Ep 8 - Advance Care Planning

Every decision you make in advance will help make everything easier later. This episode is a must listen for carer’s and family members.
An interview with Glenda Hall,  a senior palliative care nurse and educator with a long-term interest in advanced care planning. 

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Transcript

 Ep 8: Advance Care Planning

Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a loved family member or friend in their last days, weeks or months of life. 

Our episode today is Advance Care Planning

Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago Community Hospice. Today I'll be talking with Glenda Hall, also a senior palliative care nurse and educator. Glenda has a long-term interest in advanced care planning, and that's what we'll be discussing today.

Denise
Hi, Glenda.

Glenda
Hello.

Denise
Glenda, Advance Care Planning, it's a big thing, really, but it doesn't have to be.

Glenda
Not at all. It really, it's a conversation. That is all an advanced care plan is. Usually, when I talk to people about advanced care planning, they say things to me like, ‘Oh, yes, I've done that’, and that means that they've arranged their funeral, which is a brilliant thing, but the advanced care plan is the bit before the funeral, recording your wishes and your wants, and discussing that with your family.

Denise
So advance care planning really is about the living part and the funerals is about the after living part.

Glenda
Absolutely. While a very important thing to be arranging, especially if you want to have your say in it, but it is about the living part before. 

Denise
So an advance care plan is a way of saying what it is you want, when you perhaps can't speak for yourself?

Glenda
it is a conversation, hopefully with friends, family, the important people in your life. Often I think we say, ‘Oh, well, my daughter, sister, brother, they'll know what to do’. Well, they don't always know. Is it the same as what you want to do in a specific circumstance? So it's an ongoing conversation about your needs, your values, your beliefs, and how you want yourself to be treated, if you are unable to speak for yourself.

 Denise
And sometimes family, with the best intent in the world, can have different viewpoints. You know, son might say ‘Mum would have wanted this’, daughter says ‘no, no mum would have wanted that’ and suddenly we have a problem.

Glenda
We have a problem. I think it's an in-house joke within health professionals is that at crucial times, the daughter, who's always a registered nurse, and she arrives from Sydney, and she has all of these ideas about what mum should and shouldn't have, and every other thing in-between, which often can actually create quite a lot of tension, particularly for the family that have been around and caring for mum, over that time.

Denise
So Glenda, you're saying it's a conversation, but actually, we need to record that conversation, don't we?

Glenda
We do.

Denise
I think there's a lot to be said, isn't there, about having some kind of document that says, ‘what do we want to do?’ You and I, we work with people who understand that they're dying, but actually, any one of us can be dying, but we just don't know it yet. You know, there's the proverbial bus going to come around the corner.

Glenda
Absolutely. When I think of advanced care planning, I think of it in sort of like three stages of my life. And at the moment, I'm a well person, and so my advanced care plan that I would want to be used, so I'll be thinking of acute care, perhaps, in some intensive care, because I have been run over by a bus. If I'm in another stage of my life, I have been diagnosed with an illness of some sort, it could be an acute thing like a cancer, or it could be a chronic illness. So my views at this stage will have changed quite a lot. I'm probably thinking more specifically, around what I will be wanting or not. And then there's that third stage, is perhaps when I am nearing death, and there is probably a good chance that I won't be able to speak, to articulate my wishes. So at that stage, I will be very specific probably, about what it is I will want and don't want in my life. it's unique to the person, and it is has to be reflective of what that person's wishes and thoughts are. I think about when I go shopping, I will see these clothes that say one size fits all, and I think, ‘no they don't, they certainly don't look the same on all of us’, I can tell that it's a little bit like an advanced care plan. It is very unique to that person, their thoughts, their wishes, it’s reflective of their values, but communicating the wishes again, is a really important part.

Denise
Now there are a couple of options for doing the advance care plan aren’t there? So you can print one out and do it on paper, you can do it online, we will have the links to those on our website, and we'll give that information at the end of the podcast episode.

