2.1 Preparing for death
In the next activity, you will explore personal perspectives on the end-of-life and preparing for death and the extent to which they draw on these contemporary components of a good death.
Activity 2 Preparing for death
Timing: Allow about 1 hour
Part A
Watch these three extracts from a BBC documentary A Time to Live, which explored the perspectives of people who had received a terminal prognosis. Although the interviewees were not specifically asked about their views on a good death, their interviews nonetheless reveal some interesting perspectives on the issue. For this activity, you will watch excerpts from three people: Kevin, Anita and Jolene.
As you watch the films, click the drop-down tabs to indicate if you have heard examples from the interviews that map onto the components of a good death outlined by Borgstrom (2014) and Cottrell and Duggleby (2016). You have the option of ‘no’ and ‘not sure’ as well.
Download this video clip.Video player: Video 1 A Time to Live: Kevin
Transcript: Video 1 A Time to Live: Kevin
[MUSIC PLAYING]
[TEXT ON SCREEN
Introduction]
KEVIN
I’m Kevin. I’m 69 years old. And four months ago, I learned that I had incurable cancer.
INTERVIEWER
What sort of cancer?
KEVIN
It’s prostate cancer, which has spread to my bones.
[TEXT ON SCREEN
Background]
I believed I was indestructible. I think a lot of men do. I look in the mirror, and I see 18. And I think, why is my hair not brown? It must be the light that’s wrong. So I did have that male sense of I’m going to go on forever. Yeah, I did. Yeah.
My first wife died of cancer at the age of 49. But I only had a vague expectation that I would die one day. And what this gives you is clarity about that. Real clarity.
My wife was with me, and we wanted to know roughly how long we could expect that I would live. Because it’s so important, it felt at the time, and it’s right-- to know how long you have helps you develop the game plan for coping with it. If I had a three month diagnosis, I think I would be absolutely focused on the final stage, how I wanted to die, where I wanted to die, and those things I had to get sorted before that point arose. Whereas if you have more time than that, you will think about those things, but you will also have more time to enjoy the days that you have.
[TEXT ON SCREEN
Coping Mechanisms – Being Positive]
The first choice is that there is no point to being angry. There’s no point in being disappointed. What we’ve decided to do, talking about it, is we’re going to live each day as best as we can, take each day as a gift, and say, what can we do today. And not big things-- little things. Go for walks, enjoy getting a bird table, as we have, and watching the birds come. Doing things each day, and at the end of the day, say, hey, that was great, wasn’t it?
INTERVIEWER
Do you manage to laugh a lot?
KEVIN
Oh, absolutely. Absolutely. You have to laugh at yourself. You have to laugh at the vanities. You know I’ve got a chemo haircut now. I used to comb my hair very carefully, and I’ve given up on that.
You have to laugh at yourself and the situation, is find humour, because humour is warm, and humour feeds on yourself. What you, what I don’t want is any bitter, there is no room, there should be no room, for bitterness. Now, I’m saying that as a 69-year-old. And I do know if I was 19, I may feel differently. But I am not bitter about where I am. I’m grateful.
[TEXT ON SCREEN
Coping Mechanisms – Project Management]
If you said to me, did I want this project, I can think of other ones I’d rather have than project managing my own death. But the truth is, we all have, we’re all going to die. And I think we forget that in our lives, that every life ends. And to have the chance to organise and do things and make productive use of the time that’s left is a real, real privilege. And I’m grateful for that chance.
For somebody whose dad drop dead at 64, who went out the door to go down to the doctors to get a test result and he dropped dead in the high street, so my mother was never able to say goodbye, it’s a huge privilege to know that we’ve actually got some time. We don’t know how much time, but we’ve got some time to still enjoy things together, to put our lives as much where we want them to be as possible. It’s a real opportunity to live the rest of my life as positively as possible.
[TEXT ON SCREEN
Lifestyle]
You read all the stuff about diet, and I know that I could become a green tea-drinking vegan, and that might give me a little while longer. But I don’t want to change what I eat and what I drink and what we have fundamentally, because it’s part of who we are. And it’s part of the pleasure we take from everyday life.
