When people reach near the end of their lives, what might they expect?

I think one of the hardest things is because pancreatic cancer can grow and spread very quickly it is a hard time for them to take in what’s happening to them. And sometimes they may not even get the opportunity to have any form of anti-cancer treatment.

So needing to come to terms with death and dying can be one of the hardest things. Everybody deals with that in different ways, and both the hospital team and the community teams will be there to try and help them to come to terms. Sometimes issues like needing to put affairs in order, particularly for example for younger people with young children, needing to really very quickly try and make provision for a family, can be very hard at a time when also people are developing a lot of symptoms. So it is a very complex and very difficult time. And so again both hospital and community services are geared to try and support people in every way that they can depending upon the individual’s circumstance.

There was one stipulation that I made that was you know, whatever happens, I said, Obviously you’ll know, or any other, you know district nurse or whatever will know when it’s coming closer to the time. You know, Do I have to stay here Because I don’t want to stay here, I do not want to die here.

Where would you like to go?

I’d rather be, well preferably in a hospice, there’s a really nice one in the next town.

Have you been to see it?

Yes, my husband had an appointment with the psychologist I think it was, because he was getting, he was getting really stressed out about it all, and he just couldn’t cope. So the Palliative care nurse made an appointment for him to go so we could talk about what was going on in his mind. And I was there with him when he went. And it’s a nice place. It was very nice and calming. When you go there you can even have massages and all sorts of alternative therapies and things like that. I thought, oh that’s not bad.

Have you tried any of those already?

No. But
So you have to go, you have to go there to have them?

Yes.

Okay.

But they’ve only got ten beds so it’s not a certainly, a cert that you’re going to get there. You know. I said I don’t care if I’m in a little corner in the hospital, I said, as long as I’m not here. I do not want to be here. I said, so, I said, Can you write that down in your little book So she wrote it down in her book, I don’t want to be here. She said, Well why She’s, she said, Its, a lot of people would rather be at home I said, No I said, I don’t want the kids walking in and saying, oh that’s where my Mum died

You know, or like my husband getting in bed and thinking, Oh my wife died in here with me

Was it private care before when she had the diagnosis etc?

Not the diagnosis, but after diagnosis she went privately. It was very cold, the room. I remember that, we used to sit with blankets on, and outside it was about 80 degrees. And then the night before she died was the, at about 11 o’clock at night. Well I should say, there was a, she’d already looked at hospice care, and her desire was to die in a hospice, not to die at home, and not to die in a hospital. And she had looked at a particular hospice which she had, she felt was where she wanted to die. And so my sister and my father had visited, I hadn’t actually visited it.

And when we realised that she was significantly unwell during this three week stay [in hospital], we talked to the palliative care team about the transfer to the hospice. But her illness deteriorated at that point so quickly that they were making plans to move her, but the concern was that the move in an ambulance, which would have been at least an hour and a half in ambulance from where she was, would’ve been really, really disruptive.

As I said we were lucky enough that she was in a private room, she wasn’t on a ward. If she’d have been on a ward I think we’d have said, Bung her in a, we’ll take her to the hospice, it doesn’t matter But she was in a private room that was quiet; it was very good nursing care. We could stay there, so we didn’t feel an enormous need. If she’d have been in a ward we would have done. But we kept going with that, so about 11 o’clock before, the night she died, was the first, was the only time she lost orientation. And she asked for us, we came, well I was there staying overnight in the hospital. There was my father who came and she was distressed, Where am I? What’s going on And she had a lucid conversation where she said, I don’t really want to do this anymore. I’ve had enough And we said, don’t do it. You don’t have to do it anymore. it’s really, you don’t have to do anything you don’t want to do And she went to sleep, and she died at 11 o’clock the next morning.

So the ending was, and the only period when she was distressed was very, very short, which was a real blessing for her, and really for everybody else. And although she died in hospital she, she died in her own room, she died with people, she was never on her own, there was always family with her, and it was as dignified as you can have in a hospital setting.

