The hospice acronym for someone who is actively dying is EOL
END OF LIFE
It signifies that the full force of hospice care is in progress
I’m listening with interest, discussions around the Assisted Dying Bill which will debated in Parliament on the 29th of November.
The bill, in its many forms is presently working in parts of Australia, Canada, The Netherlands and Spain and the British legislation will be little different as the patient involved has to be actively dying within a sixth month period, a time limit which may cause disagreement between the two doctor referees.
In my view a number of patients who want the chance of self determination will essentially not be given it. The MND patients, the MS and the head and Spinally injured.
Many of these conditions are not life limiting of six months and therefore will not qualify.
I remember my brother who had motor neurone disease reviewing his chances of dignitas
It was all too much for him
It overfaces many.
Good EOL and palliative care should be a priority
Everyone should have access to hospice care
And hospices should be financially supported to take all appropriate referral's
Assisted dying , if it arrives will help a few
But it will fail many others who want it but don’t qualify its strict criteria.
I am saddened by their losses.
Thank you for such a clear ,experienced and informative explanation.Great help .
ReplyDelete"everyone should have access to hospice care"
ReplyDeleteIn the UK that's not going to happen in our lifetime.
Hospices are few and far between in the UK, where we live the nearest hospice is 108 miles away and is always full. Would we be able to travel that far to visit a loved one anyway? No.
“ everyone should have access to hospice care”
DeleteIt’s my opinion
Hospice care can be given at home too but it takes a different way of thinking
Our satellite hospice is based at a country hospital ( just one ward) so it can be done in the most remote area
Terminal and palliative care should and could be improved upon
Yes, there are many cases where the person is not able to give consent and are therefore denied even the opportunity of considering assisted dying. I do know that my Dad who had dementia, would have absolutely hated how his life ended, and if he had been able to give consent, would willingly have done so. At the time, one of our beloved cats had to be euthanised, and I wish I could have given my Dad the same, peaceful death. Maybe one day, living wills will become acceptable, but not in my lifetime, I suspect. xx
ReplyDeleteCapacity HAS to be proven , if it is implied , we are on a slippery slope
DeleteYes, I totally agree that capacity is vital, but there must be a way to make your wishes known, before you lose capacity. Then, presumably it would be up to doctors, relatives, courts to decide when the time was right? It is a very emotive problem, but there must be a solution that, although it may not be infallible, would help those who want it, to end their life as they want.
DeleteI have vivid memories of he way my Dad suffered at the end of his life, too confused by his dementia to be coherent enough to consent to anything at all. My personal wish would be to give my consent in advance of succumbing to such a disease so that, should I end up in a similar state, the decision will have already been made.
ReplyDeleteAt the point of writing this post there are no countries that include dementia patients
DeleteThat's an interesting perspective, John, and one that I'd not given a great deal of thought to. Your points are moving and valid.
ReplyDeleteI do see everyone's point , but our loved ones aren't suffering as much as we are in most cases. Hopefully they really don't know the pain it looks like they are going through.
ReplyDelete"Hopefully they really don't know the pain it looks like they are going through"
DeleteI find that a strange statement. If someone is clearly in pain they're given medication. If someone is in distress due to dementia they're also going through pain albeit of a different kind. If someone has severe dementia they're unabe to say what pain they have. How can you say they really don't know the pain? I have a relative in a nursing home (not hospice) who suffers mentally due to dementia, halucinations are scary and traumatic, no understanding of where they are or who anybody is makes the world a bewildering and scary place.
Gemma I’m not quite sure I understand your point
DeleteBut I understand watching your relatives dying can and is a terribly upsetting experience
maybe a better way to say it is that they hopefully don't understand / comprehend /or feel our pain for them
DeleteAnon, I agree. My mother, who had a very chaotic childhood after her mother died when Mom was 6, often got confused and would get frantic thinking she was in someone's home and they were going to make her leave. Where would she go?!? Frightening. I would comfort her, telling her she was paying them to stay there (meanwhile, she was in her own assisted living facility, but on another floor from her familiar one). Heartbreaking.
DeleteNina
Gemma - "our loved ones aren't suffering as much as we are"
DeletePerhaps you haven't got a loved one with incurable, devasting dementia. My relative is bed bound and suffers pain, imagined or real it's all the same in her mind. Horrendous halucinations and delusions where someone is chasing her to cut off her head and limbs, men are raping her daughter and slashing her body, so many dreadful things. She can't eat her meals at times because she is convinced someone is next to her waiting to cut out her tongue if she takes a bite.
