End of life care and coronavirus
What end of life support is available in a global pandemic. Hello i'm a and welcome to matt. Mullins corona virus series of talking cancer. You might have already listened to previous episodes in the series in which case while combat. And if it's your first time joining us. This is a podcast from mellon and boots. Well i talked to experts to get answers to the questions. Million is hearing the most today for our final episode in the series. I'm talking cancer with adrian. Betty who is the strategic advisor for end of life care at macmillan if somebody is pushing into the life they are entitled to benefits this the fifteen hundred which is a banish it for people who have got candidates. We're going to talk about coming to the end of your life. And what support is out there now. Corona virus is in the picture. And i do just want to let you know that. This episode contains content which might be upsetting for some business for anyone in need of support. Please do contact the macmillan support line. it's open seven days a week. Atm till eight pm and you can reach them on. Oh eight eight. Eight double zero double zero. We'll also hear some words of advice from the lovely dany bell. You might recognize her. From previous episodes in the series she's mcmillan strategic advisor for treatment and medicines and she's going to be offering some practical suggestions for those coming to the developed during the pandemic. if you have already started conversations with your family or people that are really important to you about what your wishes are out really encourage you to do that. women melon. I'm talking cancer Lovely to have you with us. Thanks so much for joining us. On the podcast. Great to have you with us today as we've done throughout the series. I'm gonna time stamp. This how you feel but i to me. The information guidance seems to be changing daily. We're recording this room on the twentieth of november twenty twenty and everything we discuss is correct at the time of recording. Now we're discussing a really difficult topic today and of life and i got no doubt that the pandemic has massively debated thoughts around this and i. It's a really emotional time for people at the best of times so adrienne telus wars. The pandemic meant for those who are coming to the end of their lives are still able to visit them at home. Can they get the hospice care. Support for example so many questions. Where do we salt. Okay so i guess amer. It's really worth acknowledging that irrespective of a pandemic so difficult for somebody that is approaching end up ended alive and for their families. The loved ones around them. So that's being made a million times worse for people. Obviously because of all the as he said the government guidelines changes in them. It really difficult to understand what you can and can't access from a support perspective and that's been really hard people another thing i i just wanted to talk a little bit better as well as what we mean by end of life care because i think sometimes people think he's just those last days minutes of life but actually you know when when health professionals talk about end of life care and particularly somebody with cancer is more about somebody who's got for instance an incurable cancer. But they may well have quite a long period of time to live and it may be year months weeks days hours of life. It can be any of those things where it's important that people do get. The supporters areas is possible to then have that continuity to develop relationships with the professionals. So what's what. Impact has the pandemic count. It's obviously made it more difficult. For people. I think particularly the owning the pandemic. It was really hard because people couldn't go to hospital thought they couldn't access services. Were really frightened. Which didn't take you help. People in accessing the support the need but i do want to racial people. They can get that support they can have. District is coming into their homes. You can still go to a hospice. You mentioned hospice daycare. So the helping some services that had to have to be adapted for instance oh some hospices have had to use that daycare and adopted and change into impatient provision in particular when there were more beds needed to clear early on in the pandemic But some of the services is still being delivered in moore's and outpatient and i guess the other thing is to acknowledge that actually health care professionals. Visiting people hiding particularly they really are trying to reduce contact so they don't want to spread the virus the being really cautious so the maybe situations where people are still accessing the services but it may be in a virtual way it may be by telephone it may be a video call and they have less face to face contact which is obviously hard for people. Because they won't see you know a real person in the flesh so to speak But they are still able to access all of those services. There's just expanding a little bit on the palliative care that people can expect at home and yeah that's been a particular concern that we've been hearing mcmillan. Can you just maybe dig a little deeper into what people can expect. And who they might talk to those pathways of communication in order to get the best out of that. Politics can expect at the moment so particular home. The are very different aspects appellative. Kelly can access to palliative care that they can get through the gp through that district nurses community. This is coming to their homes. Could be physio could be occupational therapist and it could be for instance mcmillan special peleliu team which may be especially pud canada's when things are more complex and i guess if people already struggling there are lots of other means of support as well so through local hospices in some areas not areas. There is a million support line which is available seven days a week eight. Am to eight pm. That can offer guidance and support. We got amazing web site. You know you can get all sorts of information on that and also boots pharmacies which rebelled sport people with a urgent supply and delivery of medication which is absolutely vital for people. Because obviously you know the moyal condition deteriorates more likely. You're going to need more complex. Medication can also get virtual -pointment with boots mcmillan information pharmacists. Who can give you and your loved ones and carries information about medication and any potential side effects as well as guiding people most fascist information support. So you can. Book of virtual appointment with boots boots dot com slash. One of the things that's creating the most things -iety amongst people patients relatives harrah's is consistency. A dream would it be fair enough to say. I think with the changing landscape as frequently as is On various areas of the country dealing with this pandemic in their own way to a degree area to area. The is still really important to check with your healthcare professionals. Because what might be a okay. One place isn't the oak is an okay in in another for example. Yeah absolutely fat to say and so there is different provisions across the uk. Know even the fact that we've got four nations who have different guidance so it's really