A very informative video from the BBC. Made in partnership with The Open University, with OU consultant DR ERICA BORGSTROM, Medical Anthropologist, The Open University DR SARAH YARDLEY
Palliative Medicine Consultant: It's just something we don't like to think about. DR OLLIE MINTON, Palliative Medicine Consultant: No-one talks about it, no-one really wants to address it. KERRY THOMPSON, Disabilities Blogger: My husband's very much: "Don't want to talk about it. Nope. You're fine." MARY HEWSON, Retired Teacher: I don't want to talk about my death too much with them because I don't want to make them feel more unhappy. CAPTION: NOT EVERYONE FEELS COMFORTABLE TALKING ABOUT DEATH... MIREILLE HAYDEN, Health Psychologist, Gentle Dusk: It's even more difficult if you're faced with somebody that you love who's got a diagnosis and then you have to start this conversation. You don't have the language because you’ve never talked about it. You don't have the familiarity, you don't know how to open the question. CAPTION: DOES EVERYONE NEED AN 'END-OF-LIFE' PLAN? DR ERICA BORGSTROM, Medical Anthropologist, The Open University: In our society we're often encouraged to plan for our lives. Planning for our births, planning for different operations if they need to happen, and also, as an extension of that, starting to plan for our end-of-life care. And that's increasingly important, because more of us have a period where we are dying rather than just suddenly dead. So there's a chance to think about what that period will look like. KERRY THOMPSON: When those questions are looking back at you and someone is saying, "What do you want?" It makes you really sit down and think about all the places that you might want to have your ashes scattered, or whether you want to die in hospital, or whether you want to come home and die, what are you going to do with your animals? Who's going to look after your husband when you've gone? DR SARAH YARDLEY: Families might make the assumption that they will be able to speak on behalf of their loved one, and it's not an automatic thing that they can do that. It's important that they legally nominate a family member by making them a lasting power of attorney for health and welfare. CAPTION: LASTING POWER OF ATTORNEY IS A LEGAL DOCUMENT THAT LETS YOU APPOINT SOMEONE TO MAKE DECISIONS ON YOUR BEHALF ADIL GHANI, Disabilities Campaigner: It's a comfort knowing that my parents have power of attorney and they can make those decisions when I'm not able to rather than a doctor or somebody who doesn't know me very well. DR OLLIE MINTON: Just nudging doctors in the right direction, so actually, "Do this, but don't do any more" or, "This is not what I would have wanted" is incredibly helpful. DR ERICA BORGSTROM: Legaly we can't demand certain treatments, but we can definitely refuse treatments. So people can say they don't want to be resuscitated, or they don't want to have artificial nutrition. MARY HEWSON: I think a funeral plan is extremely helpful. Carl had made one, my husband, before he died. So we did know what he wanted in his funeral and what he didn't want. That kind of practical thing was such a comfort to the family. KERRY THOMPSON: Allow them to grieve for you, instead of having to worry about the 'what ifs'. "What if we've done this wrong?" CAPTION: WHAT DOES PLANNING FOR DYING LOOK LIKE? DR SARAH YARDLEY: We don't turn up and say: "Let's talk about death." Or: "Tell me what you want if I tell you that you're dying." MARY HEWSON: You sent me your Advance Care Plan booklet and I've filled that in up to a point. Although when it came to the, you know, "Do you want your window open or shut? Or your light on? Or what about your hygiene?" And I thought: "No - I can't even think about that." But it is simply a case of getting things together so that it's easy for my family. MIREILLE HAYDEN: By documenting this information now you are at the centre and we, as professionals, and your close ones and family, will do the best we can to make sure you have the care and the preferences you want. DR ERICA BORGSTROM: It's really important that you tell your GP or your healthcare provider what your preferences are if they relate to medical options. It's important to let your friends and family know where they can find that document if it's in a particular part of your house. CAPTION: NOT EVERYONE WANTS TO PLAN FOR THEIR DEATHS... SALLY WHITNEY, Researcher, University of Sheffield: Disabled young people don't necessarily want to be focusing on more planning which is around their illness or their disability. Personally for me I feel like I've spent a lot of time negotiating my health, negotiating the support that I receive, the care that I receive, my diagnoses, and so I want to spend any extra time or extra energy that I have really living, and making sure that I'm doing the things which I think are important. DR ERICA BORGSTROM: Within healthcare these days, there's an expectation, both from healthcare professionals and patients, that people can have a say about what's important to them. However that can put a lot of pressure on people to make sense of quite a vast array of information and at a time when they actually might want to defer the decision making to someone else. DR SARAH YARDLEY: If we have to, and you're not able to tell us what you want, we will do what we think is best for you from what we know. It's not a yes, you've got a plan or no, you haven't. It's more of a kind of evolution of thinking. DR ERICA BORGSTOM: And you can revisit them and change them as your life is progressing or as your values are changing. MIREILLE HAYDEN: It's a true gift of love because you're taking away that burden. DR OLLIE MINTON: Put your wishes down, file away, and forget about it. Focus on the important bits of living and getting on with life. KERRY THOMPSON: We insure out house, we insure our cars, we insure our pets. Why are we not insuring ourselves? ADIL GHANI: Nobody's going to say, "Well Adil didn't say what he wanted". Because I did and it's there on paper.