Life, Death and the Stories in Between: Storytelling in Geriatric Medicine

One particular story has stuck with me. It is of an older gentleman on the vascular ward who kindly agreed to allow a peer and I to practise our peripheral vascular examination technique. The introduction could have gone better. We explained that the examination would involve having a look and feel of both his legs. 

“Leg!” he exclaimed.

We forgot to use our eyes. But now we noticed a photograph hanging on the wall of his room. 

“Who’s that in the photo, is it you and your wife?”

“We used to go on cruises, dancing. We loved dancing!”

“Will you try dancing once you’ve got your new leg?”

“Oh no, my dancing days are behind me now. I stopped dancing long ago when this leg started going bad. But I am going to get my new leg. My consultant said I’d normally be a bit old to have one, but I am determined to get up and about.”

We learned a lot about him that day, so much more than the fact that he only had one leg and no popliteal pulse. We heard of the role that dancing had had in his life, saw the joy it brought him as he reminisced and we understood how important to him was the prospect of getting his independence back. 

Looking back, I realise that he had hope.  He might have been biologically old and unable to do something he loved, but he was still looking to the future with determination and happiness. He was not ready to die. There was no formal conversation about ideas, concerns and expectations, but we learned what these were, simply by listening to him tell his story. 

All patients, especially those who make it onto a Care of the Elderly ward, have stories to tell. Unfortunately for patients in hospital, they have entered an environment that is unfamiliar, incredibly busy and full of noises that can stop these stories from being heard.

Developing strong relationships with patients, by engaging in their stories, is fundamental to patient centred care.¹ This model of medicine is known as narrative based medicine, and it allows doctors to see beyond the clinical facts and explore the personal journey and experiences of patients, communicating using a language that both patient and doctor can understand.^{1, 2} 

Patients can use their story to explore meaning and purpose, to share their emotion and burdens, which narrative gerontologists believe to be the biggest challenge for older patients. 

Failure to address these existential issues often results in loneliness and distress. Currently only 49 per cent of patients believe their spiritual needs are met.³

Building relationships with patients and listening to their stories in depth takes time, meaning that its importance can often be marginalised in a busy ward environment. However, with average acute admissions lasting around twelve days for older patients, there is likely to be many opportunities to listen to their stories.⁴ Two minutes is all that is needed for 80 per cent of patients to express their concerns.⁵

There are many proven benefits from this time investment. Studies report patients having better mental health, receiving earlier access to palliative care and being more likely to die in their preferred setting.⁶ The benefits are not only potential. Clinical studies have shown that measurable physiological parameters, such as spirometry, improve when patients record their experiences.²

Stories imitate life; each with a beginning, a middle and an end. Talking about the end, or even planning for it, is never easy. Thinking about death can seem like an alien concept in a society constantly striving to live longer. Whilst the advances that prolong life are to be celebrated, it can result in patients experiencing a more gradual decline in health that can be difficult to manage. ⁶

There has been an increased awareness of the importance of planning for end of life care, both among health care professionals and the general public. The End of Life Care Strategy expanded the role of palliative care and highlighted the link between advanced planning and the quality of end of life care.⁷ Charity campaigns such as Talk CPR have encouraged open discussions between GPs and patients, who might not have thought previously about a ‘Do Not Attempt Cardiopulmonary Resuscitation’ decision.⁸

Discussing end of life decisions and Advance Care Plans can fill both doctors and patients with apprehension. However, when approached through the patient’s story it can reduce anxiety and explore dying in the context of patient’s accomplishments, which are not diminished by death.^{3, 9, 10}

Patients who have advance care plans worry less about the future.6 Whether or not a patient wants to complete a legally binding advanced care directive, which only two per cent of the Welsh population currently have, recording any patient wishes in medical notes provides reassurance to families that a relative has ‘died well.’ ^{12, 13}

Patients and their families often find it difficult to initiate conversations about end of life care, though both would like address it.¹³ A role of the doctor can be to encourage patients to include family members in discussions, provide a safe space to explore worries and dispel myths. Combined, this provides much needed psychological support.¹⁴

It is important to remember that a person’s story does not end when they are unable to tell it. But as individuals within our society become more isolated, this is felt most strongly among the older people and it becomes increasingly more difficult for them to pass on their story. ¹⁵ Encouraging patients to record their story helps them to create a legacy for their family and generations to come. 

This idea was explored in a talk given at the Hay Festival of Literature and Arts, entitled, Before the End – Telling Your Story in Time. Author George Brinley Evans strongly advocated the importance of the written story as “when you write, it’s just you and the page; there are no conflicts of characters.” ¹⁶

A written version of a story can be used to shape how the writer is remembered. It improves patients’ sense of dignity and helps families with the bereavement process.³ It allows the continuation of bonds once the patient is gone and helps prepare families for the grieving process, through the development of a shared resilience.⁹ 

A powerful example of a patient's written story is the autobiography, When Breath Becomes Air, by Paul Kalanithi. It explores his transition from neurosurgeon to patient and details his experience with a terminal illness. Unfortunately, Paul died before completing his story. His dying wish was that his story be published. His wife, Lucy, completed the manuscript and described the book as a way of ‘grieving and honouring him.’ ¹⁶ The vulnerability and honesty displayed throughout the book is very touching and encourages self-reflection. The doctor as a patient narrative also grants insight into how his understanding of the doctor role as a caregiver changed through his personal experience.²

The most important role of a story exchange is that it reminds us that we are treating people. As geriatric medicine continues to manage the health of the ageing population, with services and resources under pressure, it must not forget that each patient’s experience of health is individual. Engaging in patient stories, and highlighting their importance within medicine, improves the quality of care and eases end of life decision making. Encouraging patients to share and record their story, before death makes this impossible, prepares both them and their family for the process and helps relieve some of the difficulty we all face when talking about dying.

Samuel Willis
Fourth Year medical student in Cardiff University Medical School