Caring for Someone in Their Last Months

EPISODE: CARING FOR SOMEONE IN THEIR LAST MONTHS

[EPISODE ID]: You’re listening to “Caring for Someone in Their Last Months”, an episode of “The Thing About Advanced Cancer”.

[Music]

Jane: If you think about it, there’s so many losses not only for the patient, but also the losses for the carer. You know, probably every day there are literal losses with regards to what the person can do. The meaning that had for their relationship. And it’s also part of a normal process of thinking about, you know, preparing yourself in some respect that this person will not be with you for a long period of time.

[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 if you’re a carer, it can be daunting to think about caring for someone in their last months. You may have many questions and fears about what lies ahead and what support is available. To answer some of those questions, we’re talking to Jane Phillips, Professor of Palliative Nursing from the University of Technology in Sydney. Jane has provided care for many people near the end of life.

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, Jane.

Jane: Thank you, Julie.

Julie: In this podcast series, we have another episode called “Caring for Someone with Advanced Cancer”, and in that we explain that some people are now living for many years after they are diagnosed. But today we want to focus in on the role of the carer when the person with cancer has only months or weeks to live, and that does mean we’re going to talk about death and dying. Jane, in your experience how do carers cope with the news that it’s only a matter of months or weeks?

Jane: Well I think carers respond in all sorts of individual ways just as they respond to other things in their life. So, for some carers it will be absolutely surprising and quite devastating news and they will be shocked and really be wondering how they’re actually going to cope. For other people it will actually be a confirmation of a suspicion or a fear that they’ve actually had but may not have voiced. And in actual fact that some people might actually even feel relieved to find that what their suspicions were have actually been confirmed.

Julie: It must vary so much, would people have a sort of tumble of emotions?

Jane: Yes totally. And that could all be within the one day or, you know, some days may be better than others, and I think there’s no really tried and tested rules about it. We will all respond in our own very unique and individual ways.

Julie: So, if you do experience relief, don’t feel guilty.

Jane: No, because I think that it’s often a confirmation and it’s almost like the elephant in the room. It may have been that as a carer you’ve been highly suspicious or highly concerned that the person you’re caring for is actually deteriorating and they may not be prepared to acknowledge it. The medical community, the doctors and nurses that they’re seeing, may not have acknowledged it. And so that actually puts you in quite a hard position. But I think once it’s confirmed, for some people it can feel a relief in terms of knowing and then being able to plan accordingly.

Julie: We’ll come to planning in a moment, but how can the carer support the person who is dying once it’s out in the open and being discussed that death may happen within months or even weeks? What’s the role of the carer in that very precise end-of-life period?

Jane: Well, I guess the thing is that if you’ve put yourself in a caring role, that is that you’re prepared to walk with that person and be there for them. You know, the really important thing is that you’ve made a public statement and you’ve demonstrated that commitment in terms of your actions. And I guess the next step is probably just making sure that they’re aware that when they’re ready to talk, that you’re comfortable to have that conversation with them.

Julie: So, is it a good idea to speak openly with them about the fact that they are dying?

Jane: Everybody will do it differently. But in the ideal world I think it is much easier if you can have an open conversation, and it may just be one conversation that you would have with the person that you’re providing care for. But it’s about finding the right time for that because remembering the person has actually, themselves, have just heard this news and they’re coping with their own emotions. So, sometimes that might be the ideal time. Once again there probably no hard and fast rules but I guess in my experience it’s much easier if you can come from a position of honesty.

Julie: But it can be hard to talk openly about it – even the words “death” and “dying” seem taboo for many people. And it may not be part of your culture to speak so plainly about death. Does it matter what words you use? What are your thoughts?

Jane: I guess as a palliative care nurse I would always use death or, you know, dying unless I was advised otherwise from the patient or family. I think people have to choose the words they are comfortable with, but they also need to make sure there’s no ambiguity.

Julie: Why is it important to avoid ambiguity?

Jane: The person may actually misunderstand what you’re actually saying or what you’re actually offering to do. But I think it’s interesting that you say talking, because I think in a caring role there are opportunities to talk but probably it’s more important to listen.

