Finding the right balance between active treatment, which may include surgical or semi-surgical interventions, and palliative care, can be difficult. The two can go on in parallel, of course, but often a full palliative care assessment and plan takes place when the primary medical or surgical team have drawn a line under their management. Ideally, palliative care expertise would be provided alongside active treatment, if it is recognized that the medical condition is incurable, death is likely in a certain time-frame, and there are symptoms that need to be alleviated. In the real world, perhaps due to resource limitations, perhaps due to fear of confusing families, or perhaps because it is very difficult to ‘do’ palliative care while patients are being taken away for various procedures, the two approaches tend to occur sequentially. If a patient dies shortly after such an intervention, there will be regret that the right balance was not achieved. A potentially ‘good’ death was eclipsed by hospital-based interventions that ultimately brought no benefit.
In this scenario I describe a patient, Thomas Franklyn, for whom the correct balance between active treatment and palliation was difficult to find. It is fictional, and I have deliberately kept the ‘procedures’ and the ‘disease’ unnamed, so that its principles can be applied in any medical area.
Complaint: Excerpt from letter, written by family member to the Trust:
‘…we do not understand why Thomas had to go for all those procedures, including one to stop bleeding that occurred as a complication, when he was clearly dying and suffering. The doctors asked him how he felt about having them, but he was in no state to give an answer. By the time the palliative care consultant came to see him he was so weak, any chance of going home had passed. In the end he died in the hospital which was not what he wanted. It was obvious that he was dying from the beginning, but because of these decisions his last few weeks were spent waiting, recovering from procedures or in pain… ‘
View from the ward sister:
You can often tell when death has become inevitable. The patient engages less, eats less, sleeps more. There weren’t the classic signs of imminent dying in Thomas’ case, but we all knew it was not far off. So on the wards rounds we mentioned palliative care, and the doctors agreed it was time. But at the same time there were more procedures that could be done, not for the sake of it, but because they were designed to ease certain symptoms, or reduce the risk of infection, and ensure a bit more time. We asked Thomas if he was happy to have them – he was quite capable of agreeing and signing consent forms – and he said yes. He got through the first two procedures pretty well, but the after the third there was a bleed, and we rushed him down one night to sort it out. They stopped it, but he was never the same afterwards. A lot weaker, far less engaged with us and the family. He never really recovered. Palliative care came to see him again, and because our team now made it clear that there was nothing else to be done from their side, they started full end of life care… a syringe driver etc. I could tell the family weren’t happy. They had set their hearts on him getting home, had prepared a room downstairs. But he deteriorated too quickly. It was so sad. Then, two months later, we received the complaint…
View from Foundation Year 1 doctor (FY1):
I’ll never forget this patient. I discussed the case with my educational supervisor and wrote a reflection on it. The main challenge, for me, was balancing that sense of diminishing returns from the procedure against the time it was taking to arrange them, and the discomfort they caused. We all knew he was dying, and to be fair my consultant discussed the possibility that the procedures might be futile, but on the other hand if they worked, it was possible that Mr Franklyn would survive an extra two months, maybe three. That would have been a real gain, for him. But it didn’t work out.
The thing is, I had a sense that it wouldn’t work out. Mr Franklyn was getting weaker every day, not eating well, and I had a bad feeling. In the discussion about futility, which we had in a meeting room one morning before heading out to do the ward round, I was asked my opinion. It was my second month as a doctor. I was really pleased to be asked, and I said that I thought he looked very frail and wouldn’t tolerate any complications well. But as soon as I started talking, I thought – what do I know? I haven’t even seen a patient with this before. I was very happy to accept the consultant’s view, as she must have seen hundreds. So we talked to the family and the patient, who was still alert enough, and were honest that the benefit could be good, but that it would take more time to get the procedures done. They agreed. We didn’t say they were high risk, I don’t think my consultant would have suggested them it they were. But then there was a complication, and it appeared to speed up Mr Franklyn’s dying. I remember going home thinking – I knew it! I was right that time, but next time I might be completely wrong. You have to respect experience.
