How do we help people who have been given a terminal diagnosis?

Diagnosing dying

It’s the news that nobody wants to hear, the news that changes everything; invoking anger, frustration, anxiety, not to mention the fact that it’s something that sparks a barrage of questions.  It’s a traumatic time for everybody, including of course family and friends, but it can be a time for taking control, setting goals and making sure you’re able to make the most of that often short, but very precious time towards the end.

To gain a real insight we spoke to Professor Julia Riley for an interview featured in episode 25 of the Art of Dying Well podcast. Julia is the clinical lead for a service called Coordinate My Care, and is a leading palliative care consultant.  Julia doesn’t waste a word in providing practical and compassionate suggestions to help those facing the shock of a terminal diagnosis.

Q. We’re talking about diagnosing dying, something that some people will find challenging, terrifying, will shake them to the core, I guess Julia. And I’m thinking that once the person’s recovered from the initial shock… a common question is what will happen to me? And if so, how do you answer that in a meaningful way?

A. Well I think it’s always a shock to patients when they’re first told that they have a terminal illness. So that’s the first big shock. And the second big shock you might think is the same, but it’s not really the same, is that the end is nigh. And they’re very different places for patients to come to terms with, and more importantly, their family.  

Often both patients and families say to me – ‘I don’t know what to say, I don’t know what to do’. And you could take them, both patients and families, through the stages of grief, because this is one stage of grief, essentially. Kubler Ross had her stages of grief, numb, anger, bargaining. You could choose any one of those stages of grief, but I always think it’s better to keep it simple and just ask, particularly if you’re the carer or someone close to the patient, what do you understand by what you’ve been told and what are your thoughts?

And that’s a very open question, but it makes sure that you don’t put your foot in it and say something that’s deeply upsetting at a time when people are at their most vulnerable, and lets the person who’s in this position, lead the conversation. And by doing that, you find out where they are – they may have been told that they’re dying – but they may not have actually quite got there yet. And so they need to catch up and through talking it through with you as a carer or a professional, it allows them to come to terms with it. And the more you send back open questions, the more you find out where that patient is.  

So particularly when they are first diagnosed and told at the first stage ‘you have a terminal illness’, and I often say, when you’ve asked them an open question, my next question is always well, ‘now you’ve been told that’ – and now obviously you’ve had a discussion with them – ‘what are your goals? What would you really, really like to achieve?’

And you know, it doesn’t matter who you speak to, everybody’s goals will be different. Every individual is different, and those days, weeks, or months are often a window of such importance. They transform families. All sorts of things happen. And you know, the Arabs say ‘the roots of true joy are watered by suffering’. And this is a period when people are suffering, and yet you see great joy if you go with them to their own goals.

And one such example was I had an individual who was living on his own, had just been told he was dying and came to my clinic. And the referral letter said, please talk about dying. It was like, oh really? And so I did what I usually do, I asked what in being told, what his thoughts were?

And we went on to goal, and in his goal, I remember this man had lived on his own all his life. He was a single gentleman, was born in the same house, was a lawyer and was a very isolated person. And he said, well, my goal is not to die on my own, which came as a real shock. I mean, and most times when you ask people, you can never predict what they’re going to say, and he didn’t want to die on his own, so we offered him a package of care, he wasn’t so keen on that. I offered him a hospice, he wasn’t so keen on that. So I said, well, how about some friends? No, he doesn’t have any friends. I said, well, you must have some friend or acquaintance. How about you go and talk to them about how they could help you, maybe intend to rota with some professionals?

And we kind of left it at that just enough for him to cope with. And he was due to come back to the clinic a week later and he pitched up five days later and said, look, I’ve had a discussion with one of my oldest mates. And this old friend had apparently said, ‘don’t be ridiculous, come and live with us.’ And so he said to me, well, what do you think I should do? I said, well, you don’t want to be on your own. Why not go and live with them? And he lived in a central London flat, and these people lived in Dorset. So I said, well, go try. If it doesn’t work, you can come back to plan A. So off he went, we organized a package of care for him at his friend’s house. And I heard nothing more.

And about three weeks later, he sent me a card. And on the card, he’d drawn a little sketch of the house. And he said, this is my room. And he said, I went to heaven before I died. Thank you. And then about six weeks after that, I get the most wonderful letter from the wife of his friend. She wrote, and she said, I just want to thank you because this was the most wonderful period of our lives. Each night, we would have a glass of champagne in his tiny little room upstairs. And one day he put his glass down. He took each of our hands, one on either side of his bed. And he said, thank you. I’m going now. He closed his eyes and he died. And she said to me, you gave us such a great gift. So my thought is in, when you’re first diagnosed as dying, let people take you where they want you to go, and then ask them for their goals, and support them to achieve it.

And the second part is where now you’ve got your dying-dying, so to speak, you’re in your last days. And people are terrified of what might happen and with good palliative care, most symptoms, I won’t say all, but most symptoms can be controlled. And the most common symptoms, obviously pain, fatigue, nausea, vomiting, secretions in your lung, coughing. And there’s certain things that if you warn families about, it makes acceptance of that dying process easier because they know everybody else has been there. So pain – everybody knows about it – and in the main we can control pain. What people don’t know about his breathlessness, and very often people do get breathless and we can often control that well, but there’s something called cheyne stokes breathing, which is you stop breathing, and then you start and start again, and then you stop breathing and you’re starting to start and stop again.

