Facing the Future: discussing prognosis with patients at the end of life

We all have patients who stay with us long after they have passed away. Vera is one of those patients to me. She was an amazing, stoical woman who had stage 4 endometrial cancer when I took over as her named GP. She had done incredibly well in the face of extensive surgery, chemo and radiotherapy, but her latest oncology letters were clear; her disease had spread and there were simply no further treatments left to try and slow it. Her prognosis was perhaps a few months at best, she had been referred to palliative care and was booked in with me to discuss pain relief. 

What followed was a consultation that left me baffled and uneasy. Vera quickly denied pain was an issue, and more importantly, she was adamant she would be spending next summer in France. She wanted to share her plans for her granddaughter’s milestone birthday next year far more than she wanted to discuss advanced care planning. I knew this flew directly in the face of the information from her oncologists, and the discussions I had had with her previously. I worried immensely about her readiness for what lay ahead and felt like I had failed to support her in preparing for that. 

Vera was also the patient my thoughts immediately turned to after reading the recent NEJM practice pointer ‘Navigating and Communicating about Serious Illness and End of Life. In this paper, the authors discuss the common clinical problem of ‘unrealistic hopefulness,’ a phrase that summed up Vera’s response when we tried to discuss her prognosis. 

We all know that these kind of conversations about prognosis can be difficult and confusing, both for clinicians and patients. So how do we get them right? And how can we best support patients who, despite many conversations, are struggling to come to terms with their prognosis? 

Firstly, the authors remind us of the importance of time. They describe ‘prognostic awareness’ as an iterative process, requiring several conversations over months to years before the end of life. They reassure us that patients commonly oscillate between intense hopefulness and more realistic aspirations. Over time, these oscillations tend to be less wide, and the discussions can become more open and realistic. We can therefore view extreme hopefulness as a normal part of coming to terms with a poor or uncertain prognosis. 

Secondly, patients need to understand the likely course of their illness both cognitively and emotionally. Of course, accurate information is important, but so is responding to the emotions generated by the conversation. Patients need to grieve, reimagine their future and manage their fear. Time, and a trusting relationship to explore these hopes and worries, are key. By showing empathy, normalising their reactions and being willing to explore their sadness, we can help our patients make progress toward understanding and accepting their prognosis. As our patients’ awareness that life may be short increases, we can also explore what matters most to them as they approach the end of life. 

Finally, the authors touch on the inevitable uncertainty surrounding prognosis. Systematic review evidence suggests that clinicians’ predictions about prognosis are frequently inaccurate. Average survival times will be wrong by definition for the vast majority, who fall either to the left or right of the median (as described eloquently here). Clinicians also tend to overestimate how long patients have left, a classic example of optimism bias in action. However, this uncertainty about prognosis, and risk of ‘getting it wrong’, should not be an excuse for us to ignore or sidestep patients’ questions about how long they have left. We need to be pragmatic, respond with our best understanding, and acknowledge uncertainty.

This Clinical Medicine article provides helpful recommendations and useful phrases to consider when discussing prognosis, summarised in the table below. 

Sadly, Vera didn’t make it back to France, but she died where she wanted, at home, surrounded by her family. She remained optimistic until the end, teaching me an important lesson about the value of hope. I know I didn’t always get those challenging conversations ‘right’, but we kept going, and I’d like to think they made a difference. Remembering Vera reminds me that supporting patients at the end of their lives is one of the most demanding, challenging, and rewarding parts of our roles in General Practice. 

If you want to enhance your skills, knowledge and confidence in this area, please do join us for the brand-new Hot Topics Palliative and End of Life Care Course. Shiv and I have a great morning of case-based learning and discussion planned for you on 27^th June and we hope to see you then, or on demand.