important even within your own country within your own local area if you're being provided support by a healthcare provider for instance they may have different rules and regulations so each hospital will have their own policies about visiting things like that. The community teams will work slightly differently again to fit in with the local needs in the local services. So you absolutely do need to check in with whoever. Your point of contact is whether it's a specialist punter cavernous whether it's your melon nurse that the hospital and whichever the provider is it might be. An acute oncology nurse for instance but but do speak to them about what you can access. We're in the middle of a pandemic. And i guess one of the biggest worries seem so obvious really Is that what happens if somebody is coming to the end of their life and they catch corona virus. What what happens. Then i mean. That's it's hard to believe that. But i'm of course it is in a might happen. What should they do if they're getting symptoms. Yeah so obviously somebody who potentially might be having still palliative chemotherapy approaching their ended. The lives in his going to be for instance. You're more susceptible but that would be the case. If we went in mitzvah pandemic can they could be more settled. Things like a chest infection. So don't feel too alarmed. You know lots of people managed to cope with coronavirus have not. Don't have extreme symptoms. Sometimes people just have lots of taste with might have you know a persistent cough or whatever but it's really really important that you notify your health provider and try and get tested as quickly as possible and follow all the government guidelines as you would in any situation too so it's about reducing any contact about tran stain isolation but i want to reassure people that can still get the support that they need even if they were to get grown virus and they were tim. Instance I don't think it's a news tool that. Of course the pressures on the chest and the pressures on healthcare services are immense during this time and how everybody is dealing with. This is definitely affecting people's care for all sorts of different conditions war if people are being discharged to go home but feel that they haven't been sent home with the right support the right care package. What happens if you are a relative or a career and your concern that people have been sent. I really confident that everything is being done. That could be yeah. I'm not. I can sometimes happen. Even monotony pandemic. so it's really important to get in touch with your local. Gp surgery who can put you in touch with the community nursing team so you can expect to be able to have a visit from a community staff nurse or district s who come out and do listrik assessment. That look all of your needs in your home. they'll think about. Do you need a bed. Downstairs for instance you know how you got access to a toilet or the really practical things as well as you need tools to think about new all you getting the right benefits because that's really important particularly in the current climate when you know people really struggling financially And if somebody is pushing into the lives they are entitled to benefits. So there's the fifteen hundred which is a benefit for people who have got punditry candidates and that can be fast tracked if you are approaching into your life and your gp can sort that out all your melon s But again if you're not sure then please do get in touch with on sport line and they can point in the right direction and sticky on the support line around the finances and we do have benefits gieco which is fantastic. You can do an online check if you getting your benefits or if your loved ones getting the right benefits so i would really urge people to to make sure they do get the right support but it is out that and they can get it. So what are the effects of the pandemic as you. You know clearly explained is that they you know there was pressure on resources and contact is reduce which means that sometimes there may be family relative friends who find themselves in the carrying role That would normally begin by end of life care to buy healthcare professional. She's quite. it's quite scary overwhelming experience for a lot of people. How can they best support their loved ones the end of their lives. And what does the guidance so faw allow for so again. Even when we're not in a pandemic often people do get involved in the care and support of delon's at home because the there isn't usually the twenty four seven support the e would hope to be able to get when when if you are looking after somebody you may get involved in doing some of their personal care things like that. You may be involved in supporting giving the medication for instance but they can still access the support from the community teams. You can talk through all of this whether it's virtual whether it's you know kamala show them how to do things said the won't be alone on a really. Want to reassure people than not to learn and also we need to make sure the carries themselves supported so they're entitled to a carries assessment. The may be other sorts of support that they can get and again they may be entitled to to benefit from sowell's so again it's really worth phoning pau madman support line to see what and talking to and what they can get on like practical basic question so for example if if relative needs to move in with Somebody that they they are then going to look often. He's the i mean. Is that allowed at the moment. So people are still allowed to provide that care for somebody at the end of life and they do have to follow the guidance but the best thing they can do particularly to ask the healthcare provider so speak to their specialist. Patrick kane is for instance millionnaires millionnaire speak to their gpo district. S and just ask what what is feasible. But nobody would stop somebody being with their loved one at home if they were caring for him and obviously people are using their own sensible pragmatic judgment about supporting loved one. Because it's so important to be with somebody isn't it is absolutely crucial. So just just to be clear at and if you are finding yourself in the carrying Role at the moment during the pandemic not expected to take on that role as the healthcare professional. All you oh absolutely not so you may end up doing some practical things supporting your loved one. I home but that wouldn't mean you do bidding really complex things like you know administering high doses of medication or dating with really complex kassar. Anything like that. That would be delivered by a healthcare. Professional will still be delivered by a healthcare professional just briefly as well you mentioned. Obviously we need to make sure that all carriers are looked after In terms of Support out there for carriers you know this is someone only ended the line if this is all too much on occasion and you need you need to offload and and really on some support that way. Yeah unusually The community teams who are providing that support are also there for the karen not just the individual themselves but there are lots of the sources of support so again almonds port line. Is that a people. Please do phone up. Get that support their