I’ve been asked several times now about my thoughts of the assisted dying bill which was debated so eloquently in the commons recently
I am clear in my response to it
I am against it
And I will tell you for why
Dying is a normal progress, but it can illicit difficult symptoms which can be a challenge to live with.
Good and proper palliative care can rectify most if not all of these symptoms, but this care is at best patchy and at worst non existent so it a lottery for many that they receive prudent end of life care.
The government needs to fund hospice care properly for this to start to happen.
Everyone should have access to the hospices’ ability to control pain, and breathlessness, delirium and agitation and fear and anxiety
And that has to be done before we enter into the minefield of giving end of life patients medication they have to take themselves
The paralysed, the Motor neurone, the CVA patients , who it could be argued all need this bill passing more than anyone else , will at the moment never “ benefit” from it so let’s bench mark care to a good standard universally before we set a standard for those who’ve had enough
A very good response. When I found out that Hospices are not completely Government funded I was horrified. It really is a lottery as to whether you can get this when you need it.
ReplyDeleteYes Sue
DeleteHow on earth hospices ended up outside the orbit of the NHS is a puzzle to me. They do such vital, important work as the end of life approaches. My younger brother Simon died two years ago in Dove House Hospice in Hull. The people there were marvellous. But why should hospices have to fight for funding? It's so wrong.
ReplyDeleteEach hospice can set how much they are paying their staff, there is no bench marking
DeleteMy mother and other family members were on hospice. The hospice people were wonderful and gave their patients/my loved ones superb care and respect. I don’t know if hospices here in the U.S. get any government funding. As I recall mom’s Insurance covered her costs.
ReplyDeleteIt is horrifying. I am shocked we have come to this, but not surprised. It feels like we were just beginning to orbit around good palliative care only to be torn away and thrown into assisted suicide (which is what it is at it’s rosiest), euthanasia and, quite frankly, a cull. Still. It’ll save the government a quid or two. Wars don’t fund themselves you know.
ReplyDeleteWell said and your words are based on excellent, experienced common sense. Don't exclude by wording those who might most need an exit option. How pinheaded of those politicians.
ReplyDeleteHugs!
I understand your feelings on it, but I also understand that some people who are dying feel very differently on it. I guess I would side with their choice in their situation as long as I could be assured that it was their choice.
ReplyDeleteIn many ways I agree with you, but my choice has been clouded by my own work
DeleteI think, in the end, we should respect the choice of the dying person. My ex father in law died today. He died on his own terms. I would never begrudge him his choices. He was in his 80s and strong willed.
DeleteWhat about those of us who don't want to have hospice care? I'm not interested in lingering while someone controls my pain. If you are that ill, the end is inevitable, why hang around? If you want hospice care that should be your choice. It should also be a choice to be handed appropriate drugs that will let you not have to go through that if you don't want to. This is all about choice and the fact that for those of us who don't want to go through the system until the bitter painful end the only choice currently is to gamble on trying to kill ourselves.
ReplyDeleteJane , I understand your point of view
DeleteWhile I agree that hospice care needs to be expanded, I think Medical assistance in dying gives back control to people who have lost all control of their lives. I have had a number of patients (stage 4 bowel cancer, stage 4 lymphoma, ALS, to name a few) who have used it and I fulled supported their decision. It's not my place to decide how or when people die. As for myself, if I am unremitting pain, or the end is near, or if I have dementia, I will avail myself of it.
ReplyDeleteThe British bill will not support ALS sufferers as their life expectancy is usually not guessable
DeletePixie, I can see me fighting for such a bill in the future
DeleteThe people with the worst outcome, ALS patients, are being denied? That is fucked up.
DeleteThanks for your enlightened perspective on this. Personally, I feel that this has been dumped onto MPs without any real discussion of the many repercussions, and without any real examination of how such legislation has worked out in other countries. I don't think that there has been enough time for discussion and reflection, and I am not hopeful that the committee stages will address many of the issues.
ReplyDeleteI am baffled at the role of the judge
DeleteWhat are they going to check on ? Capacity ?
I respect your view but disagree. We interfere with other normal processes to prolong life and I fervently hope that when my time comes and I have had enough I can make a peaceful exit at a time of my choosing.
ReplyDeleteI understand that and I hope you get what you want at the time
DeleteI agree, and disagree with you, John. I agree that good, effective palliative care should be available to all. That it is a lottery whether someone gets it is a national disgrace. And why hospice care is basically charity funded and not under the aegis of the NHS, I find amazing.
ReplyDeleteI disagree, in that I do feel that the choice of how and when to die should be made by the individual. What one person finds intolerable, another may find acceptable. We are all different. What I do find difficult is the question of consent. If someone doesn't have capacity, that choice isn't there anyway. It's certainly a thorny problem, and none of it is black or white. I do know, that if I was ever in that position, I would like the choice - good palliative care or assisted dying. Which choice I would make, I don't know. xx
Nicely put. I don’t disagree with assisted dying I just think palliative care should be better and open to all FIRST
DeleteI want to end myself before I wear a nappy
ReplyDeleteLee
Only you
DeletePeople who are incapacitated and incontinent are suffering enough without someone calling their incontinence pad a nappy. Shame on you.
