good life, good death, good grief

The Reluctant Planner's Guide to Death and Dying

Good Life Good Death Good Grief's Development Manager, Robert Peacock, isn't well-prepared for death. In this blog, he intends to set that straight. Over the coming months, he is going to get his affairs in order. He is going to seek advice on what to do and when and how, and then he is going to do something about it, all the while hoping that none of it is needed for some time yet. Join him as he writes about the experience...

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

Power of Attorney

In a previous job, one of my tasks was to collect emergency contact details for the older people we worked with. Sadly, as with so many old folk these days, there wasn’t always a family member nearby. “Well I suppose it’s so-and-so, she has my power of attorney,” would be a common answer.

Like many legal and technical matters, I understood that basic concept - “attorney” - but didn’t fully grasp its significance or implications. To me, it just meant “someone who can look after your affairs if needed.” And at the basic level it is, but it’s a bigger deal than I thought, as I found out by talking to lawyer David Borrowman of Solicitors for Older People Scotland.

“It’s the one thing I would urge everybody to do,” says David, before explaining some very good reasons why.

Your attorney is the person you would like to act on your behalf in the event that you’re unable to. You could be housebound and need someone to go to the bank for you – a simple matter of convenience. Or you could be critically ill and need someone to communicate your wishes for medical intervention – a literal matter of life and death.

You may assume, as I did, that your partner or children can automatically make decisions on your behalf as your next of kin. Not so. Next of kin has no relevance to Power of Attorney. You could be incapacitated in hospital, your family adamant that you would rather be at home, but without Power of Attorney being granted, they have no authority to take that decision on your behalf.

Not having a Power of Attorney can therefore be horrendous. The potential distress to families of being unable to act for their loved one is immense, and the financial cost can be astronomical. Without Power of Attorney, the only recourse is to apply for Guardianship through the courts, which costs many multiples of the cost of setting up a Power of Attorney, not to mention the time and uncertainty.

So while it does cost a couple of hundred pounds to set up a PoA (though some people on low incomes are entitled to financial help - worth a check via the Scottish Legal Aid Board), the alternative is a lot worse. “It’s like an insurance policy,” says David. “You hope it’s never used, but it’s there if you need it.”

I need no more convincing, so where do I sign up?

“Go and see a lawyer,” says David. “You can do a DIY Power of Attorney, but it needs to be certified [typically by a lawyer] anyway, and most lawyers charge for certification. For not much more money, you get much more of a service.”

There are actually two different Powers of Attorney to set up – “continuing” for property or financial powers and “welfare” for powers over healthcare and wellbeing. A Power of Attorney document normally covers both of these, and once complete, needs lodging with the Office of the Public Guardian (Scotland) to be effective.

Some advice out there says keep your Power of Attorney with your lawyer until it’s needed to save the Office of the Public Guardian registration fee, but David argues this is not only a false economy, but potentially a catastrophe.

“Once in every wee while, the Office of the Public Guardian will not accept a Power of Attorney registration - if there’s a name spelt wrong for example. In that case, it is better to know now, than to find out when you really need to use it. If it is defective and you seek to register it after the person has lost capacity, it can’t be registered, nor used. And of course the person who has lost capacity can’t do another one. You have the worst of all worlds – you’ve paid for a POA which doesn’t work and someone has to go to court to become a guardian.”

OK, so I now know how to make my PoA. But who to actually make attorney? What to consider? It’s not a decision to take lightly. The obvious candidate is my fiancée Jo.

“Being an attorney is an active role,” David advises, speaking with first hand experience of being an attorney. “He or she can’t afford to be a shrinking violet. They may need to step in and be forceful to get what you want done.”

Yep, that’s still Jo. She wouldn’t take any nonsense if she thought I needed help.

But I’m advised to have a back-up, in case Jo can’t do it. My infant daughter is out of the question for now, though I’ll be able to add her when she comes of age. So who else?

“People select their parents, but bear in mind they’ll usually die first,” cautions David.

For me, my sister is the next obvious person. Then, because an accident could befall an entire family, I have in mind a good friend of mine, who also happens to be training to be a Catholic priest. A double benefit – he can perform the last rites while telling the medics they can switch off the life support.

