Dayna Lee-Baggley calls for improved training for healthcare providers in providing care to patients at the end-of-life.

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On June 20, 2016, Julianna, a 5-year-old girl, died from an incurable disease. Julianna made international headlines because her parents and doctors supported her decision to choose “heaven” instead of “hospital” if she had a potentially fatal complication. Julianna’s mom, Michelle Moon, recounts her conversation with Julianna about this decision on her blog.

Michelle reports that she asked Julianna if she’d like to stay home or go to the hospital if she got sick again. She explained to her daughter that choosing to stay home could mean that she would go to heaven without her family. In response, Julianna said she understood and that she believed God would take care of her.

Julianna’s story raises a number of ethical issues regarding the ability of children to make end-of-life decisions. These issues have been heavily discussed in the media. However, less often discussed is the ability of adults to make such end-of-life decisions. This ability is often presumed. For example, in Elizabeth Cohen’s special CNN report on Julianna, she wrote “If Julianna were an adult, there would be no debate about her case: She would get to decide when to say ‘enough’ to medical care and be allowed to die.” In spite of Cohen’s assertion that there would be “no debate” about adult end-of-life decision-making, research and clinical experience suggest that end-of-life decisions are not so straightforward for adults.

Most people want a peaceful death at home surrounded by their family. And yet, the majority of us die in hospital after tens of thousands of healthcare dollars have been spent to extend our life by only a few months. Research suggests that this extended life is often poor in quality. Interestingly, the desire to die at home is also true of healthcare providers. For example, when physicians are faced with a terminal illness they rarely engage in the type of life-extending medical interventions that they so often recommend to their patients. Instead, when possible, physicians choose to spend time with their family and die at home.

How can we make sense of the discrepancy between what healthcare providers recommend for their patients and what they choose for themselves at the end-of-life? Having spent many years in the healthcare setting, I think healthcare providers have a “fix-it urge;” a strong desire to help their patients. This is an admirable quality that allows them to face difficult and challenging working conditions on a daily basis. After all, how many of us have to worry about people dying when we go to work. Healthcare providers willingly take on this challenging job on a daily basis. They routinely face sick, suffering, and dying individuals. Often, they are present with individuals who are at the worse points in their lives.

But the “fix-it urge” can have maladaptive outcomes, as when it impels healthcare providers to focus on quantity of life (and continue providing life-extending treatment) when they should be focusing on quality of life. For example, in discussing this topic with my colleagues, one healthcare provider described a situation in which he knew that proceeding with more tests and procedures was not really indicated. Yet, he reported, “I felt like I had to do something to help him.” Healthcare providers often view “help” as keeping individuals alive for longer rather than considering their quality of life. Unfortunately, healthcare providers are rarely taught about how to deal with the complex emotions around the end-of-life – both their own emotions and those of their patients.

End-of-life decision-making deserves further research in order to better understand the forces within the healthcare system that lead to unfavourable outcomes for providers and patients. Only then will we be able to offer all patients the option that little Julianna had.

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Dayna Lee-Baggley is a Registered Psychologist at the Nova Scotia Health Authority, Central Zone and an Assistant Professor in the Faculty of Medicine at Dalhousie University in Halifax, Nova Scotia.