“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.
….. 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…….