She's not even at peace when asleep but repeatedly calls for help in her sleep. Health professionals aren't allowed to sedate her enough to stop any of this stuff, only to medicate for "anxiety" which doesn't help. She's had the usual so called "dementia meds" which don't work.
Whatever pain her loved ones have I can assure you hers is much much worse.
I agree with you, John.
ReplyDeleteTo qualify for the hospice in this part of Virginia, your doctor must say it is not likely you'll live more than 6 months, but if you do survive that long the hospice care continues until your demise and without any quibbles.
I hope those debating hospice care for nations have listened to hospice doctors and nurses so they can make intelligent decisions without idiotic limitations.
Hugs!
That hospice care compared to ours is very long term
DeleteWe more often , get referred patients that are close to death ( months to days) most patients go home after symptom controls are in place
My FIL had a bad stroke that he sort of came back from, but needed hospice care because his doctor was sure the next one would end his life. My sweet MIL wanted him kept at home, so the hospice team made that possible with providing a hospital bed, nurses, and aides to help and someone always on call. DH also helped his mother with turning and other positioning that FIL needed. Rather than having another stroke, FIL just slowly went downhill, staying in bed more and more, until about 4 months later he quit eating or drinking and died not long thereafter. He was pronounced by the hospice doctor sight unseen and taken away for cremation as that was all prearranged.
DeleteHugs!
We spent a summer staying across the country so that we could daily visit and support a dear friend in hospice care and came away very impressed with the concept and execution of hospice care at least in the facility she was in. It should indeed be available to all who need it. Not likely here for the next few years at least!
ReplyDeleteCeci
I think it’s tragic that hospice care is charity based
DeleteMarie curie , who provides community support is often the only support some families have OVERNIGHT , , support that can only be brought in otherwise if self funded.
My friend Ruth is a Marie curie nurse who works as an emergency call out specialist at night. She covers most of north wales , and is paid by the charity not the nhs
In MA hospice care is readily available. An individual can have hospice care in their own home or move to a hospice facility for care. My late Uncle legally stipulated hospice care in his own home with me overseeing. It worked extremely well, and his care was excellent. Comfort care was provided to EOL.
ReplyDeleteIs it funded through personal insurance?
DeleteMy mother’s was, although she never ,used it
DeleteLee x
Medicare is a US government offered health insurance. We pay in to it. It is also subsidized by the Federal Government.
DeleteIn my Uncle's case, he had Medicare and Blue Cross/Blue Shield (private) health insurance, and both covered the majority of costs for his hospice care.
I'm going to chime in in case Susan doesn't see your question. Massachusetts is a state that assesses high taxes on its population, making it expensive to live there, but they also provide excellent services. Retirees choose their insurance plans from various provider options, and that choice can either provide very nice reimbursements or some with more limited options. My sister lives there, but while I would love to live there, I would worry that it would deplete my retirement savings too quickly.
DeleteNina
I was wondering what your perspective on this was. I agree that good EOL and palliative care should be a priority but also agree with the assisted dying bill should be passed. The bill won’t help everyone but it will help some.
ReplyDeleteVery surprise that someone in the UK is 108 miles from their nearest hospice. I just checked and there are seven within 30 miles of me
Noted
DeleteI have much to say about this topic with 2 very close relatives having the option available and one choosing it. I'm not one to share personal details in public so I'll refrain from saying much here other than it is sometimes the only compassionate choice and it should be available in certain circumstances.
ReplyDeleteMimi
I’ve always thought what you think, but working in a hospice has changed my perspective
DeleteI have experienced poor palliative care first hand in the nhs, funding should be much higher in the Trusts as well as increased government spending and support for hospices,
My father was in the best of hospice care for 2 years with excruciating pain that no amount of medication could relieve. Another close relative suffered from the cruelest of diseases for over 10 years when enough became enough. In those cases it was the endless days and years of suffering that formed my perspective.
DeleteMimi
Mimi
Delete“ total pain” is an extraordinary hard pain to deal with l’ve seen it sorted after much latereral thinking
Like many, I have an absolute fear of not being in control of my life and my body. We should, by the 21st Century be able to make living wills which legally oblige the authorities to do what we want should be lose capacity. LPAs don't cut it because my attorney won't be able to end my existence (which is how I see it - existence, not living) which is what I would want. The only alternative will be to end my life, probably prematurely, as soon as I sense my faculties declining. What a strange world we live in. Allowed, and indeed encouraged, not to allow our pets to suffer but not permitted to do the same for our loved ones.
