This dialogue is part of a continuing examination into the interactions that occur when doctors and families meet at the end of life. The way that these two parties react to death, the emotions that they project and the decisions they make, must derive from the same understanding of the patient’s needs if conflict is to be avoided. Sadly that is not always the case, and readers of this blog may be aware of cases where disagreement has led to complaint, and sometimes to court.
In this scenario, an 79 year old woman was admitted to hospital with pneumonia. The medical team recognized that she was deteriorating quickly, and that resuscitation would not be effective. An attempt was made to contact her next of kin, a 54 year old son, by telephone, but there was no answer machine. He lived 200 miles away, although two other children lived closer. She died 18 hours after admission, and no attempt was made to resuscitate her. Following a complaint, that son has arranged to meet the consultant in charge of his mother’s care.
Of the many factors that contribute to a lack of assiduity in making sure that discussions about resuscitation occur, an important one, I feel, is what I call the ‘normalisation of death’. Here, the relative comes to a similar conclusion, and challenges the consultant.
The son (S) sits in an office with the medical consultant (C), a senior nurse and a member of the PALS team. Only S and C speak.
C: Thank you for coming.
S: I just want to know why you made that decision without asking us, her family. I was listed as next of kin.
C: Of course we need to discuss why it was decided that your mother should not be resuscitated without your involvement, but it is very important for you to realise that the decision was not made lightly. Her death was felt to be inevitable. We thought that there was absolutely no hope of recovery. We always try to discuss those decisions with relatives but sometimes it is just not possible.
S: But how could you make that decision to let her die without asking us? She would not have wanted you to give up so easily. We would have told you that.
C: It was not a matter of ‘letting her die’. We knew that she was likely to die despite everything that we were doing, and that resuscitation would not have worked. So yes, we did permit her to die, because we saw the signs that this was inevitable. We never had a chance of stopping it happening. She was not deprived of a meaningful opportunity to survive…in our opinion.
S: But she never had a chance without it. She would have wanted you to try – your interpretation of meaningful is…your interpretation. What of hers or ours?
C: Well, if she understood the very tiny chance of success, I don’t think she would have wanted us to resuscitate.
S: How can you say that? You didn’t know her. She never gave up on anything. However small the chance of success, she pursued it, in all areas of her life.
C: I’m sure she did. I definitely got that impression from her and from the background history that we learned about her. But we are talking about a different sort of chance here. The risks in making a decision on this small chance were probably more grave than those she was used to in other areas of her life. The risk was definite harm and suffering. In fact it wasn’t a risk…it was a certainty.
S: Still, it was not up to you to make that decision. It was not your body or your mother. We should have been involved. And we know that you are required to involve us. It’s in all of the regulations and professional guidelines.
C: You are right, it is. But those guidelines cannot apply to every single situation. And this was a special situation. She was deteriorating rapidly. And although we tried to get hold of the next of kin, you, or other family members, the fact is her illness was progressing at such a rate that I do not think we would have reached an agreement with you before her heart stopped. And I do not wish for my patients to undergo resuscitation by default. Just because the treatment is theoretically available does not mean it should be given to every patient. That would be in unthinking way of practising medicine. And although you are right, it would have been ideal for her, and if not her then you, to have been involved, it is I who would have been responsible for any side effects from that treatment. And those side-effects are not minor. I don’t really wish to describe them in detail to you now when you are grieving, but you undoubtedly know about them.
S: Yes of course. Cracked ribs…brain damage. We know all about those. But if there is a chance of life afterwards surely that outweighs all of those factors. Wouldn’t you agree that the continuation of life is worth it? Don’t you think so? Life!
C: We concern ourselves primarily with the quality of life rather than its duration.
S: I know you do. Quality over quantity. But surely that assessment requires more information about what the patient would want. Before deciding where they lie on that set of scales you must involve them, or if not then their family. Because your assessment of quality, is coloured by the many bad things that you have seen in medicine. You have a jaundiced view. You must not be allowed to make unilateral decisions.