Julie: Why?

Jane: To listen to the person that is facing the end of life to really understand what’s important to them, if you don’t already know, and to confirm if you know what’s actually their desires and wishes, what do they need from you?

Julie: One question I found helpful when I’ve been with someone who I knew was dying was to say: what do you think about what the nurse and doctor said? And then sometimes the person will say: what did they say? And it can be a process of clarifying and checking the person’s understood, because if you’re very unwell you don’t always absorb information easily, do you?

Jane: No, that’s actually, you’ve got a really great strategy to be able to recap what was actually said but frame it in a way that you give the opportunity to the patient to either expand and respond or to close the conversation down.

Julie: Susan had to find ways to talk about death and dying after her partner Peter was diagnosed with advanced prostate cancer.

Susan: We do try to talk about mortality and we do talk about death, we do talk about Peter dying. And at first I found that enormously scary and it felt like I was staring down an abyss and I just could barely even go there. I would cry and I would just have this huge wave of emotion. But I don’t feel like that now, I feel that I’ve come to terms with that. And I know, I know it will be enormously sad. And I can’t, I find it very hard to even imagine how I would be on my own. Peter is very reassuring. He says, you’ll be fine. And I know I will, even though, of course, I know I’ll miss him enormously. And I will want to come home and tell him all about how good the funeral was and he won’t be there. So, it’s horribly sad, but I like the way we can actually talk about it. I find it really helpful.

[Music]

Julie: Jane, in an ideal world, someone would already have been getting their affairs in order a long time before the last weeks or months of life – so things like writing a will, putting together an advance care plan for medical issues, making funeral plans and so on. But if the person with cancer hasn’t done that already, is this the time they need to do it?

Jane: Ideally, like you said, people have done it before, but some people may not actually even get to that point. It may just be too difficult for them to have those conversations, that may not be something that they want to do. But I think we need to make sure that we give people opportunities to have those conversations, because it does make it much easier for the caregiver after the person has died if they are really clear about what the person’s wishes were, particularly around funeral arrangements, but also too, where they would like to die. We make an assumption, we often say: Where would you like to die? And people will often say: At home. But I think there are actually two questions we need to ask and that is: Where would you like to spend the bulk of your time? And where would you like to die?

Julie: Can I just ask you, you hear this expression “a good death”. What does that term “good death” mean? And from a carer’s perspective, what’s the single most important thing that can do to try and help the person have one?

Jane: Well, I think to me a good death is really individualised, it’s actually what you would want or what the person would want. So, I think everybody, there’s some core elements to what most of us would consider a good death. But the way it is operationalised is probably very individual. So, people want to actually be comfortable. They want to have, to be provided with dignity. They want to be treated like they’ve always been treated. They don’t want to be a burden to others, and they want to get expert care and be treated in a respectful manner. And sometimes the place of choice for people is really important, but quite often people will want to stay at home for as long as possible, but doesn’t necessarily mean that they want to die at home.

Julie: Because many elements of a good death can be available in a hospital setting. Hospitals will often even offer a separate room won’t they, if available?

Jane: Yeah totally. And I think you know often we do get to hear of some of the less than positive experiences about people dying. But in my experience that if a hospital and the team have acknowledged that the patient is dying and involve the carer in that conversation, there’s a lot of control given to the patient and family. And I think about in the community where I worked in rural New South Wales, there was an El Salvadorian family and the man’s symptoms were really sort of becoming quite difficult to manage in the home circumstances, and there was the issue of language, and there was a decision made reluctantly by the family to admit him to a hospital. And part of their reluctance was that they felt they wouldn’t be given the opportunity to perform the cultural rituals that were really important. You know, the hospital went out of their way to enable that family to deliver the care that he actually needed.

Julie: So, that example shows that dying at home is not the only way to have the sort of death that the person and their family wants.

Jane: Really, we really should be able to provide best evidence-based palliative care regardless of the bed the person chooses to die in.