I speak to all three of them, to see if they’re happy to take the responsibility. They all accept a little too eagerly for comfort…

Because that’s another common fear about granting Power of Attorney. Aren’t I putting my life in the hands of these people? What if we fall out? Could they siphon off my money? Could they get something horribly wrong?

Of course, common sense says you don’t grant power of attorney to errant family members with an axe to grind, but in any case, there are very strong legal restrictions on what attorneys can actually do.

“They are required by law to do what you would have done yourself. They have to act according to your last known wishes,” explains David. So no hastening grandma’s demise to get your hands on the inheritance. If she would want to stay alive, it’s incumbent on you to act accordingly.

For that reason, it is usually a good idea to specify your wishes at the same time as doing your Power of Attorney - an Advance Directive being the term for your medical wishes.

For me, that requires some more thinking, so I’m not in a position to do anything yet. But I’m clear who I want to give my Power of Attorney to, and clear it should be top priority.

“I’d advise doing all three [a will, an advance directive, and a POA] at once, but if you’re only going to do one, do a Power of Attorney because that’s the one that will be most help.”

Further Info

My Power of Attorney - Scottish campaign to raise awareness of POAs

Office of the Public Guardian (Scotland) - How to register your POA

UK Government - POA info for those in England and Wales

Getting started

At Good Life, Good Death, Good Grief we are always urging people to get their affairs in order. Have the conversation about your future wishes for care and funerals and what happens if you’re incapacitated now while you’re calm, healthy and thinking rationally. Make sure your family and friends know what you want to happen after death. Don’t leave a financial and potentially family-breaking mess to sort by dying without a will.

This is great advice.

But in a classic example of “do as I say, not as I do”, we’re not always that great at following through on that ourselves. I started my role as Development Manager with the sobering realisation I have none of this in place myself. Moreover, I didn’t really know where to start. I knew what these things were, I knew where to find all the information about them on our website, I knew I’d get round to it eventually. But people have died waiting to get round to things eventually…

To say I’ve done nothing isn’t strictly true. I have talked. Like many people, I’ve had the “songs you’d have at your funeral” pub conversation, and somewhere there’s an e-mail to some close friends with detailed musical directions, including a graveside singalong I wouldn’t really expect them to fulfil (even if they were still around to deliver it). And yes, it would be a graveside singalong. I expect most of my nearest and dearest to know I want burying, not cremating.

But that’s exactly the problem – I expect them to know. This is not noted anywhere, except now here in a public forum (and exactly what weight does electronic media have?) What if my nearest and dearest aren’t around to bury me? What if my grief-stricken friends can’t find that half-joking e-mail they’ve forgotten I sent them 15 years ago?

The other thing I can say is: at least I do know what I want. The matter has been given due consideration. I’ve discussed it at enough death cafes over the years (not that you should need a café to talk about these things). But actually - do I really know what I want? I can plan my funeral like other people plan weddings, no problem, but that’s the easy bit. That’s the thing that will definitely be happening. What about the things that might happen? One of the things that strikes me is I don’t have the medical knowledge to know what sort of things I should be considering. If I’m 97 and unable to breathe without intervention, it might be time to let me slip away. But how often is it that clear cut? I want to save my loved ones the agony of dilemma in all circumstances where I’m unable to represent my own feelings. But exactly what circumstances should I be considering? What interventions should I be permitting or denying?

There’s one other thing pressing on my mind. Part of the reason I’ve never done any of this stuff before is 1.) I’ve had no assets to leave behind, 2.) I’ve never had anyone particular to leave it to, 3.) my life has been so changeable, that as soon as anything was drawn up, it’d need changing again. Until now, the approach had been: my parents brought me into this world, they can see me out of it if needs be. Many people will find themselves thinking similar thoughts, assuming the same things about the family around them. But now I’m recently engaged, co-habiting and a new father. Things now affect others much more. And, as I’ve already learned, the assumptions we make about next of kin and what they can take care of, are not always true.

And so, in the course of however many blog posts it takes, I’m going to get my house in order, and explain how I went about it, how it felt, and what I learnt. Hopefully, I’ll feel more empowered when I’ve done what needs to be done. Hopefully, I won’t die before I’m finished. But you never know…

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