Dumb ways to die?

I’m worried by the number of people who describe someone they love dying a horrible death. It’s happening in the context of current discussions on assisted dying. I’m worried about all those cases where it was not necessary.  This is when the person telling me failed to use powers they already had to make it better for their loved one. 

They had welfare Power of Attorney but didn’t know what they could do with it. They could use it to help the doctors and the patient make it all end. The attorney had the authority to stop the treatments that were keeping the person alive, and to ask for palliative care to be given instead.  A son with power of attorney for his father described all the apparently pointless interventions in intensive care towards the end of his father’s life.  I asked him, “Did you tell them to stop it?” and he replied that he didn’t know he was ‘allowed’ to do that.  A less compassionate listener might have told him that he had a duty to tell them to leave his dad alone, not just permission. 

Another woman told me that she was in favour of legalisation of assisted suicide because she herself didn’t want to die in agony, and it turned out that she didn’t know about advance statements.  An advance statement allows you to refuse a treatment that could potentially keep you alive, also known as ‘life-sustaining treatment’.  This might be artificial ventilation, resuscitation if your heart stops, or antibiotics.  You can make it clear in advance, and get it on your medical record, accessible electronically even by the paramedics on site at home, that you don’t want these, except under certain circumstances that you have stated in advance.

‘Consent to treatment’ means that a person must give permission before they receive any type of medical treatment, test or examination.  This consent must be given based on an explanation by a clinician.  It’s an important part of medical ethics and international human rights law.  If the patient concerned, like this man’s father, is incapable of giving consent, then as his attorney, it is the job of the son to give consent or withdraw it.  You can withdraw your consent at any point. It’s a human right.

If the clinicians don’t know that the son is the attorney, then they must make the best decisions they can and may often err on the side of striving to keep the patient alive, long after the onlooking family wish it would stop.  The clinicians are required to do what is in the best interest of the patient.  In doing that they may be inclined to practice ‘defensively’.  This means that they make superhuman efforts even when there’s not much return on that effort, just so they will not be accused by the family of failing to try.  It’s very hard for them to draw the line in the right place, because the risks are high, and their job is hard enough already. They sometimes have a hard time explaining to families that the time has come to stop.

Families sometimes think they have the right, or the duty to insist that clinicians don’t stop. And then others think that it goes on too long. All of us need to be clear what we would want, and that usually means being kept comfortable, no matter what. Asking for assisted suicide legislation implies there was no other way out. But there is.

If you are an attorney for your dad, it’s a good idea to have had some discussion about hypothetical situations.  Would you want them to start your heart again if you already had a stroke or dementia?  Would you want a treatment for cancer if you were already very ill with another terminal illness?  It might seem hard to engage in this discussion.  But how hard is it to live the rest of your life thinking that your dad had a bad end because you were embarrassed to ask and so you didn’t do what was in your power to help him die the way he wanted?

 Yet a large percentage of people are saying that they’d like to have a law that allows assisted suicide, in case something like this happens.  Do those people know about the power they already have to refuse or stop treatment?  Do they know about making an advance decision, where they can make it very clear what interference they don’t want at the end of life?  I suspect some of the current support for assisted suicide is because people don’t know or use the powers they already have.  The problem about introducing a new power is that it is a Pandora’s box, which once opened, will let evils into the world that we’ve not yet imagined.  I think we should try harder with the powers we have already to avoid the dumb ways to die.

So for those of you who know…here’s the song.