What can you say when someone doesn't have much time left?

Three excerpts from conversations in an intensive care unit (IC) of the Amsterdam UMC between doctor(s) and family members of patients who are not, or no longer, able to express their wishes.

1.

Family member: “Then let's wait another two or three days before we stop his treatment.” Doctor: “Two or three days is not, uh, I don't think we can justify that to him.”

2.

The doctor says that the chance of success with continuing life-sustaining treatment is small and suggests stopping it. Mother: “While I don't know – look, my girlfriend has a twelve-year-old child now.” Doctor: “Eh.” Mother: “They also estimated it at ten percent there. And that child just walks around happily. So. I keep an open mind about everything.” Doctor: “And how …” Mother: “And a lot of people say that to me too. I know a lot of people who also have their children here […] who have experienced this.”

3.

Woman: “Yes, because otherwise we will lose it?” Doctor 1: “Yes.” Doctor 2: “Yes, that is true.” Doctor 1: “Because that's it.” Woman (crying): “And I don't want to lose it.” Doctor 2: “No.” Doctor 1: “No.” Woman: “I don't want to lose him and I know you can't guarantee that, but I can't do it without him.”

'What makes life worth living' is the name of this interview series. The answers to that question vary from interview to interview, and sometimes you have to look between the lines. But at the end of 'an IC process' an answer no longer seems available. How long should you continue to ventilate someone? Should you even put someone on a ventilator if that could (further) damage the lungs? Do you have to resuscitate a terminal patient after a crisis? What do 'worth' and 'value' actually mean?

Often no one knows exactly whether you can still do something or not, says Eduard Verhagen, head of pediatrics at the UMC Groningen, in the podcast To life and death (2021) about dilemmas of doctors and families when deciding to discontinue or continue ICU treatment. Then, he says, it is very important that you sit together, including with the parents, to hear from them whether they would still like that.

Such conversations are held in “a gray zone” of incomplete knowledge about the relative advantages and disadvantages of the latest options, Aranka Akkermans also says. “What else can we do? And what else do we want, also with a view to quality of life?”

As a communications scientist at the Amsterdam UMC, Akkermans (1992) conducted research into such conversations in the ICU wards for newborns, children up to eighteen years old and for adults for almost six years. She wanted to know whether and how doctors in practice involve family members in ultimate medical decisions. And why doctors and family members sometimes talk past each other, and why conflicts even arise in the midst of fear and uncertainty.

To this end, she recorded more than a hundred conversations between doctors and relatives of ICU patients. Those recordings were transcribed and analyzed word for word (the examples above are from those recordings). In addition, Akkermans also spoke with doctors, nurses and family members. In December last year she received her PhD for her research at the University of Amsterdam.

The plan for that research – it has never been done like this before – is part of a larger project in consultation with various UMCs, says Akkermans. She had been interested in medical communication for some time “because everyone can come into contact with it”, and after her research master's degree in communication science – also with a medical subject – she was able to join as a PhD candidate.

“Doctors themselves thought something like this should be done. They know how important these conversations are for the immediate family and at the same time they find it difficult to have them themselves. There is only limited attention to it in their training, so it is real learning on the job. And there everything is under pressure and there is little time to spar and reflect. So it's hard to get better at it.”

What have you discovered?

“Doctors really try to get it right, but they also tend to stick to their own method and then fill in, intuitively, what works for a particular family. Without explicitly asking about the needs of the other side.”

Are doctors more likely to transmit?

“Partly. And it is also exciting for the doctor himself. Doctors expect families to expect them to know what they are doing. And they find it difficult to ask: how do you envision this?”

It's about empathy, emotional things, fear, worries – there wasn't enough time and attention for that

Akkermans' research already produced material before it had really started, she says. Preliminary discussions with relatives, in which she explained the research and asked for permission for the recordings, often became broader. “Many family members enjoyed being able to tell their stories. For example: I know so much about my child and I don't know whether it will be taken into account. Or: I find these conversations terrible, because I only understand half of them and then I also have to think about what I want and I don't know what is best.

“That was not scientific data that I could use, but it did nourish me and give me direction to think about it, and I also liked that I could do something for them as a listening ear.”

