Living with Dying

Living with Dying

[EPISODE ID]: You’re listening to “Living with Dying”, an episode of “The Thing About Advanced Cancer.”

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Dr Megan Best: The advanced cancer experience should be about living with cancer, not about dying with cancer. The dying will come in its time and we can focus on the end of life things then, but you need to think about all the things that are still left and all the things that you can still do to get the most out of that last stage of your life.

[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 the thing about advanced cancer is it can make you think about your mortality. While some people do live for many years with advanced cancer, others know they may only have months or weeks left. If that’s the case for you, how can you make the most of whatever time you have? And how do other people cope with the fact that you’re dying? To find out, we’re talking to Dr Megan Best, who is a palliative care specialist and a palliative care researcher at 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.

Welcome to Cancer Council’s podcast, Megan.

Megan: Thank you very much, Julie.

Julie: We talk about living long-term with advanced cancer in other episodes in this podcast series, but in this episode, we’re focusing on those people who have been told they have months or weeks to live. That must be a confronting idea for people. In your experience, how do people cope with that news?

Megan: When you suddenly get that news, I think it’s a shock for family members, but many patients, I think, knew deep down already the way things were going. And in my experience, when I start talking about serious issues about end of life, many patients seem relieved that at last someone is talking about what’s really going on, and they welcome the opportunity to start talking in more concrete terms about, “What do I want to do in the time I have left?”

Julie: But even so, there is something, isn’t there, about facing your own mortality that almost resists that realisation?

Megan: Yes, I think that, anxiety, depression, grief, just denial – there are lots of human reactions, it depends on the person how they would react themselves, but there’s certainly a period of distress that initially will come, I think, to most people.

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Susan: Just to be philosophical, we have really found that’s helped a lot too, because it’s a hugely shocking thing, but we are all mortal and we all live as if we are not. And that’s one of the hardest things, I think, we really do – we live as if life will just go on forever and we’re so shocked when we find out that it doesn’t. I mean I’m as guilty of that as the next person.

Julie: That was Susan, whose partner, Peter, is living with advanced prostate cancer.

Megan, I believe you have actually been researching that distress at the end of life? Could you tell us a bit about your research?

Megan: Well, when I was working in palliative care, it was very obvious that at some point of the trajectory of the disease people would suddenly realise, “I’m going to die,” that “the end of my life is in sight.” And we all know that everyone dies, but there’s a sudden moment that we call the “existential slap” where suddenly people think, “Well, I’m going to die.” And depending on the resources that people have within, they may cope differently. So when you get that existential slap, that’s when the big questions like: What am I doing here? What was my life about? How could God let this happen to me? What happens after we die? All those big questions, which probably are always at the back of our minds, start to come to the fore and we can’t avoid them, and we have to start working through them. And if we can’t work through them with the resources we have, and we don’t get adequate support, we may start suffering, what we call existential or spiritual suffering or distress. And that is a very terrible situation for people to be in, because the distress can’t be alleviated by any drugs or things like that, and people can suffer quite badly.

Julie: We’ll come back to what you can do about that existential suffering later in this episode, but first could we just talk more broadly about the role of palliative care? I’ve always been told it isn’t just for the last weeks of life, it can actually be over a number of years – is that right?

Megan: In the old days when I first started out in palliative care, we’d be the team that would be called in right at the end when the cancer doctor thought, “There’s nothing more we can do, now it’s time to go to palliative care,” and it meant that everything was over. What we’ve realised is that the skill sets in palliative care – and it’s a multidisciplinary team, it’s not just the doctor but we have social workers, occupational therapists, physios, chaplains, nurses, speech therapists, lots of people, and we work in the community as well as in hospitals. So, the World Health Organization recommends that anybody who might have a terminal diagnosis be referred to palliative care early in the process, if only just to meet us and find out what resources we have. And then according to their needs they’ll be referred to us somewhere along the track. But the sooner you get to meet the palliative care team, the better. And it might be at the start we just help someone get a bit of equipment in their house to help them get around more easily, and you may not need to regularly see a doctor for years.

Julie: My understanding is that palliative care doctors are experts in pain management and symptom control. Is that right?

Megan: Symptom control is a very important part of the training of a palliative care doctor. And we’re very good at treating symptoms and that can be a reason why we’re sent people who may not actually be ready for other services we provide, but they might just have a difficult pain problem that the normal cancer doctor’s having trouble with. And we might be brought in just to deal with a specific problem and then just check in now and again to monitor how things are going. A lot of cancer doctors are good at controlling symptoms as well, so we might be brought in for an opinion now and again, it depends on the patient.

