End-of-Life Care at Home

EPISODE TRANSCRIPT: End-of-Life Care at Home

Julie: You’re listening to “End-of-Life Care at Home”, an episode of The Thing About Advanced Cancer.

[Music]

Cynthia: Well, I think that most people have an image of dying at home peacefully in familiar surroundings with their family and friends and pet nearby, and it’s a very appealing image and achievable for some. But I don’t think people fully appreciate that for this to happen, that certain conditions really do need to be in place.

[Series Intro]

[woman] The Thing About Advanced Cancer

[man] a podcast from Cancer Council NSW

[woman] information and insights

[man] for challenging times.

Julie: Hello, I’m Julie McCrossin. And the thing about advanced cancer is that about 80 per cent of people say that they want to die at home, but only about 20 per cent of us actually do. So if you’re a carer of someone who wants to die at home, you may be wondering what that would involve and how you would manage. And that’s why we’re talking to palliative care specialist Dr Cynthia Parr from HammondCare in Sydney, because Cynthia has supported many families to provide end-of-life care, including at home.

Just to be clear, this podcast contains general information only, so we recommend that you talk to appropriate professionals about your individual situation and you can also call Cancer Council 13 11 20 if you’ve got any questions.

We’ll be hearing more from Cynthia in a moment, but first of all, we asked three carers what was involved in caring for someone towards the end of their life at home.

Rob: So, a normal day would be getting up, checking that everything was okay with my wife, giving her medications, turning her in bed, which I did every two hours, and then cooked and contacted people that had to be contacted, organise medications to be delivered. And, you know, I suppose just the other sorts of things you have to do.

Libby: Towards the end, I was actively involved with helping Mum use the oxygen machine on a nightly and daily basis, hooking her up to that, administering the liquid morphine for her when she was in pain, making sure that she took the anti-anxiety medication. Yeah, organising washing and taking her to appointments, that sort of thing.

Paul: I would usually be either reading up about what was happening next so that I would understand it, or I’d get phone calls. At one stage he had four or five different specialists around him, so, you know, there was this constant sort of back and forward that I was having to coordinate all the information I was getting, all the instructions I was getting, the stuff that needed to be acted on immediately. It was really like, I would call it mega-scheduling, you know, multitasking in the extreme for me. It was a full-time job. It became, as time went on, a full-time job. And I actually stepped out of work, not completely, but almost entirely. So, for that that four-month period, I was almost 100 per cent with him.

[Music]

Julie: We’ve just heard from Rob, Libby and Paul about their experience as carers, and now I’d like to welcome palliative care specialist Cynthia Parr.

Cynthia: Thank you, Julie.

Julie: If you’re a family member or carer of someone with advanced cancer who’s been given a poor prognosis and they’re saying they want to die at home, is that a realistic hope and expectation? Can you have a good death at home?

Cynthia: You can have a good death at home, but you can also have a good death in a palliative care unit and an acute hospital. You know, dying at home may be a priority, but it may not be the only priority. And I guess the thing that you have to do is you have to look at all your priorities, or your goals and wishes, and try to match that best with wherever location you’re going to achieve these goals. Not everyone wants to die at home, that’s the other thing. And sometimes people want to die at home and down the track, they change their minds. And that’s okay, too.

Julie: What if the person you’re caring for hasn’t actually said anything about where they want to die? How do you start the conversation?

Cynthia: Talking about dying, it’s very hard, it’s very tricky, even for health professionals. Knowing where to start is difficult and everyone is different. Sometimes people want to talk about everything, and sometimes people are overwhelmed and they don’t want to talk about everything. A good idea is to start with simple questions, perhaps a question like: Do you want to talk about how you’re feeling or what you know, or, what are you thinking about? Start with that. Or, you know, I’ve been talking to my doctor and she’s asked me a few questions, I wondered if we could talk about that? And then just be present and listen, and listen to their fears and listen to their plans and find out what their priorities are.

And I guess some of the things that you can weave into the conversation are things like where they want to be, where they want to be cared for, who do they want to look after them? What sort of treatments would you want to have? What sort of treatments would you not want to have? And your health professionals, your doctors will guide you as to what is appropriate or what is not appropriate. And another thing to consider, perhaps, is who do you want to make decisions for you when you’re not able to speak for yourself or you’re in a position where you can’t make decisions for yourself? So, these are some of the questions that are important to ask. And it does make for awkward conversation, but you’ll be very glad for it further down the track.

Julie: And I believe that those conversations are a part of what is known as advance care planning, and we have more information about that on our website. So, Cynthia, let’s say you’re a carer and you’re thinking about whether you can provide end-of-life care at home. What are some of the key challenges you’re likely to face?