Glenda
They can be a little daunting, when you first look at them, it is quite detailed. Great if you've got the time and the energy to be able to put into that. Great things for sitting around the table. Sometimes with family members as well too. You can surprise each other sometimes with our wishes when we think we know somebody so well.

 Denise
This isn't a rigid document. You touched before how your wishes at this point are different to if you had a diagnosis of an illness, to if you were actually told that you were terminal or palliative, so the document can change.

Glenda
Absolutely. I think, for many of us, we think that once we put something down in writing, we think it's set in concrete. Just remember that an advanced care plan is a changeable, it's an ongoing conversation. What I want today may not be what I want tomorrow, and you can update that all the time. So there's a couple of forms, when you go online that you can look at. One is specifically related to your health, and that sometimes if you have an illness that is progressing, that may be a better one to even start at. And again, you don't have to do an advance care plan on these documents, you can write them on any format that you want. I have an advanced care plan in a very different format that's attached to my will. But it's absolutely no good if you write it, and then put it in your bottom drawer in your bedroom, and don't talk or don't give it or share with anyone.

Denise
And nobody knows it's there.

Glenda
And nobody knows it's there. I would suggest sharing it with somebody, a family member, or somebody who has your enduring power of attorney, with your GP, with your consultant. People shy away from these conversations, because they think we don't want to upset somebody. My experience is that people actually have a sense of relief around being able to talk about these really important matters in their life

Denise
There's a great game that you can play as well isn't there, that is a lovely way of getting this discussion going with the people you want to talk to and it's called the ‘Go wish’ game that you can play it online.

Glenda
It is, it's a great conversation starter. It's a game of cards, and you hold up the card and it could say something like, ‘I don't want to die alone’, and then you rate it as being incredibly important to you, somewhat important or not important at all, and you just go with your gut feeling. The things that you find from family that can be surprising. 

I was with a couple once, and he was nearing end of life, and we were playing this game, and one of the questions is ‘Where do you want to die? Do you want to die at home?’. And this couple were very close, and she immediately answered and said, ‘oh well yes, yes, he will want to be at home. You know, that's what he wants’. And he said,. ‘Well, hang on a minute. We haven't actually talked about this’. And so this whole conversation went in many directions from there.

Denise
how wonderful.

Glenda
It was just, it's a starter. Exactly what it is.

Denise
So Glenda, what are some of the things that you might record in an advanced care plan?

 Glenda
Things that are important to you. So what is it that you would like at the end of life, and it doesn't always have to be, you know, the dramatic thing that I want the machine turned off. It can be, ‘I want a family member with me’. It can be that ‘it's really important to me that my hair is washed every other day’ or something, it can be just really important things to yourself. When my mum was very poorly, she would go to the hairdresser still. And I would go, ‘Mum, really, is it worth the effort?’ And she said, ‘yes’. And the hairdresser turned around and looked at me and she said, ‘I would be having this as well too.’. It doesn't have to be these great big things. It can be these, these smaller things that make meaning to you in your life.

Denise
You don't have to do everything either. If you're using that document, you don't have to complete every question, every page. If you think, ‘gosh, that one's not important. I don't really care.’ But actually another part is, ‘oh, I hadn't thought about that. Yes, this is important to me’.

Glenda
It's a conversation is what it is that this document is, it's a prompt, making you think about things that you hadn't actually thought, ‘oh, is that important?’ It doesn't need to be complicated. The advanced care plan, it's a way of recording these wishes of yours. It's a really tidy way to keep things all together.

Denise
Glenda, is it legally binding?

Glenda
Very good question. It does reflect your code of rights in the Health and Disability, in that you are making an informed choice and informed consent about what it is that you are wanting. Most doctors will be very relieved to actually know what it is that the person is wanting and wishing, if there's a crucial decision to be made. So while not being trialled yet, in New Zealand, we are confident that it would stand up in a court of law.

Denise
They would have to have a very good reason to go against your wishes.

Glenda
Yes, yes.