other sources of support. So there's booklets around carrying for somebody at the end of life is a guide about that is also abbots mcmillan information pharmacists. Who mentioned earlier. It can also support carrozza loved ones so do make him an appointment. Virtual was beaten in store and there was some fantastic organizations as well like an uk who will offer support and advice address. Please go anywhere. Stay with meat. We'll talk more in just a minute questions about cancer. The it's a mcmillan. Your side from the moment to diagnosed through your treatment and beyond our beads mcmillan intimation pharmacists on hand when specialists support from helping you make sense of your diagnosis to advice about living with cancer you can find them. In your likud's fomc online via video appointment visit dot com forward slash mcmillan for more information subject to pharmacist availability at gm. We've been talking a lot about what might mellon. Support line is hearing from Colas walking people do to feel more in control at a time when everything fails uncertain. Even when we're not in a pandemic there is so much uncertainty about and life care and autumn living with 'em constitute treatable but not curable they are living with uncertainty and trying to maintain hope one thing that people find really beneficial is having a really good conversation with your health care professional and it's really important to have open discussions that the professional will tell you around. You know about your prognosis about what you can expect. What treatments choices. There are one of the best ways to do. This is to have what we call in advance care planning conversation. is wilson. Scotland anticipate very care planning. And that's where eighty about nurse or dot talking to you and saying what matters to you what's important to you then being able to write down your preferences and wishes and think about things like if you lose capacity he would you want to make decisions on your behalf And actually naming that person things like would you want to refuse specific treatments at the end of life and when people have those conversations of really really hard conversations to have but actually people feel quite empowered and it does almost instill a sense of hope because people feel is sensitive. Okay after not of soltau fares and will dry would have also written by will talk about my funeral. All of those things then enables them to think about the here and now on the quality of life and trying to get the most out of life so that is a really empowering thing to do and i really would employ people to have those really good conversations and taught elephants about what matters to them as well. I mean it seems like that would be one of the most difficult things in the world to do. But i instinctively understand the kind of Space to breathe that it gives you once. That's once that's done have to say with my mom. She went when she was dying. She had suffered. You'll cancer and she went upstairs with him nurse and had a private conversation. I felt a bit left out to the time but we talked about it afterwards and when she came downstairs she said oh adriana she said i feel so relieved. I didn't realize i could die at home. I plant which batum going to die. Don't want to be in the same bed as you dad. I know what support can get such a sense of relief to have out in the open to talk about it into know what to expect. And that's hugely powerful people. I guess as well. I imagine never forgetting Family members There's always somebody on the end of the nine am a. We know that million. If you're struggling absolutely and i would urge people to do that and particularly for those who are bereaved well so bereavement support is variable across the country. Sometimes how people have to wait to access it. But the and support line is a really great sense for peop- great source to people to actually phone up and just have a listening ear at the other end because sometimes that's all people need just some digital to how they're failing because particularly for grief and loss it's a normal part of of living and dying isn't it you know we we will experience it. Of course of course of course an amazing to talk to you especially with such a sensitive and difficult topics such a bizarre time that we're having at the moment. Thanks so much you take thank you now took to dany. Who is back to give us some practical advice for people coming to the end of their life in a pandemic. I everyone on dany. Might recognize me from previous podcasts. On mr tj adviser and i work commitment said just a few For people around and of life care my first hip. And i'm probably the most important is if you haven't already to compensations with your family or people that are really important to you about what your wishes all round where you want to be careful as you want to do. Except that i would really encourage you to do that. And we have some really good tolls. That can help you do that molin. We have an advanced care plan planning booklets on it. Gives you general information on how to talk about your preferences and your wishes with your family any legal issues so if you need to give power of attorney to anyone against the second tip would be that it would be really nice view to involve people that you care about in the practicalities so that you do things alone. If you haven't got will it's really nice to involve you'll family in that. Say that they know and also kind of think about the support services that you want to draw ronal would help your family and i guess finances is often the thing that people worry about and we do have a guide for end of life care but again has sections in around Getting financial help and also some information in that for you relatives on a guest. Lastly is really important to maintain contact with people on maintaining activity on. It's hard. it's hard at the moment with with restrictions but they're all ways to do things safely to still enjoy that human contact and get fresh air and undertake other activity. So was it's a really difficult time. Probably for you and your family. You know i would. I would absolutely stresses kind of those sorts of things are really important. Thank you so much for that day. Nisam really useful advice. That for more information about the topics adrian and i have talked about in this episode head to our website. Mcmillan dot org dot. uk forward slash talking cancer. There are lots of really helpful resources on there as well as details about where you can reach advice and support. Please use them. It's also where you can find out more about donating to macmillan now that takes us to the end of this series and the last six episodes of gone so quickly it's been so fantastic talking to so many different experts at mcmillan and boots to answer your questions. Remember you can still reach mcmillan on my support. Line seven days a week eight. Am to eight pm on oto eight. Eight hundred eight double zero double zero all reach out to a boots mcmillan information pharmacist. And you could do store online. If you've enjoyed the series. Please give us a rating overview and helps others defined. The full costs more easily. Thanks so much for listening. I'm a talking cancer is a macmillan. Cancer support cost.