This week I have been working on updating my health Advance Directives (US) which is a subject that is very important to me. As health care gets more sophisticated by the day my fear of being kept alive by other people's decisions and by technology and treatments that forestall death without the promise of worthwhile quality of life (QOL) is very real.
It is no longer enough to have a Do Not Resuscitate order. Instead we must be very specific here about what we will and will not approve regarding care.
I first started realizing how much these decisions can affect our QOL if we don't specify our exact wishes when I saw an interview with Melissa Rivers (Joan Rivers' daughter) sometime after Joan died in 2014.
It is always heartwrenching when decisions are left up to surviving relatives when we have not been clear about what we want. The laws seem to be on the side of preserving life and many people do not want to cause legal trouble for families by making wrong decisions.
So if we can find it in ourselves to make these decisions for ourselves we may be giving a wonderful present to those left behind. Hard to do because most of us don't want to think about our own death.
Melissa said in her interview (I'm paraphrasing with similar words) that her mother gave the family a great gift by specifying exactly what quality of life meant to her. I recall the gist was "if I can no longer stand up on my own and perform comedy for one hour in front of an audience then it's time to let me go."
The first book I bought on the subject was about a year ago called: "I'll have it my way" by Hattie Bryant. I watched her on Public Television during fundraising when they have many informative self help programs on.
It was an eyeopener. When I started to list things that for me were important to still be able to do for myself I realized they were things that were very specific for me and that my family would not even consider important in the decision to continue my medical treatment or not.
We are all different and even people closest to us cannot always know what we want. And it has to be legally spelled out in detail in today's world. In her book Hattie talks about how children can become so divided about what each believes is best and how strong families who know what their relative may prefer can 'cave' under pressure of medical advice with their sometimes overly optimistic reassurances about recovery.
For me, I am absolutely clear that I do not EVER want to spend a night in a nursing home. I don't want a health care person-doctor, socialworker,etc- explaining how good the care is in this one or that one. I want it to be my decision.
I have seen families broken up over a decision about whether or not to discontinue treatment.
And I have seen first hand how nursing homes that look wonderful on the surface can have abuse going on at night with just one bad apple and no administration there to oversee the level of care.
Developing an Advance Directive of our wishes is a process and I don't think I will get this completed in a week or two. There is a lot to think about (including making my involved family a part of the planning)
We never know what is in our health care future-procrastination is not useful here- and if we wait until we are too sick to make decisions we have lost our chance to make our wishes known.
I would love to hear others ideas on what you want and how you may have developed your own End of Life Treatment Care Plan. xx irina
A very interesting post Irina , I have written nothing down and will rectify that asap . My children are aware that once I can no longer do what I want , when I want without assistance from a Carer of sorts then my QOL has gone . Independence to me is everything . Modern treatments designed to " keep one alive " are of no interest to me either . I too am a retired Nurse so very aware of some outcomes . Not for me , I'm grumpy enough without being pumped full of goodness knows what substances , just to delay the inevitable .
You just reinforced what I said in a lot less reading time. Nurses know the underbelly stories. Often others have no way to know what often goes on 'behind the scenes.' xx irina
When my father-in-law had a massive stroke, we were told, “we don’t believe he’ll survive this but if he does he’ll be tube fed in a nursing home for the rest of his life”. He had always made his wishes abundantly clear. He always said, “nobody’s wiping my ass. Give me a pill or needle and put me out of my misery”. He passed away a week later.
Our friend’s mother also had a massive stroke. There were 4 daughters. Two (including our friend) wanted to let their mum go. The other two couldn’t face life without her and they wanted everything done to keep her alive. Because there wasn’t a unanimous decision the doctors did what they could to keep her alive. She was basically a vegetable in a nursing home for six years. The saddest thing was the two sisters who fought to keep her alive said after a while, “we can’t bear to see mum like this” and stopped visiting. The two who had wanted to let her go (and knew that would have been their mum’s wish) visited her weekly for years until she died.
It is so important for your family to know exactly what you’d want. Estate planning should include a will, an enduring power of attorney (for financial matters) and an advanced health directive. It also can include an enduring power of guardianship (for medical care decisions if you can’t make them yourself). This of course is under the Australian legal system so I’m not sure if it’s different elsewhere.
Hi Kaz. I am very happy your father-in-law was given the gift of a peaceful death by listening to his wishes.
Your friend's mother, unfortunately, is an all too frequent way people can be treated by the law when family is divided. It's very sad.
It can be easier to unintentionally prolong suffering not by actions but just by doing nothing and putting off discussions and decisions. I know all countries have different terminology in their laws but basically most of us live (and die) under the policy "do no legal planning and we will make your decisions."
The hospital I use and where all my doctors are here in Atlanta has a "60 plus" department to help with all things senior. Recently I called to make an appt with a social worker to help with updating my paperwork. She actually came to my apt last week with updated printed info.
I've done a lot of research but she gave me info and tips I had no idea about-including ways online to get things done legally here and if my case fit the bill without paying for some aspects by using a lawyer (can be expensive in the US). I say this because this was an unexpected bonus re information, and I suspect many hospitals offer similar services.
Nobody gets out of this life alive. So many people won’t address the legal issues surrounding death which, as you say, only makes things worse for the family as the government then gets involved.