Julie: We know that it’s important to plan ahead, but what sorts of things does the carer need to plan for? What will make those last weeks or months as comfortable as possible?

Jane: Well, I guess there’s, when you’re caring for someone there are a lot of practical issues and there are psychological issues and there’s often emotional and spiritual. So, I think it’s actually thinking about all of those, but often carers in the first instance, once they’ve overcome their feelings of distress or relief or whatever that in actual fact they’re most concerned about – the really practical aspects about how they’re actually physically going to be able to manage the care –

Julie: So, that care might involve thing like managing medications, preparing suitable food so they can keep eating, helping them get comfortable –

Jane: Yeah, all of those type of things – getting people in and out of bed, often they’re, you know, there can be a lot of appointments, you know, getting in and out of buildings, in and out of cars, arranging transport. It’s actually really – when you’re a caregiver you’re really very busy. It’s actually quite a burdensome task to take on and I think that often what happens is that people don’t necessarily see themselves as carers. Particularly with cancer, you suddenly just find yourself in this role. And often the roles that you’ve taken on, there’s been incremental increase. You start off, you know, perhaps supporting a partner or your sibling or, you know, another family member or a friend, and then all of a sudden you find you that you’re actually doing much more than you had ever envisaged.

Julie: That is such an important point, because the word ‘carer’, it’s almost a professional technical term, and it may be a while before person realise that’s what they are. They might think of themselves as wife or partner or sister or brother and then they begin to realise the health system is calling them a carer and there’s quite a lot of responsibility that comes in accepting that term.

Jane: Totally, totally.

Julie: So, what can help someone manage that responsibility of caring for someone? What are the practical sources of support?

Jane: That’s actually often really quite hard to navigate. And I think many people find it very difficult. The Cancer Council help line would be one source.

Julie: Yes, you can call Cancer Council 13 11 20 Information and Support. And are there other options?

Jane: Yes, your GP ought to be able to refer you. If you’re still visiting your medical oncologist or radiation oncologist or haematologist, then they will be able to refer you to a palliative care team and I think one of the things about palliative care is that it’s much easier to work with a patient and a carer if you get earlier referral, in that you have an opportunity to establish a relationship with them but also to plan and to just slowly introduce ideas that may make it easier for people to manage at their preferred location of care.

And palliative care is about caring for both the patient and the family, and the family is whoever the patient defines as being the family. And that’s another reason to involve a palliative care team, because the focus is very much not only on the patient but actually also on the caregiver, and some of the concerns that they may have or the stresses they are experiencing. And also too because palliative care can be both hospital-based – it may be in an outpatient unit – but it’s also community-based. So, quite often you may be the palliative care nurse going to visit the patient and the carer at home

Julie: And I’d also suggest that if you’re still connected with a cancer centre or hospital, you can ask to see the social worker, and social workers can be great at helping you sort out practical matters and linking you up with other sources of support.

Jane: Yeah totally and also quite often I think we’re neglectful in asking our patients about, also about their financial needs, and increasingly even though we have universal health care there are many out-of-pocket expenses that families experience in terms of managing someone during this period of having advanced cancer and deterioration.

Julie: So, a social worker would be able to explain if there is any financial support available to you. I’d also mention Cancer Council 13 11 20 again — depending on your circumstances, they may be able to refer you for legal and financial advice, and they can also point you in the direction of other types of practical and emotional support.

You’re listening to “The Thing About Advanced Cancer”, a podcast from Cancer Council NSW. If you are looking for more information about support for carers, or to listen to more podcasts, you can visit our podcast page at cancercouncil.com.au/podcasts – just click through to “The Thing About Advanced Cancer”, and then click through to this episode, “Caring for Someone in Their Last Months”. You can also call Cancer Council 13 11 20 to request free booklets or just to talk to someone about your concerns…

Julie: Jane, a palliative care team can obviously provide a range of practical and emotional support, but I believe you’re also experts in managing difficult symptoms – is that right?