Cynthia: Well, the list for carers can be challenging. So firstly, you’re going to have to help with personal care: things like helping with personal hygiene, preparing meals, feeding, cooking, cleaning, being chauffeur for the patient, transporting them around to their medical appointments, you know, all the treatments that they may still need to have. You’ve got to do all that, and then on top of that, you’ve got to do what you normally do, which could be work or look after children. Carers also have to be like counsellors. You have to be present and you have to listen. You have to comfort and you have to hold it together as much as you can. And then the carer also has to act as a nurse. You have to administer medication. You have to look at the side effects or the effects, good or bad, and report to the nurses and doctors what these medications are doing. It may be that you have to be involved in wound care and yes, nurses will help you, but you still need to have a basic understanding of how these things operate. And then you have to coordinate all of the above and coordinate it with all the community teams and with the acute care teams. So, a lot of, a lot of challenges.

Julie: Now, if you as a carer, decide to take on all those challenges, I believe you can be supported by a palliative care team, but how do you actually get connected with one of those teams?

Cynthia: Well, you will need a referral from a doctor. So, this could be your general practitioner, and this can also be your oncologist or surgeon. What we need is a medical referral. If you just wanted to know about palliative care, the services that exist, the supports and what’s available in your part of the world, Palliative Care Australia have got a website and a directory, and there is a section where you can type in where you live and on the screen will come up the services that cater for your area. So, that’s another way of finding out about the service.

Julie: And what does the palliative care team actually offer?

Cynthia: Well, I think what I could do is talk a little bit about the checklist that I go through in my service when someone wants to stay at home and die at home. So, when this happens, the GP and the palliative care team make a commitment to come and see you at home and visit you regularly – as much as you need to be seen, as much as you want to be seen. And we formulate a treatment plan and prescribe the necessary medications. The nurses will then come in and make sure that the plan is in place and they will teach you about the medications and how to give them if necessary; they’ll help you with wound care, they’ll teach you how to be involved with basic personal care, mouth care, turning, bowel and bladder care. And then the other team members also come in and assist you. The social worker will come in and, if necessary, direct you to help with matters financial or legal, if you need help with children or aged care services, if you need parking schemes, assistance with meals, that sort of thing. The physiotherapist will see you so that they can give you an exercise plan that is appropriate to keep you moving, keep you functional, help with symptoms of breathlessness, teaching you techniques to help with breathlessness, positioning your body so that, you know, pain is eased. And then we also have the pastoral care worker who will come and assist you with spiritual needs.

Julie: And, you know, one thing we haven’t mentioned in that supporting of someone who’s getting increasingly unwell is the physical aids that you might need. Can you get them provided to you free of charge or do you have to buy them? I’m thinking of a hospital-style bed or a chair with a commode in it or a walking frame – you know, all those practical things that can make care at home easier.

Cynthia: Okay, so the palliative care team who will be looking after you, it’s a multidisciplinary team and one of the team members is an occupational therapist. And the occupational therapist assists you, really assesses how you function at home and provides you with aids just to make life easier to help with mobility, to make movement around the house easier. And so we’re talking about mobility aids, walking frames, wheelchairs in the shower. You may need a shower chair, the proper mattresses, the cushions, the proper hospital beds. Now, how you get this equipment will vary from service to service. In my service, for instance, most of the equipment can be provided without charge. But it may be that you may need something specialised and you will have to pay for whatever piece of equipment that is.

Julie: One of the real challenges in my observation is the round-the-clock nature of care. You know, if you’re really seriously considering supporting someone to die at home, it’s round the clock – it’s Friday night, it’s 3 am Sunday morning, it’s those times when getting help can be really hard. What level of professional care is available? And within what hours?

Cynthia: I agree with you, 24-hour care is hard work, and you would have to consider your own needs. You’re going to have to sleep. You’re going to have to eat. And it is very difficult for one person to do everything. And I mean, the first thing you would do is you would gather the resources that you have available to you in the way of your friends and your family. And so the palliative care social worker can actually help you to seek help from your friends, from your family, from your local community. If you belong to a club or a church, these organisations can help you practically, you know, childminding or providing meals, that sort of thing. And also you can be referred to other services that you may be entitled to: aged care services or, if you need help with children, services that may help with counselling for children. So, the important thing really is to gather a village of carers around you to help you share the load.

Julie: Of course, there are private services as well. If you have the funds, you could bolster the public provision with some private nursing care or carer support.

Cynthia: If you are in a position where you can afford these services, yes, there are private services, private nurses. I think now’s a good time to mention the Palliative Care Home Support Program. And this is a program that is available in seven health districts in New South Wales, and what it consists of is a 48-hour package of care, where you are entitled to, if you are caring for someone dying at home, to a package of 48 hours of a trained worker coming to visit you at home and to help you with things like domestic assistance, respite care and, in collaboration with a coordinator or your local doctor, basic nursing care. And they can be consecutive hours or they can be broken-up hours, like two hours, three times a week every week until you make the 48 hours. And it just gives you a little bit of a break. And the trained workers can also guide you and help you. And this package is available in the seven districts.

