PODIUM – Learning to communicate with dying patients – with Dr. Jane Turner
Dr Jane Turner
Dr Jane Turner, senior lecturer in psychiatry (University of Queensland, Australia), works with multidisciplinary teams in oncology. With colleagues, she devised an educational manual to help professionals respond to dying patients with dependent children (see EJC 2008 doi: 10.1016/jejca.2008.02.045 and editorial comment on doi:10.1016/j.ejca.2008.05.009).
Why are professionals’ feelings routinely ignored?
We have developed a culture in which students learn that being strong is the way to get through. When you scratch the surface, almost everyone would admit that it’s difficult, but students worry that they will not be seen as professional if they get upset and they go to great lengths to avoid attachment to dying patients.
Professionals feel overwhelmed, helpless, and afraid of upsetting patients. They are trained to fix and cure, and find it difficult when this is not possible. They often focus on practical activities such as checking chemotherapy doses rather than providing emotional support in a medical culture where this is not encouraged.
How do nurses and clinicians differ?
They are similar in their capacity to communicate, and struggle with the same issues. Until recently, nurses tended to be female and it was assumed they would therefore know instinctively how to offer emotional support, which was not always justified. Patients make excuses for doctors, but may expect psychosocial support from nurses; nurses themselves expect to give it, but often receive little training.
How does training help?
It allows us to challenge common responses. Professionals need to reflect on why it is so difficult to give this support, and how the issues resonate with their own experiences of loss and grief.
Training can lead to a dramatic shift in nurses’ ability to provide empathetic communication and support. One scenario we use involves a single mother with advanced breast cancer. She keeps shouting at her 16 year old daughter who won’t help at home. Pre-training, nurses are pragmatic and task-focussed, discussing practical solutions to getting help at home. Post-training, there is almost none of that. Nurses say that the daughter is scared, frightened her mother will die and they urge the patient to negotiate with her daughter. The change is dramatic.
Nurses are more confident after training, and more likely to encourage patients to sort things out themselves. Pre-training they would assume that they had to “fix it” for the patient. .
Would clinicians benefit in the same way?
Yes. Clinicians are respectful of patients, and can be helped by knowing the words to say. Our society downplays regret and grief; but when a patient says they regret something, answering ‘That’s tough. Really hard’ rather than ‘Of course you did the right thing’ allows them to talk.
Listening is an intervention. If I can be with a patient who is distressed, and not rush to reassure them, I am modelling to them that I can bear the pain, and maybe they can too.
Reassurance is unhelpful?
It is natural to want to reassure, but you don’t have to fix patients’ feelings – they don’t want you to – they just want their feelings validated. I see a lot of people with early cancer and a good prognosis, who are worried they might die. When I say I guess they could, they are relieved. Everyone has been telling them they will be fine, and it has closed down all discussion.
Parents tend to reassure. When a 10 year old asked whether his (dying) mother was going to be alright, his father told him that she would be fine because he didn’t want to take away the child’s hope. But it’s possible to say both. He could say that he wants her to get better but that sometimes he also gets scared. Using the word ‘if’ keeps situations hypothetical. Professionals can say to parents: ‘Let’s hope you do fabulously and surprise us all. But if that doesn’t happen, what would your family need?’ The ‘if’ liberates them to think about it.
How can children be helped?
They need to understand that bad things happen by chance – not because of something they did. It’s also good for the surviving parent to help them develop the capacity to relate to the dead parent.
Children do not necessarily suffer irreparable damage when they lose a parent. The literature on resilience is exciting. Children cope with enormous adversity and their loss is modified by good relationships with the surviving parent and with friends, having a particular talent recognised, and so on.
Assumptions are always being challenged?
People frame things differently. A patient with 3 young children had a long and painful death with her husband sitting by her bed. I said to him, ‘That must have been difficult’, but he said that her struggle was her final gift to her family, showing them her desire to be with them.
We don’t know how people will react. Glen Gabbard said, ‘When in doubt, act human’. It’s excellent advice.