Episode 12 - Dr Daniel Nuzum: What Matters to you - Pastoral Care in Palliative Care

Hello, my name is Yvonne Mccahl and you're welcome back to our podcast series for Palliative Care Week. In today's episode, we are talking about pastoral care and I am delighted to be joined by Dr. Daniel Newsom, who is a member of the pastoral care team at Marymount University Hospital and Hospice in Cork. You're very welcome, Daniel.

Thank you.

I'd love to know a little bit, I think, first about how you came to work in pastoral care.

Thank you, Yvonne, for the invitation to be with you today for the podcast. I have always had a love of people and that I think has really shaped my interest in pastoral care. My first career was as a nurse and following my nursing career, a short career, I then entered into ordained life following some time in our Church of Ireland Theological College, and I worked in parish ministry for ten years. And then I moved into healthcare chaplaincy into pastoral care, particularly in a healthcare context, and that was almost 14 years ago. And during that time I started with a particular interest in palliative care in the area of perinatal bereavement. And then shortly after that, that expanded into the adult specialist palliative care sector. And that's where I am speaking to you from today at Marymount University Hospital and Hospice here in Cork.

Thanks, Daniel. It's a really interesting background. As you say, you had that need to help and then to bring your theology training as well there, all the way from Wicklow to Cork, and now you're there in Marymount, Daniel, and pastoral care comes into play, I suppose, for people from early diagnosis, is that correct?

Yes, ideally. So we see pastoral care, spiritual care, as being the very essence of life. It's how we make sense of who we are, how we make sense of life. And maybe one way to describe it is to link in with the journey that the patient and their loved ones go through from that moment when they hear the news that their future has changed, that they have a life limiting diagnosis. And from that moment on, suddenly everything is different. It's almost like you enter a new world and everything about the future can feel so very different, everything about the present can feel so very different. And so, ideally, we would like to think that spiritual care, that our spirituality is recognized from that moment, if not even before, obviously, but from that moment where we start to try to make sense of what has happened, we try to understand what's happening to us. I remember one lady, I'll call her Fiona, she said, in that moment everything changed. My present, my future changed in an instant. And people can often remember in forensic detail for others. Then there is that moment when life changing news is given and received, but it's also textured with a tremendous sense of hope and expectation that things are going to get better. And so we would often meet people who were in that space as well and who will go through very robust and challenging and sometimes very difficult treatments on the understanding that they're going to get better, they're going to be able to live longer. Then there are others where there is this slower but strengthening awareness that things aren't going to work out like I had hoped. So all of these contexts can raise questions for us. And we know that they can raise questions about the very meaning of life. Who am I? Why me? Why our family? Why now? And they cause us to reflect very deeply and in many ways to prioritize or reprioritize what's important. And it's also true, and I hope this is the experience that people would have from us all in palliative care. The world may talk about illnesses or may talk about conditions but it is absolutely true that each one is unique to each person and to each family. And I hope that it is the experience that each person and everybody who's important to them would always experience from us a sense of an honoring or making a priority of who they are. What do they need from us just now to help them navigate what is unfamiliar territory? And so that has always left me, I suppose in some ways my friends might say I'm maybe a nosy person. I'd like to say I'm a curious person but it gives what I call when I'm teaching in spiritual care that sort of loving curiosity. What is it that will help you to look at this and explore this and maybe to ask some difficult questions?

And I was really interested, Daniel. Just what I need is different to what you might need. And I think it's important to say it might not be about faith but it might be a kind of a spiritual need that a person has. Would you say that's true?

Absolutely. And it's absolutely the case. And this is borne out by our experience in pastoral care. People are as unique as they are in themselves and that the impact of illness impacts us in so many different ways. And when we think about spirituality I have noticed a tremendous broadening of how that's understood and how that's experienced and how it's expressed. So when we're thinking of spirituality we certainly here see this in the broadest possible sense. For some people it's expressed in religious ways and in faith ways and in ways that might be considered. Some people might use the word traditional and for others there's some of that. But maybe their life has brought them in a different direction and for others it's not like that at all. They find they have other ways to express and other ways to experience their sense of spirituality, what gives them meaning. So we're dealing with belief systems and non organized belief systems, philosophies approaches to life. And it's really central to who we are in pastoral care that we are able to accompany somebody in what's important to them and that they feel and experience from us that sense of loving support to help them to navigate this unfamiliar space. And some people can be numbed and feel nothing and can feel things that used to work, it's just not working now. And that's across the board. Maybe you may have been a very religious person and now it doesn't seem to be working or you may have had a very broad spirituality and now that's not working and it's a lovely gift. I'd like to think in pastoral care that we're able to be there for somebody even in that space when it feels a sense of nothingness, that we're okay to meet you there, we'll stay with you, who will accompany you, but you're always in the driving seat, so to speak.