Julie: And I expect there may be similar types of packages in other parts of New South Wales or Australia, so you can check with your palliative care team to find out what’s available in your area. So, the support you receive can usually be tailored according to what you and the person you’re caring for need. Here’s how it worked for Libby and Rob.

Libby: So, we didn’t really see any active support until maybe one to two months before she died. And that was in the form of a doctor and a nurse who came and gave help, mostly with medication, you know, obviously morphine. And towards the end, mum had anti-anxiety medication that she used. And in perhaps the last two weeks of my mum’s life, a nurse came who was there to help with her breathing, because she did have an oxygen unit at home. And that was something that she needed help with.

Rob: Well, it was always agreed that it’d be better if she could be at home and I suppose it started with talking to the oncologist who referred us to the palliative care team. The palliative care team actually offered medical support in a sort of multidisciplinary team approach with my wife’s GP, so we used to talk to each other, but they offered equipment like a walker, bathroom support, where to get a bed because we needed a proper hospital bed, you know, on loan for six weeks, I think it was. And also they put me in touch with the community nursing system in our area. And so they’re the sort of things they offered.

[Music]

Julie: You’re listening to The Thing About Advanced Cancer, a podcast from Cancer Council NSW. If you’re 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, “End of Life Care at Home”. You can also call Cancer Council 13 11 20 to request free booklets or just to talk to someone about your concerns.

Julie: Now, Cynthia, when you’ve got the support of a community palliative care team, do you have a number you can ring out of hours? Does that work, or are you dealing with Accident and Emergency?

Cynthia: Most services will have a 24-hour number that you can contact out of hours if you need assistance, really for anything – any questions about medications or if something happens unexpectedly, you will receive guidance about what to do or who to call. The call is usually taken by a palliative care nurse who is quite senior and if needed to, the call can be escalated to palliative care specialist. Certainly in my service 24/7, you will have access to that number. It will vary from service to service, of course.

Julie: That’s what I was just about to say, we’re really giving people information so they can make a list of questions if they wish to support someone to die at home – these are things to sort out in advance so everybody feels safe. Something that carers may worry about is how they will manage symptoms that might happen towards the end of life. What can they do if the person is in severe pain or having a lot of trouble breathing, or if the person becomes very confused and agitated?

Cynthia: As clinicians, we tend to have an idea of what we think will happen, what sort of symptoms to expect. But yes, you’re absolutely right. Think of a symptom, any symptom, and that can escalate or intensify, something quite shocking can happen out of hours. And the way to deal with this is to expect the unexpected and have a plan. And when these sorts of things happen, what’s likely to happen is you’re going to call the 24-hour number and they will direct you to call the ambulance or call the ambulance for you.

Julie: If people have a vision for how it’s going to be and then they find it’s overwhelmingly hard, either emotionally or physically, or the carer themselves becomes unwell, or the patient themselves no longer feels safe and wishes to have some time in hospital or a hospice or palliative care unit, whatever – do people feel full of regret or shame or embarrassment or disappointment or grief that they haven’t done what they planned? What’s your observation of that?

Cynthia: I think that people do feel very bad when the people that they love go into hospital, if the plan was for them to stay at home, but they’re not bad carers – they’re just in bad situations. I mean, if you’re a carer with health problems of your own – I’ve just, you know, mentioned the list of very challenging things – if you have health problems of your own, if you have many children to look after, you could even be needle-phobic like some of the carers I’ve had to deal with, you know, this is not a personal reflection. It’s just that you’re in a bad situation or in a situation which does not allow you to be a carer. And I sometimes think, what is it that makes us have these unrealistic expectations of ourselves? Because we’re not, we’re not superhuman. We’re human, and we really have to let these feelings of guilt go.

The other thing is, when people do come into hospitals from home, this is not necessarily a bad outcome or a negative thing. And just to give you an example, I’ll tell you about a patient I had who wanted to live at home, a very capable man, a businessman, a very capable family. And they were managing very well. And 48 hours before he died, his symptoms escalated. And nothing that we were doing at home was working. And we got the last bed in hospital. And he died 48 hours after. And they wrote a letter saying, thank you very much, because we know that if he didn’t go into hospital, he would not have died as comfortably as he did, and for this, we will be forever grateful. So, the image of dying at home, if you have to come into hospital, it’s not necessarily a failure because you can also die well in hospitals. And that’s just the reality of it. There is what you desire and what happens. But in either case, you can still have a very positive outcome. You can still have a good death in hospital.

Julie: And even if the person is transferred to a hospital or palliative care unit or hospice, there can still be a great role for family and friends at the bedside, aren’t there?