C: You have a point there. My experience of seeing patients who never recover from resuscitation, instead spending weeks in a intensive care unit, in a sedated state, or deteriorating in a ward, unable to feed themselves, may have coloured my view. But I don’t think that makes me less qualified to make a decision…rather it makes me more qualified. That knowledge reonforced the sense of duty I feel…to protect patients from that fate… from that vision of recovery that I know converts into reality very rarely indeed. Life itself is precious, I agree, but a life allied to suffering, without meaningful communication with loved ones, is I would argue a life that is not worth living. I believe that.
S: So you are deciding whose lives are not worth living. That is what I suspected. It is completely unilateral. There is too much power in your hands. And I will not be so rude as to enter into other factors that might be influencing you. Such as worrying about how long such patients will remain in your hospital, using up intensive care facilities. Or the money that are spent on them. We won’t go there…
C: I can assure you that those factors do not enter my mind. When I look after a patient like your mother my only thoughts are for their well-being. But we need to think about how she was before she died. We been talking about how she might have been after resuscitation, and I feel that I cannot convince you that the small chance of a successful result was not sufficient to risk the suffering that resuscitation can cause. But let us imagine what she was like when she was alive. Do you mind? I don’t mean to be insensitive.
S: Go ahead.
C: Have you seen a person die?
C: I will describe it for you. It can happen gradually or suddenly. The person who was once talking can arrest and all discernible functions will cease. When this happens the chance of a successful result is perhaps greater because, sometimes, you can just as rapidly the heart back into a normal rhythm. But even then in a very frail patient shock to the system is too great for long-term recovery. But in your mother’s case it was a more gradual process. She came in talking, eating, functioning albiet weakly, but the chest infection did not respond and soon she did not have energy to eat or drink, was unable to bring a cup to her lips. Her heart was still beating yes, but she turned her head to one side.
I can never tell what patients are thinking when they have reached the stage, or if they are forming thoughts at all. What I can say is that the life that they have is purely internal. There is no exchange of ideas with those around them, at most perhaps an indication of how they are feeling or perhaps a flicker of recognition. And you must bear in mind that this is how they are before the heart stops. So if you ask me why I did not try to resuscitate your mother I must make it clear that the level of existence that she had prior to her heart stopping was one that I feel sure she would not have wanted to return to. Can I say with certainty that she could not have been brought back to better state than that? Not 100%, of course…but I can be certain that that was the most likely outcome. She did not die without warning. We had seen the signs of deterioration, and knew that within hours, a couple of days at the very most, her heart would give out. She was already receiving the maximum amount of treatment that we could give. Her heart stopping was a natural end to her illness.
S: You say she was on as much treatment as you could give. You explain that her heart was already weakening. But what about intensive care?
C: Intensive care is not for all. It is not automatic if patients deteriorate. Intensive care, if offered indiscriminatley, is sometimes a drawnout attempt at resuscitation. And it brings with it the potential harms, such as invasive ventilation and sedation, that resuscitation would invoke within a few minutes. In intensive care those treatments are added sequentially as parts of the body fail. But it is because we know that recovery is so unlikely that we do not send all of our patients there.
S: So by saying that she would not appropriate for intensive care you are implicitly saying that she was not appropriate for resuscitation?
C: That is true.
S: You cannot have one without the other?
C: If the patient is not referable to intensive care, it is not reasonable to resuscitate. Because after resuscitation you know that they will need intensive care. You cannot have one without the other.
S: So why are these issues not explained upfront? Why when she came into hospital was it not explaied that she would not go to intensive care?
C: It is like discussing a treatment that you know will never be relevant. It’s like talking about chemotherapy if a patient does not have cancer.
S: I don’t follow that. It’s an irrelevant parallel.
C: I’m trying to illustrate that if a form of treatment has no place in a patient’s treatment plan there is little point in talking about it. It confuses patients, leads them to consider options that do not exist.
S: But again you can’t pretend to know people feel about the preservation of life. It does not seem relevant to you because you are comfortable that a patient like my mother should be allowed to die without resistance. But the families of your patients will not always agree. The families of your patients have lived with those individuals their whole lives. Their death is more than the end result of another presentation of severe pneumonia. Their death is the destruction of a library of memories and experiences. It cannot be accepted without more discussion and thought.
