In recognition of our Palliative Care Week, the acute palliative care team - consultant Sarah Cousins and clinical nurse specialists Donna Grier and Aine Feeney - discuss the difficult topic of what a good death looks like and the support they give to patients and families in hospital.
In recognition of our Palliative Care Week, the acute palliative care team - consultant Sarah Cousins and clinical nurse specialists Donna Grier and Aine Feeney - discuss the difficult topic of what a good death looks like and the support they give to patients and families in hospital.
My name is Sarah cousins, and I am one of the hospital palliative care consultants. We are here today with Donna Greer, clinical nurse, specialist, and Aine Feeney, clinical nurse specialist, really working in the hospital between Daisy Hill and between Craigavon.
Today we are discussing the topic of what is a good death. This is a really, really difficult topic. This is hard, emotionally. It's very challenging, very emotive, and while we want to discuss it as sensitively as possible, if this brings up feelings for any listeners or any strong emotions, and we would be very pleased to talk to people about this, and feel free to contact in.
So what is a good death, and specifically, I suppose, what it looks like in hospital, which is where we work.
Donna. I wonder if you can think about death and some of the deaths that you've seen in hospital, and the families that you're dealing with, What are the sort of themes that you would have identified in your work over how many years dare I ask?
donna.grier: Over ten years.
I still find it surprising to see so many patients and their families who present in the hospital who are still going through chemotherapy, who are still hoping they will recover. They are hoping that they will live longer, and I know death is expected,
donna.grier: in everyone but it still shocks me to um see so many patients and their families being very, very shocked by the thought of the palliative care nurse coming along to discuss symptom management at the end of life and they have been extremely traumatised and shocked by the introduction of what we are trying to achieve.
sarah.cousins: It's really hard isn't it to see us coming.
donna.grier: Palliative is an awful word and it’s a scary word. We’re going round the hospitals seeing patients and you often hear, ‘you don’t want to see the palliative care coming to you’. But once you’ve introduced yourself and explained who you are and what you are trying to do, generally with good communication with yourself and the family, the carers and the patient, generally you do develop a very good bond.
I always think, if you're honest and experienced in what you are doing, and you can speak on behalf of the patient, and be compassionate and carrying out their wishes you are doing a good job.
Sarah.cousins: We've tried different words. Haven't we've tried palliative, or sometimes people introduce themselves as the Macmillan nurse, what do you find works Aine? Do you have a magical phrase that calms people before they get to know us that calms people?
aine.feeney: Yes, I think that people do be very afraid of the word palliative care and I think it's a matter of us explaining to them what we do, and it's not always just about death and dying, but it's also about helping them to come to terms with how they are physically and emotionally. And so I think yes, people do be afraid of that term, and maybe it's something that needs work done within our communities that um that there's more information out there for people that it nearly become so that it will become more of a common term that could be used without fear.
sarah.cousins: I think people think that we're going to say something that's going to hurt them or their family members and it's never like that. You know we're always guided by what the patient and family want to talk about at the pace they want to talk about it. So if they want to talk about pain then that's what we're talking about. But if they want to talk about their dog, I think Aine you had someone recently just wanted to talk about. You know I can't remember the dog's name, but that's where we'll go. It's not dictated by us in any way.
aine.feeney: Exactly. It's very, very patient-led as if the patients don't want to talk about certain subjects, we’ll not push that. We're there to support them in whatever issues they have.
sarah.cousins: And I think I suppose, in a hospital it's particularly difficult.
I think, in hospital, you know it’s usually someone's come in through A and E. There's a problem, you know. There's a crisis, nobody's wanting to be in the emergency department and sometimes things change and things change quite quickly and you can have the best laid plans, but we know that things change quickly. I suppose, thinking it specifically about a good death, there was one definition I came across, and I have. I quite like so if I can just read it out. It describes a good death as the best death that can be achieved in the context of basically what's going on for the patient, the clinical diagnosis and the symptoms and who the patient is. So that would bring in more of the social, the cultural, the spiritual, the patient wishes. And it's really that it's There's not some idea of a perfect way that things can go whenever things are bad, but it's very freeing. It's trying to make things as good as possible.