ReplyDeleteThe pet arguement is powerful but as many vets would support, many people euthanise pets when care becomes too expensive
DeleteI would say that if the treatment for a pet was very expensive it is likely for a serious problem. At that point to euthanise is a better option. I watched my sister in law put untold numbers of pets through stressful veterinary treatment. The animals rarely showed signs of knowing they were 'ill' and the vast majority would have been best left alone. Of course, the vets love her.
DeleteMAID, medical assistance in dying, is evolving and improving in Canada.I want to be able to request MAID early if I should end up with dementia. I've told my daughter and she's okay with that.
ReplyDeleteMy daughter will face her own challenges, depending on how her MS progresses.
The Canadians seem to have a “ careful” assisted death system
DeleteI've been curious as to your thoughts on the subject of assisted dying. Thanks you for sharing.
ReplyDeleteWhy is the right to death, the most inevitable part of life, denied as a choice? Massive efforts go into keeping people alive, yet not a single, compassionate way allows people to die by choice. Many older people who have lived long & well, who are not sick or in "bad" shape, have simply had enough. Many simply want to be able to die when they choose. A compassionate society would allow its citizens the right to choose.
The problem will always remain capacity and consent
DeleteIf someone is deeply depressed
Can they give clear consent?
Not everyone wishing to be able to control their own death is depressed, unhinged or unstable.
DeleteDepression can be a life long battle for people and society does very little to help with that. It is a lonely and hard journey. If people who have battled cancer are allowed to say when enough is enough, why not people battling depression? We have such a skewed view of death and dying. What my mother went thru in her slow descent from dementia has scarred my family. Her death was the worst thing I've ever experienced, and to see how hardened the staff were was horrible. Oh, it's ok that this person spent 2 days gasping, cycling through fear and restlessness, mouth dry and crusted, sweating, hands cramped into claws, while we begged for them to give her ease. She was unable to voice her needs, while staff were too scared to even give her the eol drugs we had made sure were prescribed to her. As a supposedly modern society, we should be able to do far better. I've heard the stories of too many people. My father took a VAD and ended his life peacefully on his own terms. In Holland families can make the call for a far gone dementia patient. I don't fucking care if it is occasionally done for the wrong reasons. The person is still free of suffering.
DeleteAnon - I agree with all you've said.
DeleteX
ReplyDeleteThank you. I am glad that assisted dying is slowly spreading across Australia. I also mourn that as someone with MS I will not qualify.
ReplyDeleteCanada's legislation has worked well to date, insofar as it goes. Lots of people choose this option over a painful death. I had a friend with cancer go this route about 8 months ago.
ReplyDeleteYou are right. Out of all I have read about Canada is the most pragmatic but I’m still not convinced
DeleteI so agree with everything you said. Those who want it most may not be able to access it. But my god, it's a sticky issue.
ReplyDeleteIsn’t it just….
DeleteMy mother had one of the dementias and it took her 18 years to die. All of their friends died within 3 - 4 months of the diagnosis. It was very hard. The last 9 years she just wanted to be dead, until she no longer knew anyone. The "home" she was in was about $3K per month but she also had to have a personal caregiver because dementia is so much work!! In Florida we have a thing called Five Wishes - it outlines the EOL care you want and what you will or will not allow, you can name your health surrogate to make decisions when you can't. I have one, my doctor has a copy. Have no idea how well it will work when the time comes. It is mostly about the money - places get a lot of Medicare/Medicaid money for warehousing the elderly and infirm. Care is usually really poor because the aides get no benefits and are paid minimum wage. Maybe if you have lots of money the care is better but we didn't so I have no idea. I plan to suicide when the time comes because I have no faith in the government - keep looking for a painless and non-messy way! We have 8 states that allow Death with Dignity but I don't live in one of them. Hospice here used to be wonderful (my father was on it for 3 years) but since then the big corporations have bought up all of the small ones and it has become about the bottom line. We had some fabulous Hospice nurses during Mom and Dad's endings but even that is becoming rarer as they can get way more money elsewhere. Sorry for the rant!
ReplyDeleteRant away deArheart , I do feel for you my love x
DeleteThis comment is why I make sure to have enough money in my end of life plan to go to Switzerland. I believe you must be terminally ill to access their care, but I've read personal reports of families who accessed it and they were relieved about how simple it was (although the initial paperwork part was anything but simple).
DeleteNina
If I can , I will walk up on the Gop one last time
DeleteThere is a great book for people who don't want to leave EOL in anyone's hands, called "Final Exit," by Derek Humphry. He cofounded the original Hemlock Society, which ended, and founded The Final Exit Network, a non profit advocacy group. I bought several copies of his book, and gave them to the people I love. It is a crap shoot here in America, how your EOL will happen.