DeleteMy mom was the most beautifully groomed woman I've ever met. Then she had to have her diaper changed after her stroke. I told my brothers if Mom could have gotten up out of that hospital bed, she would have strangled us all. Lee's word choice aside, it is sometimes the little things that push us over the edge.
DeleteI agree with everything you say about hospices and palliative care, but I also feel that people have become disassociated from death in our midst. Our tiny nuclear families no longer have aged relatives nodding away in their chairs, as I saw in my childhood. If my pain can be managed then I want to hang on for every single day I can.
ReplyDeleteThis is an important point my friend and one I totally agree with. Death has been removed from our everyday lives, we have become sanitized and frightened by it.
DeleteMist of my job is to prepare relatives for the normality of death. The frightening symptoms can be dealt with very quick by good medical and nursing care
I think you are too young to have the right perspective. I think when you get to a certain age and have had enough, you should have control of your end of life decisions. In Canada you don’t have to take the medication yourself, it is injected into your iv. But you must be able to consent right before. My husband was ok’d for MAID but the ok came to late and he died a day before. Gigi
ReplyDeleteIf you have capacity Gigi, then I agree in principle but only after you have received the best end of life care for symptom control .
DeleteSo many older people do lack the capacity to make an informed decision, especially if a clinical depression is present
We have awful care for older people here. I refuse to go to a care home and would rather die. Period. Gigi
ReplyDeleteI think I agree gigi
DeleteI don't think it has to be either/or, though. Of course I support making sure everyone has access to adequate palliative or hospice care. But for those who want out, they should have the option to choose that path, with professional guidance to make it as comfortable as possible.
ReplyDeleteSteve,your stance is close to mine
DeleteProper END OF LIFE care is nowhere where it should. Be
My thoughts on end of life care changed dramatically as I sat helpless while my mother lived on for two years after breaking her hip. At first, she was provided with PT, speech therapy and other efforts to improve her. Due to a quirk in the US Medicare system, though, if you are not making measurable progress, all those programs are denied to you. She worsened slowly, and eventually was put into the hospice program (a blessing). The problem is that our medical knowledge was used as a weapon against her. She would get a hard case of the flu, and we would be certain she would not survive it. But due to the wonder of medications, even in hospice care, she would recover, only to be left with a life eating ground up food, unable to speak, unable to shift her own position in the bed...awful. Nobody should be held in that condition endlessly, and I will do whatever I need to do to get myself out of the system before it's too late (not in my near future).
ReplyDeleteNina
I have no good answer Nina
DeleteI’m so sorry this happened
Bravo, well said.
ReplyDeleteThere are so many ways to go on this
DeleteI hope I figure all this out before it’s too late. If I knew I’d have care givers like you John, I would probably feel differently, but right now I don’t want to live the way my mother spent her last years/months/days. It’s all too horrible to contemplate.
ReplyDeleteIn many ways there’s no right or wrong answer
DeleteElicit
ReplyDeleteHuh?
Deletethird paragraph, illicit or elicit -two words that sound the same, and have different meanings (there is a word for that.)
DeleteIf pronounced correctly they do not sound the same.
DeleteIn the US most if not all people have access to hospice through a combination of Medicare and private health insurance.
ReplyDeleteI agree entirely that nobody should experience great pain. Medical science can prevent it, and everybody should have access.
Several US states permit their residents to choose to die. You have to be a state resident to go that route. I have known one couple that choose to move to VT to end the life of a spouse dying of prostate cancer when no further treatments were available.
Why not have both good hospice care and end of life choice? My mother suffered while we fought to have the drugs she had already been prescribed actually administered. It was terrible. VAD for me or suicide if I have something they won't let me. I'm not suffering like she did.
ReplyDeleteWhen my Dad discovered he had terminal lung cancer, he was given six weeks to live. He held on for nearly six months to take care of unfinished business. He died the day after he was told the problem was resolved.
ReplyDeleteHe wanted to die. As he put it, if the dog had cancer and was in pain, we'd put him to sleep. People would be calling us names if we forced him to live.
He didn't want to die in hospital and checked himself out of respite care after 36 hours (his roommate died and Dad couldn't go into the shared room because the family was sitting with the body) and took a taxi home.
His GP arranged for a Palliative nurse to be at the house by this time time was so frail, he wasn't expected to last the week.
Pain management wasn't great, they were adjusting his doses right up until four hours before he died.
He died five hours after I got home and 20 minutes after my brother got in from work.
To this day, I'm sure the Palliative Nurse gave him the nudge he needed and I'm thankful. He was 70lbs and a shell.
Finally he was free.