And it’s the body getting hypoxic and telling the brain, you better stop breathing again. So when the patient, the families think the patient is dead, suddenly they come alive again. So this is one symptom that I don’t think is spoken about often enough. And it should be because it’s very reassuring to know that this is just a process of the body, knowing it’s not able to get enough oxygen in. So there are physical processes. There are emotional processes and emotional processes in the last days of dying are really about families. Dying is not a medical illness. It should be about transition, about a spiritual encounter. It’s about emotional. It’s about social. And the very best thing families can do is just to hold those patients in compassionate hands and just let the patient do it their way, whichever way that is. And I think less is often more.  

So I think those are the two parts of diagnosing dying. The first when you’ve got your first diagnosis, the second when you’re now in your last stages and you becoming symptomatic, you might not, but you might, and getting patients and families and the people around them to understand this is what happens.

Q. Yes, that’s fantastic, it’s a really useful and practical offering there. But I have a couple of quick questions, such as in the first phase, and talking more, probably family and friends really, it’s that paralysis, you know, you hear something serious and urgh I don’t want to talk about death, which might be some people’s kneejerk reaction to hearing something like that. What would you say to someone that literally has that talking paralysis? They’re like, ‘oh I don’t know what to say. Don’t know what to do. Will I insult the person? Will I make them more upset?’ All those, they get flooded with anxieties and questions about how they’re acting and therefore can’t help or, or feel they can’t help the person who’s dying. What would you say to those people?

A. Just offer the dying person, a pair of ears. This is not your time to talk. It’s theirs. And the more you listen, the more you will help them.

Q. Very good advice. I mean, yes, you can get too obsessed with how are they processing what I am. And moving into that second phase a bit, when I was listening to you, one of the questions I had was, and maybe I would have this question if I was moving into a palliative phase, will I be the same person? If the pain is suppressed by medication, will it affect my personality? Can I still be the person I want to be?

A. Pain and pain control is it’s a bit like the scales of justice. On one side, you’ve got pain. And on the one side you’ve got side effects and obviously the side effects are change of cognition, maybe nausea from the medications, maybe hallucinations, maybe other things which people worry more about their cognitive changes than they do about their physical changes. But in good palliative care, if you get those scales right, you ensure the pain is controlled, but the mental state doesn’t change. And that is what we’ve learned over the last 30 years, how to get that really sophisticated balance. So I would say to people almost, you can never be completely certain in dying because everybody’s an individual, but if you’ve got the balance right, their brains will be responding accordingly until of course, the second phase.

Q. Now, one thing I did want to ask you, and I know this is different for every person that experiences a terminal diagnosis, but I’m just wondering, do you think it’s possible at that time to look at life a bit more clearly without some of what we might call the many distractions in life that always preoccupy us and we obsess on and so forth. Can we maybe towards the end finally be a bit more of the person we’ve always wanted to be with without some of the clutter. Do you think that’s true?

A. Oh, I have absolutely no doubt. I think people get enormous clarity and that’s why it’s such a precious window of time because they focus on what is really important. They say what needs to be said, and the worry about repercussions and what’s going to happen disappears.

I mean, one perfect example was a homeless chap, literally under the bridge in London who had cancer of the lung. And when I said to him, would he like one of our care plans. He said, I’d love that because in my last few days or weeks, I would love to tell my family in Ireland how I’ve loved them. He said, I have destroyed them all, but I would love to ask for forgiveness. And I would love to tell them why I did what I did, but I don’t want to tell them that before I know I’m really dying. So my best wish is – if I could go to a hospice and they could call my family – because if I go into a hospice, they’ll know I’m really dying.

And I think that’s one example of so many I’ve heard when people have lived with things on their chest, so to speak for years, suddenly they get clarity, suddenly they get perspective. Suddenly they want to relieve themselves of that. And in doing so, they gain dignity and it it’s a most remarkable change in the last phase of life.

Q. That’s a wonderful example. One other tricky diagnosis question I have, and I guess it’s more particular to cancer, in that we see it more perhaps with a cancer diagnosis. If someone’s life has been under threat, so that they’ve thought they might die, but then they have this sort of miracle of remission and enjoy some more years. But then it’s come back, that side of the diagnosis. You know, you’ve built your hopes up again, you feel normal, you’re back in your flow, as it were. It must be psychologically – as much as anything else – very difficult to then readjust to your life, being under threat again, potentially worse than it was before, and have to either fight again or reconcile yourself to the fact that these are your final days, weeks, months. Is it different dealing with somebody who’s had that sort of double diagnosis as it were?