It is no secret that friction can arise between a doctor or team of doctors on the one hand and family members on the other – parents, grandparents, partners, and other relatives or friends of a seriously ill patient. However, Akkermans investigated exactly how such conflicts can deepen. In her dissertation she identifies four factors: uncertainty surrounding diagnosis and treatment, 'strong negative emotions' on the part of the family, a lack of health skills ('medical literacy') on the part of the family, and, also on the part of the family, the feeling of being partly responsible for an often irreversible decision.

Are doctors aware of this?

“On the surface, a conflict often revolves around something substantive and doctors tend to keep explaining. But that is often not the problem at all; it's about empathy, emotional things, fear, worries – and there wasn't enough time and attention for that.”

The combination of uncertainty and responsibility is extra heavy, you write. But it is also not good if loved ones have no influence at all.

“That is really a dilemma. The idea of ​​making decisions together is rightly considered important. But I think you can also let families play a smaller role if they prefer that. But little was asked about that. Some people hardly even want to be informed, or they say: please take this decision out of my hands.”

It is fascinating to read the strategies that doctors use – consciously or unconsciously – to manage conflict. Often in terms of content, by recognizing or renaming the conflict (“Yes, that is the difficult thing. We think differently about this, we think that he is not doing well at all”); by taking a step back (“We all agree on the goal”); or by asking about it (“Are there anything that is not clear since our conversation yesterday?”).

It can be empathetic (“Of course I understand that this is an impossible situation for you”); by procrastination (“I suggest we try to give it a little more time so that you can also form your thoughts about it better”); and with moral or other pressure (“This is not what a doctor should do,” “Would you please look at me?”). Or by simply giving in (“Okay, it's clear what you're saying, and that could affect our plan”).

And – Akkermans came across it exactly once – by saying categorically: “The decision to continue or discontinue this treatment is not yours, it is a decision of the medical team.” Because if the patient cannot decide for himself, the doctor has the final say.

There is tension there. On the one hand, it is about making decisions together, on the other hand, it seems that the family is mainly getting used to the inevitable. Then such a conversation comes down to convincing.

“Yes, I didn't feel comfortable with that. Once the medical team has concluded that nothing more is possible, they sometimes find that message too harsh to deliver immediately. So they do it more cautiously at first. Something like: it's a really bad situation, but we'll keep an eye on it. And often that is only one or two days and then it is still clear. If doctors do this, it is with the best intentions.”

Was God also at the table?

“Religion was hardly discussed. One woman said that the dear God should make the decision, but that was more to avoid it, she herself was not religious at all. That's the only example we've seen.”

You write that there is no insight into the role of nurses who of course also talk to a patient's family and contribute to understanding the situation.

“It is annoying that you cannot grasp the whole of reality. On the other hand, people also talk to friends or family at home, and you are not there either. But we do think we have come a long way.”

Maybe you can show it more if something really matters to you

Akkermans' thesis makes obvious recommendations such as: avoid jargon, metaphors and complicated sentences. But also: prepare every conversation, build a bond with the family, use visual aids, take a lot of extra time to see if the family understands the conversation. Not only at the end, but also during the conversation, step by step. And: pay more attention to it on the 'work floor' and in training.

The national training offer for ICU doctors now also includes a 'learning path' based on research by Akkermans and her colleagues. And there is now also a 'conversation guide' for doctors and nurses. Finally, anyone can listen to the podcast series To life and deaththe episodes of which are partly based on cases from this research.

What did those conversations do for you?

“The best part was the very beginning, when I was involved in the various departments. Sometimes in a green nurse's uniform, sometimes in a white coat, sometimes in civilian clothes. I was also allowed to help as far as possible. When a baby needed an injection, I was allowed to hold its hand to reassure it. So beautiful.

“But it was sometimes too much, especially in those children's wards. Then I sometimes thought: why would you even start having children? It felt like something had to go wrong. While of course things usually go well.”

And the conversations about adult patients?

“You are there as a researcher, then you hear and see all the emotions and I thought I shouldn't show them too. But every now and then I had to fight back tears. Doctors also asked themselves: we want to provide support to the family, but shouldn't we also show it if something affects us?”

A doctor who cries along?

“I don't know whether that is wise, no. But maybe you can show it a little more if something really matters to you.”

In the meantime, Akkermans no longer wears a white coat, but works as a team leader at the Grafisch Lyceum Utrecht, where she already taught Dutch before her promotion. She calls it “a broad career”, with the combination of practice and research, “two types of curiosity” as a constant. “By nature I want to be able to plan everything, but sometimes things just don't work out.”

To share





Email the editor