And have you sort of thought about making memory boxes or anything like that, for the children?

Yes, they’re on the way. They’re, they’re already started. I’ve got them

Can you explain a little bit about that for somebody who doesn’t know anything about it?

I’ve put them in, my two daughters; they’ve got the same sort of box. They’re just a simple box that you can buy anywhere. You know with the handles, there’s them that you sort of stack you know like in different sizes, things like that. I’ve got them both one of them. My son’s might as well just be a plastic box, with a lid on it. But I’ve got him one of them. I’ll, I’m just putting in things like, my perfume. You know a bit of my perfume, and cards. I’ve wrote them birthday cards up until my daughter till she’s 21, my youngest one.

Oh that’s lovely.

My eldest daughter, there’s a couple of cards until she’s 30, and my son till he’s 21. And there’ll also be gifts in there. There’ll be gifts I’m going to give to my sister to keep hold of.

That’s lovely.

So my youngest daughter and my son will have, well, my youngest daughter will have one for her 18th and one for her 21st, and my son for his 21st, and my oldest daughter for her 30th.

That’s a really lovely idea.

You know, just a bit of jewellery or something. Just to say, I’m still here,

Yes

I’m watching.

Yes, that’s a really nice idea.

Letters, I’m going to write letters and things like that you know. The bit’s that they’ve given me over the years. Like I’ve still got you know the little cards that they write when they, they’re in nursery. And you look at them and you think, Oh my goodness what the heck have they got here. And you go, This is lovely. And I know, I’ve kept them. And I keep finding things as I’m moving stuff about and sorting things out. I’m finding bits and I go, Ah I’ll stick that in the memory box.

That’s really nice.

You can put anything in. You can put poetry in them. I got a leaflet off my palliative care nurse. She got it off one of the other nurses that works at the hospice that she’s attached to. It just tells, you know, things that you could put in there. Like you could even do a tape of your favourite songs, tape of you talking or a little video. Things like that.

What are your feelings about the living will, do you

I’ve got a living will. And I’ve just made sure that it’s up to date and signed. And I think all my family know that’s how I feel. I think they respect that. I just think it’s very much easier for everybody around if you, if you feel like that that everybody knows what you want. And then there can’t be guilt between the family about whether we should’ve tried to keep her alive or not.

So it’s for your family, do you actually think it will make any difference in the hospital?

I think it’s a signal to the doctors that this is what you want. And I think it does make a difference, in a way that’s quite difficult to measure. But I think, and they don’t always act on it, and one knows of cases where they haven’t. But I think it’s very helpful for everybody if you have one, if that’s what you want.

But I think it’s something that some people find very difficult to do even if that’s what they want and difficult to discuss with their family. And anyway unless you’ve actually discussed it with the family when it happens, nobody might know you’ve got it and it may be a bit late then, which sometimes happens.

But as a GP, I’m seeing more and more people who are giving me a copy of their living will. I mean it’s quite interesting, ten years ago, I think it was a rare thing. But now I mean it’s all on the computer, it says living wil. And I think that’s a help really. it’s a help, certainly a help for the family.

And they, they said to me, I think it was at that time they said, Well, if anything does happen do you want to be resuscitated And I said, No Because I thought I haven’t got any near relatives, nobody lives near. If I get into a state where I am resuscitated and then I’m sort of living life as an invalid of some sort I don’t want that. I’ve had a good life, and nearly 82 and I thought right, I am now, but then I thought, even then I thought well, no, if I’m nearly going to go, let’s go. It doesn’t worry me, and I’m quite happy with that situation. I’ve got a handicapped son, but he’s in care, and I see him every fortnight, but I know he’s being looked after so I thought right, no, let it be. And the two daughters are quite happy with that suggestion, so that’s it.

Did you have to sign a piece of paper to say that?

Yes, yes.

What did it say on the papers? Did it say, Do not resuscitate

No, that’s right, yes, yes, I think it was a red piece of paper if I remember rightly, red form I think yes. But, I thought no, that’s it, if things get really bad I’d rather go at that stage than hang on and have people trying to keep me going. What for? If you’re a real invalid, so that was it.