My mum had a massive AF stroke,we at first thought of resuscitation but then the doctors explained that even if they could prolong her life she would be fed through a tube etc..which we knew she would have it she was even aware. So My Dad brother and self signed DNR. Even though the 're was a mistake made...in transferring her from Resus to stroke ward..she died in transit with just the porter with her,so we will never know if she passed peacefully,it was the right decision. When my dad died,after breaking his hip.in mysterious circumstances at his nursing home....he told the doctors No more...I've had enough........he had pneumonia . So I have written down my wishes specifically,and also my funeral wishes too.
Thanks Pete. Actually I can do that if it's one correction but sometimes I hit a wrong key and erase my post. I am truly technologically challenged. LOL
You know, many patients seem to choose their moment of death in a small window of time when relatives are not with them. Ask people who have worked with families of dying patients. Often the family will keep watch at the bedside not wanting to leave even to eat. They don't want their loved one to 'die alone'. Yet there have been anecdotal stories written that talk about patients who feel it's time to let go putting off the moment because they feel their family is not ready even if they are.
If they are conscious and able to talk they may encourage everybody to take a break, go get some coffee or eat and when everyone is out of the room the patient dies. Maybe they feel all the sad energy is gone for a few minutes and they choose to leave. I've seen this.
Have you ever been in a hospital cafeteria and heard them page a family to return to the room? I would say no need to feel guilty as maybe we are able to choose a quiet moment to slip away without a lot of fuss. Just my opinion. But I believe there is some merit in this thinking. We may see this as dying alone but they don't. xx
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That was the situation when my mother died, irina. It was the first time since she had been hospitalized and then moved to assisted living that none of the relatives were present. She wasn't feeling well, rang for assistance to get to the bathroom, and then died. I was grateful that someone was there with her. Another one of the many miracles that occurred.
She'd fallen in the grocery store and suffered 2 brain bleeds around 8 weeks before and had spent a few weeks in a nursing home. Her doc told me she'd need to move to assisted living. The ins & outs of that were new to me. First miracle was her financial guy being available immediately to explain everything to me. She'd taken out long-term care insurance, fortunately. Second was finding a fabulous facility only a mile from her home. I dropped by at 9 pm, peeked in the window, and a lovely staffer gave me a full tour. I knew that the "travel wing" would be ideal for her. To help folks find their way, the halls were filled with beautiful posters of travel spots around the world. Travel was something we shared & she loved.
The travel wing turned out to be full, but then the very next day, I got a call about a cancellation. Within a very short time, she moved into her place, I came back across country to take care of business with the intention to return in few weeks. We had a beautiful phone conversation in which she shared how much she loved the place and appreciated everything I'd done to take care of her.
The place was gorgeous. Kind, loving people, lots of activities.
A week after moving in, she died.
It wasn't till much later that I was able to see the beauty of the timing of how things went. There were incredible challenges in dealing with my very difficult brother, which taught me about the wisdom of getting the power-of-attorney for both financial and health care set up well in advance.
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Hi Nella. Clearly someone was thinking outside the box when they created the travel wing. What a concept. Even I could be in a place like that. Thanks for sharing-it's a good vision- constantly being reminded about other places and a chance to send our mind to happier places.
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It was a beautiful place. Felt like a big cruise ship! Beautiful, like a big, cozy home, not institutional. Lovely, kind, compassionate staff. By the time I got it all set up, I wanted to move in myself!
I wonder if this same assisted living model of care also exists in the UK and Australia. Always interesting to learn about our different cultures.
Seniors can move into their own little apartments when still mobile and basically healthy, with access to group dining and many, many activities and different forms of care. There's a dementia wing and nursing care wing that they can move into if/as they decline.
While it was heartbreaking that my mom died when she did, it was a blessing that she did not have to spend years and years in dementia.
That was what happened in my dad’s case. He was dying of cancer. I’d flown in as most of my family lived interstate. He had a hospital bed in the lounge room. We had generally had someone there with him for a few days but it was at the point where I’d gone with my brother and nephew to pick up some dinner, mum was out the back watering the plants, my sister was making a phone call and my sister-in-law was washing dishes in the kitchen. We often say that he was just waiting to be alone.
I just want to make one point in defense of nursing homes. I know there are horror stories BUT... I’ve never worked in one as they are a lot about running on minimal staff to make $. I did work as a state surveyor of long term care for 6 mo. I was shocked at how good the care was. We would just show up in the middle of the night unannounced to watch the care. I literally stood in patient rooms observing staff wiping butts, etc. Much of the unlicensed staff( aides) were at best high school graduates, working their butts off to provide good care to the needy people. I quit as a surveyor as I felt sorry for the staff. The health care business has about regulated themselves out of business!!
Anyway, no rant intended. I wouldnt want to b dependent but would go to a facility if I needed to
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Hi Hoski and I agree. There are good places. Just like many other things-choosing doctors, making other important decisions I believe we have an advantage when we already know where the good people are and don't have rely on making decisions without good solid info.