So we might – I’m trying to eat a little less chocolate. And I’m trying not to eat blue cheese. And those other things which, at the margins, may make a difference. But the things that have got me to 69, there’s no point in junking them now in case it gave me another two months, because it’s given me the 69 years I’ve had. And that includes a glass of wine.
[LAUGHING]
INTERVIEWER
Good for you.
[TEXT ON SCREEN
Relationships – Wife]
KEVIN
I am on a journey. I’m hugely lucky I’ve got a supportive wife who’s on the journey with me for as long as she can be. But there’ll come a point where our destinations diverge, because I’m going to die and she’s not. And she’s going to have a life beyond. And I see my duty as her husband is to help her approach that new life as positively as she can.
I’ve organised a kind of a list of things that over the years I’ve done rather than she’s done. There’s a Word document of all of the things that I need to share with Jenny, and we’ve been through nearly all of them. So there won’t be anything that she’ll ever have to say, how did Kevin do that. And that gives me great comfort, because it means that I’m loving her till the last possible moment.
[TEXT ON SCREEN
Intensity]
When we both worked full time, essentially you worked in the week and you lived for the weekend. What we now do is we make every day matter. Since the diagnosis four months ago, we’ve actually had some of the best times of our life. And we’ve talked about it. We’ve said what a great day today was. We’ve never felt closer.
There’s an intensity about your life when you know it’s a finite one that you just, I guess, take for granted when you think you might live forever. If you’d said to me, would a dying person feel a new intensity, depending on my age, I probably would have found that unimaginable. I’d thought they’d have been sad and down and angry.
But that is not how I’m feeling. And I know it helps I’m 69, but even so, the gift of life is somehow reinforced when suddenly you’re reminded it’s finite.
Video 1 A Time to Live: Kevin
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Download this video clip.Video player: Video 2 A Time to Live: Anita
Transcript: Video 2 A Time to Live: Anita
[MUSIC PLAYING]
[TEXT ON SCREEN
Introduction]
ANITA
I’m Anita. And two weeks before my 70th birthday, I was diagnosed with motor neuron disease. I always thought I was going to be that old lady of 100 that you always read about in the paper that’s parachuting out of a plane. That was my idea of myself.
[TEXT ON SCREEN
Coping Mechanisms – Being Positive]
My life isn’t about motor neuron disease.
INTERVIEWER
What’s it about?
ANITA
It’s about going out and having fun.
[LAUGHING]
INTERVIEWER
Good for you.
ANITA
That’s what it’s always been about. You know, as best as I can, without hurting anybody, I just want to live every minute of my life to its utmost.
INTERVIEWER
Is there anything about knowing that you’ve got a limited amount of time left that you think is a positive?
ANITA
Oh, there’s lots of positives.
[LAUGHS]
That means I can make plans for my end, that I can sort all my affairs out. I know that it’s going to happen.
You never know how you’re going to end up when you live alone. If I’d have lived to be 100, how would I have, what would have happened? I haven’t got that uncertainty now. I know I’m not going to. So I don’t have to worry about that.
INTERVIEWER
Is that quite a relief?
ANITA
Yes, absolutely, completely relief. It’s the quality of life that’s important, not the length of time you live. Obviously, we all want to live a wonderful, long life, full of quality for a long time. But if that’s taken away from you, if the length of time is taken away, you’ve absolutely got to make sure you’ve got the quality every day.
[TEXT ON SCREEN
Aloneness]
I’ve been alone now for seven years. So I suppose I’ve got used to it. I miss not having my husband here. We had each other to discuss problems. And so you’re on your own. You’ve got nobody to talk to about things. And you’ve got to make the decisions yourself. And that, I find hard.
I’m not worried about dying at all. That doesn’t bother me. We’ve all got to go. What I want to know is that I’m going to die with some sort of dignity. I would preferably like to choose when and how I die.