Julie: I’d like to go to this idea of the stopping of active treatment. You hear that expression, “We’re going to stop active treatment.” What does that mean? Is it about no longer aiming for cure? And do you still give support to people if active treatment has been stopped?

Megan: What’s commonly meant by stopping active treatment is that we’ve changed our goals of care. So, active treatment generally is aiming for cure. We may come to a time where the treatments no longer work, or the burden of the treatment compared to the benefit is not found to be worthwhile by the patient. It could be that you’ve tried different treatments and you’ve just run out of options in terms of what works. And we say, well, it’s no longer possible to cure this cancer, but we still have drugs, perhaps, that will help you live longer. Or perhaps we’re saying that our goal now is just to make sure that you’re comfortable for the rest of your life. And I don’t like the idea of “giving up active treatment”, because as far as I’m concerned, I give active treatment up to the day someone passes away. But I think it’s important to realise that we need to be clear on our goal of care.

Julie: So if you’re listening to this as a patient or as a family member or friend, keeping communicating with your cancer doctor and team about “What are the goals of my care?” is a useful question.

Megan: I think so, because research has shown that a lot of people on palliative chemotherapy – which is chemotherapy aiming at prolonging life but not cure – a lot of those patients thought they were on treatment aimed at cure. And the benefits change. And so then what you’re weighing up against the burden of treatment is in a different position.

Julie: And what role does family or partners, or close friends play if the person has others around them in that decision-making process?

Megan: It can work different ways. I think sometimes the patient comes to term with the seriousness of the illness before the family, and it can be harder for the family members to have the patient stop treatment than the patient themselves, and that’s because they’re not ready to let go. And occasionally it might be someone who feels guilty that they haven’t cared enough for a parent or a relative, and it’s their way of showing care now that they try to encourage them to keep having treatment when they really don’t want it.

Julie: So as a palliative care physician do you have to work with the family as much as the patient, in the patient’s best interest?

Megan: Sometimes. Sometimes I volunteer to be the bad guy and if the patient can’t say to the family, “I want to stop this treatment,” they can say it’s something that I’ve suggested. And that’s okay. But I think that one of the keys to coping with advanced cancer is that everyone communicates as much as possible, and that’s me talking to families. I’m happy to talk to families. I’m happy to meet them separately or with the patient, and I think that everyone on the team would feel the same way. And as we get more transparent about what we’re thinking and that we know what’s going on and what’s intended, everyone can make better decisions.

Julie: You must face times when there’s family conflict. So how do you manage that? Is that where you might get a social worker involved, or is it something you manage as a doctor, or it must vary?

Megan: Some families have had problems for years before I come onto the scene, and I know that I’m not going to fix some family’s problems in the lifetime of my patient. But I have always found that with sufficient conversation all problems can be resolved. I’ve never had to resort to courts to insist on who has the final decision. I think that it’s important we just pursue communication with everybody in the circle and make sure that everybody is comfortable with where we’re going. Sometimes people need a bit of extra time to get used to where we’re up to in the disease process before they can come onboard with us, and so there will be times where we might delay stopping a treatment or delay starting a treatment to give people time to understand where we’re up to, and certainly social workers, pastoral care workers are very helpful in supporting family members at that time.

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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 facing end of life, Cancer Council and other organisations offer support and resources. 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, “Living with Dying”. You can also call Cancer Council 13 11 20 to request free booklets or just to talk to someone about your concerns.

Megan, once people have come to some degree of acceptance that they are in the last part of their life, do they start trying to make sense of their life, tidying up loose ends or saying goodbye?

Megan: I’d say it would happen to most people. I think that hearing that you have a limited time to live being such, as you say, a confronting event, it may take some people a bit of time to come around to thinking, “Okay, what – sort of – do I do now?” I think that sometimes my job is gradually turning people around so they can see we have a new goal of care, that there will be a new way of living life, a new way of measuring up what’s worthwhile and what’s not worthwhile.

Julie: Can you just give me a sense of what are common things that people do in the last weeks or months of their life. Are there common themes of behaviours that emerge?

Megan: What I encourage people to think about when they realise their time is limited are the things that they’ve always wanted to do. I suppose it’s been popularised a bit by bucket lists, but often people will have something they’ve always wanted to do. I remember one fellow who’d always wanted to go to the Northern Territory. So, we actually dosed him up a bit so he and his dad could go to the Northern Territory while he was still well enough to do that. So, there’s this element of, of the things you want to do, what requires an element of wellbeing? And let’s help you do that.