Did you ever discuss the subject of assisted dying? Because that’s been in the news a lot lately?

It has been in the news a lot, yes. No we didn’t. One of the things I suppose again from our Catholic faith is that it’s, assisted dying is a big no. We had discussed it in terms, because it’s always coming up on a, in other, some of the other people felt is not worth living. But this is where Martine’s friend, the one who’d been through the holocaust was such a strength to her, because she’d seen so much death, and said, No don’t worry about that. You know, you’re dying. Make the most of the now

So yes, no we never got into a discussion. If she’d had years and years of acute pain, would we have talked about it? I think we probably would have talked about it because it’s natural, because she went through ups and downs. I mustn’t say faith always is a steady keel, it isn’t. And sometimes when the markers had gone up dramatically again, we’d go back to the Chapel and she would say, Look I don’t think I’m on good terms with God today. We’ll leave the praying for a couple of days And she’d, because there’d be all these human reactions, but for those, not despair, but you know when she was really despondent, she never suffered from depression any long term. She’d get periods of great down, but just for a couple of days.

But you said assisted dying would be against your religious faith anyhow.

Yes it would, it would be, and yes, that’s right, but equally what is not against our faith is keeping alive with extraordinary means. In other words, if it’s clear that the treatment, to continue it was, is going to lead to great suffering and distress, you’re not bound to continue the treatment, you can make the decision I’ll stop the treatment.

Yes, and make the decision not to resuscitate as well?

Yes, yes exactly. As long as food and water are always available, the normal means of life, then that can, and equally we never actually had a need to discuss it, but things like morphine, painkillers, if it had reached the point that she was in such pain that she needed levels of morphine which had the other effect of shortening her life, that’s allowed as well, because there’s no intention to kill, but the treatment might hasten death and as I say that, that’s perfectly normal.

I don’t think my attitude has changed. I think it’s become firmer that I feel very strongly about dignity in dying and that assisted dying, not assisted suicide, there’s a very important difference, is something that should be a choice. Now I may or may not want to have it. I feel I will want it when I feel I can’t cope any more. And there are some days when I do feel that now. But it’s not something I would rush into just because of a day of feeling like that. I don’t think anyone would actually. And we know from other countries where assisted dying is, physician-assisted dying I think it’s called, is allowed, that only a small percentage of people take it up. But I would feel much more comfortable and be able to approach my death in a better frame of mind if I knew that was an option.

I feel, I mean it’s one of the things I have done in the last five months and have been able to take forward is that there was an article written in The Lancet by someone in the House of Lords, talking about assisted dying, or she chooses to call it assisted suicide. And it prompted me to write a letter in reply to that. Because I felt very strongly that the, the idea, which is her idea, that if you have good palliative care you won’t need it is just wrong. And I’ve certainly had patients who have had very good palliative care but they’ve still not wanted to carry on for the last few weeks of their life. Now one never knows how long the last few weeks of one’s life is going to be. And, you know, one doesn’t know at what point one might say, I would really like to die at this point But I feel very strongly I don’t want to go to Switzerland. I don’t want to be away from my home, from my family. So that prompted me to write this letter. And then, as that didn’t get printed until very recently, I wrote a personal view for the British Medical Journal and have had many, many, it must be over a hundred replies to that, emails, people supporting me. I think there were only two where people were not supporting me. And of course people would write to support me, either friends or colleagues, but a lot of them I didn’t know. But one of the people who wrote saying that they didn’t support me said he hoped I would respect his views. And I do respect his views. But he obviously doesn’t respect my views, because if he did he would allow, he would be saying, Yes, you’re right. I can die as I want, but you’re allowed to die as you want And I don’t think it’s going to be so difficult to have a change in the law which allows people to have assisted dying but at the same time protect the vulnerable, especially for terminally ill patients. I mean I think there is a whole issue about people who are depressed or people who have a chronic illness. But I think if you’re terminally ill, I, I think it’s a much clearer distinction. And I think the people who are opposing it so vehemently are, I mean religious groups are obviously, I just think they’re wrong to not see the other side of the argument.