Jane: Yeah, most definitely. So, often when I’m referred to see a patient my opening line is – you know, once I’ve done the introductions – “really my job is to keep you as well as possible for as long as possible”. And a lot of that is actually really attending to the physical, the spiritual and the social, psychological needs. So, symptom management is really an important part because to be able to engage in life you need to have your symptoms well managed

Julie: We’re actually going to have other episodes on managing symptoms – we discuss symptom management in our “Living Well with Advanced Cancer” episode and we also have episodes on specific symptoms, such as pain and breathlessness. So, look for those to find out more about how symptoms can be managed.

Look, if someone does want to spend their last weeks at home, particularly if they would like to die at home, you’ve indicated that the palliative care team is there to support the carer. One thing that can worry people is what if something happens on the weekend or in the middle of the night – say, if you need more medication or the person suddenly becomes distressed?

Jane: I think that’s actually a really important part of palliative care. If you’re involved in a palliative care service, they will have after hours contact details so that you will know who to call. Part of the palliative care team role is actually about proactive planning. So, I’ve spent a lot of time working in rural New South Wales managing big palliative care programs, and the issues there are often more amplified than they are perhaps in Sydney. So, you would always be thinking about what is this person going to need in the next couple of days? You know, what do they need between Thursday afternoon and Monday afternoon and who’s actually going to be around to be able to provide that? Do we have the medications in the pharmacy? Have we got the scripts? So, that’s actually really the role of the palliative care team and it ought not to be, you know, something that the carer really has to worry about.

Julie: What if you aren’t connected with a palliative care team and the person you’re caring for seems to be in some sort of really serious trouble and you’re not sure what to do?

Jane: So, it’s more challenging if the patient hasn’t actually been referred to palliative care because they’re really big issues. But I think what carers need to realise is that if they’re unable to resolve the situation or settle the patient and their concerns about their physical or psychological wellbeing, then you can actually always call an ambulance. But you do need to be really clear about when you call an ambulance, it is about them taking action. And the reality is that the person might get admitted to hospital, which may or may not be what they had wished.

Julie: Now, there can obviously be a great deal of pressure on the carer, particularly as the end approaches. What’s your advice to them?

Jane: Look after yourself and accept help. People will be really generous in terms of offering to assist and, to be honest, caring for someone who is dying at home, you actually really need a team. So, it’s much easier if you have, say for instance, if you’re looking after parents, if there’s a couple of you who are able to assist, that makes it so much easier. I think ultimately someone has to take responsibility as being the primary caregiver, the point of contact, but they need support from other people. Caring for someone at home is, can be hard work.

Julie: Yeah and that’s both physical and emotional, isn’t it? So, try to involve others. Ask for help. Have some breaks?

Jane: Totally have some breaks. Sometimes people, because I’ve worked in palliative care services where we’ve had volunteers, and so we’ve had volunteers available to come and sit with the patient, either, you know, during the evening or during the day. So, the person can get out and for some caregivers they really welcome that but for others they’re not really wanting to accept that because they see the time as being very precious and, you know, they’re thinking that I’ll never get this time back. I just want to be with the person. So, it’s very different.

Julie: So, I guess it’s a personal decision about how much of the care you want to do yourself, and the palliative care team will respect that, but there is support available that can help you nurture yourself so you can see it through.

Jane: Yes and I think increasingly as, one of the challenges is that sometimes it’s quite hard to predict how long it’s going to take for the person to die. And it’s the uncertainty that is often the really hard thing for both the patient and particularly the caregiver to live with, and particularly if they’ve actually had to put other things within their life on hold. You know if you’re the younger carer and you’ve got, you’re working, you know, it’s actually really quite hard to say what length of time you need or, you know, if you’re the daughter that’s flown to be, you know, spend time with your mum or your father to care for – often it is really difficult to know how long you are going to be required.

Julie: When Susan’s partner Peter was diagnosed with advanced prostate cancer, he was initially given weeks to live.

