Lifting a Toast to Andrew Barclay
I don’t want to write about Andrew Barclay. But I have to. Because Andrew Barclay could be you or me.
Barclay died in early December. He was a former civil servant in the U.K. and a grandfather. He turned 65 on his last birthday. And, Andrew Barclay had multiple sclerosis.
Barclay was diagnosed in 1992 with relapsing-remitting MS. Three years ago the disease moved to secondary-progressive and Barclay moved to a wheelchair. He could still shower and go out to the pub with his wife. On the other hand, he told the British newspaper The Daily Mirror, “I can no longer walk. I have to be helped out of bed and dressed by my wife. If I were to stand up I’d just shake and fall over.”
There were other problems as well, such as incontinence, severe tremors and extreme fatigue. But worse, he told the newspaper, was that he’d become someone he didn’t want to be. “I can’t even lift up my granddaughters and whirl them through the air like a grandpa should. … I want to express the love I feel for them, but instead I’m grumpy, telling them off. Not because they are naughty, but because of the way I physically feel,” he said.
So, a little more than a year ago Andrew Barclay decided it was time to die. Because assisted dying isn’t allowed under British law, Barclay had to travel to Switzerland and pay an organization 10,000 pounds to grant his wish. Dignitas, where Barclay swallowed a lethal mixture of prescription drugs, is a not-for-profit death-with-dignity association. In addition to providing counseling, suicide prevention, and advanced directive legal planning, its website states “In case of an illness which will lead inevitably to death, unendurable pain or an unendurable disability, Dignitas offers its members the possibility of an accompanied suicide.”
Accompanied suicide was Andrew Barclay’s choice, and for more than 14 months leading up to his death Barclay allowed a writer from the Mirror to report on his journey. The result is a fascinating story, which I hope you’ll click and read. I’m sure Andrew Barclay would like that.
Measures that would have revised the U.K.’s assisted dying law have failed in parliament at least three times since 2006. Barclay hoped his story might generate discussion, and eventually reform, of that law.
Each of us with MS may one day face the decision Andrew Barclay made. Each of us should be thinking about this possibility and discussing it with our families. That’s why I had to write about Andrew Barclay.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
JUDY EPSTEIN
I have ms and feel if a person in the UK wants to decide on their own death they should legally have the option to do so instead of having to travel to Switzerland and pay a lot of money to grant their final wish. The decision by those in government is in a word, selfish. Some might say the same of those choosing to end their life due to their incurable illness. However I feel it should be the ill person's choice. The person who doesn't have ms will never know.
Ed Tobias
Thanks for taking the time to comment, Judy. There are many opinions on this subject and I appreciate your sharing yours. Ed
Anonymous
You can't be serious!
To post this when there are options today for a life with disability. MS is not a death sentence today. That is why HSCT needs to be the first line of treatment and needs to be promoted. To post this article is insensitive and ignorant to MS people. We need emotional and spiritual support as well as medical and physical support not education on hopless and helpless options.
Totally unacceptable for this site to post this.
Ed Tobias
Dear Anonymous,
Yes, there are many options. I wrote this column so that people with MS would be encouraged to discuss one option just as, I hope, we all discuss the various treatments and drugs that are available to us. There is no single solution to how we each handle our disease. Knowledge and discussion of all of the options is important to each of us as we try to deal with MS in a way that best suits us.
Steve Johns
Totally unacceptable to you Anonymous! And who are you? What makes you an authority on whats right or best for Andrew or me? Your arrogance is astounding. In all cases it is the individual persons own life and they are the ones who have the moral right, if not the legal right, to make choices about the end of it. People who set themselves up as being a bit superior by claiming that their personal attitudes, thoughts and feelings are the ones that should apply to others when it comes to choices about their own lives really annoy me! You are a disgrace! Here's some advice, if you don't want it, don't do it! Stop trying to control other peoples lives.
J. Cook
Thank you, Steve, these are my thoughts exactly. The world would be a much better place if we didn't judge, and dictate, the lives of others based upon our own beliefs and attitudes.
Claudia Chamberlain
Thank you for posting this, Ed. I hope it never comes to this for most of us, but sometimes there is no adequate pain management. When there is not an ounce of joy left in life, it should be a viable option for those who wish it after all else fails.
Mary Holmstrand
I am in agreement regarding right to asssisted suicide for terminal illness. There is nothing worse than having to watch a loved one or yourself physically and mentally diminish before your eyes. But I disagree that we should have to accept as an alternative for this disease. Why are we not more angry about not having first line treatment options that work for all, yes, like HSCT or MSC therapy but that accepting assisted sluiced is the next best option? It's criminal that this gentleman and his family had to even face and contemplate this option in this day of scientific and medical advances. I wish his family the best.
Carole Isaac
I agree Mary. As I was reading through Andrew Barclay's account, I was feeling his every symptom. I have been diagnosed with M.S. for 40 years and know what pain, frustration and irritation I experience, when I've fallen off my mobility scooter and have had to wait patiently for someone to rescue me. I rely totally on my scooter, as if I try to walk a few steps, I always end up on the floor and add to my many bruises and cuts.
People should not judge our mental state or our rights to choose what is best for us / our families.I get very sad and depressed, when life seems to go the wrong way.I want to scream and shout .. but so far I have not managed to persuade my doctor/ neurologist to prescribe the one treatment, which I know works.
I was lucky enough to have 11 good years as a normal human being, when I was allowed to take 3,4 diamino-pyridine [Amfampridine & Firdapse]. Now I am struggling to live anything called life, because someone who does not understand about this wonder drug has decided that they do not think it will work for enough MS sufferers.
Why does the medical profession not listen to people's needs and allow them to be given the treatment, which that person knows is effective for them.It seems that they would prefer to let people become depressed and thus more likely to consider suicide.Perhaps if Andrew had taken this medication, he would not have gone down the final path.
Bill Dolighan
Carole Isaac's comment relates to something very much in the news in Canada. The Right to Try. Patients are becoming more vocal about Canada's rules and restrictions on the use of prescription drugs.