“We have debated end-of-life care and advanced directives on our blog posts many times before. The consensus has been that PwMS choice is what is important in driving key decisions around end-of-life issues. I believe strongly in the holistic management of MS and to do this properly we need some kind of metric in relation to end-of-life care; simply having it as part the quality debate will get healthcare professionals, and PwMS, to think about it and consider their role in the management of MS in its terminal phase. A lot of end-of-life care is futile, expensive and undignified. Don’t we all deserve the right to choose a dignified death?”
“The legal case below has generated a lot of debate in the UK; it describes a ruling that allows healthcare professionals to withdraw supportive care to allow an elderly PwMS with minimal consciousness to die in a dignified way. Why did the judge rule on a passive process? Wouldn’t it be more dignified for the PwMS if the the doctors looking after her gave her a lethal injection?”
“It is clear that PwMS need to prepare an advanced directive or living will to help their families make a decision on their behalf. There are many website that offer advance directives that you can use. The simple one below from McMillan Cancer Support covers all the relevant issues. When I get the time I will transfer this onto a Barts-MS letterhead.”
Statement 1. PwMS (people with MS) approaching the end of life are identified in a timely way.
Statement 2. PwMS approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.
Statement 3. PwMS approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, with the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment.
Statement 4. PwMS approaching the end of life have their physical and specific psychological needs safely, effectively and appropriately met at any time of day or night, including access to medicines and equipment.
Statement 5. PwMS approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.
Statement 6. PwMS approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.
Statement 7. Families and carers of PwMS approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.
Statement 8. PwMS approaching the end of life receive consistent care that is coordinated effectively across all relevant settings and services at any time of day or night, and delivered by practitioners who are aware of the person’s current medical condition, care plan and preferences.
Statement 9. PwMS approaching the end of life who experience a crisis at any time of day or night receive prompt, safe and effective urgent care appropriate to their needs and preferences.
Statement 10. PwMS approaching the end of life who may benefit from specialist palliative care, are offered this care in a timely way appropriate to their needs and preferences, at any time of day or night.
Statement 11. PwMS in the last days of life are identified in a timely way and have their care coordinated and delivered in accordance with their personalised care plan, including rapid access to holistic support, equipment and administration of medication.
Statement 12. The body of a PwMS who has died is cared for in a culturally sensitive and dignified manner.
Statement 13. Families and carers of PwMS who have died receive timely verification and certification of the death.
Statement 14. PwMS closely affected by a death are communicated with in a sensitive way and are offered immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences.
Statement 15. Health and social care workers have the knowledge, skills and attitudes necessary to be competent to provide high-quality care and support for PwMS approaching the end of life and their families and carers.
Statement 16. Generalist and specialist services providing care for PwMS approaching the end of life and their families and carers have a multidisciplinary workforce sufficient in number and skill mix to provide high-quality care and support.
Excerpts:
….. Granting application to daughter of 68-year-old woman in end stage of multiple sclerosis, judge concludes it would be disrespectful to keep her alive…..
…… A woman in the end stage of multiple sclerosis has been granted the right to die, in a landmark legal ruling…….
…… The woman’s daughter had told how her mother was “completely incapacitated” and had asked Mr Justice Hayden to allow doctors to stop providing “clinically assisted nutrition and hydration”…….
…… Medical experts said the woman, who cannot be named for legal reasons, was in a “minimally conscious state”, however the judge concluded that it would be disrespectful to the woman to keep her alive in a manner she would “regard as grotesque”…….
…… Granting the application on Thursday, he said the focus of the case was her right to live the last of her days in the way that she would have wished…….
…… “[The woman] now 68 years old is profoundly impaired both physically and cognitively in consequence of the progressive degenerative impact of multiple sclerosis. It is now 23 years since [she] received her diagnosis.”……
…… She told the judge: “I cannot emphasise enough how much the indignity of her current existence is the greatest contradiction to how she thrived on life and, had she been able to express this, then without a doubt she would.”……
…… No one involved opposed the daughter’s application…….
…… Four years ago, a brain-damaged, minimally conscious 52-year-old woman was denied the right to die by another judge…….
…… Mr Justice Baker’s ruling at the time was hailed as a decision which clarified the law relating to the care of the severely disabled…….
…… He had said there was dignity in the life of a disabled person who was well-cared for and kept comfortable and so concluded that life-supporting treatment should not be withdrawn…….