Julie: So, if you’ve got a particular goal in mind, something you would really like to do, speak up to your doctor and the rest of the team and ask if they can help you achieve it.

Megan: That’s right. It might be you want to get to your granddaughter’s wedding, it could be that you’ve always wanted to do a marathon and it’s going to be a pretty slow one but, you know, you do that in some way or a half marathon in a wheelchair or someone does it on your behalf. But we try to help people start to feel a sense of completion of the things they wanted to do. Sometimes, all people want to do is stay home in the garden with the dog. But in order to do that they have to stop the cycle of hospital visits and blood tests and scans. So what we would do is help them talk through, well, what is being achieved by this treatment? I remember one lady whose chemotherapy made her dead tired. We knew it was the chemotherapy because of the cycle of her tiredness. And so I explained that it was her decision whether she kept taking that, but before she decided she should ask the doctor what it was they were trying to achieve. It turned out that at the most she would have got a few weeks extra from that treatment, and as soon as she heard that she said, “I’ll stop. I’m going to stay home. I am not going to go to Emergency ever again. I’m going to stay home with my husband and my dog and we’re going to sit in the garden.” And that was her choice and that’s what she did. And I thought that was terrific.

Julie: So that shows how important it is to keep talking to the doctor and the team about your goals and to be aware that your goals might change.

Do people near the end of life sometimes want to make amends, to right wrongs? I’m thinking, for example, if you’ve had a falling out with a particular child or sibling or parent. I imagine that for some people that could cause considerable distress.

Megan: These are common responses to suddenly realising you’re going to die. As you think about things in your life that perhaps you regret or relationships that are broken, there might be guilt or sadness about broken relationships, and that can have a big impact on someone’s care. So I’ll tell you a short story of a patient I had to show the complexity, it’s a fellow who we can call Frank. He had pancreatic cancer. And I was looking after him in the clinic and he got some pain problems, so we changed his medications, but it just wasn’t getting better. So, I’d known Frank for a couple of years, and I sat him down and I said, “Frank, what’s going on here?” And he told me for the first time that he had two sons. I’d known him for ages and he’d never mentioned that. And his sons didn’t know he was sick, they certainly didn’t know he was in hospital. And to cut a long story short we tracked them down, they came into the hospital and he was able to tell them that he loved them. that he regretted the broken relationship. And after that the pain was much easier to control. And I would say that that was a spiritual crisis, an existential crisis in terms of that broken relationship that he was able to mend. And it didn’t just affect his existential self, it even affected how he was responding physically. So that’s a team that’s helping there – so it’s the doctor helping with the medication, the social worker and the pastoral care workers are very supportive in terms of realising the importance of family relationships at the end of life, and I’m sure the whole team had a role in the ward of just telling him this is really important stuff.

Julie: That’s such a wonderful example. And of course, there will be times when the reconciliation doesn’t occur, where the break stays.

To what degree can you help a person at the end of life face the things that aren’t going to be worked out before the end comes?

Megan: I believe that the thing that helps you have a good quality of life, as your life draws to an end, is what we call spiritual wellbeing. We can actually measure your spiritual wellbeing, and there are different types of spirituality in the community. Some people will have, you know, what’s expected is a religious spirituality that’s connected to a higher being. Some people get their strength for coping from their family. Some people are just very strong within themselves. And some people get their spiritual strength from the environment, such as nature or from a beautiful piece of art or wonderful music. And whatever the thing is that helps you cope when things are really tough, we need to make sure that people have access to them at the end of life. We’ve shown in Australian cancer patients that your spiritual wellbeing is as important as your physical wellbeing in measuring quality of life. So you can have a good quality of life if we can restore your spiritual wellbeing even as your physical body is fading away. And this is how we know that everyone can come to this place of peace before they die if we help them build up their spiritual support.

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Bryce: I think I’ve become much more accepting of the day as the important part in your life, rather than the future. I guess we’ve all been cast forward to look to the future. Often by looking forward to the future you’re missing out on the day today. And yeah, I sometimes sit on my back verandah and sort of ogle the Gymea lily that has grown there and took about 10 or 12 years to produce a plant, and it sort of tells me things.

Julie: That was Bryce, who is living with advanced pancreatic cancer. And we’ll be talking more about support from spirituality, however you define it, in another episode in this podcast series on the role of hope and purpose in advanced cancer, so look for that if you’d like to hear more.

