Anshu Bahanda: This is Anshu Bahanda on Wellness Curated. Thanks for joining me on this podcast. My mission is to empower you with health and wellness, so that you can then go and empower others. Today we’re discussing how to prepare for death and dying. But I’d like to start with a quote from Steve Jobs, co-founder of Apple, who totally transformed communication technology, an entrepreneur and innovator who passed away in 2011, he said, “death is the destination we all share, no one has ever escaped it. It is life’s change agent. It clears out the old to make way for the new.” In our last episode, we discussed death’s spiritual aspect with Sadhvi Bhagawati Saraswati, and we’re continuing to explore the theme with Dr Sarah Holmes, a consultant in palliative medicine and medical director of Marie Curie Hospice, Bradford, UK. She’s worked extensively in end of life care and is here to share her insights and knowledge with us. So you’ve had decades of experience in palliative care. What is the most important way in which people can prepare for the end of life of their loved ones and of themselves?
Dr Sarah Holmes: The most important thing is to think about it and talk about it. I think sometimes we find thinking about it or speaking about it difficult because I suspect people think that sometimes that might hasten your own death, but actually preparing for it, talking about it, doesn’t make it happen any sooner, but it does make sure that it’s as good as it possibly can be. At Marie Curie, we’ve had the campaign to talk about life’s questions, so that we make sure that we know what matters to people and that people are talking about these things with their friends and family.
AB: That’s amazing that you have this campaign at Marie Curie, because that’s the precise reason we’re doing these two podcasts on death and dying, because people don’t want to talk about it. But we all have to face it for ourselves, for our loved ones. It’s one of the definites–death and change- isn’t it?
Dr SH: Absolutely. I think what I see from the other side sometimes is those situations where people haven’t talked about it and then the impact on families that are left behind when they don’t know what their loved one would have wanted, trying to do the things are important to them at a funeral, for example, and not knowing what the person who died would have wanted. But equally for ourselves if somebody dies and we then live on and have regret about opportunities missed or things left unsaid, that can have a huge impact on us for the rest of our lives, whereas if we did and said what we wanted to do, it can make a huge difference.
AB: I wanted to ask you, so with your experience, of course, you probably see people leaving the planet every day in terms of making the life of those left behind easier, do you have a list of things that you gently try and advise people to cover?
Dr SH: Not a list so much, although I do have things that I carry in my head that, from experience, I know people might find difficult afterwards. So I think there are some really practical things. I think the key thing here is what matters most to you as a person and what matters most to those people you’re connected with. Are there particular things that you want to happen to you when you die? Do you want a particular sort of funeral, or do you not mind? Is there music that you want played? Do you have particular views about where it is, whether you’re buried or cremated? Really simple, practical things for after you’ve gone. I think the other thing that I see and hear about being difficult is sort of life’s practicalities. We’re talking to each other over the Internet, and I have so many different things that I have different passwords, so making sure that family or loved ones know what your passwords are or where your accounts are so that practical things like that are easier to sort out afterwards. There’s also just the practicality of your own care, like are there things that matter to you or things that you wouldn’t want to happen for you as you’re dying, as you’re approaching the end of your life? I joke to the nurses on the ward here, I’m a terrible chocoholic and I can smell chocolate at 50 paces. And I say to them, “When I get to the end of my life, will you make sure that I can have a little cube of chocolate? Don’t be bringing me big meals. I just want a cube of chocolate.” Little things like that are there things that matter to you or bigger things are the people that you want to have around you, or a particular place you want to be. Then I think the other thing, apart from practical stuff, is emotionally planning. Whenever we die, we leave people behind. And are there particular plans or things that you want to say to those people before you die? What I see people doing quite a lot is making memory boxes or if you have children, it feels really sad to talk about. But if you have children and you’re not going to see certain life events, do you want to write a card in advance or a present or something in advance for when they get to their wedding so that you are still there as part of that wedding even though you’ve died?
AB: What about something like wills?