Sometimes I think death can feel a bit like a failure, especially whenever it's in hospital. And maybe somebody wished that it was at home, or somebody wished something different. Sometimes the best that can be done is to stay in hospital and to receive care here. Would you agree, Donna?
donna.grier: You always ask patients and their families, where they would like to be in their last days or weeks of life. Generally, the majority of people would say, I would love to be in my own home.
But sometimes the condition deteriorates and maybe they need supplementary oxygen that they maybe couldn't receive at home due to circumstances out everybody's control. Sometimes people smoking or the high concentrations of it, and I would always say, the case of death and where you pass away in doesn’t always have to be home. Home is where your family are and your family around you. So we can accommodate it in a hospital, but sometimes it may not be where you want it to be. We are finding more and more patients are passing away within the hospital setting. Because we can’t get packages of care and increased equipment and houses that can’t accommodate a lot of the equipment that they need. So unfortunately it does happen, but we try our best to make it as comfortable, with as many family members around them, as we possibly can.
sarah.cousins: Yes, I think that's fair. There was a lady recently on one of the wards. She really wanted home, and she really did, and she was a lady who had been used to doing things for herself, getting having things her own way and it, and what she wanted was to be in her own home. But the situation didn't allow it, you know, and I think she and her family all realised that.
And so, you know, she was waiting for a hospice bed. That was her wish that was her second wish. But again, that didn't work out for reasons that are out of our control, because it's it can be hard, and there can be a very long waiting list for hospice beds. So this lady did change and became a lot sicker, and it was clear that she was moving into her last hours, days and her family were there and I have to say I just want to share about the scone and the cup of coffee that the award sister brought from the canteen. This scone and coffee, I don't know how much it costs, but it's gold to her in the family. So this this was more than just a scone and a cup of coffee. This was the care, this was the fact that the ward staff knew that lady so well after her two, three weeks in patients stay, and they felt that well, the sister felt we've just become part of the furniture and this kindness that it was represented in the scone and the cup of coffee. So, I think that while even the first choice or the second choice can be made actually, there can be a lot of compassion, kindness, dignity, in the acute setting in even a busy surgical ward as it was that people still take the time to make the family member feel cared for and this will be talked about. This will be talked about whenever that story of that person's death is shared for years to come and just what that means to that family can't be underestimated and I’m sure I’m sure you ladies have stories very similar to that as well.
aine.feeney: We had a lovely patient here who died recently in hospital. He was actually a member of staff. His care needs were just too great to be at home. His wife was so grateful for all of the care that he got, because people knew this gentleman and different members of staff from all different departments came to the ward to see him, and his wife was so overwhelmed that people knew that he was in hospital and was dying, and she just felt that he was dying in a place where he was in his own community, because he worked here and she was so relieved that everybody who knew this gentleman were coming to see him, and were looking out for her and his children and I think I remember I think she though it was a relief, because home was too hard for her and her family, and it was hard for her to admit that actually, because I think that felt like a failure for her in some way. But she just sobbed with the relief and there's just a great sense of community there that, it was here where he was so cherished in his last days.
sarah.cousins: It's hard whenever you know, maybe someone is known to the hospital and is someone who perhaps we've worked with before.
I suppose everyone thinks of a good death, and sometimes we think just about the control of symptoms. Oh, you know just no pain, or just less symptoms. No nausea or vomiting, or whatever it is; but it's so much more than that, to prepare to prepare yourself for your own moment but to prepare those around you. And but without good clear, gentle, compassionate communication. It's really hard to have that time to prepare, you know, without guiding somebody to understand and where they are, how can they have a chance to take the time to do the memory boxes, or speak to the solicitor about the will, or say those things which people want to say and people want to say very basic things, you know. I'm sorry. Forgive me. I forgive you. I love you. Goodbye. You know these very basic things that people need an opportunity to say.