It's something that, as you said, Daniel, is very challenging for people, I suppose, begin to have those conversations with family and friends that they wanted to have, that they haven't had an opportunity for. Is that something that you would support the family or those relationships in your role as well?

Absolutely. If there's one thing that's core to palliative care it is that we are caring for the patient and whoever is important to them. So if somebody, whoever is important to a patient, they are important to us as well. And every patient always wants the best for their loved ones and every family, in that broadest sense of family, whoever is important, they always want the best for their loved one who is being cared for. So along with other disciplines such as social work and our nurses and medical colleagues, et cetera as well, we all take an interest and a care in the family. And sometimes that means being able to hold open a space where conversations happen but maybe a family doesn't maybe mightn't be accustomed to having these sorts of conversations and yet always being respectful that however each family deals with things in life, that's how they deal with things and that's okay. So sometimes we would work separately with the patient or separately with the family to try and get a sense of what would work for this family, what might help the family, and to be able to open up some conversations from a spiritual care perspective. From a pastoral care perspective, those conversations would tend to be around facilitating conversations between patients and family members. Often being able to put words on what we're feeling, putting words on because many of our patients they've never had to think before. How do I say goodbye to my loved one because I'm sad that I'm going to die or I'm sad that they might die or I'm sad that all our plans have changed. I think in particular of somebody I cared for and they were teaching for many years and had managed to work in such a way that they were able to retire at 60 and had all sorts of plans and within a year everything had changed and within two years they were going to die. They never contemplated having a conversation about having to say goodbye, but having to say to his two daughters, I'm not going to see your other grandchildren, you may have your other children. This grandchild will probably never remember me. So they never had to even think of that. So sometimes it's about giving confidence about how to have some of these conversations. And when I say this as a dad myself, I think one of the things that this has taught me is what values do I want to leave for my children? And I often find myself having those conversations with patients. How do I want to be remembered? What values would I like them to live by after I have died? And we don't have those conversations generally in life. And I think one of the great things about this podcast and about Palliative Care Week is actually being able to have these conversations that we should be having them anyway, but we don't. So this is what we're doing today, I hope will help in that way.

One of those things that's important to people too is leaving people behind, maybe with some strength, having had some conversations that they might want to have had and that they feel they're enough alone. And I know that pastoral care does continue to support people after with their love.

Absolutely. And as we're thinking about legacy time and time again, one of the concerns that a patient would express is I'm worried about my partner, my children, my sister, and being able to say to them, we're going to take really good care of your loved one after you have died. We don't shy away from saying that after you have died, we will take good care of them. And so we do provide support. The whole team provides bereavement support, listening ear, and that's also done with other members of the healthcare team as well. And I have on many, many occasions had the experience where a mom or a dad has simply burst into tears when they've heard that, just that sense of relief that my loved ones are going to be taken care of and that somebody is going to reach out to them. And I sometimes hear this from patients who maybe they're worried about their partner. Often it's a female partner worried about their male partner. He's not a talker or he's not going to ring up or he won't come to you. A bit like getting men to go to the doctor, but to know that, well, we will give him a call or we will give, we will reach out. And I think that's a really valuable service to be able to offer to people.

And I think it's the, as you said, the loss of the life ahead that people might think they had. But that's also true of maybe a spouse or a partner or child left behind, not just the loss of the person, but what they expected the future to look like. Yes, and they're dealing with that as well. So that, I suppose after Bereavement support is so important as well.

One other thing, if I may say around that, that we do as well, is helping families to prepare to anticipate the future that they're not going to be physically here for. So I'm thinking of parents who have we have worked with them to prepare 18th birthday cards, 21st birthday cards all written and ready for their child to open when they get to that stage and to do that work in advance and with our social work team as well. And all of that is helping to come to terms with love and to leave a legacy. It leaves a lovely gift and we hope then that in itself is a gift and a spiritual support for families afterwards.

What are those things, I suppose, that you find people come back to, I suppose, when they are kind of in this position of reflection. Daniel, are there kind of common things that people want to talk about?