No offense re rant.LOL You point out a good reason for starting our research early and not waiting until finding the right care is an emergency. xx irina
It comes down to who decides - The state or the individual ? Mostly I think it`s the state. Even if the individual is allowed to decide then they still have all the legal hoops to jump through. Is it right that courts and lawyers decide an individual`s right to die ? Personally I think not. However due process of the law must still be applied.
I think the most important thing is for everyone to make an INFORMED decision about treatment. Often this is not the case.
One thing I would ask is how do you define QOL and where do you draw the line ? Is it subject or objective ? It`s a tough one - legally and morally* Certainly though the patients views should be considered first. I think as well family members should have a strong input - much more so if the patient is elderly or vulnerable.
But who decides all of this ? The law / doctors / patients / family ? It`s impossible to have a 'one size fits all' answer. You can`t apply the same rules to say a dementia patient and a cancer patient.
Best,
Paul
*Legally Bob`s wife could nick his whisky but morally it`s wrong
Hi Paul. First LOL re the whisky and turning off the TV is a little shabby too.
You're right about the decisions being made by the state-UNLESS we have-along with all family or friends involved -have wrapped things up in a legal way that satisfies our countries' (states) laws. One reason for starting early planning-which begins with the person involved telling their families they want to do this- is sometimes legal problems can arise even if the patient is alert and oriented but already in the hospital. Later perhaps someone in the family who decides to disagree can say their loved one was medicated and not able to make competent decisions. Many scenarios can arise when families are fighting legal battles among themselves.
Re defining QOL. I believe everyone who is capable must decide what quality of life is for them alone. We can never know all the small details of what another is willing to live with or without. We may know general wishes; 'I don't want to live on life support' but this is too vague today. There are too many other scenarios that can prolong life and we have to let our families know what they are for us.
Another thing I wasn't prepared for until I began to get older and acquire more health problems is that it can be normal and common for our QOL priorities to change as we age. When we are young and healthy it might be harder to imagine how we want to cope with ailments that stare us in the face later in life. So I would say that as far as possible in our individual situations we should be the ones to create our own definition. You're right about the family having input for elderly or vulnerable people (including children). And in an ideal world everyone would be able to decide this for themselves.
But this is not always possible so we do the best we can with our circumstances. But for people who are mentally and emotionally capable of making these decisions themselves it should be their choice alone. It is their life. Likewise other family members-adult children should also make their own decisions. We shouldn't have to compromise this very important aspect of life-dying- to please anyone else. This is just my opinion. For myself I will do what I can while I still can to keep these choices in my own hands.
I just wanted to also comment on the phrase 'informed consent'. Yes we sign a form that lists every possible complication but doctors don't often have an in depth conversation about this. We have to sometimes ask in depth questions to get the whole answer about our concerns.
When I was on the radiology table last year having a Post Watchman TEE (TOE-UK) I had already signed my forms. But the Indian cardiologist stood next to me before beginning and said he wanted to make sure I could understand possible problems. He went through the list ending with 'and, of course, you could die'. Sounds macabre but he said it so graciously and professionally I laughed and said,'yes, I understand'.
He got an A plus from me for Informed Consent. Thanks for bringing up important points. Take care. irina
Hi Irina - great post and you raise some very interesting points.
I have to go out in 10 minutes but will try and respond to your post in the morning when I have more time.
Just a couple of things for the pot - I`ll try and post in more details tomorrow.
.....I believe everyone who is capable must decide what quality of life is for them alone.....
For sure - however this could change ? A persons view about QOL could be very different in 12 months time - even a few weeks - in some cases a few days.
........I just wanted to also comment on the phrase 'informed consent'. Yes we sign a form that lists every possible complication but doctors don't often have an in depth conversation about this. We have to sometimes ask in depth questions to get the whole answer about our concerns........
I`m with you. To me 'informed consent' means everything is explained fully. A person should know fully about their condition.
However not always ! Let me explain in more detail tomorrow when I have more time. I`m not making a flippant statement there Irena. I truly believe sometimes it`s best not to. Just quickly - I`m in Bulgaria at the moment - for older patients here they are not told (sometimes) about how bad their cancer problem is. They don`t worry as much and tend to live a little longer. This is only done with the families consent.
Whats best ? To have an informed choice or live a few months without knowing ? I also have a personal experience of this in the UK with my mother. It took some doing in the UK dealing with oncologists etc - I can look back 13 years later and know I made the right decision. I didn`t want her to know how bad it was - she never did.
The thread asks very important questions. I will post more tomorrow when I have time to think and answer in more detail.
You make a goodpoint. Before I forget. Until we need to implement it we should consider our Advance Directives a 'work in progress' with updates as needed.
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My QOL is over the day I cannot get myself off the toilet in an upright position!!! Sadly, that day looms closer and closer... need a taller toilet me thinks😉
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LOL Just bring a walker. On BKD's (bad knee days) that's what I do! Or the stand you have for mounting your horse. Hehehe! xx irina
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Oh that would work!! I need to get a walker, good idea🌟
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We have bathroom bars installed in senior living but the walker works best. Doesn't have to be expensive; in fact I have the old metal one (not a fancy rollator thingamajig). The aluminum frame is sturdier, taller and easier to pull myself up from a sitting position esp out of my recliner. 🐱
Paul, I will b interested in your additional reply also. I’m 66 and no advanced directive etc. I always thought when it’s my time, it’s my time. But had not really considered what if my foot is only half way out the door! Very thought provoking.