Megan, I’ve heard the expression “memory making” towards the end of life. Could you explain what that means and how people can go about it?

Megan: Well, one of the things that people like to do before the end of life is leave a legacy. That’s a very important thing for many patients and it can take many different forms. People will reflect on their life, and there are different types of services available in the community to help you record your life story. You might make a scrapbook to remember important things. I knew one lady who made a CD of all her favourite songs so everyone could get a copy at the funeral.

Julie: Yes, some people plan their funeral in great detail, don’t they?

Megan: Well, that can be a very important part of getting ready to die for some people. I had one patient who got her spiritual strength from nature, and it was very important to her that she be buried some way in nature. And she did a lot of research and found a cemetery on the edge of Sydney which was just in the bush. They didn’t even have tombstones. But she was able to choose the part of, that piece of bush where she wanted to be buried, and she arranged for friends who would prepare her body for the funeral, and what people would say, and what people would sing. And it gave her a great sense of closure to know that she’d done all those things.

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John: It’s good to give yourself a little bit of hope, although I guess you’ve got to plan for the worst just in case as well, obviously it’s just to be practical, you know, make sure you have a will I suppose. Something else that was tough to talk to my wife was what would the funeral plans be if it does get me eventually? That was a difficult conversation as well. But, you know, rather than focusing on all the negative things – I mean, once you’ve gotten those conversations and those plans out of the way, it’s done and dusted, right? So, probably better to get them out of the way as soon as you can, I think would be my advice to somebody with a new diagnosis.

Julie: That was John, who is living with advanced brain cancer.

Megan, sometimes people just can’t even bear to think about dying or talk about it. How do you help them with that?

Megan: You can’t force someone to think about dying if they’re not ready. All you can do is give them the chance to talk about it when they are ready. So I certainly won’t push that information on someone, but every time I see them I’d say, “Is there anything you want to ask me?” and always make sure that open door is available. And some people won’t want to talk about it till the end. But I think that a lot of the fears people have about dying are often ideas or bits of information they’ve picked up about someone else’s death that may not be relevant to theirs. And so many fears can be put to bed with open conversation about what people are actually scared of and whether or not that is going to happen to them. If there are particular treatments people want to avoid, we have advance care directives that people can put in place so that we know their wishes even if they’re not able to speak to us. There are many ways of communicating with health care teams to make sure things that you don’t want are avoided.

Julie: We’re actually doing a separate episode on caring for someone in their last months, but just briefly, if a carer or family member or friend is listening to this and the person, they love is nearing the end of life, what’s your key message to them?

Megan: I think for carers the number one is: look after yourself. You will be no help to the patient if you fall apart. So, your own self-care has to be a priority. And I think that it’s important to realise that when we’re well, it’s things like our job and the car working and everyday matters preoccupy us. As we get sick, our health becomes more of our focus, but as we get closer to death, it’s relationships that are important. And when you realise your time is coming soon, people want to say thank you, they want to say I’m sorry, they want to say forgive me, I forgive you, I love you. And prioritising relationships can be very important to someone at the end of life. And I think if carers can realise often the patient would like to have them as their wife or their husband or their son rather than their carer, and try to maintain that part of the relationship as well.

Julie: Look, I want to close by asking you if someone’s just received a diagnosis of advanced cancer, what are the three tips you’d give them for that very first moment of engaging with that information?

Megan: Give yourself a bit of time to get used to it. It’s a huge thing and it’s normal to need to take a bit of time to process it. Think about what’s most important to you and the things that are important to get done in the time that you have left. And remember to make sure that you live until you die.

Julie: What does that mean “live until you die”?

Megan: The advanced cancer experience should be about living with cancer, not about dying with cancer. The dying will come in its time and we can focus on the end of life things then, but you need to think about all the things that are still left and all the things that you can still do to get the most out of that last stage of your life or you’ll be cheating yourself. We see this last stage of life as one of living, of enjoying life, of squeezing every drop out of it that we can, for as long as we can.

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Julie: That’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Megan, Susan, Bryce and John 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 might want to listen to our podcast on pain in advanced cancer. In that episode, I talk to palliative medicine physician Professor Melanie Lovell about how getting pain management right can make such a difference:

Melanie Lovell: Getting it right really transforms people’s lives. It allows them to do so much more. We know pain can interfere with all aspects of quality of life: mood, or relationships, or sleep, or working. And so, if we can get it right then people can live really well even though they’re dealing with cancer.

You can find that episode “Managing Pain when Cancer Is Advanced” 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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