The Role of Hope and Purpose in Advanced Cancer

The Role of Hope and Purpose in Advanced Cancer

[EPISODE ID]: You’re listening to “The Role of Hope and Purpose in Advanced Cancer”, an episode of “The Thing About Advanced Cancer.”

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Dr Megan Best: if I saw a new patient I would ask them to tell me their story and as they’re finishing up I would say something like, “What is it that keeps you going when it’s really tough?” And in my experience everybody knows what it is that keeps them going.

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[Series Intro]
[woman] The Thing About Advanced Cancer
[man] a podcast from Cancer Council NSW
[woman] information and insights
[man] for challenging times.

Intro: Hello, I’m Julie McCrossin and today the thing about advanced cancer is that so much feels out of control and it can make you rethink everything. How can you make sense of it all? And what’s the role of hope? These are just some of the really big questions we’re discussing with Dr Megan Best, a palliative care specialist and researcher from Royal Prince Alfred Hospital and the University of Sydney.

Just to be clear, this podcast contains general information only, so we recommend that you talk to appropriate professionals about your individual situation.

You can also call Cancer Council 13 11 20 if you have any questions.

As we’ve heard in other episodes in this podcast series, some people are now living with advanced cancer for years, while for others, it does mean planning for the end of life. And in most cases, advanced cancer cannot be cured. So, given that, what is the role of hope? Megan will share her thoughts with us in a moment, but first here’s what some of our other guests had to say:

[Montage of voices]

[Female] In a world without hope it can be a really miserable space. I think the thing that’s important though is that hope might not necessarily be about cure, and hope might be about actually, what do I want my quality of life to be like?

[Female] I hope to see my first grandchild born, and I don’t think it’s even conceived yet, but thought about.

[Male] I guess the hope is for a peaceful exit and, if not, to have the support services that assist you in that last series of things that will happen. So, I guess that’s the hope that I have.

[Male] There is hope. Well I think of when I first got it, I said, “Well, okay, let’s try to get to 12 months,” you know? That was – and I have now. And then our daughter’s going to start secondary school in January, so I would dearly love to be around when she starts her new school.

[Female] Hope is a hard one because you’re trying to always temper it with the reality of what we’re living with. My hope is that Peter can live for as long as possible and still be as well as he can be to enjoy life. I hope that of course perhaps there might be a new treatment in the pipeline that might be available when the next treatment runs out.

[Female] The actual nature of hope changes, and that hope might start to shift from “Well, I’m looking for treatment” into “Actually, I want to go and sit in the sunshine today.”

Julie: And it’s now my pleasure to welcome palliative care specialist Megan Best. Megan, people often say that as cancer progresses, it involves a series of losses. Can you tell us about some of the things people may lose, and then in your experience how do people maintain hope? And is it important to try to do so even as you know your life is changing?

Megan: I think the cancer journey is one of loss. There are different types of hope though. So, people would generally have what we call extrinsic hope – or hope focused on something outside of you – when they are first diagnosed with cancer, and that’s an important type of hope because it helps you to cope with those losses that you have in initial treatment – loss of your health, loss perhaps of your job as you to take time off to go to the hospital, loss of your hair as you start chemotherapy. That hope in a cure, that “I’m going through all of this because I’m going to beat my cancer”, is a very important motivation for getting through what can be quite difficult treatment.

Julie: But for some of us, advanced cancer means facing up to the fact that we’re going to have cancer for the rest of our lives, that it’s not going to go away, we’re just going to have to manage its progression. So how do you find hope within that?

Megan: Well, let’s think about the losses that you’re experiencing there, such as loss of your future, loss of any chance of cure, loss of all your plans and hopes. You want to still have hope, but you can no longer have the hope that you had in outside things. So, we then need to rely on what we call intrinsic hope – which is hope pointed inwards, which is hope for the thing, about the things that are important to us. So, people think about the work they want to do in relationships, such as saying: “I love you,” “I’m sorry,” “Thank you,” “Will you forgive me?” And their hope might be having strong time with people in a relationship, mending relationships that are broken, building up those more relational aspects of their life rather than focusing on things outside. And by focusing on the things we’re in relationship with, then we can have find strength within ourselves even if we are physically deteriorating.

Julie: You often hear the term “existential crisis”, and I imagine that a diagnosis of cancer, particularly when it’s advanced cancer, would often lead to a sort of existential crisis. But could you explain what we actually mean by that word “existential”?