Denise
On that, though, one point is, that while you can say you would like a treatment to be done, they can't be bound by that. However, if you say you don't want a particular treatment, if, for example, ‘I don't want life-sustaining measures’, they are, you know, really obliged to follow that.

Glenda
Absolutely. So you can actually even take that a step further, by putting an Advance Directive. An Advance Directive is a legal document, so that has to go through your lawyer to be drawn up. The example I usually give is that if I have renal problems, I can say, ‘I definitely do not want to go onto dialysis and I decline dialysis under any circumstances.’ But I cannot say, ‘I demand a kidney transplant’. So it's a specific area that you can either decline but not demand.

Denise
Which makes sense. So Glenda, we've talked about the advance care plan and the Advance Directive. How did they then apply around an EPOA, an enduring power of attorney?

 Glenda
An enduring power of attorney, I think, are some of the most important documents that people can actually complete. It can make life a lot easier for yourself and your family if you do have an enduring power of attorney. So you’ve got the two types, you've got your financial, and you've got your health. And the health one is the one that we're talking specifically about here. People think that an enduring power of attorney with health means that you can actually start giving advice, suggestions before it is actually enacted. So an enduring power of attorney only comes into effect when you're not able to speak for yourself.

Denise
If somebody is an enduring power of attorney, then the advance care plan’s really helpful for them, isn't it? because now they've got a really strong guideline of what you want.

Glenda
Absolutely. It's a relief, I think, for all members of the family to know that they are actually fulfilling what mum's wishes are at this time. And it's a hard time. It's a tough time for everybody. But it's also a very special time to know that you're fulfilling what it is that your family member would be wanting. This is about you and your wishes. So I think an advance care plan is something that everybody should be thinking about.

Denise
You said that it's important for everybody to think about. That's quite a key thing really. This isn't just about somebody who has been told they're dying. But actually, if you're caring for somebody, and I've often said where there might be a couple and maybe the wife is caring for the husband, who's been told he has a limited time left, actually then who would speak for her? Because it's easy to assume when there's a couple, that one part of the couple will speak for the other. But actually, you know, we both need that don't we so it might not be me, that I have only a short time to live, but who will speak for me when my partner's gone? Therefore, I need an ACP as well. So it's us sitting down and doing them together isn’t it? It's not me saying, ‘Right! You've been told you haven't got long to live you have to tell me this, you have to fill this out’. Actually, we all need to fill one out.

Glenda
Absolutely. It's really important that everybody has that opportunity. We skirt away from things that make us feel uncomfortable, and writing an advanced care plan does make us feel uncomfortable at times. But it actually can be also very liberating, that you can think that you've got your voice in your care for as long as you're alive. And that's a pretty amazing thing to think, oh and it's also so supportive for your family that they know that you're being cared for the way that you want to be cared for.

Denise
So actually it's quite a gift that you give your family or your friends, the ones who are caring for you  because it takes the weight off them, of making a decision.

Glenda
Totally. It's lifts a burden.

Denise
So we should all be going online, looking for the links

Glenda
And if you can't go online, ask your health professionals, talk to your GP, talk to your practice nurse and say that you've heard about this, ‘How do I access it? What can I do?’ If you've seen your consultant, talk to them. And so have those discussions. As you say, Denise it's a gift that you can give to your family members. 

Denise
Glenda, thanks for talking with us today. It's such an important topic that people need to just be thinking about, how can I make sure that my voice is heard? And how can I give this to my family so that they know what I want?

Glenda
Thank you very much Denise for asking me to join you today. And as you say, this is something that I feel is very important, this can be very liberating, it doesn't have to be complicated, doesn't have to be in jargon. It's your thoughts, your wishes, and you're sharing that with the people that matter.

Denise
Thank you, Glenda. And thank you for listening today. 

This podcast was brought to you by Otago Community Hospice, with support from Hospice New Zealand. If you found this discussion helpful, check out our other episodes of Ending Life Well, a podcast series for carers. You can also find more resources for caring for a person who's dying at otagohospice.co.nz/education