Dr SH: Absolutely. Planning for that, things you want to give away. The other thing is making sure that people know your wishes. So if you get to a point where you’re not able to communicate your wishes, have you got those written down in a legal form? In the UK, we have something called lasting power of Attorney, but I’m sure it’s different all around the world so that somebody who knows you well and who knows what you want can talk for you and say, “Yes, although, Anshu isn’t able to tell us what she wants, this is the care that she would have wanted, or she wouldn’t want this to happen to her.”
AB: It’s interesting, actually, you’re talking about food. My kids think I’m crazy because I keep telling them that the last meal I want is tiramisu, the last thing I want to be fed. And they’re always laughing and saying, “Mom, you’re crazy.” But I just want to make sure everyone knows that I want tiramisu as my last thing when I’m leaving the planet.
Dr SH: I’ve talked to my children as well and actually those conversations are lovely.
AB: In terms of quality of life, how can we ensure that people have a good end of life? I think, is what also makes people so fearful about talking about life and leaving this planet and dying, is because there are all these stories about a really sad end of life where someone is not being able to do anything for themselves. They’ve been bedridden. Some people are in coma for ages. So can you give us some suggestions on that?
Dr SH: It comes back to talking about things and issues, knowing in advance and talking to the health professionals or the professionals that are looking after you about what matters most to you and what’s most important to you. The other thing is reaching out for help. Certainly in the UK, in Marie Curie, we’re here to try and support as many people as possible, have as good an end of life experience as possible. We don’t see death as much as we used to. It’s often tucked away in hospitals, so people aren’t used to what is normal and what happens as part of normal death. And I think asking those questions, not being afraid to ask, asking for help, there is somebody there that can help you and health professionals looking after you can help, plan to make sure that symptoms such as pain or sickness or whatever particular thing might be troubling you, can be controlled. So I don’t think people should expect that death should be a difficult or painful experience. My job and the job of palliative care professionals around the world is to make sure that people are comfortable and pain free and that actually people spend their time living a good life right up until that very short point that they die at the end.
AB: I heard this story the other day, it was not a story, it’s a true story. But a friend of mine told me about one of his friends who was terminally ill and he didn’t want to go through the pain, so he chose to fly to Switzerland, I think, to end his life through euthanasia. And I think he was having a celebration where all his friends came to say goodbye to him. Do you hear about something like that often?
Dr SH: One of the challenges is that people are afraid of the unknown. So we only die once, don’t we? We hear those stories about difficult death. In my experience, seeing death day in, day out death is not a difficult, painful, unpleasant experience. That’s why I’m in the job, to make it comfortable and easy. I think when people access the palliative care and support that they need, death isn’t something to be afraid of.
AB: And in terms of a celebration, do you think that’s a good thing, to get everyone under one roof?
Dr SH: I think that’s brilliant. I think sometimes weddings are the time when you have all those people around you that you love and are important to you and then the next time that that happens sometimes is at your funeral when you’re not there. I have a number of people that I’ve looked after that have said “actually, I don’t want to wait until my wake for all these people to be together. I’d like to be at my own wake.” So they’ve had a celebration before they’ve died so that they can say the things they want to say. It’s been a really positive experience.
AB: That’s lovely, actually. That’s something I will remember for sure.
So I sort of live in the west. I live in London and I go back. I’m from India, I grew up in India, so I go back a lot to India. I find that the east and the west deal with death very differently. Tell me, do you think spirituality helps at a time like this?
Dr SH: Yes, absolutely. And I’d be really interested to hear about those differences, actually. Anshu. But I think spirituality is hugely important and I think sometimes people misinterpret spirituality as just religion, but spirituality is more than that. It may be religion, it may be faith for some people, but for others it isn’t a sort of defined religion. It’s more about beliefs and feelings and fears and hopes that are really important to that person. Everybody has a spirituality and I think that’s one of the beautiful things about when palliative care and end of life care goes really well, it looks at that whole person and the spiritual nature of that person, not just their physical being. What are those differences that you see between the east and the west?