Susan: It was a very difficult time. He was very ill. Peter managed to sit in a chair for about six weeks and basically not move. He would hobble to bed and hobble to the toilet and hobble back to the chair. I could look after him and I could meet all his needs. But I remember thinking if he becomes any less mobile than this, then we’re really in trouble and things will have to change. By the new year he actually had a day where he said, “Ah, I feel a tiny bit better today”, but it had been a very tough time because I was also thinking, well, this is it, he’s going to die. I even started to think about his funeral and what life would be like for me as a widow and how I would cope. And then he didn’t die. So, then I had this huge process of having to adjust to him still being here, even though he was still very unwell. All through this, I’ve been more than happy to be his carer. The tricky thing is I think, sometimes trying to be his carer, his partner, his lover, his life companion, just swapping between roles, that can sometimes be a bit tricky. But I think that is a big issue that everyone in my position probably has to face.

[Music]

Julie: Jane, emotional support for the carer during this intense period of caring or even after death – is that something the palliative care team can provide?

Jane: Yeah, most definitely. All of the palliative care team can provide varying levels of emotional support. But most teams would have a counsellor, a psychologist and/or social worker who was involved, and palliative care is not just, doesn’t end when the person dies. So, there’s always bereavement follow-up, and so the person would be given an option about numbers to contact and be followed up after the person’s death.

Julie: A lot of people have never seen someone die, they don’t know what to expect. What would be the signs that the person might only live for another day or two?

Jane: For many people they will have often fluctuating levels of consciousness in the last couple of days, so they spend more time asleep. And some people actually end up being unconscious at the time that they die, whereas others will be still awake but not really able to communicate.

Julie: And that fluctuating, it can be also fluctuating sort of interest in the outside world or the people around them too. It’s not only consciousness, is it? It’s almost an inward turning.

Jane: Yeah, I think that’s probably a good way to describe it. I think you’ve just got so much less energy and it’s really probably the way in which the body, you know, is winding down and that your life is coming to an end.

Julie: And do we know whether people can still hear you in those final stages, when they might not be responding to you? How much are they aware of what’s going on?

Jane: I always take the position that people can hear and I always say that to families, to treat the person as you would have done before. Say the things that you may not have had a chance to say, let them know when you come into the room, leave the room or if others come into the room, because we know that hearing is actually one of the last senses to actually go, the person may just not be able to respond.

Julie: And touch, cuddle, kiss?

Jane: Yes, all of that, you know. Often people might be lying in bed next to the person, that’s actually fine.

Julie: Sometimes people start to mourn the loss before the person is gone. I’ve even heard this expression “anticipatory grief”.

Jane: That’s actually really very normal. And if you think about it, there’s so many losses, not only for the patient but also the losses for the carer. You know, probably every day there are little losses with regards to what the person can do, the meaning that had for their relationship, and it’s also part of a normal process of thinking about, you know, preparing yourself in some respect that this person will not be with you for a long period of time.

Julie: So, Jane, when it comes to making sense of this experience, how do carers do it? In hindsight, do they find it a rewarding role?

Jane: I think it’s an individual experience. Many carers would actually say to you it was, you know, it was hard but they were really pleased that they were able to do it, but for others, you know, for a variety of reasons, may not necessarily have those positive experiences, and may actually be left feeling not only exhausted but somewhat resentful about it. So, I think the important thing about caring – and I think as a society it’s probably part of a bigger conversation we need to have – is that we need to ask carers about if this is a role they want to take on and the extent of the role, the extent of the involvement that they wish to have. Because not everybody is really comfortable about being in a caring role on a permanent basis and given the level of intensity. But there’s an assumption made because you’ve positioned yourself or seemed to be the carer, that it’s natural that you would take on that role.

Julie: Hmm. Before I let you go. If you had to just sum up in a nutshell, the three key bits of advice to someone who’s decided, yes, I want to care for this person in my life with advanced cancer – your three basic tips.

Jane: Let the health care team know – make sure that you get the help and support that you actually need. Link up with the palliative care team. And don’t be afraid to accept help, and the help will come from multiple sources and often from sources you would never thought about.

Julie: That’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Jane and Susan 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 “Living with Dying”. In that episode, I talk to Dr Megan Best about how people nearing the end of life can make the most of whatever time they have left:

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.

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

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.

[Music]

END