Megan: When we talk about the existential dimension, we’re talking about our spirituality. Now most Australians think that’s something religious, and in fact we’re doing a lot of research at the moment to find out what are the right words to talk about this with Australian cancer patients. But basically, it means the things that give your life meaning, the most deeply held values that you have. And for some people it will be based on a religious belief in a higher being and maybe an organised religion. Or it might be to do with your family, it could be that your family is your reason for getting up in the morning and the thing that helps you to be strong when things are really tough. Some people are just very strong in themselves, and some people get their strength from their experience out in the environment or with the arts, just a thrilling experience. So, if you had to fill in the sentence or answer the question, “What is it that helps you to cope when things are really tough?” – chances are it’s something in that range of things. And that’s what you’re holding onto and you need to spend time with, to answer the questions that arise in the crisis, which are: Why has this happened to me? What’s the purpose of my life? What happens after I die? Is there a God? Is God punishing me? Questions like this are what happens when people suddenly have that existential crisis, when they find out that their life is not going to go the way they had expected it to and they have to realign the goals of their life for a new timeline.

Julie: They are all very big deep things. Is the single most important thing to say to people listening to this, “Talk to somebody about it if this is happening to you”? Because that’s a lot to cope with by yourself.

Megan: It is a lot to cope with. Some people who have a very strong spirituality may not need help, but the majority of people do. And I think that workers in palliative care have seen wonderful resolution of family crises. They’ve seen people really grow in the last part of their life as they’ve started to spend time thinking, “What is most important to me in my life?” and put time and energy into those things.

Julie: As a palliative care doctor, is it one of the questions you’d ask people – “What have you drawn on to give you strength during other crises in your life?” Because for some it might be nature, for some it might be the arts, it might be music. Is it partly encouraging the person to reflect upon where they’ve found strength beforehand?

Megan: Absolutely. I would, if I saw a new patient in the palliative care clinic, I would ask them to tell me their story and as they’re finishing up, I would say something like, “You’ve obviously had a really tough time. What is it that keeps you going when it’s really tough?” And in my experience, everybody knows what it is that keeps them going. And we need to make sure that, that individual has access to that thing during the advanced cancer stage, so they can keep their spiritual wellbeing in good shape.

Julie: So, part of being a palliative care team member is to really get to know the patient and to help them draw on their resources.

Megan: Yes, what I know some of my colleagues will say is something like, “What do I need to know about you so that I can take appropriate care of you at the end of life?” In my own research looking at why patients want doctors to ask about these sorts of things, it’s not because they want a spiritual counsellor or anything like that – it’s because, if my doctor knows the most important things in my life, he can then tailor my treatment and my management of my disease around those things, and he will be able to treat me as a whole person. So, for someone for whom family is really important – I can remember an Italian lady with hordes of children and grandchildren, it was important that there were family members every time she got an important piece of news, like bad news or news about a change in treatment. We had to make sure family were there because that was such an important part of her support network.

Julie: Can you give me a couple of other examples of different things people have drawn on that maintain a sense of hope and of purpose even when they know their life is now limited in time?

Megan: I remember one patient who got her spiritual strength from plants and nature. And for her it was very important that she had trips out of the ward into the garden regularly so she could feel the wind, she could see the trees and the flowers. And when she was at home, we actually arranged for her to have a hospital bed which could be wheeled out into the garden so she could still be in nature even when she was too sick to get out of bed.

Julie: We can see in the contemporary architecture of new cancer centres and hospitals, people are incorporating the arts and nature, aren’t they?

Megan: They are –

Julie: – even into the structure –

Megan: It’s wonderful, yes.

Julie: It’s sort of a recognition that the kit of medical tools is not the only tools you need at the end of life.

Megan: That’s right. I’m told that every Japanese hospice has a tank full of carp fish, and I think that’s a wonderful idea – just sitting there watching the fish swimming around would be very relaxing.

Julie: Susan has drawn strength and comfort from nature while caring for her partner, Peter, who is living with advanced prostate cancer.

Susan: Being in nature I find really soothing, just in that nature never changes and the trees are still there, and the ocean’s still there, and the sun still comes up in the morning, and the stars are there. – I find that a solace for my soul too. So, when Peter was dying, well when we thought he was dying initially, he said, “You can look out at the stars at night and I’ll be there.” And sometimes I’ll look out at the stars when he’s in bed at night and he’ll say, “Am I there yet?”

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Julie: Megan, I imagine some people who have a religious faith rely on that for their sense of hope and purpose?

Megan: You will often see people in a palliative care unit who bring in a Bible if they are a Christian believer. Some Catholic patients will have pictures of Mary on the wall, and you can see fairly quickly that theirs is a religious form of spirituality. They might benefit from having their local minister be invited to come into the ward just to chat to them and pray with them and perhaps give them Holy Communion. We’ve had teams of Buddhist monks come through the hospice for some patients who benefited from the rituals that came from that tradition.

Julie: I know hospitals and palliative care units often have pastoral care workers available to patients and families. My impression, though, is that a very significant number of Australians aren’t particularly religious, they consider themselves secular. So, does that mean a pastoral care worker wouldn’t be appropriate for them?