AB: Maybe I’m saying east and west sort of more generically, but now with so much yoga being practised, I found a lot of people in the west also believe in karma, but we, in Hinduism, believe that the soul carries on, that the soul doesn’t die, it’s just the body that dies. When your consciousness leaves, or your soul leaves, and that carries on. So in a way, people don’t think it’s a final ending and there’s always that hope that there is more, and it’s just a small part of a much bigger journey. I’m finding that a lot more people in the west who are getting involved with things like yoga and meditation are thinking along those lines. I mean, a lot of people would have read this book by Brian Weiss called ‘Many Lives, Many Masters’. I remember reading it at 13 where he talks about after-death experiences from his clients and that kind of thing, where people have had a near-death experience and then come back, so they’ve been clinically declared dead and then they’re back. I don’t know if you’ve ever seen something like that, but their stories from different parts of the world, different settings, people who never met, seem to have matched. I don’t know if you’ve ever had an experience like that with one of your patients.
Dr SH: I’ve had a couple of patients who’ve talked to me who’ve been unwell for some time and might have been successfully resuscitated after a cardiac event. They’ve had differing experiences of that. But it’s really interesting hearing about that continuing sort of going on and how comforting that is, really, rather than the finality. I believe that the contribution that we make now in the present lives on once we’re gone and in that way, we continue to live on because of the impact that we’ve had on other people, that’s my spirituality.
AB: That’s lovely. That is incredible. I mean, that takes me into this whole concept and idea of karma where what you do shapes the future. So even you’re saying that’s what lives on, what you’ve done. But if I take it into the Hindu and the Buddhist philosophies, it’s what you do that shaped the future. The thing I wanted to ask you next was when someone knows that they’ve got, say, 2-3 weeks to live, what have you seen that matters the most to them?
Dr SH: What tends to matter most to people is being with the people that are important to them and looking after those people. Often those connections seem to be the thing that they hold on to but other people will have differences. We’ve talked about chocolate and food for you and I. Other people have other things, so for some people, it is the place where they are, that really matters. I’ve looked after some people that have spent a lifetime working outdoors, so dying in a room in a building doesn’t feel right for them. They want to see the sky and be outside, that’s been really important. So I think the key is finding out for that particular person what matters for them.
AB: I can hear that again and again you’ve said that have a conversation, find out, even if it’s someone else, whether it’s yourself and make sure you express what you’re feeling, what you want. So talk about it, deal with it.
Dr SH: As we said, it sometimes feels hard and painful to do. But as you’ve touched on, death is there for us all. We can’t escape that. It’s a sure thing. So to make sure that it’s as good as possible, not talking about it is just avoiding that. A very wise man once told me that death was a bit like the sun, that you know, it’s there and it’s there all the time, but you don’t have to sit and look at it all the time, but sometimes it is important to look at it and to see the beautiful sunset or to see the beautiful sunrise. So actually facing death and thinking about it and talking about it can be a really helpful, positive thing. And whilst it might bring up emotion at that moment, you can then move on and do the beautiful bit of living without having to think about death or the sun being there all the time.
AB: What you’re saying very nicely leads onto the circle of life. As Steve Jobs said “making way for the new”, for one generation to go means that there’s a place on the earth for the next generation to come.
Dr SH: Do you know, it’s uncanny how often I see that, how somebody might be waiting for the birth of a grandchild and as that grandchild is born, the person will then die? It’s strange how often that circle seems to connect.
AB: When we talk to people about death or even for ourselves, how can we make it more positive? Can you give us some tips or pointers? There’s huge amounts of grief that we have to deal with, and especially if you lose a loved one, but how can we make it more positive?
