Uncertainty may be the key to difficult conversations about blood cancer

In a hospital ward for serious blood disorders, a patient is sitting with his daughter, a nurse and a doctor. They are talking about the future, even though no one knows how the illness will progress. At first, the patient sidesteps the question and turns to his daughter to talk about their plans for the summer holidays.

A few minutes later, he is the one who reopens the conversation he had just avoided, asking whether the disease might suddenly start to progress.

In a new study, a team of researchers at the Department of Haematology of Rigshospitalet in Copenhagen has investigated how patients with malignant blood disorders, their relatives and clinicians talk about an uncertain prognosis.

The lead author is Cæcilie Borregaard Myrhøj, a clinical nurse specialist and PhD researcher who analysed the dialogue in the recorded conversations. She conducted the study together with consultant haematologist Stine Novrup Clemmensen and senior researcher Annika von Heymann, who share overall responsibility for the project. The results have been published in JAMA Network Open.

This movement between openness and hesitation emerged as one of the study’s most important findings.

In addition, the study challenges a widespread assumption. Rather than causing clinicians to postpone difficult conversations, uncertainty can be used to open the discussion while there is still time to discuss hopes, concerns and preparations.

The findings are consistent with what the researchers call “dual awareness”: the ability to both hold on to hope and prepare for the possibility that the illness may take a serious turn. This is important, says Cæcilie Borregaard Myrhøj, because it provides a more accurate picture of how people actually live with serious illness.

“Patients did not simply want either to know the prognosis or to be spared from it. Instead, they often move back and forth between confronting difficult realities and stepping away from them,” she says.

“We can certainly talk about the prognosis, even when it is uncertain. In fact, precisely because it is uncertain. When it is uncertain, we create a space in which we can talk about both the optimistic and the perhaps more realistic scenarios,” she says.

Patients wanted a chance to talk about the future sooner

For Cæcilie Borregaard Myrhøj, the story began with a problem that has long characterised the field of haematology. Patients and families lack a space to talk about the future, and doctors and nurses often hesitated because the prognosis was uncertain and new treatments could constantly change the picture.

Many patients were looking for realistic hope, not just the highly optimistic kind: the opportunity to hope for better treatment while also preparing for the possibility that the disease might worsen.

“The serious scenarios were often put off until the prognosis felt more certain. In haematology, that certainty often comes so late that patients and their relatives miss the opportunity to give priority to relationships, experiences and decisions that are important to them while they still have the time and energy to do so,” she points out.

This challenge led the research team to look for a tool that could provide a more practical framework for these conversations. They found it in the United States–based Serious Illness Care Program, which they adapted, together with patients and relatives in the Department of Haematology, to fit the realities of haematology in Denmark. They later named it Conversations about Life and Treatment.

In the version in Denmark, doctors and nurses are given a shared conversation guide, seven hours of training, ongoing supervision and ample time to talk with patients about their understanding of the illness, hopes, concerns, values, quality of life and wishes for the future. In addition, patients and their relatives receive preparatory material that enables them to reflect on what matters most to them before sitting down with the clinicians.

Patients repeatedly moved between hope and hesitation

The researchers closely examined the conversations themselves. They selected 25 of 75 audio-recorded conversations for closer analysis. These involved patients with serious blood disorders such as myeloma, lymphoma, myelodysplastic syndrome and acute leukaemia. Most were being treated for relapsed disease and had limited treatment options.

Patients and their relatives most often identified prolonging life, achieving a cure and relieving symptoms as their most important treatment goals. The conversations unfolded against a backdrop of tension between treatment, hope and concern.

The researchers drew particularly on two concepts to understand the conversations: dual awareness and clinical attunement. Dual awareness describes a patient’s ability to hold on to hope while also preparing for the seriousness of the illness. Clinical attunement describes a clinician’s ability to sense patients’ and relatives’ changing readiness to talk about the future and to adapt the conversation accordingly.

As the researchers worked through the conversations, the same pattern emerged again and again: patients and relatives repeatedly moved back and forth between openness, hesitation and withdrawal when talking about the future.

Patients and their relatives might want more information about how the illness could develop while at the same time setting limits on what they wanted to hear. For example, they might be open to discussing treatment options, symptoms and concerns but become more hesitant if the conversation moved too close to the question of how long they might live.

Small signals revealed the boundaries

These boundaries often revealed themselves through small cues.

A patient might change the subject, focus on practical matters or ask about their next blood test. This could be a sign that the patient needs to step back from the conversation for a while.

“When patients give off subtle signals, clinicians can use them to adapt to where patients are mentally at that moment and give them space to step back from the conversation for a while to look after themselves. If doctors and nurses simply keep pushing ahead, they risk overwhelming patients and their relatives with information they are not able to take in right then,” she says.

The clinicians actively used these cues to ensure that the conversation neither stalled nor crossed patients’ boundaries. The researchers suggest that the training may have supported this way of conducting the conversations.

The training and conversation guide help doctors and nurses in asking more specific questions about how much information patients and their relatives want about the future, what they hope for, what concerns them and what they can prepare for.

“Our study shows that interdisciplinary training, conversation guides and dedicated time for the conversation itself help doctors and nurses have these conversations, even when the prognosis is uncertain,” says Cæcilie Borregaard Myrhøj.

She adds that this continuing uncertainty is also why trying to convey everything about the future in a single conversation makes little sense.

“There is a need for several conversations as part of an ongoing process, in which patients, relatives and clinicians can return to the same questions as the disease changes. What matters to patients and their relatives may change over time, and what patients are ready to talk about also shifts,” she says.

Can these conversations improve the quality of life?

The qualitative study explored how the different parties communicate with one another, and the randomised study aims to determine whether the conversations also influence patients’ longer-term outcomes.

The qualitative study is therefore now being followed up by a larger ongoing randomised trial in which patients with serious blood disorders from across Denmark are being followed over a longer period.

The study is investigating whether this conversation-based approach can affect patients’ future outcomes if such conversations are introduced more systematically and at an earlier stage of treatment. The researchers are examining quality of life, treatment pathways, palliative care and other outcomes.

They are building on earlier research showing that patients who understand their illness and situation better often also enjoy a better quality of life. The key question, therefore, is whether these conversations can help develop this dual awareness over time, she says.

However, some time will elapse before the researchers have an answer. They still need to recruit the final participants for the study, which is expected to include around 400 patients.

In the conversations analysed so far, the researchers can already see the same processes that unfolded in the opening patient scenario: how patients move back and forth between hope, concern, openness and hesitation.

“Although we cannot say that patients develop dual awareness through the individual conversations we examined in the qualitative study, we can see that we are supporting the process that may lead to greater understanding of this dual awareness,” says Cæcilie Borregaard Myrhøj, continuing:

“Another important question is whether striking a balance between hope and realism can help patients and their relatives in making decisions that feel more meaningful and better aligned with their values and priorities while there is still time to act on them. In addition, the study suggests that uncertainty does not necessarily shut down the conversation about the future – it may be what keeps the conversation open.”