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You got it. I believe in the 'my time' thinking also.
If it IS my time I don't want some well-meaning control freak pulling me back in. And...
a little humor- I have 2 phrases that when I hear them always provides me with an inner chuckle:
1) (at a funeral viewing) "he look like he's sleeping..." and 2) "she died before her time..."
Everything in the Universe is subject to change and everything is on schedule.
I jokingly told my hubby if I knew I was dying soon, I would love to have a few cold beers and a pack of cigs, lol. I haven’t had a cig since 1982, it would prob kill me🤣
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I don't smoke but I have had very sick patients-who were not going to get any better-request special food/alcohol/cigarettes be allowed and I have never had a doctor disagree. Nor did I. If we are that close to death and these small pleasures help for a few minutes I say go for it.
I had a patient one time (soon after smoking was no longer allowed inside hospitals) who was in his-as it turned out-last week of life. He had lung cancer and heart failure. All he wanted was raw oysters, a cold beer, and a cigarette. His family brought everything in and I took him in a wheelchair outside (in a heavy snow) to have his cigarettes (3).
If that's what he wanted to feel good and enjoy life a little better for a short while then it was my job to do it.
I've heard well-meaning nurses say things to terminal patients like 'it's not good for you to smoke"; 'you should n't eat that-too salty", or (God-forbid) "I don't want you to get addicted with too much pain medicine..." Not my philosophy at all. And almost always doctors would find a way to help the patient enjoy his last days.
I have not eaten fast food for years but a good Burger King Whopper with lots of ketchup with a Guinness and a bunch of (greasy, salty) fries (chips) would do it for me. Oh and something very chocolatey!! 😋 And find a way to have an animal on my bed with me at the end.
I brought my brother's dog into hospice the day he died and Maddie lay next to him. I put his hand on her head. She was very quiet and after he died she sat up , licked his face and went to the door. I learned that day animals need to say goodbye just like people.
For the previous 10 days when he was in ICU and I would go home every night she was frantic, jumping up to see if he was in the car. It was a very stressful time for her. I would get home late from being with him and she was anxious, peed in the house, wandered around at night. The last time she had seen him was when the ambulance came.
After she said goodbye to him in his hospice room she was calm and peaceful again. This hospice in Atlanta believed in having animals be with their family. Very progressive. I wish hospitals had a way to do this-maybe a room- where patients and animals could visit together.
I shouldn't and didn't drink alcohol for a long time with afib. But recently I've loosened up very occasionally with a glass of red wine and a VERY occasional small Guinness. Sort of allowing myself a few more 'small sins' with my stable Afib.
I think it's my nod to maintaining mental health and a little fun in the face of chronic illness. LOL
Hi Paul, in my experience with my mother, I learned how crucial it is to have the power-of-attorney docs for health care and finances signed before a major health crisis. That’s what the docs are called in the state where my mom lived.
What’s most important isn’t so much having every desire of the person clarified in writing, but giving legal authority to a responsible, level-headed, trustworthy person chosen by the patient for decision-making.
I’ll never forget the scene. My mom would slip into blips of dementia and fret about her bills getting paid. I needed to have her sign over financial authority to me so I could do the business of moving her to assisted living. She understood this & agreed.
So at her bedside, we had a lawyer to witness the signing & determine that she was mentally fit to make the decision, along with witnesses nabbed from the hall. The difficult brother was out of town, thank God.
I was so worried that she’s slip into an episode and change her mind or say anything that would give the lawyer pause.
If I hadn’t been able to get that doc signed, it would’ve been a disaster. Medicare would only pay for 2 weeks in the nursing home, so I had to get everything arranged quickly.
I saw firsthand that this authority is needed for just taking care of many basics, like paying bills, along with the medical questions.
I soon encountered 2 more crazy relatives who chose to pick a fight in front of my mother about her care. The doctor fully supported me, thanks to the authority I had.
The moral of the story for me was the importance of setting up the docs with the person who knows you best, whom you really trust, & communicate regularly about what you need and want.
This a topic many don't want to face up to but I prefer to have it sorted. My mum and stepdad died two years ago. He to be recusitated but mum not. They had the forms stuck up on the lounge wall. He had cancer and died at home suffering pain and lack of dignity with my poor mum trying to care as best she could but not nice memories. She went into hospital as soon as she had serious heart failure and was really looked after and pain free surrounded by close family. Now my husband has end of life forms done and wants to be recusitated even though he has been advised against it because his defib is still active. They have not done a form for me but I have a card with final request and talked to the family. They feel at peace with my decisions but worried about dad.
The way I see it is that the more we can do for our loved ones to make it easier to cope, the better. Thankyou for being brave enough to raise this topic.
You're very welcome. I hesitated but happy I did. Things are much different today than even 50 years ago when I started out in nursing. We knew our doctors-some still made house calls. But today the medical world is impersonal for most of us and in the US everyone is afraid of being sued. So we have to take care of ourselves and our families. xx irina
A thought provoking post Irena, one I do a lot of thinking about at times and then do 'nothing'. I'm going to make sure now that my two daughters and all my family and GP know that I don't want to be resuscitated. I did have an official form a few years ago to say this was my wish, but never filled it in.
