In nursing, I suppose like any other profession, the whole business of bereavement and grief and death is never dealt with, or if it is it is dealt with in a very academic overview. It’s rarely dealt with in terms of personal development.
Even today it’s no better than it was ten, twelve years ago, or minimally. I think the thing that’s crucial to nurses is the attitude of the Ward Sister. In any hospital it is the attitude of the Ward Sister that will dictate what actually happens on the wards and how much emotional support available. They are the pivot on which any hospital actually functions. I mean, consultants come and go, various things happen, but it’s the attitude of the Sister and how she deals and allows the rest of the staff to deal with things that will dictate what will happen. Recently I asked the Night Sister, if a nurse on the ward today was upset about a person dying, how much support could she actually rely on. ”Very little” was the answer I got.
Nurses Counsel Patients
In an acute hospital, the relationship between a patient and a nurse can sometimes be extraordinarily close for quite a short period of time, and patients may share things with the nurse that they have never shared with anybody, even family. The nurses have a dilemma about whether they can be themselves or whether they have to be “professional”. On night duty things are a little bit easier because it’s a time when the nurses aren’t as frenetic, but it’s also a time when patients are often awake so they’re ready to talk if the nurse is perceptive enough and has the time to sit down and listen. Nurses counsel patients all of the time but it is not recognized. They are doing it at some level all of the time, without any support – not only without any support, they could actually be reprimanded. Sometimes the patients perceive the staff as being terribly busy, but if you are walking around doing the round they think you have nothing to do, so that they can talk to you. I used to sit down on the bed and have a chat with patients and the nurses were absolutely horrified, that a Matron would actually sit on a bed. There’s a perception that somehow if you’re sitting down listening to patients, you’re not working. It’s much easier to tidy up cupboards than to actually sit down and listen to a patient who’s distressed. So that at night there is the freedom to do that and the patients are ripe for it and quite a lot of close interaction can actually take place.
The Cancer Scene
In particular in relation to the cancer scene, nurses have a terrible dilemma about wanting to be honest with the patient but the hospital policy has not been adequately set. Where you have a consultant who can’t deal with the whole topic of cancer and dying, he’s going to actually prevent the rest of the team. It’s interesting – in law it is only the consultant who can give the diagnosis, strictly speaking, because diagnosis as such is a medical thing, not a nursing thing. But very often what patients are asking is not strictly speaking a diagnostic question. Nurses are often caught between wanting to be honest with the patient and feeling very inhibited.
I have come across only one situation where I felt that I was legally on a sticky wicket and couldn’t actually say anything. A patient was dying, and was very distressed. Her husband had actually told the consultant that if he told her what was wrong with her and that she was dying he would sue. It left the nurses in an impossible situation because it isn’t the nurses who would have been sued, or the hospital, it would have been the consultant. So apart from the emotional difficulties that go on, there’s a lot of legal issues and nurses need a lot of support in that area. I suppose eighty percent of nurses are terrified to deal with it.
When patients ask, it’s something that will come spontaneously at a particular moment. If it’s not dealt with it will actually pass and they may never discuss it again. I can remember one patient who grabbed my arm and sat me down on the bed. She said, “Sit down there – you’re not going to lie to me.” So we discussed what her situation was, and on that discussion she made the decision to go home. The staff nearly spaced out – oh, she couldn’t possibly go home, she couldn’t cope… She died at home three weeks later, but she needed that information in order to make that decision. You know the whole environment really creates terrible dilemmas for the nurses and it’s not good for patients.
Addiction to Perfection
Sudden death in an acute situation may be distressing, but at the same time it’s perhaps more acceptable than in a long stay situation, where nurses have a perception, and it’s a good one in a sense, that people should never die alone. But it’s also unrealistic. People slip off at three o’clock in the morning when you are not beside them. That is the reality, but nurses feel terribly guilty about it and may well be reprimanded by some nurse managers. Nurses often have very unrealistic views of what we could actually achieve – the ‘Addiction to Perfection’ bit is absolutely there. I can remember two situations where we had a patient who choked to death. Now in neither situation could it have been prevented – both had swallowing difficulties, both were in the hospital a long time. They would have been told that if they wanted something out of the locker they should have called the nurse, but you know patients will inevitably do whatever they want to do. In both of those situations, I made a point of seeing the staff and talking to them. They just felt so guilty, no matter what I said to them. They took the blame – there was nothing they could have done to prevent it, but yet they feel guilty about it.
In the cancer scene too, the avoidance issue comes up. A consultant will invariably tell a spouse before he tells a patient. This actually sets up a barrier immediately between the patient and the spouse which doesn’t have to be there; but then the family have to work their way out of it. Whereas if the patient is told in the first place, it’s the patient’s choice to tell anybody else. I remember one patient who had a simple D and C and she should have gone home, say, the third day, and the hospital asked her to stay. Her husband came in in the afternoon and was sitting beside her. The consultant came in, said to the husband, “I’d like to talk to you”, went out, talked to the husband, and off he went. The husband came back in – it was a malignant tumour – but that wife didn’t believe that her husband had told her everything. It was very sad. Doctors don’t perceive that as causing damage, or how that could actually dictate how somebody dies or lives or lives until they die. It totally removes the sense of autonomy from the patient. Again, no matter what anybody says, it is difficult for the nurses to pick up the pieces. If you have a very sensible Sister, she may be able to sit down with husband and wife say, “ Right, who wants to know what? Let’s talk about this” – but they’re rare. Nurses have a perception that they can cope no matter what. They’ll moan and groan afterwards, but they won’t do something about it at the time. They won’t question it. They will take the responsibility all the time.