A. Definitely. I always say it’s dying twice, and dying once is bad enough, dying twice is really hard. And this happens with new immunotherapies because people suddenly… you know, 20 years ago, melanoma was a death sentence. Now the tumour might melt away and you get some more months. You won’t get long life, but you’ll certainly get long months. So that this is a process to go through twice, comes with big costs attached to it. And not only for the patient, but for the family. And it comes when the families and the patient are tired. It’s very emotionally tiring when someone dies, in my experience, and I could be very different to other people. I think the bereaved, it takes a year before that cloud lifts and one day they wake up and think I’m no longer exhausted, and they don’t even know why, but I’m no longer exhausted.  

Dying for patients and their families is a very tiring process. And to do it twice is obviously even more challenging. And I think it requires more sensitivity because also it’s not only the exhaustion, but there’s a distortion of what hope is, because you’ve beaten this once. Why shouldn’t you beat it again and again and again, and indeed why should you not? And so you live therefore with dying on one side and living on the other side; it is a different cohort of patients and we’ve dealt with a lot of them now. And I think my answer has come, but over years, not immediately, is that we should all live till the day we die. Whether we die once or twice, we should live every day. And actually if you extrapolate that, everyone of us should live as if this is our last day.

Q. Very, very good point, indeed. Now I want to ask you something a little bit controversial. Now, social media, certainly a thing of our times, but for younger people than me, more, more to the point, but, but for all of us, and it seems to me that what’s happening an awful lot these days is when somebody does get a terminal or life-threatening diagnosis, a serious diagnosis, they, for instance, pop it on Facebook, which might on the one hand seem quite general. You might have 500, a 1,000, however many friends you’ve got and their extended networks on Facebook and you’re putting it out there, ‘I’ve been diagnosed with cancer, I might not have very long to live’ and that does on the whole – because most people are compassionate and show their human side even on social media – you’ll get an outpouring of well wishes and sorry to hear that, you know, take the fight to it, all that sort of thing. And I think that’s wonderful in a way, but there’s something about it that makes me feel a bit uncomfortable as well. I ask myself, would I do that? I think in a way I know your answer to this it’s, it’s not a one size fits all I’m sure. But, what are your views on sort of sharing a terminal diagnosis through social media?

A. Well, I’ve held the hands of people who’ve done this. And, if you take the example of Jade Goody, and I’m not speaking out of turn because she was a patient of mine, but it was in all the papers, it was in the public arena. And every day she would go on social media to say what had happened and, you know… And to quote Mike Richards, who was the tsar of cancer at the time, I remember him saying to me, ‘Julia, she’s done more for cervical screening than any program the NHS has ever put out.’ It was heartfelt. It went to her age group, they all sort of, oh my God, we need to get cervical screening. And now we need to have the HBV vaccination. So she really did an enormous amount and she loved it, and it was part of the way she died, and it had a lot of good things. That said, she also wanted to continue filming. And after discussions, you never know how people are going to be when they’re really, really, really dying in that last stage. So if I go back to my two stages of diagnosing dying, for the first stage, I mean, she just did a dramatic amount. And then she had her private space at the end.  

I think once it’s out there, you can’t get it back. And if you share too much of what’s private, and your hopes and your aspirations, it may be hard. But I do think there is a very great value if it’s done well, but I think you’ve got to be very careful because dying is actually quite, I would say it’s private. So that’s what I would encourage patients. But if they want to do it, I’d take them through their journey and, you know, let them be as creative as they want to be. She gave a great gift to the nation, through social media.

Q. It’s interesting you saying that particularly about Jade Goody, because, you mentioned the media as well, we all had a perception of Jade Goody, which wasn’t the real Jade Goody I’m sure. And it wasn’t particularly positive in some ways. But I remember saying to my wife, after she died, wow. You know, I feel what a decent person. I remember saying that to her, and that wasn’t the lens of the media, that was actually through her own social media. And looking at her story, you may come out with things that maybe are a bit too trite, like, oh, isn’t she brave and, and look at what she’s doing. I’m glad you said that about, her contribution, as it were, to screening and other things, just by sharing her story telling people to get out there. And that’s very selfless and admirable, I would say. So maybe I would slightly change my views on social media in that sense.

A. Well, it’s the way of the young, and the young need to be educated about dying because it may change how they live. So I think if that’s the way they like to hear, then that’s the way we need to speak to them.

Q. Now Julia I really could talk to you all day and I know you’re very busy, so I will make this my final question. If somebody listening now has just had that diagnosis, and you talk about keeping it simple, I think that’s absolutely right. And there are all those fuzzy thoughts, those difficult thoughts. In simple terms, what would you say to that person who feels that they can’t see clearly at the moment?

A. Find a confidante to talk to because if you talk it out, you’ll find your own solution. No one really knows, you know, everyone has a private life, a public life and a secret life. And at the end of the day, you bring those three together when you’re dying and only you know what those three are. So it’s important to have a confidante and talk it out because then you will explore your needs, your goals and how you can manage with – support of other-   to have a very, very special last phase of your journey of life.

Fascinating, Julia, thank you so much for your time. I love the way that you’ve given us that simplicity, some tangible, practical, accessible steps for people. So thank you so much for that. Very grateful for your time.

Listen to episode 25 of the Art of Dying Well podcast.