My husband just threw a suitcase into the truck and is headed off to his mother's bedside. Last evening she suffered a mild heart attack, her younger son with whom she lives took her to hospital, in the emergency room she went into cardiac arrest and was resuscitated twice. She then had another heart attack and is now in the ICU with four intravenous needles stuck into her.
My first impulse when my BIL phoned me with this news last night was rage, rage that this fragile ninety year old lady with many problems coping with daily life had been subjected to such drastic medical procedures. Since I was not there and therefore do not know the exact circumstances, I have talked myself down. Her family members who were there did their best, I am sure, to decide things under emergency conditions. But I am left feeling very sad for her and worrying a lot over what will happen to her now.
I have thought more than once that we treat our animals better than we treat our old and terminally ill. A friend's nephew died last week from colon cancer, died slowly and in agony when the morphine that was being administered failed to control his pain. My mother was extremely fragile both mentally and physically in the last year of her life but when she started to bleed from the bowel my father and I authorized surgery that was successful in the short term but neither brought her comfort nor prolonged her life. Looking back, I see that it was not necessary to subject her to all that. It frightened her and hurt her. When the family dog suffered from a similar problem in her extreme old age we had her quietly and mercifully put to sleep and euthanized.
As a society, we do not deal well with extreme debility and death. As individuals, I believe, we put off thinking about the extremely emotional and divisive issues surrounding mortal illnesses. It seems to be easier for people to let things slide until their loved ones are in terrible pain or fear. By the time the crisis hits, I strongly believe, it is too late to manage it rationally. We go into crisis mode, we deal with things piecemeal, and we screw up. I did, for my mother. I also had to deal with the final illness and death of two of my childless aunts, and by the time I got to my aunt Marion, who had terminal cancer at age 79 and was afflicted with dementia as well, I had learned enough to manage things so that she died peacefully, early enough to prevent the worst ravages of her illnesses. I had learned!
One of the things I learned is that it is essential to speak to the medical people ahead of time, to have the paperwork (in Ontario, a Power of Attorney for Personal Care and a signed Do Not Resuscitate (DNR) order) in place. You need the names of all of the contact people -- for home care, placement in nursing care, specialist doctors -- on file and it is best to discuss with them what they can provide specifically for the person you are in charge of. I did research on nursing homes and, and this is vital, found one where staff members understood what I wanted for my aunt and were prepared to work with me. Other things that are useful to know include what drug regimes are available and what are their side effects. But, first and last, you need to know what you want done. And not done. When they come in with the cart and the paddles you need to know what the person would want and what you are going to do.
I so wish that we could have options for people who are dying in pain. As long as our doctors are subject to criminal procedures if they help, as long as relatives who help are prosecuted and sent to jail, as long as the drugs and regimes that would help are hard to find and expensive, as long as nursing homes are poorly funded and understaffed, we will continue to fail our loved ones when they need us the most. And as long as we as a society fail to address these problems rationally and with respect for differing points of view, we are contributing to the failure. It's a hard thing even to discuss, but it needs to be done.
There's a weird cartoon here with quite an interesting discussion on the topic. You want an euthanasia teeshirt? Look here. There's so much internet debate and info, that I'm not even going to try to filter it. I do however draw your attention to this statement, from the Ethics Committee of the College of Family Physicians of Canada. It says in part (paraphrased) that your loved ones may tolerate the seemingly intolerable if they know you love them. Other parts of it make better reading. I am not about to lead a crusade, but I wonder sometimes if I should.
May 8 update: MIL has survived all the nonsense with no cognitive damage. In fact, JG says she is 'cranky' , an adjective which speaks well of her state of health. If she has enough energy to crank over monitors, IV's and catheters, she'll make it.
You bring home, quite powerfully, the need for living wills. When my MIL died, we all wanted what was best for her but we all had different opinions and none of us knew what her wishes were. Would we have handled things differently if we knew? Would she have changed her mind about the terms of a living will once she was put in the crisis of palleative care? Who knows?
ReplyDeleteLiving wills and advanced medical directives are soooo important.
ReplyDeleteSeveral years ago, my grandfather (who was in advanced stages of alzheimers) needed a defibrilator placed to keep him alive after a series of small heart attacks. My aunt, who had power of attorney, spoke with all her brothers and her sister and they all decided Gramps would not have wanted the procedure or to prolong his life under the circumstances. He died within a few days. That was such a hard decision for his children to make and it could have been easier if he'd left instructions about his wishes.
Of course, my aunts and uncles and my mother took an incredible amount of grief from other relatives. They were appalled that they didn't do everything they could to keep him alive. I even heard snarky comments at the funeral. If one of Gramps' sisters had had power of attorney, who knows what additional hell he would have been put through.
Great post and you've really made me think.
How nice to come here after so many days away and find that you are discussing such an important issue. SO important.
ReplyDeleteI have a great interest in bioethics and the ethics community right now is really trying to put the word out on advanced directives. It didn't really hit home for me until my grandmother died a few years ago and I realised that she was the last of her generation. That my generation would be the next one responsible for making the end-of-life decisions for my parents and their relatives.
I heard one person on the radio a while ago who nailed it for me. He said, everyone tells you to choose as your decision maker the person who you think would make the decision that would best reflect your choice. That's part of it. But the other part of it is that you should choose the person at whose mercy you would be willing to be, should they make the wrong decision. I thought that was fascinating, compelling and true.
Thorny and sad issues, these.
ReplyDeleteI wish it were not so difficult bureaucratically to make our wishes known in this most important area.
My 92-year-old grandmother stayed home alone for 24 hours with active appendicitis, because she was ready to die and did not have faith that should she go to the hospital, her wishes would be respected. I cringe every time I think of the pain she must have been in.
Her efforts failed, because finally the pain got the better of her. She lived for over a week in the hospital, an outcome she detested.
Yes, the 'living will' is important. But most important is the person who works for the implementation of those wishes once you are in the soup. I have been to this well too many times. Choose a strong person or a person who will be strong for you.
ReplyDeleteStill waiting to hear about the MIL. Jumping around like a cat on hot bricks. Writing the blog today was invaluable. Thank you for reading and commenting.
I have never understood why it is the kind and humane thing to do to put our beloved animals to sleep when they are facing a painful, fatal illness, and yet when our beloved family members are facing the same thing, they must be put through everything medical science has to keep them living, despite the pain and hopelesness.
ReplyDeleteI understand that when we as a society try to face euthenasia as a possibility, it gets all complicated by who gets to say what, and where the line is drawn, but I still think that a society that purports to be civilized should be able to come up with some compromise.
Sorry you have to go through this, again.
So true. We really do treat animals and humans differently.
ReplyDeleteSorry you are going through this. Again.