Cynthia: Yes. I mean, you’re still the carer. You may not be dispensing the medications or doing, you know, the washing, but you’re still the carer and you can still be vigilant and you can still report what you’re seeing to the ward staff who will be very grateful for your input. And you can still be there for emotional support and your voice and your touch, your presence – do not underestimate your ability or your power to be of comfort to the person that you love. You’re still the carer whether you’re at home or in the hospital.

Julie: If you are at home with the person you love who’s died, what actually happens next if there’s no professionals there?

Cynthia: Well, I think the thing is, if you are expecting a loved one to die at home, if this is a planned death at home, your general practitioner would have made the commitment to complete a death certificate. So, there’s no need to worry if someone dies, say, in the early hours of the morning, you can sit and you can wait and you can contact the general practitioner when the surgery opens to come and complete the death certificate. And you can contact the palliative care social worker, who can help you with other necessary plans with funeral homes or religious services or support. So, if it’s a planned thing, this is what we expect to happen.

Julie: We’ve run through many of the challenges, as one would in a discussion such as this, so people can think it all through and make an informed decision about what they’re prepared to commit to or to ask their family to do. But from your observation of working with different families, how do most carers feel after the death of someone when they have successfully supported them to die at home?

Cynthia: I think they feel very glad that they’ve been able to enable, you know, the person they love to stay at home and grateful for their role in it, feel that they have achieved something great. Every so often in the bereavement services – or I might get a phone call later down the track – they may voice concerns that maybe they didn’t give this drug enough or maybe they gave too much of it. Or, you know, I just had a really hard time knowing what was what, what the symptoms meant. But all in all, things go well and they feel very glad for their part in end-of-life care at home.

Julie: Look, thank you so much. I’ve just got one last question. Just pulling right back to that moment where someone and their family have just heard that a person has got a diagnosis of advanced cancer and that the prognosis is poor. What should be the top three first things that that family and that person do together? What would be your tips for the first three things to think about and talk about?

Cynthia: The first one is to accept help and to build a village of carers around you. Gather your friends and your family. Now is the time to lean on them. Talk to your church, your schools, any clubs that you belong to, talk to a social worker, get whatever health services you’re entitled to involved, involve your local doctor, involve district nurses and your local palliative care team – just have an army of support that you can choose to have and use as much or as little as you want to. Because we’ll share the load and we will be by your side. So that’s my first step.

My second tip is have a plan. So we’ve talked about advance care planning, how it can be tricky, but how necessary it is. So, whether it’s advance care planning or just any plan in general, a will, letters that you have to write, unfinished business. Just do all that, it may be unpleasant, get it out of the way.

And my third tip, which after you’ve done the first two, you’ve got – you know, the groundwork is in place and you have your support, you have your plans – I think my third tip is to just go back to living and keep doing that which is meaningful to you, whatever that may be. Because I’ve had the privilege of looking after so many people at the end of their lives and I’ve continued to see them live, live in the moment or to continue to seize the day with pragmatism and courage and sometimes a sense of humour. So, maybe like them, you’ll do great things, like maybe you’ll travel or get married or have a bucket list and, you know, get in one of those light planes and jump out with a parachute. And if you’re creative, maybe you’ll keep playing your music, maybe for the doctor when she comes to visit or create a garden for your son that he can remember you by. Or maybe you’ll just want to do nothing, and that’s fine, too. And your family will just turn your bed so that you’re looking at the garden at one side and a big screen on the other side, and you can keep watching your Monty Python movies and eat boiled lollies because that’s what they’ve done. So, I think they’re my tips. Just accept help, have a plan and just seize the day.

Julie: And this idea of “seizing the day”. What can the carer do to help the person do that?

Cynthia: You can seize the day right along with them, be their companion – maybe not the skydiving bit, but they will need your assistance with mobility, with transport and companionship. Be present.

Julie: That’s it for this episode of The Thing About Advanced Cancer. Thank you to Cynthia, Rob, Libby and Paul for sharing their insights. And we’d also like to thank the NSW Ministry of Health for their generous support of this podcast.

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. And if you’d like to subscribe to the show, you can do it in Apple Podcasts or on your favourite podcast app.

Julie: If you found this episode helpful, you might want to listen to our podcast on managing relationships as the carer. In that episode, I talked to clinical psychologist Cath Adams about how you as the carer can navigate relationships with family and friends.

Cath: You’re having to retell the story again and again and again, and even though we know that that’s what’s happening, it still breaks our heart to have to keep talking about it. And so that emotional strain is really difficult. The thing that then comes back at us as well is everyone wants to put in their opinion.

Julie: You can find that episode “Managing Relationships as the Carer” on our website at cancercouncil.com.au/podcasts, just click through to The Thing About Advanced Cancer.

[Music]

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**