As the Australian populations ages, more Australians get admitted to hospital with increasingly complex needs. Many of these patients will sadly die after hospital admission. Whether they reach the end of their life in ICU, in palliative care or another unit, doctors and other health workers will need to, at some point, have discussions about death and dying with patients and their family. These discussions can be challenging but need to be taken seriously as they have a defining impact on reaching goals of care, avoiding unnecessary treatment, and following the wishes of the patient.

Training and experience

Professor Imogen Mitchell has been working on the topic of end-of-life care for several years, including a recent research project with researchers from the ANU, Professor Di Slade and Dr Brett Scholz on end-of-life discussions in ICU. She stresses the importance of preparing doctors, especially residents and younger professionals, for having end-of-life discussions.

"During our research, we have recognised that having end-of-life or goals of care communications is firstly very difficult, and secondly often happens out of regular hours. Because of this, these discussions are often conducted by junior medical staff who probably don't have the experience to have those conversations, which can be difficult for the families and patients involved," says Professor Mitchell.

She says that while formal training can be a factor, most junior staff would have had more communications training during their studies than senior staff. However, she argues that "until they get the experience, it's very hard to do one-off training and fully expect to have those very nuanced conversations".

She insists on the importance of role-model mentorship opportunities so that junior staff can attend actual end-of-life goals conversations and learn from more experienced colleagues. Learnings should include studying non-verbal communication and the cues to look for when talking to patients and families.

A conversation framework

In their most recent research, Professors Mitchell and Slade have been analysing end of life care conversations undertaken in ICU, aiming to build a framework of how end-of-life discussions should be conducted to achieve a satisfying outcome for all. Using this framework, they hope to create more meaningful and impactful training.

Working in an intensive care unit, Professor Mitchell says that most of her interactions on end-of-life care are with families as the patients are often unconscious. When asked to give her main tips on how to initiate the conversation, she says that one of the essential things before going into the room is to rehearse and know as much as possible about the family's links to the patient.

"You have to be very clear about what relationships and tensions exist within the room itself as families can be quite fragmented these days. It's important to establish what you are walking into and to acknowledge that when you are communicating."

But what if you encounter strong resistance? In that case, Professor Mitchell suggests it may be best to acknowledge that discussions cannot continue, as pursuing them regardless may be counterproductive.

A good part of preparing the conversation, especially when proposing to withdraw treatment that's no longer helping and moving to comfort care only, is to use easy-to-understand language. For example, saying the medical team has "done all these things, but what they are doing is no longer helping, so when we do take away these measures, there will be a consequence".

"It's about getting the language in a way that allows them to accept that it's ok to take away interventions that are no longer benefitting the patient" she says.

Before the ICU – The importance of advance care planning

While training and coaching of younger health workers are part of the solution to improve end-of-life conversations in ICU, Professor Mitchell is adamant that having these conversations as a family or with other loved ones as we are still healthy is crucial.

"It's all very well training people in the acute care sector, but this is such a stressful environment. That (end-of-life) conversation should have happened years before. Of course, wishes and preferences will evolve through your life, but we need to be comfortable with phrasing the things that are going to be important to us at the end of our journey."

"There will have to be some national push on why these conversations are so important, putting the statistics out there that people are probably not dying in the way they would have wanted that journey to look like."

Things to think about when having an end-of-life conversation with a patient’s family

1. Understand the family dynamics before meeting with a family/patient
2. Meet with the patient/family with either the bedside nurse and or social worker
3. Ensure everyone is introduced
4. Open the conversation with a clear outline of what the conversation is about
5. A desire for a spokesman to recount their own understanding of the story
6. Re tell the story from the beginning i.e. when the patient first got sick
7. Reach the end of the story and an outline of what you think the next steps are
8. Pause if anyone is not understanding or seems concerned
9. Answer questions if they are raised
10. Summarise where you are up and next steps, and allow for more questions.