Megan: Not at all. I think it’s a shame that many people miss out on that kind of support because they think it is religious. But a spiritual care worker or a chaplain or a pastoral care worker is trained to support you with whatever spirituality you have – whether you’re very secular, whether you have a different religion from theirs, whether you have no religion at all, they are trained to help you where you’re at. So, you definitely don’t have to be religious. An advantage of the pastoral care worker is they’re probably the member of the team with the most time. So if you have a complex problem or are sort of trying to work out how to fix a relationship that’s gone bad, you know, in the time you have left, that’s an excellent person to speak to, because they can sit down and listen to what you’ve got to say. And often just talking over a problem can help you work out what the next step should be.

Julie: And in my experience a great advantage of spiritual care workers or pastoral care workers, whatever, is they’re so used to talking about death, they’re completely comfortable. And so, their relaxed style is almost as important as what they say –

Megan: – that’s right –

Julie: – they’re at peace. But that’s true of religious people too because they can do, you know, a baptism in the morning and a funeral in the afternoon, you know? They’re constantly in the cycle of life, so they’re relaxed.

Megan: They’re relaxed and that can rub off on you, so that any anxiety you might have had – or I think you’re right in saying there’s a vocabulary problem. We don’t talk about existential things when we’re going through a normal, everyday life. And we may not even have the words to describe the feelings we have, and talking to someone like that might help put words to the feelings you’ve got so you can start talking to someone else about them.

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Julie: You’re listening to “The Thing About Advanced Cancer”, a podcast from Cancer Council NSW. If you are looking for more information about coping with advanced cancer, you’ll find links on our podcast page at cancercouncil.com.au/podcasts – just click through to “The Thing About Advanced Cancer” and then click through to this episode, “The Role of Hope and Purpose in Advanced Cancer”. You can also call Cancer Council 13 11 20 if you have any questions or want to talk to someone about your concerns.

We’ll go back to Megan in a moment, but first we’re going to hear from Ian, who started to lose his sense of purpose after being diagnosed with advanced melanoma.

Ian: I spent a lot of time in bed, feeling sorry for myself, when I was first diagnosed. And my wife, Anne, has really looked after me, and she was working and whatnot, but I just couldn’t, I couldn’t get out of bed, I just couldn’t do anything. I was really, really on a low. And she came in to me one day and I thought, you know, with a cup of tea and then fluff my pillow – and she calls me Canty, everyone calls me Canty – and she said, “Canty,” and I said, “Yeah, Doll?” She said, “Get up, you stink.” I’d been in bed for a few days so… That was the thing that I really appreciated. I needed people to just say it to me as it was.

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Julie: Now Megan, let’s talk about some common powerful feelings that may get in the way of hope and purpose. Firstly, something that is very common in people with cancer is fatigue. And if someone is just terribly tired and unwell, there can be a sense of tedium in their days. What can you do for that person when they feel too exhausted to get any enjoyment from life?

Megan: There are a couple of things you need to think about for someone who’s exhausted. Firstly, why are they exhausted? And as you said it could be due to the treatment or it could be due to the disease. If it is due to the treatment, the patient needs to be aware that it’s their decision whether they stay on that treatment, given that they have advanced cancer, or whether they decide to give it a break so that they can feel less tired, and they might want to talk to their cancer doctor to see what are we trying to achieve with this drug? Is it worth this tiredness, or would I prefer to have perhaps a bit less time alive but have more energy during that time? There are medications available that improve energy levels, and certainly you should talk to your cancer doctor or your palliative care doctor about medication. But sometimes we need to change our goals in terms of what we can achieve. We might need to ask other people to do some things for us. We need to reframe our roles. I can remember one young mum who had breast cancer, and she was really distressed because she felt she wasn’t a good mother. And when I talked to her, the thing that really made her feel she wasn’t a good mother was that she couldn’t drop off her daughter at school and pick her up anymore. And it was true, she couldn’t drop her off and pick her up anymore and she had a lot of fatigue. But we started talking about, well what is it that’s really important about being a mother? And I mean, anyone can drop off and pick up, but what is special about being a mother, and we talked about the love she had for her child and their relationship. And by focusing on the fact: well, that’s really the key of being a good mum and you’re a fabulous mum because you love your daughter so much, and she knows that. And by reframing the role of being a mother, her fatigue was less of an issue because she found a way of being a good mum that didn’t involve such physically strenuous tasks.

Julie: What about the situation where someone is just angry, they’re just angry? They don’t want to die, they’re furious. How would you manage that? Because I suppose there’s this idea that you need to reconcile your anger before passing over the line?

