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So, I'll start by introducing myself. My name's Amber. I'm a nurse and midwife by background. Most of my previous work has been in the NHS, working across both inpatient and community settings. I now work for Compassion in Dying as one of their specialist nurses. So this involves speaking to people across the country on our free nurse-led information line and via email about planning for their future care, empowering people to make decisions around their health, particularly at the end of life.
So, as I said, I'm gonna spend the next hour or so talking about how we can… how you can prepare for the end of life, specifically by documenting your wishes. We will cover different options to plan and document your wishes for yourself, why planning ahead is so important, and how it can help us all to achieve an end of life that aligns with your wishes and values. We will also touch on some of the barriers to planning and some of the unfortunate implications of not planning. So this session is an overview over how you can plan ahead. You may finish with questions or wanting to know more, and we will let you know how you can get in touch with myself and the team for more information.
Okay, so just a little icebreaker now. Um, I realize this is quite high-tech and I haven't done this before, so don't worry if it doesn't work, but maybe Carly, you can give it a go for me. Um, but there's a little QR code in the corner. If you have a camera phone, you can scan it and just type in a word of what comes to mind when you think of advance care planning. And I just want to start out… So, sorry, whilst you're doing that, hopefully the words will appear on the screen, but I just wanted to start out by saying that we hope this will be an insightful and interesting conversation. We know some people, as Carly said, find it uncomfortable talking about death and dying, so please do feel free to take a break at any point of the webinar.
What we find at Compassion in Dying is that there seem to be a lot of great initiatives around death and dying at the moment, which help break down the taboo and stigma around death. You may have heard of things like death cafes. But in our opinion, there is not enough out there that discusses how to actually record your wishes, which is where we come in.
Um, I don't know if this is working, Carly (laughs). We did give it a go before people came in, but if not, we can just move on. That's absolutely fine. Yeah. It's not working for me. I've just sent another one in, so maybe it didn't (laughs). That's okay. No worries. Can you see the s- slides okay though, Carly? They're moving and everything. Yeah, absolutely fine. Brilliant. Great.
Okay. So one of the key things we've learned through our research and from what people tell us on our information line is that there's a worrying disconnect between what people want at the end of life and what they're actually doing to prepare for it. Lots of people across the UK have very strong views about what happens at the end of their life, and very few of them would want a doctor that barely knows them to be making final treatment decisions for them. But despite this, less than 10% of us formally document our end-of-life wishes or give anyone the formal decision-making authority.
So why is this? People often don't know what their options are, which is why sessions like this are really important. Many people think that, understandably, being a next of kin or being married to someone for a long period of time is enough, and people wrongly think a solicitor is required to do anything that's legally binding. And this is really sad because that could be a financial barrier for many people and a lot of the time, it just isn't necessary.
So we'll use the time this evening to provide what I hope is an informative overview of how decisions are made when you're very unwell and how you can think ahead and prepare for these decisions well ahead of time if you wish to, helping you to remain in control when you're so unwell that you can no longer make the decisions for yourself.
So I'll just briefly explain who we are at Compassion in Dying. Simply put, we're a national charity that supports people to prepare for end of life by talking about and then documenting in advance their treatment and care wishes. We believe that everyone should be given the information and support needed to make decisions about their treatment and to plan ahead in a way that helps to ensure that their wishes are known about, and if they one day lose the ability to communicate these wishes for themselves.
So how do we do this? As I mentioned, we do it on our nurse-led information line. We provide free resources by post. We have an online living will service that the NHS website actually signposts to. And whilst we used to focus entirely on supporting people to plan ahead for end of life, more and more, we're helping people who are having difficulty right now with their own wishes being respected, or difficulty advocating for a loved one whose wishes aren't being respected.
So let's just take a little moment to think about how decisions are made. When making decisions, it's important to consider mental capacity. I'm sure most of you know what having mental capacity means, but to recap, it means that a person is able to make and communicate a decision for themselves.
If someone is unwell and a decision needs to be made about what treatment to have at end of life, people who have capacity will make that decision themselves, even if they want to refuse a life-prolonging treatment and that decision brings about their death. It's their decision. But if you are unwell and you lack the ability to make these sorts of decisions, then a doctor will need to do this in your best interest, unless you have some form of formal documentation in place already that covers these decisions. I'll be talking more about the ways you can do just that, and how you can put those documents in place.
