Liberty in Life and Death.

An elderly patient being pushed in a wheelchair by a carer. Taken from behind.

Trigger Warning: death, euthanasia, assisted suicide, terminal illness.

Audio:

Despite the progress modern medicine has made, there continues to be two basic concepts that cause much debate in the medical community; autonomy (having the final say in what happens to your body), & consent (giving permission for medical intervention). Having worked with many NHS nurses and doctors I know it can be hard for them to find time to dedicate to these two essential aspects of healthcare, and they are often viewed as bureaucratic obstacles that impede their progress, which isn’t something you need when saving a life. While the vast majority of medics do demonstrate a solid understanding of both theoretical concepts, putting it into practice is seemingly a much rarer skill.

Issues surrounding autonomy perforate every level of medicine, and many of us with chronic illnesses have encountered them. If it were up to me, I’d get a hysterectomy. The thought of spending the next three decades battling for access to medication, without which I am in horrendous pain, is unbearable. However, because I may want to have children in the future this has been denied, despite the fact that I am incapable of even conceiving. They also refuse to suggest any long-term treatment plans beyond paracetamol, despite this being completely ineffective. Essentially, I have no autonomy in the decision on how I live with endometriosis for the next few decades.

It is also not unheard of for issues of consent to arise in the treatment of chronic illness. While under general anaesthesia for diagnostic surgery, a separate procedure was conducted without my consent that left me in more pain than the surgical wounds themselves. It had no long-lasting effects beyond extreme discomfort when doing anything other than lying down for the next week, but I still felt violated. Had they asked me prior to the surgery if I wanted the additional procedure done, I would have said no, and I suspect that having seen my medical records and knowing I would probably say no as a consequence, they decided it would be better not to ask.

The aforementioned issues are clearly serious, but endometriosis isn’t a terminal disease. Post-menopause I will never have to deal with it again; that’s just a long way off right now.

However, what if you do have a terminal disease? What if you know that your final days will be miserable, painful, and slow? In this situation, many people reach a certain point where they wish to die peacefully before it gets any worse. I have personally known a few people who expressed this wish before they passed, and nothing can prepare you for witnessing the brutality as they are forced to carry on. Modern medicine can also preserve life long past the point when someone would have died of their illness, drawing out the process even further. As a consequence of this lack of autonomy, I am fully committed to the stance that consented euthanasia for the terminally-ill should be legal (note: suicide attempts due to mental illness are a different matter, and in these cases, life should be preserved wherever possible).

The vital word in my stance on euthanasia is consented. By this I mean that physical proof of this wish should be obtained from the terminally ill patient: not their family, friends, lawyer, or doctor.

The reason I only support consented euthanasia is that, frankly, the coronavirus pandemic has proven that disabled lives are valued less than those of our able-bodied counterparts. Terminally ill patients were pressured to sign Do Not Resuscitate orders, and there have been multiple instances of doctors switching off life support for disabled patients who were infected, despite the protests of family members. Even before the pandemic, cases of lawyers and doctors over-ruling the decision of distraught parents to turn off the life support of their sick child made headlines every few months, with doctors deciding that the quality of life of the defenceless child would be so diminished that they were better off dead. Nor is it only doctors and lawyers making such decision, with some family members choosing to put an end to their disabled child’s “suffering”, although for some reason these particular cases often count as murder, whereas others don’t (note: before someone uses this as a pro-life statement, abortion is a separate debate which I have addressed here.

Of course, the issue with only allowing consented euthanasia is that those unable to provide consent are left to face their illness without a more peaceful option. Fortunately, working in medical research has shown me that there are actually a lot of ways to provide consent in addition to simply signing a form, and hopefully this would partially address the issue. However, I am aware that my stance does leave some people in a difficult situation, particularly in unexpected emergency cases.

I wish I could, in good conscience, support euthanasia where someone other than the patient provided consent. Maybe one day, when disabled lives are valued equally to able-bodied lives, that stance could reasonably be challenged. Maybe further advances in technology will allow more options for providing consent.

I do believe that people should have some autonomy in how their terminally-ill life ends. I also believe that consent is an essential aspect of that autonomy. I know that should I ever develop such a terminal illness, there would come a point when I was ready to die. It terrifies me that, as the situation stands, that option would not be available to me.

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