A professor told me many years ago, there is fine line between how much morphine kills the pain, and how much morphine kills the patient.
DeleteMy uncle went into hospice care in the hospital at his own choice due to ongoing heart issues and pneumonia. The staff was both matter of fact and very kind. When I went to sit with him, he was aware I was there, but was medicated so that he couldn’t respond. I told him he was in the puffiest bed I’d ever seen. As if he was going off on a cloud. I still get teary eyed that my last memories of him were nestled in that cozy spot. I’m grateful, yet greatly grieved by some of the stories shared above. My thoughts of solace are with you all.
ReplyDeleteBonnie in Minneapolis
No simple answer to this for me. Good hospice care for everyone is definitely needed but also I agree that there are people who should be allowed to "choose" their end. I have seen a little of both sides and feel conflicted.
ReplyDeleteI agree with you 100%, you have said everything that I believe. We need more money for the hospices, end of life and palliative care, not a system of jumping through hoops for the last six months of those who qualify for assisted suicide. Well said John, love your blog; it is the first thing I read with my morning cup of tea. Lesley
ReplyDeleteI can see both sides but by the time my husband died (at home his wish) he was unable to communicate so no one knew how much pain he was in or anything he was just plied with drugs that he may not of wanted. I always think of this, we have our pets put to sleep so they don’t suffer too much so why don’t we give our loved ones the same choice. The only part of my husbands death that was his choice was being at home with his family. I will say the two times he went into our local hospice his care was fantastic but I can see where the two things can co exist. Heather
ReplyDeleteI agree completely that proper care should be available to all regardless of income level. It’s astounding that hospice care is not available to all in the UK. But, I can’t speak for others who I think have a right to make their own decisions about end of life. I think both should be available.
ReplyDeleteThere aren't enough hospices in the UK and the few we do have are full to capacity. There won't ever be enough due to lack of funding and an increasing population. There has to be assisted dying for those who choose it. What we have now is inhumane.
ReplyDeleteI think some form of assisted dying would be beneficial to alleviate the pain that the patient is going through. But I fear that it is a slippery slope and some unscrupulous relatives will be quick to dispatch someone into the next world, especially when there is a large inheritance at stake.
ReplyDeleteSome years ago I saw a video from Dignitas. A patient had requested to be take there. His family accompanied him and watched him die. He knew that his illness was terminal. The camera filmed right up to the moment of him passing. It was a dignified end but it's sad that they had to travel that distance.
My conclusion, the law should not be involved when anyone is approaching the end of their life. With one exception, if after the passing there is evidence of manslaughter.
I watched my mom die in hospice. She had had a stroke and lingered for 10 days. Her worst nightmare. I don't pretend to understand the legal aspects of it but I agree w/so many others; it should be a choice, hospice or your choosing to end your time. The health care system here in the U.S. is so dreadful, though. My mom was blessed w/resources and insurance and everything else; away to watch her die slowly, even though she had the best of all care. I guess we all have different perspectives on this, depending on what we do and who we've watched leave this world.
ReplyDeleteThis is a very important conversation to have and you have done well in starting this one.
ReplyDeleteI miss Pat every morning and would have loved to read her thoughts on this.
ReplyDeleteJohn, this is such a dicey subject for most people. We all want to be able to choose how we exit this plane of existence, and sadly, it's almost never the case. I did read about a woman who had to deal with the awful long and strung out, horror-filled sicknesses and deaths of both her parents and some other family members. She decided that she simply would not leave the end of her life in anyone's hands, and picked an age at which she would check out. Once she reached that age, she wrote letters to all whom she loved, she sold her home and all of her things, rehomed her animals, and then took her own life. She told everyone in her letters that while they may not have agreed with what she did, it wasn't theirs to decide. It was hers. She left while she had her wits about her, on her terms, rather than in a diaper on a bed in a shitty nursing home. I say bravo to her! That's my plan as well.
ReplyDeleteAs 10 of my Palliative Care team lose their jobs including me ! All so committed to giving good Palliative Care I agree with you John .Wrong time for this . We need more funding to give more and good quality care . Two of my patients were given 6 months to live 2 years ago ! I fear Assisted dying could become a choice because of fear and poor care . Love your blog John don’t ever give it up x Bernie
ReplyDeleteI read the piece by Liz Carr and found her accounting of friends' having DNR added to their charts without their consent horrifying.
ReplyDeleteI thought about you John, when the bill was being debated (I thought in a very respectful way by all concerned) in the House of Parliament. Thank you for a considered response.
ReplyDeleteI always thought that I would elect to have assisted dying for myself....until I walked beside my husband as he struggled for 22 months with prostate cancer, in pain and distress, it was truly horrific but he held on ferociously for every second of life he could. I now understand that I don't have a clue what I would want to do...until my time comes. I don't believe at this stage I have any idea how much I would or would not want to cling to life.
ReplyDeleteA thought provoking post John. Sigh...