…… Responding to the decision made today, Davina Hehir, director of policy at campaign group Compassion in Dying, said: “This case represents a landmark for the courts taking into account a person’s previously expressed wishes when deciding what treatment they would or would not want…….
…… “The experience of the family in this case must have been harrowing and our hearts go out to them. People can help to avoid these distressing cases by planning ahead for their own treatment.”……
…… “This is the first time that the court of protection has agreed to withdraw treatment from someone receiving life sustaining treatment while considered by medical experts to be in a ‘minimally conscious state’,’ he said…….
…… Campaigners who oppose assisted dying warned the ruling could put vulnerable sick or disabled people at risk. Peter Saunders, director of Care Not Killing said: “This case demonstrates judicial mission creep whereby judges, through subjective application of vague and ambiguous legal precedent, are able to shape and remake the law…….
…… Arrangements will now be made for treatment to be withdrawn in line with national clinical guidelines…….
But the same government wont allow people who cannot afford treatment to use off label drugs. Amazing.
Have I misunderstood your comment as in the UK there is the NHS that provides treatment.
anon, the NHS does not provide all treatments that someone might need, including DMDs and eg Fampridine which is charged at £191 every 4 weeks.
Bouncy thanks. I have been on a DMD tablet funded by the NHS though I have not requested other treatments just prescription pain killers. I would be interested in having a list of treatments that are funded by the NHS for MS and those that are not funded.
Dr Dre, where are you?
Listen, man. I appreciate all this 'please comment' stuff, but no thanks.I did, however, comment only a few days ago on this blog on something that the powers that be didn't publish. They blocked me.This may have been due to technical ineptitude on tEAM g'S part, but I will not post again till an apology is made to me from Don Giovannoni personally for this oversight.
Bye then.I am not sure why ProfG will apologise for something he did not do. Yes your post was in spam since monday. But it must have been you who put it there. So it was with the spell catchers herpes cures that arrive daily. So ask what did you write that google picked up and put in spam. I can see some words that may have triggered it. i wrote redrum the .
in reverse this single word turned the blog into an adult only sight.May be it was the shot that did it Dont be so prescious:-)
Don Giovannoni is the figure head of this blog. He's the Daddy Mac of this blog – the Mac Daddy, if you will. Therefore, being in the position, the buck stops with him.It's a shame his team is that incompetent that they blocked my comment and didn't bother to check. His team is weighing him down. He needs a new jam.I'll settle for a 'I'm Sorry, Dre. Please Don't Leave Us' … that sort of thing.
I often check the spam box but as I left home at 5 on monday morning for Dublin and went straight from airport to Harwell on tuesday night arriving at midnight and went from harwell to meeting in London and arring home at midnight wednesday night before meeting and teaching on thursday. So i might apologise to my colleagues and students whose emails i have yet to answer because i was preparing talks etc but if you think I will apologise for not checking spam you are mistaken.
Mate, why bother posting my brilliantly eloquent comment three days late? It's useless now!I wanna an apology from Dr. Baker, too. Good grief.
Can you all please posthumously publish Dre's comment? I can't find it.
"I wanna an apology from Dr. Baker, too"Bye thenMonday, 23 November 2015PoliticalSpeak: can we prevent neoliberals taking over the NHS?AnonymousMonday, November 23, 2015 3:10:00 p.m.Dre where art thou? This post has clearly been designed to get Dr Dre to cast his pearls of wisdom.ReplyDeleteRepliesDr. DreMonday, November 23, 2015 3:51:00 p.m.I'm here, baby.Listen, I don't wanna respond to these kinds of posts anymore because one doesn't accept that the firmament of neurological policymaking is conducive to patients' needs. Don Giovannoni fires off DMT prescriptions like he's Yosemite Sam, assuming that being on some sort of drug is better than being without. Heck knows what the consequences of that will be in a generation… could be astounding… could be pernicious. What I know is that MS cannot be cured because no-one knows why it's even happening in the first place.I think I know why you're asking me to comment on this post specifically, so I'll give it a shot: The superstructure hates the NHS. The conservatives and liberals out there have undervalued the NHS throughout my lifetime, and, as a society, perhaps we now think that it's time to put it to bed. As Thatcher's children, we've been moulded to believe that self-preservation is tantamount, which means that the wellbeing of others is of great superfluity.This Wednesday will see the new budget announced which will usher in the biggest public spending cuts in living memory. The poorest, eldest, disabled and most vulnerable in the UK will be hit unconscionably hardest. Just wait and see how unforgivably cruel it will be. But that's what Britain voted for. The Tories have a mandate to do it and will be carrying it through. It is shameful to be British right now.I find it almost emotional that sentient and educated grown adults are more focussed on the release of a new Star Wars film than on issues that matter. It's coming to the point that I don't care what Britain decides to do. Do you?There you have the pearls of wisdom.Dre wants to retire."So did George Osborne give the cuts to the level predicted by Dre or is this why he has spat the dummyabout his post being useless?
