good life, good death, good grief

The Reluctant Planner's Guide to Death and Dying

Advance Directive

In my last post, I talked through my Power of Attorney and hit a snag. It’s all well and good granting someone the power to make decisions on your behalf, but how do they know they are making the right decisions?

This is where the Advance Directive comes in (Advance Decision to Refuse Treatment – ADRT - in England & Wales), also known as a living will. This is a record of what your wishes are in the event that you become incapacitated and close to death. Say you had a major stroke, and you ended up on life support with no chance of living independently again. There are things the medical team will need to ask, and your attorney will need to speak up for you. There will be treatments that can have a realistic chance of helping you live longer but would not help (or would possibly harm) your level of comfort. The clinical team will want to know what you would have chosen if you were able. If your heart stopped and CPR might realistically work would you have wanted it to be given? Would you be happy to be fed through a tube indefinitely? What if you weren’t ever going to be able to breathe by yourself again? Your Advance Directive can give your attorney and medical team a powerful sense of how you might have answered these questions.

That’s a lot of “ifs” to consider though, and my immediate thought is: how do you second guess the future? As a non-medic, how do you know what interventions might be offered for a hypothetical future illness? Fortunately, I had the chance to speak to someone well qualified to advise – Dr Juliet Spiller, Consultant at Marie Curie Hospice Edinburgh. It turns out Advance Directives are less about predicting specific scenarios and more about setting out general principles for what really matters to you.

“It’s a conversation you need to have around life values, the situation you might find yourself in that would be completely unacceptable to you. When you’re fit and healthy, you have no idea of what’s ahead, but you might a have a stroke, you might have a car accident. Would you want to continue life at all costs?”

You’re actually only considering a very limited number of scenarios and a limited number of medical interventions. You’re not signing up to an open-ended arrangement that would prevent medics from saving your life if there was hope for improvement.

“To just say ‘I wouldn’t want CPR’ [in any circumstances] makes no sense. But you could say, ‘if I’m not going to regain any independence, I would not want artificial ventilation and I would not want CPR tried if my heart stopped’ for example.”

This is not about euthanasia either.

“People can only stipulate that they would refuse specific treatments, but cannot actively request treatments to end their life,” Juliet explains.

‘Empowerment‘ is the word that keeps cropping up as we chat further. Advance Directives empower the people who will be left acting on your behalf. Juliet points me to a heartwrenching piece by Professor Jenny Kitzinger, whose sister Polly was left with brain injuries after a car accident. Jenny was insistent that Polly would not want interventions to keep her alive, since her injuries meant she would never leave 24/7 care. But the doctors would not withdraw life-sustaining treatments once they were in place even when there was no realistic chance of Polly ever regaining a quality of life she would have found acceptable. This was despite Jenny having fragments of Polly’s poetry and diary entries to try and make the case. An Advance Decision would have been powerful evidence of Polly’s clear wishes.

Juliet made the point strongly:

“If you’re worried at all, put it in writing, because it empowers people who love you to do the right thing. The medical team need to be certain that care and treatment decisions are being made for the overall benefit of the person who is unable to speak for themselves. But wishes that are documented in an Advance Directive or Advance Care Plan will be respected if it is clearly valid and relates to the patient’s current situation. It’s a significant advantage to have one.”

You’re also saving your loved ones from uncertainty and guilt.

“The family can feel like they’re killing that person,” says Juliet of people who’ve been traumatised by the decision to stop (or to not start) potentially life sustaining treatment for loved ones. Knowing that decision was already made in advance by the person themselves makes it easier and the decision then becomes a positive, respectful thing in the midst of a terrible situation.

It is possible to create your own Advance Directive. Compassion in Dying have a process on their My Decisions website. One of the benefits of doing it via a solicitor though is that they act as a counter-signatory and can certify both that you have capacity to make the directive and that you are not subject to undue influence. These are things that you do not want called into question if the time comes to use the directive.

I’ve already planned to draw mine up with a solicitor alongside my will and Power of Attorney, though I found the Compassion in Dying site is still useful to take you through the thought process. For instance, reading through made me realise that consciousness is key for me. I wouldn’t want life-sustaining treatment if I was diagnosed in a continuing vegetative state following a brain injury, but simply being unable to attend to my personal hygiene or unable to swallow would, for me, not be sufficient grounds to stop treatment. And certainly, if I was still able to interact, even if I didn’t recognise people, I would want interventions to continue.

There are then some very important next steps. Your doctor should be given a copy to keep with your medical records. You should carry some form of card or notification with you, specifying that you have an advance directive. Most importantly of all, you should make your welfare attorney and others close to you aware of it. They are the people who will be speaking on your behalf and they need to make their (i.e. your) voice heard. At present, there’s no central register of Advance Directives in Scotland so it’s incumbent upon the welfare attorney to make clear its existence and contents.

It can also be helpful to create a “letter of wishes” to cover less imperative, but still important matters, such as likes and dislikes, diets and daily routines. These would not go in the Advance Directive but would complement and provide additional useful information for your attorney and medical team.

Finally, Juliet reminds me of one other crucial thing - it is worth revisiting your Advance Directive regularly, because circumstances change. You can of course amend or withdraw your advance directive as long as you have capacity to. Doctors would even accept a verbal revocation if you’re capable and competent to give one.

Should you be diagnosed with a chronic or life-limiting condition, matters then change from “if” to “when” and it could be time to move to a more specific Anticipatory Care Plan. But that is a blog topic for later in the series…

Further Info

NHS Choices - information about Advance Directives

Compassion in Dying

My Decisions - online service for recording your wishes

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Before I die I want to ...
Bereavement Charter for Scotland