I’ve decided that I don’t want to see this disease through to the end, because it’s particularly horrible. In my opinion, it’s worse than cancer. Because my brain will remain as it is, while my body completely gives up in every way. And I will just be a blob in a bed, and I don’t want to be that.
Unfortunately, I cannot take an easy way out in this country, because it is against the law at present. So I am forced to look at other options.
INTERVIEWER
What have you decided then?
ANITA
I’ve decided that when the time comes, I will go to Switzerland. I don’t want to go, and I will have to go too early because I need to be fit enough to travel. But I haven’t got, I don’t see any other option. I really don’t see any other option. But I’m not happy about it.
INTERVIEWER
You’re not a rich woman, are you?
ANITA
No.
INTERVIEWER
So how have you managed to afford it?
ANITA
It’s taking every last penny. It will take every last penny I’ve got. My children are grown up. They’ve got families of their own. They’ve got lives of their own. They don’t need me. And I live on my own, and I’ve got not even any pets. So I feel sort of free to go. And I think those people that don’t go, don’t go because of the other person, or the children, or whatever keeps them there. There’s nothing to keep me here now.
So I don’t want my children to be upset. I want them to remember me as a person who enjoyed life, had a good time, and lived every minute of it. And then they’ll have happy memories hopefully. I hope they will.
[LAUGHS]
INTERVIEWER
Do you feel brave?
ANITA
No, not really. I’ve never felt brave. I just, no. It’s not hard. It’s not a hard thing I’m going to do. In fact, it’s harder for the people, for other people than it is for me. I’ve got the easy part.
INTERVIEWER
Why do you think it’s easy?
ANITA
All I’ve got to do is go on another trip, another airplane ride, drink a drink, off I go, wonderful. That is how we all want to go, isn’t it?
Video 2 A Time to Live: Anita
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Download this video clip.Video player: Video 3 A Time to Live: Jolene
Transcript: Video 3 A Time to Live: Jolene
[MUSIC PLAYING]
[TEXT ON SCREEN
Denial and Hope]
JOLENE
I’m definitely, like definitely in a bit of happy denial. But I know it and I don’t really care. I’ve got to see a future. And even if that’s only in the form of dreaming that I’m old and grey, that’s fine by me.
Realistically, no, I won’t be old and grey and 80 years old. I know that that won’t happen. But actually, I can dream that. And I can believe that that will happen because that makes me feel better. I do kind of have my head in the clouds, because what I actually hope is unrealistic.
In some ways I think it’s quite healthy, because if I were to just admit to myself, like, oh, I’m going to die and I don’t know how long it’s going to be, I think I’d be worse off than I am now.
INTERVIEWER
Think you’d die quicker?
JOLENE
Yeah.
[MUSIC PLAYING]
[TEXT ON SCREEN
Sadness]
INTERVIEWER
Quite a lot of the people that we’ve interviewed are older. And quite a few of them have said in a funny way it’s a blessing, that it’s allowed them to get their house in order, it’s allowed them to do this. I think as a young person you don’t think of it--
JOLENE
No.
INTERVIEWER
[INAUDIBLE].
JOLENE
It’s not a blessing. It’s not something that I think, now I feel so differently about life because I’ve had this horrible experience which has changed me for the better. That’s not the case. If I could take it away tomorrow, I would. If I could change one thing about my life, it would be that I wouldn’t be going through this.
But I know I can’t. But I feel angry that I’m young and I felt like I was so able and had the whole world at my feet. And now I don’t have that. And I have, I guess, I have like a ditch that I’m trying not to fall down.
I think what makes me upset the most is the impact that it has on the people that you love, being ill, the impact that it has on your family. And I try so hard to be positive for my whole family and for my parents, my siblings, and everyone. But actually, it’s really unfair.
And I think it’s heartbreaking because they know that they can’t fix it for me. I think they find that really hard. Because I think as a parent, you probably, as a parent you probably just want to protect your children. And unfortunately, this whole situation is out of our control. And they can only do so much. And I think it’s really hard to see. You know it’s not only me that it affects being ill, but it’s my whole family.