DeletePirate often said "if I get like that. Pass the rifle"...The year of palliative care here with Macmillan and the district nurses was good.. hospice at home was suggested but he went down so fast on his last week, he took them by surprise so it never happened. ..he had a long weekend in the palliative care assessment unit, and we spent that together, with friends visiting,
ReplyDeleteIt’s a hard post to read my friend , thank you for contributing
DeleteThis issue, is one of the reasons I spent 25 years in the field of aging. A starting point for Britain needs to be properly funding hospice and palliative care, I was shocked that NHS does not cover hospice. Properly done, hospice and palliative care leads to much improved end of life care. The majority of hospice care in the USA is provided in home, both my parents died at home with long term hospice care, as they chose. With physician assisted suicide the challenge is always consent, and there is an ethical tipping point there that we have to be careful to not cross. I have written chapters on this issue.
ReplyDeleteI totally agree. Leaving charities to spearhead the service is outrageous .paying hospice nurses 2000 pounds less than an junior nurse just out of training is insulting and sends the wrong message
DeleteGood hospice and palliative care, is complex medicine, managing pain and symptoms, while to the greatest extent possible allowing the Person (I refuse to call them a patient). Allowing the Person the highest quality of life possible.
DeleteCanadian here and I know personally two people who used MAID for different reasons. As someone who watched my mother decline with dementia, and is currently watching my mother-in-law go down the same road, I wish that, should I end up the same one day (one of my biggest fears), I can have that choice and not put my children through witnessing a wretched decline. - Jenn
ReplyDeleteAnother Canadian here. This is a topic near to my heart and I am grateful for your comments.
ReplyDeleteMy father passed at 95 yrs, lived in a care facility for a few years, but was lucid, physically able to go for walks, and fully aware. He was very practical and clearly expressed his wishes that “I’ll jump off the balcony, or you push me” if he was ever incapacitated physically or mentally. He knew this was unrealistic, but I believed his clear desire. Fortunately for him and me, he had a fatal heart attack or stroke in the bathtub one day, with no suffering. Pre-arranged MAID would have given him great peace of mind.
My mother sank into dementia (in her late 80s) over 6-8 years. By the end, she didn’t know me (or anyone else), was in diapers, force-fed liquid nutrition, and was in a perpetual state of fear. She was in a very good care facility with wonderful carers. I was devastated and she would have been horrified by the state of her life’s end. She finally passed away after contracting pneumonia - I was only able to get to her after her death. Again, pre-arranged MAID would have given her some peace of mind. But because of the gradual progression of the dementia, that was impossible.
I was heartbroken by her suffering and she would have never wished for any of it….
I understand the necessity to be be very careful and mindful in undertaking the wishes of the suffering, but I can only hope someone will let me go when it’s time.
Really effective pain control must be the important bit. I have always threatened to visit Beachy Head if life becomes unbearable, but by that time I probably would no longer be able to drive.
ReplyDeleteIt's heartbreaking to read what people go through in these situations. I can see both sides of the argument as it is hard to help some without endangering others. But I am horrified that hospice and palliative care are not well funded and supported in the UK. At least that would be of help to some.
ReplyDeleteThank you for explaining with such clarity and honesty, John. It is easy to see how polarised the various camps are on assisted dying, but it seems to me that all the suggestions of coercion etc can be very simply addressed if patients - who are recorded down to the nth degree by computerised records these days, especially as we age - are regularly asked their views about assisted dying and end of life care, and this be formally recorded. So if views remain consistent, there is no issue to address. Only if there are sudden and urgent changes of mind should the formal procedures be brought to bear as part of the decision making process. Or is this too simple?
ReplyDeleteMy sister died in hospice care at St. Lukes more than 40 years ago. The care and respect were phenomenal. My father died in a hospital in NY 6 years later. Hospice wasn’t even an option. It was awful. Thanks for your informed and enlightened perspective.
ReplyDeleteHappily the care home we managed to find for my Mum (it took some finding, places are filled as soon as they become available) has the ability to provide hospice care, but at an even greater cost to us. I have to say ... as cruel as it sounds ... that I hope my Mum runs out before our ability to pay for her care does. I couldn't face putting her through all the trauma and upset of having to move anywhere else.
ReplyDeleteIt's the situation for us too Sue, we're both old age pensioners funding an elderly relative in a nursing home. We pay a huge "top up fee" which Boris promised to abolish before he was elected. Empty promises and we live in near poverty to keep our relative somewhere decent..
DeleteI really feel for you, it's the hardest thing isn't it. :-(
Delete