I guess I've always thought that death isn't close for me as I'm 68, but of course none of us know just when that day will be.
I too don't want to end up in a nursing home and my youngest daughter has said that she will look after me. Think I'd better remind her of that in case she forgets!
In the last few years I have had both my parents (both were in their nineties) in nursing/care homes. My father went into a care home shortly after my mother died when he became unable to take care of himself at home even with care workers regularly in attendance. He was able to go into a care home rather than a nursing home because he did not need constant medical attention. The care home we selected was lovely (paid for by us) great staff with a lovely relaxed feeling, could not have asked for better. My father was a very proud man and hated that he could not look after himself and after a few months he just gave up and went into decline fairly quickly.
Dad had a pacemaker to stop his heart going below 60, in his last 4 weeks he was rarely conscious, he seemed to be in constant turmoil, I do not know if this was mainly pain or brain and body fighting each other. The palliative care nurses gave the maximum pain relief allowed, it was very harrowing to see him in this condition. I wondered if his heart would have given up is he did not have a pacemaker and I asked the palliative nurse this question. She said yes it was very possible, I asked if it could be switched off and I was told no. She also said that few people think about this when they have a pacemaker. If my dad had asked for this before he became so ill it would have been okay. I feel fairly sure that if this had been done he would not have lingered for so long.
I at the moment have to make the choice of having a pace and ablate, what concerns me is that if I became like my dad, could I have the pacemaker switched off. I have only asked one doctor so far and he said no which is what I expected, because switching off a pacemaker which is the only means of your heart beating is going to lead to your death fairly quickly, so it would be illegal. This is a concern for me.
I do dread not being able to look after myself in a reasonable manor and it distresses me to think about some of the scenarios that could arise. I often say to my daughter (half jokingly) I will leave enough money for you to take me abroad and put me to sleep!!!!
Who knows what is ahead for any of us, we all hope that it will be nothing that makes us linger. I do agree that it is important to let our family know our wishes and it is a bit of a minefield.
Wonderful point and one I have plans to include as I have a pacemaker. Thank you. irina
My sister was married and lived in the UK in the 90's and she has only great things to say about how older patients are looked after that american healthcare could learn from.
Care homes are often the answer if it were not for the expense here- almost prohibitive if paying out of pocket. Nursing homes are covered and are big business. xx
I wonder why the doctor said no unless he didn't include your question to mean switching off as part of an Advance Directive. It would be worth clarifying-perhaps with other knowledgeable people up to date on the legal side of palliative care. He is right that another care provider cannot arbitrarily change anything about your pacemaker. It is a process that involves more than one person's opinion. A radiologist for instance cannot turn it off or reset it for an xray without a cardiologist being involved. This is for patient protection.
One doctor's answer is often just one doctor's opinion. I would peel back some layers and get more info.
We have a lot of rights about pacemakers and other 'body additions' that we don't learn about unless we really ask the right people and the right questions. I can refuse many things. There are many radiology tests that staff says are ok to perform with a pacemaker in place or with a pacemaker temporary adjustment. I say No-find another way. Usually this annoys people because it is inconvenient or throws the radiology schedule off or whatever. Not my problem. We are the customer and if we don't like the red dress we don't have to buy it-so to speak. I am very protective about my pacemaker; it has and does work so well, and I don't trust too many people to watch out for its function like I do.
BTW, I am very happy with my Pace and Ablate. No more awful meds and now for me my (permanent) afib is not a daily worry. xx irina
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When my 97 yr old mother became in a vegetative state following a massive stroke, she lingered for a week with no nutrition, hydration etc. The hospice team at the hospital met with me as she needed to be shipped out to a cheaper facility but they didn’t want her dying en route to facility. I met with the powers that be and asked about turning off her pacemaker. They said yes it can b done, just some red tape to go thru. In the mean time, my mom decided to go ahead and die, which I was glad for. I was conflicted about turning off her pacemaker as we had never talked about it. When the docs put it in, no word about these matters.
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I'm happy you were able to do that. It's too bad when when we are lectured about finances when we are going through these experiences.
I was responsible for my brother's health decisions. It was difficult and for a while afterward I second-guessed myself a lot but in the end I'm happy I let him go.
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I really liked ...my mom decided to go ahead and die..." I believe we have more say-so in choosing the moment than we are given credit for. xx irina
I know I have to delve further into this so will do in the near future. I do need to know exactly there I stand. Thanks for the other information irina.
You are so right about 'mine field'. I worry about my husband because his defib can give multiple shocks without re starting the heart effectively. The paramedics would not give cpr but to have his defib deactivated he has to agree , by law, but won't. He really believes it won't happen but all medics believe it is inevitable. So hard!
Hi Cassie. I was re-reading posts and saw your comment about going abroad which I missed before.
I saw an article sometime ago about a man(I believe from Australia)who did this very thing. He flew to Switzerland where assisted dying(correct terminology?) is legal. I'm sure there has to be a lot of planning but in the back of my mind it has been a sort of vague 'last resort' plan. At times I'm not sure I could do this but I have always kept my passport current and I have enough $$$ put aside to make the trip (first class-might as well be comfortable.)