Now I'm going to give a bit of an overview of the ways you can do this for yourself and with your healthcare professionals. Please, please don't feel you have to memorise all this information. It's a lot to take in. It can be really overwhelming sometimes.
We’re going to start with advance statements. I like to think of advance statements, I don't know if anyone remembers that programme, but This Is Your Life . It's kind of an overview of who you are and things that are important to you in your life and you as an individual. They can be really useful in documenting, for instance, your preferred place of care; your preferred place of death, such as wanting to die at home, in a hospital, in a hospice or a nursing home; how you would like any religious or spiritual beliefs to be reflected in your care; what you might like to be called, so you might be called David on your birth certificate, but no one calls you David and you want to be called Dave; what you like to eat and drink; how you like your cup of tea; this sort of thing.
The advance statement can be shared with your family and healthcare professionals. This can be as detailed as you like. It's really helpful in terms of supporting your environment and care needs being met when you might not be able to express these preferences. They can also help open up conversations with loved ones. But it's important to note that advance statements are not legally binding.
Moving on to advance decisions. These have lots of different names, which can be confusing, so sometimes people call them living wills, advance decision, advance directive. The proper name is advance decision to refuse treatment, ADRT for short, which is what I will use for the rest of the webinar, but they're all the same thing.
An ADRT is a legal document in which a person can refuse specific medical treatments in the future, even if this means refusing a certain medical treatment that may lead to their death. It's only used should they lose capacity to make those decisions themselves. It's legally binding in England, Wales, Northern Ireland. It's not legally binding in Scotland. However, medical professionals are expected to take them into account when making any best interest decisions.
Moving on to lasting power of attorney, sometimes referred to as LPA. It's important to note that lasting power of attorney refers to health and welfare, as sometimes it gets confused with LPAs for financial decisions. Lasting power of attorney for health and welfare is where you can officially appoint someone you trust to make decisions for you. Giving someone power of attorney means that you give another person the right to make decisions about your care and welfare.
You need to complete this form whilst you're able to make decisions, but it will only be used if you later lack the ability to make or communicate the decision yourself. You don't have to be ill or old to complete an advance decision form, but you must be an adult and you must have capacity to make the decision at the time of completing the form.
To recap, you can use this form to refuse any medical treatment you don't want to be given in the future. It's only used if you are unable to make or communicate this decision for yourself. It's legally binding in England, Wales and Northern Ireland, not in Scotland, but usually they are followed there. At Compassion in Dying, we provide these for free and support people to complete them.
Once the ADRT or forms have been completed, they need to be signed in the presence of a witness who also signs and dates the form. It is then ready to share. The witness can be a friend or a neighbour. It doesn't have to be anyone official like a solicitor or a doctor. We suggest that people make copies of the completed document and share those as widely as you can — for example, with your local hospital trust, your GP, your specialist nursing teams, friends and family, a copy at home, and local ambulance services. Record-sharing and communication can be quite poor in the NHS, so everything you can do to make sure it gets to the right people is important.
Sometimes it can be confusing not knowing which form is right for you, especially as some of them sound similar and cover similar information. To make things more complicated, there isn't a single standard form across the UK. You may have heard of things like a RE:SPECT form or DNAR forms. These are useful documents that can outline clinical recommendations and approaches, but they are not legally binding. They can work alongside person-led forms like ADRTs or LPAs, as long as the information doesn’t clash.
It's not a case of one trumping the other. It's up to you which ones you want. You may choose one or a combination. It's about your choice and your care, empowering you to make those decisions.
Completing the forms is an important part of the process, but it's just the beginning. Sharing your forms is just as important. Print them, keep a copy in a safe place, share them with loved ones and healthcare professionals so they can be uploaded to your medical records. Compassion in Dying also provides wallet-sized cards to inform people that you have an ADRT in place when out and about, instead of carrying the forms.
Finally, here are some next steps to consider after tonight's webinar. Think about what matters to you. We always encourage people to have conversations with their loved ones. These conversations can be difficult, but many people wish they had them earlier, before it was too late. Speak to those important to you about what really matters and what you want to happen to you at the end of your life.
Record your wishes. You can go on our website to complete the forms or call our information line to request them by post. We can also review your forms and provide guidance if you're unsure about what to include. You don’t have to do this alone.
Our information line is open for a small window of time as we’re a small nursing team, but if you don’t get through, you can email us and we’ll call you back outside of those times. We’re hoping to extend our opening hours when the team expands in the future.