[MUSIC PLAYING]
[TEXT ON SCREEN
Death and Dying]
I can’t explain to you how hard it is to feel like your life is going to be over before it’s begun. That’s really unfair. I definitely know that I’m going to keep fighting, but I know that eventually I won’t win. But if I admit that I’m not going to win, then I’ll lose sooner.
INTERVIEWER
That’s quite scary, that admission, isn’t it?
JOLENE
Yeah. Because ultimately, we all know that I’m living on borrowed time. That’s pretty hard to comprehend, but we all know it’s true.
INTERVIEWER
Breathe deeply.
JOLENE
Yeah, that’s a real tough one.
When I’m less well, I guess I’ll end up going and living at home with my mum back in Northampton. And I don’t really want to do that any time soon or by choice, because to me that’s the beginning of a downward spiral. I think once I’ve done that, whenever that might be, it could be three months, it could be three years from now, I kind of know that that’s the beginning of the end. So I’m going to stay standing on my two feet independently for as long as I can, I guess.
What I find really hard generally is knowing that I don’t have a future, realistically. It’s knowing that that’s been taken away from me. I feel a bit, I guess I feel kind of robbed of that. And I’m going to be 30 next year. But realistically, am I going to make 30? I can’t answer that.
Video 3 A Time to Live: Jolene
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Discussion
The answers are collated here for comparison purposes:
| Contemporary Western features of a good death | Kevin | Anita | Jolene |
|---|---|---|---|
| awareness of dying (viewed as a positive) | yes | yes | no |
| preparedness (getting one’s affairs in order) | yes | yes | not sure |
| comfort | not sure | not sure | not sure |
| closure | yes | yes | not sure |
| peacefulness and dignity | not sure | yes | not sure |
| presence of family and being in familiar surroundings | not sure | no | yes |
| personhood (a sense that an individual’s wishes and preferences have been accounted for) | not sure | yes | yes |
| timeliness – death at the ‘right’ time? A dying period that is predictable? | yes | not sure | no |
| control | yes | yes | no |
Part B
Now draft some writing about the films you have just watched. Answer the three questions below. Write one paragraph of about 100 words for each question.
1. What similarities did you identify between the three films?
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2. What differences did you notice?
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3. Did anything surprise you about these films?
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Discussion
A student wrote the following answers:
- I noticed that both Kevin and Anita valued that their diagnosis had given them time to get their affairs in order, and make preparations for their death. They both suggested that receiving a terminal diagnosis had enabled them to make the most of the life they have left. So the awareness of forthcoming death seemed to be a positive – perhaps even something quite transformational. Control over one’s destiny in the final stages of life seemed to be very important to all three people; they all seemed independent and headstrong, wanting to make decisions for themselves.
- Jolene’s interview was very different in tone to Kevin and Anita. Awareness of her forthcoming death did not seem to be a positive for Jolene, and she had no interest in getting her affairs in order. This seemed to be a waste of precious life for Jolene. She also expressed anger, sadness and frustration that the end of her life was near, and that she had been ‘robbed’ of more time. I think age played a big part in how people responded to news of their terminal prognosis. How can a good death apply to someone so young?
- I found Anita and Kevin’s interviews unexpectedly uplifting; I did not anticipate that before I watched them. I was perhaps a little surprised that the people on the film did not speak more about their forthcoming death, and how they envisaged this happening. Maybe people don’t want to talk about this when they know it’s coming? Perhaps it’s just too painful? I was also struck by the strong emotions in Jolene’s interview. How does that relate to ideas about a ‘good death’? It seemed that Jolene couldn’t see anything ‘good’ about her diagnosis, and I wondered what support there was for someone in her situation.
If you have been affected by the issues in these videos, you can call Macmillan Cancer Support [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] free of charge on 0808 808 00 00. You can also call Samaritans free from any phone on 116 123 (it will not appear on your phone bill), email jo@samaritans.org, or visit www.samaritans.org to find details of your nearest branch. The Motor Neurone Disease Association also provides support to people affected by motor neurone disease in England, Wales and NI - 03457 626262 or visit The Motor Neurone Disease Association