And one of the things I did, and I knew my husband wouldn’t want to do this, but, and I feel slightly bad about putting my best friend really through it, is that I wanted to go and see the crematorium and see the cemetery and just decide a bit more about what I wanted to do when I died. And so one very rainy afternoon we went down to the Co-op to look at, to talk to them about funerals. And we wanted to see coffins. And I mean it sounds morbid, morbid, but it wasn’t at all morbid. For one thing she showed us this horrendous book of, well we thought it was pretty horrendous, book of cardboard coffins. And I quite like the idea of a cardboard coffin. My mother was buried in one, w-was cremated in one. But they had, the most amazing pictures had been drawn on them. You could have whatever you wanted. And certainly a friend of mine would decorate one if I wanted that. Except we felt the shape was not very nice of the cardboard coffins, certainly not as nice as the bamboo ones. It’s a funny idea to think that you’re looking at the shape of a coffin. And maybe for some people the shape does fit their body, but my very thin body, no, I don’t think it would fit it. And, but there were footballers on some of them and flags on others and motorcyclists and s-, some of them were just, The Last Supper. I mean things that I would never want on my coffin.

So we then went on a very sunny day to the cemetery. Which was a lovely experience, and it made me realise that I didn’t want to be cremated, I did want to be buried, because the cemetery was so much nicer than the crem. And it was partly where you have the service. And it’s a funny thing to call it a service because actually I’m not religious at all and wouldn’t want a religious type of service, but where you have the service had the most terrible plastic flowers in it. And it was something that, when I asked if we could take the plastic flowers down, she said, Only the ones at the front. Not the ones on the wall. And the idea of h-, getting, having a service with plastic flowers was just something, always being surrounded by real flowers, I just didn’t like the idea of. So the cemetery, we had a funny time. A woman there was very, very nice and took us round. And as we went in there was a, there’s a Jewish cemetery, which is very dour, on the left. The Muslim cemetery is in a different bit of the Oxford cemeteries. And as I’m Jewish nominally I thought, Oh, well maybe I could be buried there. But the friend I was with, Rachel, said, No, no, no. You haven’t, you haven’t paid up, so you wouldn’t, certainly wouldn’t let you be buried there. And apparently that’s right. I wouldn’t be able to be.

And then there are various different sections of the cemetery, very obviously different. There’s a Christian bit. There’s a bit for the Russian Orthodox. And they all have their very different character. And then there was a, a bit where you could have anything you liked. So there were some which said, My Mum and they were sort of five metres high in pink carnations. Not something I would have wanted. But it’s nice that people can have whatever they want in that bit. But there were two bits that we did like. One was the woodland area. And the little bit next to the woodland area, which apparently is completely full of daffodils in the spring and where you can have a, a headstone. You couldn’t in the woodland area. Just have trees. And one or two of my friends have been buried there. And it did seem a very nice peaceful place to be. And what does it matter once you’re buried actually? But it, somehow it did matter. Although I think in a way if anyone was going to do anything afterwards, I would like to have a, I’d like to have a chair in the Parks, which is where I spend a lot of time, all our children have gone and played and fed the ducks, and grandchildren now. And it’s some place where I feel very in tune with. And yet it’s funny for me to be thinking like this, because actually I’m non- religious. I don’t believe in any life after death. I, you know, once I’m dead, I’m dead. And yet here I am thinking it would be nice to have some, a nice place to be. And I haven’t really sorted that one out in my head.

You’re not doing it for you? You’re doing it for other people really?

Yes, I’m doing it for other people. And of course what actually happens, at the, any sort of service I think I have to leave to my family and friends to do. But I think I felt very relieved that I’d actually gone through that process of deciding that I wanted to be buried and how I wanted that to happen, and that Rachel now knows what I want and can tell the family. And I have told them that we did this. I think they were slightly horrified but totally understood that it’s very much what their mother would do really.