Megan: Not everybody is going to die with all their issues resolved. And I always think that a good death is when you die the way you’ve lived. And some people live angry lives and they’re going to die angry and I can’t always overcome that. I do think that talking about why you’re angry might be helpful. I think that some forms of psychotherapy and counselling can be very good. And most cancer units have a psychologist, maybe a pastoral care worker, available for some counselling, and it could be that the anger is about the losses that someone’s experiencing in the face of cancer, and that by talking through those, the reasons for that anger, it can resolve to some extent. And I think that people will have a more comfortable time if they can resolve that anger. And certainly, asking for help with counselling is a very important part of management.

Julie: We’ve mentioned distress, but sadness and depression are different things, aren’t they? So, how do you work out whether someone has depression that could be treated, or whether they’re simply feeling a natural response to the seriousness of their situation?

Megan: It can be quite challenging. It’s certainly not straightforward, because the symptoms of depression – which can be difficulty sleeping, bit of constipation, perhaps feeling tired and without a lot of initiative – these are obviously all symptoms of cancer. And furthermore, a lot of people don’t even look for symptoms of depression in cancer patients because they think, “Well, I’d be depressed if I had cancer,” and they don’t think of it as being something that can be treated. But in fact, we know in different studies somewhere between a fifth to a third of cancer patients do get the type of depression that can be treated, but that about three-quarters of them don’t get treated. So there’s a lot of people with cancer who have depression and are not getting the proper treatment. And when you do give them the proper treatment, most of those people lose their tiredness and get back to feeling much more positive about life. And so I think we need to have a high level of suspicion, and sometimes I will refer someone to a psychiatrist to tell me is this person depressed or are they just having difficulty adjusting to having advanced cancer, what we might call an adjustment disorder. And I leave it to an expert sometimes to work out because I don’t know. But certainly, we need to distinguish between the sadness of having a life-limiting illness, and clinical depression which will get better with treatment. And then we have a kind of distress which we call “existential distress”, which is to do with relationships and the breaking of relationships. So one way you can think about spirituality is a human being who has relationships – so the four types of relationships we’ve talked to, whether with a higher being, with ourselves, with family, with the environment – and illness reflects a breaking of those relationships. So physically we are broken in different ways and spiritually as well those relationships can be broken. And that’s why we get these big questions about the meaning of life and what life is about when we get a serious illness. But then healing is when the relationships are mended, and physically it might mean a mending of our bodies so that we get better, but relationally it means restoring those relationships to a healthy level. And that’s why you can have spiritual healing even in the absence of physical healing, and still find peace at the end of life if you work on those personal relationships when you have advanced cancer.

Julie: That’s a very hopeful vision. And what about family and friends? How can they maintain a sense of hope? Surely many would simply feel a sense of dread about what may lie ahead?

Megan: Well, I have a favourite cartoon which is Charlie Brown and Snoopy sitting on a wharf looking out at the ocean, and Charlie Brown – in his normal pessimistic way – says, “Snoopy one day we’re going to die.” And Snoopy’s thought bubble says, “Yes, but every day until then we’re going to live.” And I think that’s the approach you need to have in advanced cancer – we will live every day until we die. And I see my role as a palliative care doctor to help people live as well as they can in the time they have left. So, I think that carers shouldn’t think that it’s going to be miserable.

Julie: No, well, I was going to say, because we’ve talked in a very serious and rather solemn way – as one should, I mean this is a time when you have to talk about serious matters when you have advanced cancer – but you wouldn’t want to put pressure on someone to cherish every moment and be profound all the time, would you?

Megan: No, it’s time for relationships and having the grandchildren over and creating a huge mess as you ice the birthday cake and live.

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Julie: That’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Megan, Susan and Ian for sharing their insights. And we’d also like to thank the Dry July Foundation for their generous support of this advanced cancer podcast series.

If you’re looking for more information, you can ring the Cancer Council 13 11 20 Information and Support service from anywhere in Australia, or go to cancercouncil.com.au/podcasts. If you have any feedback on this podcast, we’d love to hear from you, so leave us a review on Apple Podcasts or on our website. If you’d like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app.

If you found this episode helpful, you may want to listen to our podcast on what a diagnosis of advanced cancer means. In that episode, I talk to medical oncologist Dr Craig Gedye about the challenges of getting that diagnosis and how people find ways to cope:

Dr Craig Gedye: So, it’s funny, people talk about a bucket list, but often I meet people and they really just want to carry on their normal lives. They want to keep making their model airplanes, they want to just keep doing their garden. You know the marker of one of my dear patients is how many of his local neighbours has he done the gardening for, and he just keeps doing the gardening for his whole street, and that’s a perfect quality of life for him.

Julie: You can find that episode “What Does Advanced Cancer Mean?” on our website at cancercouncil.com.au/podcasts, just click through to “The Thing About Advanced Cancer”.

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Julie: The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only, and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals.

I’m Julie McCrossin and you’ve been listening to “The Thing About Advanced Cancer”, a podcast from Cancer Council NSW.

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