There are. I'd like to preface it by saying that whilst I'm going to mention some common things, they are of course individual to each person and they'll be slightly textured differently for each person. But for me, the big one that comes up is relationships. So who is important to me? And it's really about prioritizing the people who are important to me and making time for them and then connected with relationships. There is that sense of are there things that I want to do or need to do maybe or want to say to somebody? Are there things that we haven't had the opportunity to do? And we want to do this because time is shorter, so it can be a little bit of what we call bucket list stuff. We always wanted to do this, so we're going to try and do it. And I think also just one thing I'd like to just mention as an aside, that there's sometimes a pressure that everything has to happen in a certain way or we have to have certain conversations. And generally speaking, it's important that people feel that they're supported to live in the way that works best for them in their family. So if this family is a family where I can reasonably think of a couple, they didn't really speak a lot to one another because they never did that, but they intuited so much about one another. So it's important that partnership, that those two partners realize that we acknowledge that and we support and honor and affirm that so people don't have to have this verbal conversation that they might never have had. I say that because sometimes there's this maybe implied pressure that everything has to happen in a particular way. What I like to think is that we want you to have it in the way that is the best way.

For you, that is comfortable.

Yeah. And it's comfortable to you.

There are many forms of communication. Absolutely. Doesn't have to be verbal, as you say.

Yeah. There's a lovely expression that people die as they live. If that's how this couple lived their life, that's how they are, not who they are. We'd want to honor that as well. I think the other big thing that comes up, then, is around a sense of meaning. What has been the value of my life? So in very ordinary language, what has it been all about? And underneath that, I think there's often a sense of did I make a difference? Will I be missed? What was my value in life? It's not often expressed in big existential terms, but it's in ordinary ways, what have I done with my life? What contribution have I made to my family, to my community, et cetera? So people often reflect, and it can be very reflective and sometimes in the reflecting, it brings up lots of really beautiful and lovely senses of pride and achievement. Sometimes it brings up regrets as well. And it's important to be able to hear that and to honor that. Regrets that maybe I missed opportunities or there are things I wished I hadn't done or said. And sometimes it brings up disappointments. I feel hard done by or I feel cheated by life. And so it's about being able to be open and honest about that as well. And they're all part of being human. And one of the lovely gifts we have in pastoral care, in palliative care, is time. We have time to listen, we have time to say nothing, time to sit and be with you. We're so fortunate here in Marymount. We have just a gorgeous campus. It's just a beautiful campus. And I think in the summer months, just being able to take somebody out for a walk and do a walk and talk, we're just talking about their life and they're talking about what's happening, what's going on. Lovely.

Such a lovely way too, to just have a conversation, Daniel, that isn't at a table in a room, face to face, that you're kind of looking at things around a more relaxed way. I think of talking.

I think so. I've never had a patient say to me, oh, thank goodness you're here. I'm having an existential crisis. But I have had patients who said to me, I can't make sense of this at all. I just don't know what to say. People can feel. I just thought about it, what's the point? Or they can feel, I don't know how to describe what I'm feeling. And so I often find with some patients, they speak more heart to heart with us, and others tend to speak more shoulder to shoulder. It's like sometimes the conversations you have with your teenage child when you're driving in the car, there can be deeper conversations because there's a focus slightly out there, and yet being comfortable with not filling it with words. I'm comfortable to sit with you, to be with you. You don't have to talk. And that's a lovely gift. And that there's a comfort in that.

Absolutely. As for spending that time yeah, because sometimes that's a great need as well for people. If you were saying a couple of things, Daniel, that you'd like to maybe finish up on, I would want to.

Say that our spiritual lives, and therefore our spiritual care, isn't a separate, disconnected part of who we are, that it's integral to who we are. So our psychological needs, our spiritual needs, our physical needs, they all come together. And that's the beauty about palliative care. And I think my take home one of the take home messages I'd like to leave about pastoral care and palliative care is that it's truly centered on what's important to you and that sense of accompaniment, that sense of reflection, that sense of dignity and respect as you seek to navigate a new space in your life. And above all, that you know that you're cared for and loved and in a very professional way and in a way that is integrated with everybody else who's caring for you and also is integrated into the fullness of who you are. And there are days when, even in the midst of great sadness, that there are moments of joy and moments of profound tenderness and moments of laughter. And also the other take home message that's important to leave is that our spiritual lives, our sense of who we are, doesn't just kick in at the end of life. It's actually what we'd like to do is to be able to tap into that resource and source that's unique for each person as early as possible, and in doing so, to be able to live the best possible life for whatever length of time that is. Because sometimes patients would say to us, as they say indeed, about palliative care, why didn't we hear about this a little earlier? And I think that's a challenge to us.

That's a really good message, Daniel, to finish up on today because of the theme for Palate of Care Week, which is living as well as possible. And there were so many lovely messages and such good information from you today. And thanks so much again for joining us.

My great pleasure, Yvonne. And it was it was lovely to be able to speak about what I love to do. Thank you.

Thank you.