What I Learnt About End-of-Life Care

Jack was admitted for complications of his cancer, and his prognosis was terminal. The doctor in charge of his care asked me to take his history and provide a management plan for his main concerns.

The first encounter

As soon as I engaged with Jack, I felt uncomfortable. I was confronted by his intractable vomiting and withered appearance. I could feel that “deer in the headlights” look come over my face. But despite his obvious suffering, Jack cared about my education as a future doctor. He insisted on guiding me towards asking the right questions about his symptoms.

We devised a management plan together. It was well constructed, and I felt confident that it ticked all the right boxes about abdominal complaints. But I knew I had skipped over the most important topic in our encounter. And I knew I was enormously uneasy about it. As an otherwise total stranger, I felt that asking about Jack's end-of-life (EOL) priorities was totally beyond my level.  Furthermore, even if it wasn’t, when I left the room I realised I didn’t even have the faintest clue about how to start that kind of conversation.

The next day, I discovered that Jack had died overnight. I began to feel an overwhelming sense of guilt. By not knowing what he really wanted from his care at the end, I felt I had failed him. What should I have said?

Understanding EOL priorities

Dealing with death is an increasingly fundamental part of contemporary medicine. In 2013, 81% of all deaths in Australia were of people aged 65 and over. As the population of this age group grows, the number of people dying per year is expected to substantially increase. Unlike in the past, deaths will be more commonly the result of gradual declines in function, brought about by the effects of chronic and progressive diseases.¹ Almost every doctor is, and will continue to be, faced with more patients who decline slowly and need to have their EOL priorities discussed.

I decided to work out how I could get better at discussing EOL priorities with patients. I searched for textbooks and teachings, and found that a number of education strategies have been used to help students develop this critical skill. One is to teach students about EOL care through communication tasks with actors playing patients.² Others have included greater exposure to palliative care specialists early in clinical training, or by scheduling dedicated times for debriefing and feedback about EOL issues with clinical mentors.^3,4

Over the year, I wondered if more education on EOL care was what I really needed, and whether it would have made much difference to the difficulty I experienced when talking to Jack. After seeing several doctors approach and respond to patients like Jack in better ways than I had, I realised that my initial experience reflected more than a lack of knowledge about what to ask or how to ask it.  

Experience is the key

While doctors who were good at talking about EOL priorities didn’t all say the same thing, they all had a similar underlying perspective guiding them. Through years of experience, they had learned that death was as much a part of medicine as cure. The best doctors were able to enter a patient’s room and acknowledge deep sorrow about dying, but also foster calm optimism about finding ways to meet their patient’s EOL priorities. When they left, they would respectfully disengage and seamlessly move to the next patient.

At the end of my first year in hospitals, I was far from developing a perspective as insightful as those held by senior doctors around me. However, I realised that engaging with Jack was the first step in the right direction. No matter how many textbooks I read or tutorials I attended, time and experience was the key. The hours that count most are those spent grappling with the tension between what can and what should be offered to patients at the end of life. I had not experienced them yet, but I knew they would come.

As the need for good palliative care increases, medical schools may invest more in teaching about developing the particular skills needed to carefully manage EOL priorities, and students would likely reap many meaningful benefits. More importantly, however, students should be encouraged to seek out difficult, real experiences that require them to engage with EOL issues. The resulting growth of insightful perspectives about death in medicine will ensure that incoming generations of doctors are equipped to respond to the most important needs of our future communities.

Christopher Lemon (MDA National Member)
Junior Medical Officer
St Vincent's Hospital, NSW

 You can follow Christopher on Twitter @Chris_Lemon_

1. Australian Institute of Health and Welfare 2016. Australia’s Health 2016. Australia’s health series no. 15. Cat. No. AUS 199. Canberra: AIHW, 2016.
2. Bloomfield JG, O'Nell B, & Gillett K. Enhancing Student Communication During End-of-Life Care: A Pilot Study. Palliat Support Care 2015;13:1651-1661.
3. Gillett K, O'Neill B, & Bloomfield JG. Factors Influencing the Development of End-of-Life Communication Skills: A Focus Group Study of Nursing and Medical Students. Nurse Educ Today 2016;36:395-400.
4. Kelly E, & Nisker J. Medical Students' First Clinical Experiences of Death. Med Educ 2010;44(4):421-428.