I would have to be in an untenable position here to do this but we never know how things will go with others involved in these decisions. I don't think death is as scary as having a miserable, possibly long, drawn-out pre-death experience.
My Italian son-in-law's half brother was diagnosed with a particularly aggressive form of motor neurone disease (ALS) about five years ago. He deteriorated very quickly and my daughter and son-in-law went to visit him in Italy, about a three-hour drive from the Dignitas clinic in Switzerland. He spoke at length to my son-in-law and his own son about ending his life there and they told him that if this was what he wanted to do, they would support him all the way. It transpired he was afraid of being an intolerable burden at home with his wife and son, and he was reassured he was greatly loved and that this was not the case. His wife and the carers at home only managed a few weeks after that and he was transferred to a clinic where he died a some weeks after that.
However, my cousin in Canada, after suffering from ALS for about 4 years, took his own life whilst he still could without incriminating his family. Afterwards, his sister started a petition for assisted dying in Canada.
Hi irene. Those are terrible illnesses for a family to go through. ALS is a terrible disease to suffer through. And I'm sorry your family has had to deal with them. I had a friend here at Senior Living who died from this last year.
I'm not sure how I would handle something like this and I've thought about it with no clear cut answers. I was raised Catholic and the Church's teachings are very cut and dried about suicide being a "terrible sin...." When I was younger I just accepted their teachings on so many things without thinking them through. Not so much now.
But I've learned that most situations in life are not so clear and there can be many shades of grey involved with life and death decisions.
I honestly don't know what I would do if I were ever so uncomfortable that life became intolerable. It's easy for healthy people to support religious teachings especially when they are not involved. But in the end we have to do the best we can. And I believe that many religious teachings while soundly based on what humans believe God wants can pose difficult questions when they hit close to home And the compassion factor is often left out of many doctrines man has interpreted..
We are human and have to decide how much we can take when bad situations come our way. I will never say never and believe that God has more love and compassion for us than many of His 'self-appointed middlemen' here on earth. Just my feelings and thoughts.
It's easy to say one thing when we are not facing terrible choices. But a different thing altogether when we are.
Thank you for the information about what is happening in Canada. Take care xx irina
Yes, that's him. Just clicked on your link which contained info I have filed away. It seems Exit International has thought of every detail. I was impressed they flew out to accompany him to Switzerland and started a GOFUNDME page to help make his trip more comfortable.
I would be interested to know how people responded when they read about him in the news. I think he was brave to make this decision for himself. I would guess he had to buck many people and systems to accomplish his goal.
The reaction was quite polarized as you would expect but I most people supported his right to make that decision. Currently here the government is looking at voluntary assisted dying laws.
Gosh, where to start. At the moment, personally? I am much too young to die (fooling myself I know) - without hesitation, resuscitate. My 95 year-old neighbour, when asked in the nursing home after a major stroke, said, without hesitation, resuscitate. My daughter's mother-in-law has said, as a very fit 75 year-old, definitely DNR. My mother had DNR in her medical records by her side in her flat.
Am I a coward? Since I reached my 60s my own mortality has increasingly come into my thoughts. But you have raised lots of questions in my mind - if I am THIS bad DNR but if there is a chance, hell yes, go for it. If I were to be asked right now I would want to make a completely informed decision.
In 1997, my 76 year-old mother-in-law had terminal cancer and was admitted to hospital. Without any reference to us she was put on the now discredited Liverpool Pathway (withdrawal of treatment and fluids) and to this day it gives us nightmares. I asked her if she was thirsty and she desperately nodded and gulped down two cartons of juice that we gave her. I was roundly chastised by the medical staff and told that I could cause her to 'fill up with fluid'.
When my mother was in hospital early in her final couple of months last year I thought she sounded chesty. I mentioned it to the consultant (who was quite cold about it) who asked me that if she did have a chest infection did we want it treated. I was appalled. At the time my mother was cheerful, completely lucid and happy that she was being taken care of. Right then, had she had a chest infection, to deny her treatment would have been signing a swift death sentence. When I read through her DNR notes, it touched upon poor prognosis should she be resuscitated due to her frailty but didn't talk about withdrawal of drugs.
I don't have enough medical knowledge but it is obviously something I need be more aware of.
You don't need the medical knowledge. I think the key is knowing ourselves well enough to know what we will and won't put up with. An example
: If I were no longer independent-could not do for myself-feed, clothe, bathe, etc it would be a great trial to have someone doing these things for me. My sister on the other hand enjoys being taken care of- a small distinction but may make a difference in some of our choices.
There is an imponderable in this discussion. In life no matter how well we plan there will always be an occasion when control is taken away from us. Then we have to accept that this decision is out of our hands.
In the end our death really is out of our control. Sometimes we are lucky and get the death we want, sometimes we have to take what comes. I don't think you are a coward- just processing the best way to handle things for yourself. xx irina
I tell myself if I ever had to be totally dependent then maybe there are still lessons for me to learn here. I am so independent and dread even being in the hospital with other nurses telling me what to do.