C: I understand your point. But that accumulation of experience and memories is not respected by disease. Pneumonia affects people without discrimination or favour. And we know that disease well. Whatever the individual circumstances or experiences of our patients, and whatever their relationships, the disease will do what it will do and the patient’s organs will resist or succumb in complete ignorance of the value that the individual puts on thier life. The backdrop that scenery of emotional parts will make no difference from a medical point of view. I do not wish to be cold or overly clinical, but that is the truth.
S: But it is that attitude – doctor – that leads us to accuse you of brutalisation. You portray the patient as a collection of organs fighting a disease. And that results in a shrinkage of respect for everything else that patients bring into hospital with them. That shrinkage makes you less inclined to do everything in your care to understand the patient in the context of their family life. You see another severe case of pneumonia in an elderly person and you know, the moment you see that patient, or my mother, they will probably die. Only that does not cause you much distress because you have already seen ten in the last fortnight. It is inevitable…it is automatic, for you.
C: That is a very harsh accusation. You’re accusing me of valuing the lives of our patients to a lesser extent then their families.
S: But doctor, be honest with yourself. That must be true. You do not love these patients. If one of them dies you will go home and carry on your life. So don’t pretend that you value these lives as much as you value the lives of your own family. What I am asking you to consider is that you remind yourself how important those lives are to the families that you try, as you say – half-heartedly I say – to get hold of.
C: We do that. We are sensitive to these issues. You paint an unfair picture of us.
S: Then why only a single attempt to contact me? Why was a nurse not trying every avenue to get hold of me or one of the other family members. It would not have taken much effort or gumption. It was just not a priority for you, your team. You knew what was going to happen and that you could not stop it. I’m beginning to accept that, I respect your medical opinion. But why allow that to happen without doing everything in your power to bring us to the bedside earlier? I’ll tell you why. Because death is routine for you. For all of you. Common, frequent, a daily occurence, a column on the chart…routine! So for you, death does not bring with it the sense of crisis, a frisson of the exceptional, that it does for the families. This must be the explanation. Death is inevitable…you surrender to it – on behalf of your patients – and you move on…
C: We don’t…
S: Have time? I don’t care…
C: I wasn’t…
S: You move on, to concentrate on those whom you may be able to save. It’s important work, we accept that. You fight nature, march onwards across many battlefields, and cannot spare the time to stay behind with the dying or the dead, for nothing that you can do will save them. To do so would distract you, divert your valuable energies. I get that. But as the memories of the dead recede in your own mind, they enlarge and dominate the lives of the relatives. It is a crisis for them. Death, however it arrives, inevitable or no – and who am I, really, to argue with about that? – is a special moment. We need to be involved. Lack of involvement lends it an air of… insignificance, throwaway. We know that tomorrow another will die, and another, and another, but we don’t care about that. We can only think about our death. That’s where you, or the system you work in, fails. By not allowing space – physical, emotional, temporal – to develop around the deaths that you manage.
C: I…I can’t defend the lack of privacy you experienced, I know that is not ideal, but regarding of your belief that we are not affected by death, and do not allow it to slow us down…I cannot agree with that. We do remain sensitive to death. We have relatives to, most of us will have experienced death in the family. We are not automatons.
S: Are you sure? In this hospital, rushing around, moving your patients through, are you sure that you permit yourself the luxury of feeling how important each death is?
C: Not to the same extent as the importance felt by the family, that would be unrealistic…
S: But enough…enough to put other things aside, and make each death, or even before death, the prospect of death, to make each one special? If you did, and if the members of your team did, they would have found me or one of my siblings, before you made the decision not to resuscitate. In this case doctor, my mother’s case, the discrepancy between your team’s perception of her death’s significance, and ours, was huge. That’s why we are here isn’t it? You made a decision without us, and we believe that is not what she would have wanted. And you did not give yourself the opportunity to convince us otherwise. You thought it would be ‘just fine’…because it’s just so obviously right to you! Do you understand what I’m saying?
[The case is fictional]