On this blog I have explored the challenges involved for doctors who engage patients in conversations about resuscitation. I have written about the emotional energy consumed in initiating them, and in The Hill, a series of 7 episodes, I described the spectrum of reactions seen in patients and relatives. Recently I gave a lecture that made use of the figure below to illustrate that many patients we see during acute admissions are on a downward trajectory. We may not know what line they are on, or how far along it they have come, but it is our responsibility to ask what they know. Do they understand that time may be running out? If they do not know, we must decide whether it is an appropriate time to explain it, and then encourage them to consider their wishes should they deteriorate more quickly than anticipated.
This duty does not sound unreasonable. Who better to hold a mirror up to the patient who may have been going downhill in complete ignorance of their true condition for months? Who better than the doctor looking after them on the ward? However, judging by the number of patients who reach an advanced state of organ failure and frailty without being engaged in such a discussion, perhaps it is unreasonable.
My recent lecture was called ‘Reputations’, and was based on a previous post that explored the tendency for doctors who are willing to start such conversations to acquire a name for it, as illustrated in the Twitter exchange that triggered the post.
The impact on patients and their families should not be underestimated either. Although we may decide to start the conversation because it is the ‘right thing to do’, it can hurt. As doctors, we must ask ourselves whether the hurt is justified.
On a recent ward-round I identified a female patient who had been admitted several times over the last few months, and who was clearly quite far along one of those trajectories. It wasn’t cancer, and as is often the case in ‘benign’ conditions, neither her GP nor the many other doctors who had met her in hospital had recognised the features of approaching death. After the usual business of the round I paused, took the temperature of the situation, made a silent assessment of the patient’s ability to handle the discussion, and sat on her bed. Her husband was sitting in a chair on the other side of the bed. I could tell by his expression and general demeanour that he knew what I was going to say even before I started.
I will not repeat the exact words here, but within minutes of making it clear to them that the repeated admissions were signs that her body was failing, a pall had settled across the cubicle. When I said that we needed to consider what would happen if her heart were to stop, there were tears. It was as though I had broken the news that she was dying – right now. Yet this was a preparatory conversation, an attempt to allow her to let us know her views weeks and months before that happened. It was an attempt to get the couple to face reality, an undeniable reality, before it rushed at them so quickly that the decisions were rushed, confused or taken completely out of their hands. Yet it felt like I was single-handedly wrecking her life, pulling out the last vestiges of optimism and throwing them on the floor. Another relative came onto the ward; her husband heard the voice outside and called, “No, don’t come in, wait outside,” as though the conversation we were having was a turning point. The big conversation. Yet the point of such conversations is that they do not take place at the point of inflexion, but before… way before the final emergency.
We finished. I completed the ward round. 45 minutes later I passed the hospital cafeteria and saw the husband and the other, female relative sitting gloomily at a table, their faces red and tearstained. The impact of the conversation had been huge. It had made visible the monster that had been growing for two years. It had made inescapable the decisions that had to be confronted sooner rather than later. It had caused acute emotional distress and accelerated the grieving process. As I walked past the cafeteria the husband noticed me and stared blankly. I acknowledged him, but there was no right way to act, and I moved on.
It had been my decision to start talking. It would have been so much easier to ignore it, to discharge the patient after she recovered from the present emergency, and let nature take its course. Then, when she was deteriorating in a way that any person, medical or not, could see was a prelude to death, another doctor would have to confront the issue. So much easier.
Yet, a few days later when the emotional injury that settled I met her husband again by the entrance to the ward. He thanked me for being “honest”. That is the doctor’s reward for choosing to start the conversation. It is meagre. But attached to it is the knowledge that when a patient does enter the terminal phase, the necessary decisions will have been taken, or at least considered. The patient’s wishes will have been explored while they still had the capacity to think clearly and the ability to articulate them. The doctor who started the conversation probably won’t be there to witness the benefits of that hard conversation. Although they walked away feeling as though they had wrecked a life, they may well have done the opposite, encouraging the patient to rebuild and construct a new approach, a different way of thinking, better suited to the challenges that come in the last weeks and months of life.
Try Interactive Ward Ethics, a role playing experience through 4 scenarios – click here