Bye Dre. It's been emotional.
I actually think that Dre has been most prescient throughout his commentary on this blog and it will be a shame if he retires.MD is wrong to gloat about Dre's overreactions to the Conservatives' budget. We MSers will be hit badly as Parliament is absolved of its commitments to the welfare of disabled people and underinvested local authorities pick up the slack. You don't live with disease or disabilities, MD. We do. This is a really bad position to be in. Vital services and adult social care is being withdrawn in economically deprived region and it'll be tough to benefit from a 2% increase in council tax when most in my area can't even afford to pay it in the first place.I hope Dre doesn't leave, though that's his decision. His opinions are seriously valued by me and many of us that read this blog, including I'd say Prof G. I really want Dre to remain.
If you delve into Dre's ouevre you'll see that he's been consistently against treating pwMS with any DMT, essentially saying MS cannot be cured, which I'm sure you'll agree is unhelpful and defeatist to say the least. Now politically he might be correct but his therapeutic nihilism is anything but in the interest of pwMS.
MD2, I do think that Dre's views on the politics of MS and British life in general is seriously valuable. His views on DMTs isn't too helpful, but I guess it's different. He's Dre, after all.I just think that he offers a good counterbalance. He should stay because he encourages us to question things.
In respect to politics it should be in a free nations people's hearts to question things and not be led around by an individual. It is counterproductive. I have been involved in politics a world away. I can tell you that nearly every single issue that exists when in media or worse by individuals gets extremely over simplified. Due to that, people are left uninformed. Mass media may "spin" things but you can literally ALWAYS be assured individuals do as they only tend see issues through their own limited scope. Governance likes things that way, it essentially leaves them an open path to do what they feel is right, even if it is not. It works to take focus off them actually having to answer for actions. People who truly care about legislative changes get informed and that in its own right can be formidable as these are all complex systems that interact with other complex systems, care, transport, budgets, jobs on and on. Nothing in governance or legislation can be understood or even grazed upon in a few paragraphs. It's like saying, "I can explain in 3 paragraphs or less why Dysphagia in MS happens" at a detailed level that makes a difference in 95% of people with Dysphagia's lives. Its not possible. The internet and interactive aspects of the Internet have in fact dumbed down people in as far as understanding complex issues. In order to alter the course of legislation raving about it does nothing even if the raving is correct. No person is empowered by it and thus it actually results in being counterproductive as it takes heat off the actual legislators. People "feel" empowered because that said their piece on a blog.Instead, if someone cares to learn the system(s) and be a REAL leader .vs. telling everyone whats wrong in scant superficial diatribe that has no detailed informational foundations they step up. They run for office. They organize people, inform them, work towards really making a difference .vs. making oneself appear be in the know and thus perhaps feeling significant or making others feel empowered.History shows many a tyrant has done exactly that sort of thing that has assailed to power. Its the difference between telling people what to hear and how to think .vs. being actionable and saying, "Lets really oppose this" and organize to do so bringing on the diverse skills sets, knowledgebase, media to counter legislation or introduce better mechanisms towards better legislation.Its difficult work and all encompassing usually. But if a person is so very passionate about what happens to other people via legislation then they should gather their flock and run for office. If they do not wish to run for office they can still become a force of change. That however does not happen through spending an hour in front of a kyboard telling people what is wrong and/or right. It happens by being actionable.
Good idea, retire that is. How to whittle down complex problems that affect many people into a superficial mass of nothingness. Congratulations, you win a gold fish.Intelligent people recognize ignorance and they ignore it and perhaps even try protect those unaware of it. If a person is going to be ignorant they are in essence asking to be ignored. So what's the problem? You received your wish.