No Room to Grieve
In a long stay hospital, you can have a very long relationship with some patients and particularly with the younger people, young MS patients for example. Because it is their home, the relationship does go way beyond what would happen in an acute situation. It is difficult sometimes to reach a good balance. Nurses might well take somebody out on their afternoon off or take them home, and it may be appropriate. After all patients and staff are free to come and go as they wish, there isn’t a restriction in that way, so that the relationship goes beyond a professional relationship but at the same time there is very much professionalism within it. When a young patient like that dies, staff would be very upset inevitably. There’s really no room for them to grieve – there’s very little acknowledgement of the need, even by their colleagues, never mind by outside therapists or counsellors. There might be a slight acknowledgement by their colleagues but it would be brushed over. There’s really very little room within the environment that actually allows for that kind of grieving and it’s sad, it’s very sad. Again as I say, a lot would depend on the Ward Sister. It wouldn’t matter how much support a Nurse Manager might give, if it’s blocked at Ward Sister level.
Lack of Support
Many of our staff would be in their thirties or early forties and their own parents are dying, and they come back to their work at the hospital after a bereavement at home and it really is very difficult. Particularly they would find it difficult if perhaps they weren’t at home to look after their own relative. Here they find themselves back in the hospital, looking after this old lady and wondering, “Did my mother go through this? Who was with her? What happened?” In these areas that are directly related to bereavement and grieving, there is very little support in a hospital environment, which I think is a shame because if the nurses are not supported they are not able to support the patients.
We do have in-service training of one sort or another and of late we have had a clinical psychologist run small groups at which people could bring up anything they wish to. Sometimes something might come up at that, but once they get into the feeling end of it, it’s too much for them. It’s very hard to have it at a level which is enough for them which isn’t too much, to just get the right level to hold them without terrifying them. It’s not easy. There is a great need and a huge defence among nurses, because I suppose in a way they are facing these emotional difficulties day in day out, and so many of them are just blocking it off and burning out, because there is really no help for them.
Keep on Giving
Sometimes the relationship can be very close where the patient cannot speak, so that the non-verbal communication can be very close. If there is one nurse who can understand, she will continually be called upon to interpret and that will be another deepening of the relationship. That I think is the dilemma – it’s like caring at home, in many ways in a long stay situation, but somehow there is this professional tag attached and there is conflict very often between the two. They do find it difficult to handle. The conflict is wanting to do what they need to do themselves and being afraid because of the institution or the management or how other people will actually perceive it, and they don’t have the confidence or the knowledge to actually stand in their own space. I mean we have a lot of burnt-out nurses. They just feel that if they keep on giving, everything is good – as long as they’re seen to be giving, they’re fine. And I often think about why we go into nursing in the first place: the need is our own, but many nurses don’t see that because they see it as giving to the patient. They don’t see it as their own need, they see it as giving and the suggestion that they might actually care for themselves first is something very alien. And with the need to care for others, there’s the need to dictate how others are going to respond.
Let Patients Decide
Allowing the patients to make their own decisions they find very difficult too. We find with the younger nurses when you ask them how much, say a patient should have in their own care, they look at you as if to say, What kind of an answer do you want, what is the right answer to give? And they are afraid to say, well really they should be allowed to dictate their own care. They would be terrified to say that. I had a situation recently while talking about ethics to a group of about 35 nurses. Now to me ethics is a day-to-day matter, you’re faced with it every day of the week, but fifty percent of those nurses were horrified to think that actually patients could make their own decisions. I was equally as horrified that they thought like that. I’ve come across situations where patients have been physically abused and verbally abused and the nurses themselves found it very difficult to see that it’s their own burn out, their own problem. I think that the more open institutions are, the less likely things are to go wrong. Doors open all the time, anybody can walk into the place and walk around – patients are safer in an environment like that. They are not safe if there are closed doors. It’s not that nurses are being deliberately unkind, it’s just their snap reaction, but the denial that goes with that is enormous.
Other Patients’ Response
When patients who have been with us for a long time die, or in fact any of the patients, very often staff from the ward do go down to the mortuary when the remains are going out. There is a greater permission somehow to have a little weep or to be upset, but not at ward level. The other patients are excluded from the event in acute hospitals. In long stay, the other patients are part of the community. We don’t have a room which people can be shoved off to when they are dying, so they die in the ward and very often the other patients are very much a part of the dying, particularly if the relatives get involved with the other patients, and it can become very much a community sort of thing which is quite good. But sometimes in an acute ward what will happen is that the nurses won’t say anything to the other patients – now all the other patients know that somebody has died, but sometimes the nurses won’t actually give them permission to talk about it. That must be very hard, because they want to know what happened. Why did he die suddenly? Will that happen to me? Inevitably there are questions. It doesn’t take two minutes to sit down with a patient and say, so and so died very suddenly – anything, just to give them the opportunity to open up the conversation. This is another neglected area because the nurses themselves may be upset and because they may not deal with it at all.
(Margot McCambridge is a trainee psychotherapist at the Institute for Integrated Psychotherapy.)