I think another aspect of what is a good death is really that sense of closure or a life completed. That is something that we can help guide towards, but it's really not a nursing or a medical thing, you know. It's something deeper and it's possible something all of us would like to accomplish.
I knew a patient who was dying in hospital once, who told the team that she felt she hadn't lived the life she was meant to live and she had a real sense of loss and a real sense of being cheated out of life. And I suppose that for me that’s one of the big things about thinking about what is a good death? It leads you on to living a good life and it leads you on to living for the now and for the present.
donna.grier: I think as a team we all have seen a lot of our patients who are approaching end of life and maybe haven’t dealt with things in their own life, before they even got a cancer diagnosis and whenever they are coming towards end of life they can get very, very agitated sometimes get very unsettled, very angry sometimes and whenever you tease out what actually is going on, they maybe have not dealt with things very well in their earlier life Maybe there's some sort of a broken relationship or areas of a family life that makes a reconciliation, and that all comes out coming towards end of life, and you find out a lot of things that have happened in the patient's earlier life.
And we as nurses help talk things through with our patients to ensure that whenever they are at peace of mind, you can ensure that there is a better death.
sarah.cousins: It always surprises me, they look at what's important to people in different parts of the world and depending on where you are, it is a bit different. So a recent study in America put in peace with God at number two after symptom control and other places might not, but trying to involve the chaplaincy team can really alleviate a lot of patient’s anxiety, I find, that we don't always jump to, you know, but maybe we should jump faster.
donna.grier: We work very, very closely with the chaplaincy service within the hospital. And I find that no matter when you ask them to see patients, just recently last week I had a lady, a young lady and all she wanted to do was to go to confession. So I went to the priest. He was in the hospital seeing a sick lady of mine approaching end of life and he went to her. And that lady went out of the hospital a different person. She was able to confess whatever it was that was worrying her and all she wanted was to do was see a priest. Previous to this, this woman has been discharged, readmitted, discharged, readmitted and it happened on four occasions within two weeks. And now she has been at home for a full week and she sorted out whatever was bothering her through meeting a priest to do confession. So, I find we have a very good relationship with out chaplaincy service here within the hospital.
sarah.cousins: And that's the thing with cultures or with people from other parts of the world living in our area. You know it's no harm in not knowing but the harm is not asking. You know nobody minds, if you ask a question about their culture or about their beliefs. You know it's, it's the ignoring them, that's the often the issue.
donna.grier: I always say dying isn’t very easy, you know what's going to happen and there is a lot of beauty in it, but the fact of people dying, it makes life precious, you know you have a lot of memories, and unless you make the last and final days happy days, those people can be in comfort and have a good death for family to go on living life after someone has passed away. There’s a lot of memories to be made. You hope you are putting people at ease with themselves whenever you are meeting them.
sarah.cousins: Thank you. Aine any final thoughts?
Aine.feeney: I suppose that continuing from Donna, I think as palliative care nurses because our role is very specialised. We have that bit of time to speak to our patients and facilitate and organise their wishes at end of life within the hospital, you know. We act as their advocates, and try and address any issues at all they’re facing, whether it be a reconciliation with a family member. We can act as the go between and facilitate meetings with them, whether it's a pet that they want to bring in to hospital, or that we can bring them out to the front door to see it, or whether it's simply just some prayers with a priest or a minister, but we certainly as a palliative care team try with all of the issues that are patients are facing, try to facilitate the best death in a hospital setting, so nobody should be scared when they see us at the end of their beds.
sarah.cousins: All right, and I will just close there. Thank you so much. It's just a few of the stories that we're meeting in the hospital day and daily. Thank you to our panel Donna and Aine. Thank you for listening. And, as I said, if there's anyone interested in knowing more wanting to get in contact with us, please do so, we're always happy to talk. Thank you.