One thing that I've notice personally here (US) is that because of just about anyone being allowed to own a gun (another story for another day!) and the resulting unexpected mass shootings many younger people are looking at getting their own directives in place. It's so commonplace that many shootings involving a few victims don't ever make international news and often aren't considered newsworthy enough to make the front page over here.
It's unsettling here because no one knows where the next mass tragedy will occur. I know I try to always be aware of my surroundings no matter where I am-restaurant, store, supermarket- and try to pick up if anyone looks or acts odd, strange, fidgety or whatever.
It's common for 'ordinary' people to make provocative, uncalled for statements in public to others nearby if they are heard to be speaking in any other language besides english. This could be in Walmart, Starbucks-anywhere. Some ignorant person will say "You need to go back to where you came from" or some similar aggressive, hurtful comment. I think others would like to stand up for the victim but the thing is no one knows if this crazy person has a gun in their purse. And the odds are good they might.
The truth is unless you're an American Indian here you are an immigrant and very likely are only a 2nd or 3rd generation 'born here' citizen. (Can't wait for the 2020 elections but I'm not hopeful.)
Shooters just come out of the blue and it's become uncomfortable but necessary here to be always so hypervigilant. A new form of chronic, under-the-radar stress. Not a good way to have to live.
Thank you for this. It gives me an insight into my mother's behaviour. All her life we never saw her unclothed, she would turn her back undressing even in front of my father. But she wasn't a prude; I think modest somewhat describes her. So when she had carers, life changed, having others to help her wash, dress, apply ointments and so on. And then the unthinkable. A male carer arrived. And do you know what? He showered and dried her, and 'was very gentle'. But, when Mum told me, she said, 'of course he is a married man' - that was ok by her then!!!
But key here is the fact that she had resisted and dreaded carers. My younger sister devoted herself to taking care of her until a package was set up. And, to our amazement, when the carers came, they became like a second family. With the exception of just one or two, all were unfailingly kind and shared their own lives and troubles with my mother. She got to know each and every one and in her shrinking world they became a highlight in her day. She would tell us all about them and positively thrived being their confidant.
So who knows? If push came to shove, it may be a scenario that you or I might be quite happy with. xxx
That'a beautiful story. And sometimes I feel like my aversion to being cared for is because it's a life lesson I am meant to learn one day. I thought about my own reasons and I don't think they are related to anything physical but rather thinking that needing care would mean my mind is not finctioning well or else I would be able to figure out how to care for myself.
My mother always meant well and did her best but as we all do she had her own baggage.
She frequently reinforced this thought: "You're not the prettiest or the ugliest but you have a good brain..No one can take that away from you." My brain is my worth??
This may not be very helpful. But, I've been thinking along similar lines to you.
Especially since a doctor in my surgery put me through an unnecessary Heart Cancer investigation last year. She even forgot to fast track the CT & MRI so it was very slow and caused me a lot of anxiety until I went straight to the surgeons office, result in 24hrs. I had by then arranged our wills and joined Dignitas. I don't want to cause excessive stress to a loved one. That episode could have caused the trigger for the PAF.
I'm optimistic of reaching 100yrs and going out during an excessive gym session or a game of Golf climbing the big hill before the Par3 where I Go-Out-on a hole-in-one.
Read today: that Ian Cognito died at The Attic Bar at Bicester, after telling a Heart Attack joke. Audience thought it was part of the act for nearly 10 minutes.
Saying that, I will view your solution with interest.
I often imagine life in a care home. Am guessing I would ask every passing stranger for the toilet just in case!
Several people have mentioned how wishes may change also QOL is different things to different folk. My fear would be not being able to express my needs and feelings.
Yes to DNR especially knowing the abysmal success rates. No to prolonging life by ventilator UNLESS to give family time to arrive and say goodbye ( that would be for them not me) No to treating with antibiotics (though the way resistance is increasing they won't be an option soon) UNLESS for QOL. (example, smelly anaerobic infection that makes visiting awful for my friends/family)
Big yes for communication even if not a legal statement, write a letter. This can be scanned into your notes if given to GP/ hospital and copies to family.
When we are fairly fit and healthy (even with PAF) we say things like if I can’t wipe my own bottom or if I have to have carers then I’d rather be dead. But when they get to that point people often decide, no I’d rather stay a bit longer. I plan to install one of these Japanese toilets that wash and dry you even if it costs a lot. A friend that was on her own and very ill, organised her own carers which kept her in control of her life. I am a firm believer in ageing in place. Thinking ahead and finding “what if” solutions for yourself is what I am doing at the moment as I’m having some house renovations done.
But, There is a big difference between not being able to do things for yourself and end of life decisions and we need to consider them separately.
Good morning Snowcat. I just took a moment to look up Five Wishes as I had never heard of this. I briefly read the information on their home page and plan to go back later today and order. It is not expensive at all.
For those in the US it is worth looking up and considering if it might help you. The site is fivewishes.org. and states...it is an"easy-to-use legal advance directive document written in everyday language..." for putting together a legally binding document containing your wishes. It can be ordered in almost every language.
Also it stated it is legally binding in almost every state on it's own and the other states also accept it but require some extra supporting documentation. I pushed a button, pulled up Georgia and found it is legal here on it's own.