Dr SH: I know it sounds simple, but talking about it and bringing that up earlier can be more positive. It’s quite difficult to do when you’re facing death very immediately because there is all that pain of grief and loss. You and I have both talked about talking to our children. I’ve had conversations around the dinner table in quite a positive way about where I might want my ashes to be scattered when I’ve died and the children have talked about it. That’s been easier for us to do, I think, because we’re not facing death right in the here and now. I think the other thing is you don’t have to have the whole conversation all at once. You can have bite-sized conversations. You can evolve the information that you know and talk about it in small chunks and then if it’s too much or if you’ve talked enough, stop and move on and do something nice in between. Sometimes these bigger conversations when you’re trying to bring them up sort of with your own family members, not me as a professional doing them when you’re not face-to-face, side-by-side on a walk or side by side in a car journey, sometimes that feels less challenging than when you’re sort of face-to-face and to talk about the positive stuff, how you’re going to make the most of living like the important things that you really want to do in life so that when you do die, you’ve done everything and said everything that you wanted to.
AB: That is very good advice because if we talk about death and we’re aware that we’re all going to die, right? I mean, of course we’re all aware somewhere, but if we’re consciously aware, then you do make an effort to do certain things in your life.
Dr SH: Living in the moment.
AB: Living in the moment, exactly.
Dr SH: Making the most of every moment.
AB: That’s a huge lesson in spirituality, just learning to live in the moment. If we can live in the moment, you don’t need anything else. But the one thing I wanted to ask you for some advice on was untimely death. So sometimes someone, say a parent just loses a child and then there is an untimely way of going and that leaves everyone around totally devastated. So say a young teenager is gone.
Dr SH: The injustice of an untimely death just makes it so much more painful and difficult to bear. Sometimes those untimely deaths mean that we don’t have time to plan. But I think it’s coming back again to- if there is warning, even though the death may end up being untimely, somebody dying as a young adult, having those conversations and planning, so that when you look back, you can know that you did everything that you wanted to do, and you can know that the person had everything that they wanted. All their needs met. So that you can feel, despite the pain, you have positive things to look back on and you don’t have the regrets of if only and what if so that you can cope with that less painfully perhaps, because there isn’t an easy way to deal with untimely death. I think one of the things I see that people find difficult to deal with in bereavement and after death is when friends and family don’t speak that person’s name and don’t say anything, so continuing to have that person who’s died, they are always going to be a part of your life, even though they’ve gone and continuing to talk about them and acknowledge them.
AB: And also, I think, like you said, if we talk to people and get help on the guilt because we all feel, could we have done something differently, could we have done something more to prevent that? So that’s always when there’s an untimely death, there’s always this big looming cloud about that.
Dr SH: Guilt is an incredibly heavy weight to carry around with you. Speaking about things and as they’re happening whenever you can, everything is okay to talk about. In my experience, stuff is a lot easier to deal with when you’ve spoken about it and got it out into the open air. Weights are suddenly easier to carry when you’ve shared what you’re feeling with somebody else and they help you carry it. It’s when you’re trying to carry it alone without telling anybody that that’s when it feels really difficult.
AB: So I lost my father when I was 14, and it took me a long time to deal with the grief. A really long time. But today I can use his life as an inspiration. He was a hugely inspiring person. He was a pioneer of things and he was very creative. So I use his life today to inspire me. But it took a long time to get here.
Dr SH: Yes, and I’m sorry to hear that that happened to you. And I hope that people will be able to get the support that they need earlier. That’s certainly something that we at Marie Curie feel is very important, that people get the support leading up to their own death. But also then we’re here to support people after somebody has died in their bereavement as well, so that they can get on with living as well.
AB: Any last words of advice, Dr Sarah?
Dr SH: Make those connections and talk to people. Ask questions and let people know what matters most to you. Think about that for yourself, for the future and for your family. It’s not as bad as you expect, talking about it, that won’t make death happen. But what it will make sure that it happens is that when you do eventually die, your death will be a better one and a good one.
AB: Beautiful words of advice, Dr Sarah. Thank You. Thanks for joining us. Hope you enjoyed the Wellness Curated podcast. Please subscribe and tell your friends and family about it. And here’s to you, leading your best life.