Expanding Our Knowledge: Why I’m starting a PhD and how you can join me

Shortly before my mother died, I wrote: “There are things I think I’ll want to remember about this time of ushering. It’s odd to find yourself in a place of so peacefully helping your mother to die. It’s like we’re all carefully ushering the boat along until it’s finally released off shore. And there’s something quite lovely about it, in some regards – the way we are capable of accompanying one another even as they leave this world, the way my father and I have formed a team around caring for her, the way it all simplifies at the end.”

How death enters our life, where we are in the story of those dying around us, who we are in their passage, determines how we will live alongside and beyond death. We make positive or negative meaning out of a death based off how the dying process unfolded, our role in it, and our relationship to the individual. Research shows this is particularly true for caregivers of dying children; who they are as their child dies determines how well they will survive after their death^[1]. And if a child experiences a “bad” death, their surviving caregivers are found to experience higher rates of mental and physical illness, higher rates of death by suicide, and overall lower life expectancies^[2].  The “goodness” of a dying experience is as much about the dying individual as it is about the survivors walking alongside the process, and that is particularly true for children and their caregivers, a portion of whose identity is already bound to their role in that child’s life and livelihood. 

I certainly understood this from experiencing my mother’s dying and death. Her dying and death are positively meaningful to me because I know: that her wishes for natural death at home amongst her family were fulfilled; that I was engaged in her care in her last months, weeks, and days and she knew so; that she and we were in complete, open awareness and acceptance of her time to die; and that my father and my siblings and I together transported her to the bed surrounded by windows surrounded by trees in her last hours as she requested. I understand my mother’s death as “good” and because of this, I can continue to survive her death well. 

But who determines what is bad and what is good? 

The good death is a concept created by the hospice movement, which was started in the United States and the United Kingdom for dying adults. The good death centers around a patient’s ability to openly discuss death, control their time, place, and experience of the dying process and eventual death, and to be relieved of complete suffering^[3]. Very little research has been completed on what the good death looks like for those outside of these Western, high-resource contexts, and even less has been completed on how the good death, in any context, looks for children. As far as the research currently extends, the good death for a child requires: caregivers to be actively engaged in their medical decision-making; relief from physical pain; occurrence at home or in a controlled, peaceful environment; and open discussion and acceptance of death with the child and caregivers in advance. In Western, high-resource contexts, surviving caregivers have found these factors critical for their ability to find meaning in and survive well their child’s death, an experience often conceptualized as the most painful through which one could live^[4]. 

However, palliative and hospice care for children are slowly developing outside of the US and UK and in resource-limited settings. As they develop, it’s critical we understand from the communities experiencing and surviving the death of a child what death means to them, how dying enters their lives, how the story of death and dying is told, who they need to be in the dying process, what surviving well includes, and what the good death looks like. 

Without this understanding, we could enforce Western cultural norms and values around death that do not resonate, are impossible to fulfill, and cause undue distress^[5]. What happens if a child dies in a health care context where medical professionals do not include patients or families in medical decisions, or where caregivers don’t feel confident, able, or welcome to do so? What happens if physical pain is not valued, experienced, understood, or managed in the same manner as it is in the United States? What happens in a culture where discussion of death is taboo, exceedingly distressing, or counter to religious beliefs, upon which communal values and identity are based? And what happens in landscapes where families live within tight structural constraints that limit or void them of choice and control over all aspects of their life, particularly their death? 

If we’re using a Western measuring stick, as I set out to do in my Master’s dissertation research in South Africa, we could argue that the good death for children is not occurring and cannot occur in these contexts. In South Africa, I found death was not discussed in advance, caregivers were given no opportunities to be part or aware of medical decision-making for their child, and very little of life was under any caregivers’ control^[6]. But that doesn’t necessarily mean that a good death for children isn’t possible there, or that surviving caregivers are unable to find positive meaning in their child’s death in order to survive well. I believe that in order for children’s hospice care to be effective in contexts outside of high-resource, Western settings, “effective” must be defined locally, death and its possible goodness must be conceptualized locally, and the pathways for its experience to be made meaningful for surviving caregivers must be articulated locally. 

So I’m getting a PhD to do just that, back in Kenya. 

In September 2020, I plan to start a PhD in Global Health at University College London under the supervision of medical anthropology and children’s palliative care experts Prof Audrey Prost and Prof Myra Bluebond-Langner. For this, I will complete 12 months of qualitative research in Kenya with the Kenya Hospice and Palliative Care Association and other collaborating partners. Taking this next, huge leap will allow me to continue to probe for critical, nuanced understandings of care for dying children, to amplify the perspectives of caregivers in resource-limited settings, and to carry research into practice for dying children and their survivors. Through and with this PhD, I seek to expand the knowledge base for end of life care for children in resource-limited settings so as to provide holistic, culturally appropriate care for children and their caregivers that reduces suffering, fosters dignity, and facilitates long-term resilience. 

If you’d like to follow along with me as I go, connect with me on social media or subscribe to my blog at the bottom of this post or on my home page. I plan to use these spaces to tell some stories and listen to more.

Thank you for joining me on this road. 

Callie 

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