Definitely worth a look. Also I would assume other countries may have similar easy to use documents that may save us expensive legal fees. Maybe if anyone has info they can post. Maybe start a new thread so the info would be easier to search.
This info seems so helpful and easy to use. Thank you so much, Snowcatdaddy. irina 👍
I have an advanced directive. My mom did also. When hospitalized, her wishes were ignored. She was 94, all were aware of her wishes. In doing against her wishes, she did live for additional 2 years. Her quality of life was terrible. Upon leaving hospital she could no longer walk and had great difficulty feeding herself. She went from an assisted living facility where she was fairly independent, to being bedridden in a nursing home. All the while I reminded hospital staff that the extra measures were prohibited by her A.D. they ignored me saying "Oh but she is your mother " I answered her A.D. had been written 15 years prior and these were her wishes. They just continued to treat her as if she had none.
I am 74,Asthmatic,AF,Type2 diabetes,Osteoporosis,Osteoarthritis,Adrenal deficiency,Chronic Obstructive Airway Disease, and a couple more. In 2014 I had my first case of Appendicitis and because of adhesions from previous abdominal operations I had to be treated by antibiotics, the Consultant asked me if I knew about DNR, I said I did but he proceeded to to read through "the script" as I now call it. only live a couple of hours, the horrors of CPR with my chest problems and bone problems etc. so DNR was put on my hospital notes. I have been back in hospital with appendicitis three times and in for pneumonia three times. Each time I have been read the DNR notice and then it goes in my hospital notes. The last time being April 2018. When I asked my GP about a DNR plan he was horrified and said there was no need for it! I'm still here, though I am going through another chest infection hoping it doesnt turn into pneumonia again. I am on antibiotics so hope not.
Though I know it was a necessary term I always thought the actual wording "Do not resuscitate" was kind of gruesome. There is a newer term-among others- that is being used more and more at my hospital. And I suppose at many others as it is a bonafide medicalterm with a legal definition. An order is written for "AND"-allow natural death. It's much more positive sounding, IMO, and doesn't make death sound like such an enemy.
Those are many of my diagnoses also. Many of which for me are more difficult to live with daily than my Afib is now.
For me sometimes the day to day aches and pain from arthritis can be more wearing than previous scary moments during my early AF days.
I find myself sometimes saying "I'm so tired," This upsets my sister who is also in healthcare. She said one day "Please don't say that. It's what older people who seem to be slowly letting go of the things of this world say". I had forgotten this but it's true-even healthy seniors, I believe, start letting go of things they previously enjoyed in slow subtle ways-no longer interested in a favorite tv show, eating less, etc. I see this as sometimes they just know their time here is becoming shorter and they are winding down their attachments. Just my opinion but I think there is something to this. When they frequently say they are tired, it doesn't mean right now but rather they are getting ready to move on.
That is so how I feel, after being told so many times in A&E that I only have so many hours to live if I dont take this or that treatment, then to come home and feel cheated. I do so get very tired even trying small tasks. Thank you for your post. I now know I am not alone.
I read your thread with great interest and wondered if you had ever read Atul Gwande - Being Mortal: and what happens in the end? atulgawande.com/about/
In this book he gives a perfect example of what you are talking about - an elderly gentleman with stomach cancer is told that he ‘should’ have a PEG - which means of course he will not be able to eat. The cancer is terminal so he is then asked - What would a good day look and feel like for you now? - A day when I can eat an ice-cream - he replies.
The intervention wasn’t going to extend his life and it would deprive him of his one pleasure in life so his choice was to continue to eat ice-cream.
Hi CD Yes I accidentally discovered him (Dr Atul Gwande) late last year. I have wanted to get his book "Being Mortal: Medicine and What Matters in the End" (2014) as it sums up so many ideas we've talked about here and addresses the medical elephant in the room about doctors knowing a lot about saving lives at all costs but not a lot about helping patients have a positive death and dying experience.
There is an excellent, short article anyone interested can read by typing in the google search box "What doctors don't know about death and dying." Dr Gwande published this on October 31 2014. Quick and easy to read and sums up what he has to say on this subject.
Worth a quick read as an intro to him..
He (Atul Gwande MD) has also done some TED talks on youtube and is a writer for the New Yorker. He also has quite a few youtube videos-some only minutes long that is a good place to start learning what he has to say. (I just jumped ahead and saw irene75359's post below about the same book.) I had forgotten about it but now want to order it.
I am looking in wonder at your post. Irina's post raised so many things in my mind that only a few hours ago I had a long chat with my younger sister about our mother's death last October. She said there is a book I am reading - 'Being Mortal' and texted me the details. Definitely on my list.
CD Thank you for posting this video. And I would encourage anyone interested enough to be reading this post to pause NOW and watch this video before continuing. irina
You are correct in specifying exactly what you want. Dealing with a dying loved one is difficult in itself but if you have the power to make it easy for your family,then by all means do it.
My family is very clear on what I want. The formal paper one fills out in the state of Texas is difficult and not easy to read. I have written everything down from dying, cremation, desired music, and services.
I was speaking with my husband the other day and asked him his wishes and he said he hadn't really thought about it. I said you better because someone else will be making that decision for you.
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Something I've learned on my journey re: "dismissal by docs"
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