibling. No issue with my siblings as to WHY he had to be moved...it was one of his siblings who would have caused legal problems (for her benefit).