View from the consultant:
At the end of the day, it looks like a bad call. I was very careful to involve the whole team, nurses, the family, and the patient of course. But in these situations where you’re dealing with quite specific diseases and specialised procedures, people look to the clinical leader in the team. They are the ones who have seen it before, who have the deepest experience. The patient, Mr Franklyn, was passive… by which I mean weakened by his illness and happy to receive advice from a team he trusted. It isn’t right or fair to dump all the information, the pros and the cons, on a patient and wait for a yes/no answer. People are different, but they often need to be guided. That is our job. I guided him towards the procedures that, if successful, would have allowed him home for a good couple of months. One of them went wrong, as we know.
What about the palliative care side? That was a criticism, that we – I – didn’t get pall care up sooner. Well we did, but Mr Franklyn was being prepared for procedures, getting transfusions, having antibiotics to cover the procedures, having regular blood tests… the situation wasn’t really stable enough for them to initiate a calm management strategy. So I said, look, we’re in the middle of everything, we’ll let you know when the procedures are done. We were proactive on agreeing an escalation plan and resuscitation parameters, but even that was a bit tricky. What if he deteriorated just after, or during, an intervention? Should we let him go without any circulatory or breathing support, or try to re-stabilise? Can you take a patient with a obviously terminal condition to ICU to get them over an acute, procedure related complication? ICU may have a view different to the ward team? If you decide no, you should tell the patient as they go for the procedure that if they deteriorate they may never wake up again, as we will let them go. Who is going to agree to that? (In the event he did deteriorate, with a bleed, and that required all hands on deck for a while.)
What did I learn? The more I see of these sad situations, the more I am inclined to say to patients, yes, there are things we can do, and they may work, but we are not going to stop the underlying disease. So do not be afraid to draw the line. Tell us when you have had enough. We, the doctors, may not be the best ones to tell when that time has come, despite all our training and all our experience. It may sound like I am absolving myself of responsibility, but sometimes it is true.
View from the palliative care consultant:
I often ask myself the question – how emphatically should I make the argument against further interventions, if I feel that the patient is likely to die very soon? This requires very careful analysis, and each case is different. I am asked to see patients under many adult specialties – neurology, cardiology, general surgery, gastroenterology, gynaecology – and each one has its specialised procedures, its own evidence and knowledge base. Although I am confident that I can recognize the approach of futility, I am not always right, and I have seen lives extended almost miraculously, by fairly straightforward surgical or endoscopic or radiological interventions. They can work. So it is not justifiable for me to come onto a ward and say, wait, slow down, leave this poor man alone, he is ready to go home to die. On the other hand, I, and the specialist nurses, and perhaps ward nurses, may need to be guardians of a patient’s dignity if we feel the specialist team is having trouble seeing the wood for the trees. It’s a balance. Each time. With Mr Franklyn, events show that we were wrong, and I was wrong. If I had stepped in assertively after the second procedure, recognizing that he was continuing to go downhill, we may have been able to get him home, albeit for a week. That would have satisfied the family, and Mr Franklyn. We lost that opportunity.
This cases adds to the sum total of experience. It also confirms that while we do our best, we cannot control the disease, nor can we control the outcomes of every procedure. Complications do occur. They will occur. But usually, they do not, and the patient gets the best out of the procedure.
We involved the family in every decision. The patient too, but he was becoming disengaged. We decided to see the treatment strategy through – perhaps there was an element, in the primary team, of ‘now we have started we should finish’. And it didn’t go as we hoped.
The complaint, when it arrived, was upsetting. But it shows – and this is a lesson – that although we thought the family were alongside us with the decision-making, they weren’t, not entirely. We flattered ourselves that there was consensus, but perhaps we convinced ourselves of that because we knew what direction we wanted to go in.