ClinicSpeak: the legacy of Debbie Purdy

Imagine being diagnosed with MS and your only reference to the disease is someone in a wheelchair seeking assisted suicide? #ClinicSpeak

"In the UK Debbie Purdy is a household name; she became a MS celebrity for her campaign to decriminalise assisted suicide. Her status in UK society is cemented by the fact that her premature death has been covered by the BBC, Sky News and ITV TV news channels and the Guardian, the Telegraph, the Daily Mail, the Independent and the Mirror newspapers. I am sure many more will have detailed obituaries on Debbie and continue her legacy."

"Although assisted suicide is illegal in the UK it does not stop people travelling to countries where it is legal for help achieving this aim. Prior to Debbie Purdy getting the law changed any family member, or friend, who travelled with someone to be with them when they committed suicide could potentially be charged under British law with murder. The latter is still likely if there are no extenuating circumstances, for example being the recipient of large inheritance would be a potential issue. Debbie Purdy got the law changed; she wanted the option of seeking an assisted suicide abroad and dying with her husband by her side in the knowledge that he would be free of any potential criminal charge on returning to the UK." 

"Debbie Purdy clearly raised the profile of assisted suicide by getting the law changed. There has been an endless debate in the medical community about this issue and the ethical issues it raises for society. At a personal level I have no problem with assisted suicide; I can give you a list of potential scenarios were I may want access to this option for myself. Please note that I only state that 'I may want' access to this option; you can never prejudge how you see things in a particular situation until you are there. As I write this I am acutely aware that in almost all religions assisted suicide is a no go area and I appreciate and respect that perspective. From a professional, or medical perspective, I don't agree with assisted suicide; it is a slippery slope. The dividing line between assisted suicide and euthanasia is a blurred one, particularly if the disease in question, such as multiple sclerosis, affects cognition."

"One of the hardest things I have have done as an MSologist is to prepare medical reports for patients of mine seeking an opinion from Dignitas, the Swiss clinic specialising in assisted suicide. I initially refused to write my first 'Dignitas report' then realised that as the clinician in charge of the particular patient's care it was my duty to write the required medical report. All that Dignitas require is an objective verification of the background medical details. All I do now is write factual reports and state that I am not in a position to make an assessment whether or not the particular patient is of a sound enough mind to make a rational decision about assisted suicide. The latter would need to be done by experts in the field and only after detailed neuropsychological and psychiatric assessments. I assume Dignitas provides this service."

"It is impossible to be a clinician who looks after patients with the primary aim of trying to improve clinical outcomes, and quality of life, to then have to shift into assisted suicide mode to end life. If assisted suicide does become legal in the UK, doctors who take this on would need to be specialists in the area and not part of the teams who look after patients with specific illnesses. In other words patients would need to be referred to a new, an independent, team of healthcare professionals for assisted suicide. Please note the issue of assisted suicide is different from palliative care. Most doctors who are well trained know when to they have lost the battle with an illness and their role becomes palliative; i.e. shifting the focus on making a patient's life comfortable and allowing them to die with dignity in the environment of their choosing."

"What Debbie Purdy did was create the impression in the UK that MS is a terminal illness; it is not. By definition a terminal illness is a disease that has no treatment and leads to death in a short period of time (months). MS has treatments and if MSers are looked after they can expect to have a near normal life expectancy; MS reduces life expectancy by approximately 8-10 years on average. As a result of her celebrity status Debbie Purdy inadvertently became 'the poster child of MS' in the UK. We are continually trying to change that. Imagine being diagnosed with MS and your only reference to the disease is someone in a wheelchair seeking assisted suicide?"

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