How can one understand what it feels like to confront the expected death of a child? Care givers of children with limited life-spans face tremendous stressors. As a researcher of paediatric palliative care, my goal is to identify those stressors. My hope is that this will lead to professionals devising solutions and ultimately helping families cope.
Coming into the field, I anticipated the worse. I worried that families would not want to participate in my research. I worried that I might not be able to carry research participants through the telling of their stories. I worried that I might burst into tears when I saw them upset, damaging the credibility and professionalism of my research.
Instead of having to confront those fears, I faced the opposite. I realised that I was privileged. Rather than a caretaker, I felt like a spoilt child. I was given the opportunity to enter the homes and hearts of incredibly resilient people. My participants went out of their way to alter their schedules, make welcoming cups of tea and provide directions back to where I had come from. They allowed me, a foreign stranger armed with an audio recorder and list of questions, into their lives.
They did not want my help; they wanted to help. They knew that talking to me was going to be difficult. They knew that bringing up memories of tough times, challenges and regrets might hurt them. However, it was worth it because they could see the impact it might make on others.
The topic of my research: communicating with children about death is an emotionally taxing one. Most bereaved parents in a study exploring participation volunteered to share information about their child's death for altruistic reasons. However, the researchers found that the parents described their participation as personally beneficial as well. Communicating irreversible regrets does not seem intuitively personally beneficial, but has the potential to benefit many in the community.
As an adolescent volunteer at a children's hospice, I remember hearing nurses sadly whisper to each other, asking why some parents did not abort children with diagnosis that only led to a life of suffering and tears. I pondered that question for years. My research enabled me to find the answer.
So why do mothers choose not to terminate their pregnancies of children expected to only live short, painful lives? Sometimes, love trumps pain. Families who participated in my research did so for the same reason that they did not give up hope of enabling their children to live and feel love: ‘Gently the paediatrician spoke, “If a baby can know stress in utero then surely it can know love. Liam knew that he was loved!” All the fighting, all the tears and the entire roller-coaster ride had been worth it just for my tiny son to know that he was loved’. The retelling of a story conjures up memories of heartache. One cannot feel this without knowing that first, there was love. Through the pain and frustration of caring for a very sick child or children, they saw my research as one way to make others’ lives just a little easier. They were grateful for the support people who had helped their families and wanted to give back to their communities.
One of the final questions I ask care givers was for advice on how a researcher should approach families like theirs. Instead of criticising my research, most offered thanks. One mother responded: ‘Just what you're doing is brilliant … I think it's helping my kids, too … they're helping out’. The participants were grateful for the opportunity to show selfless regard for the well-being of others – this is true altruism.
Families volunteer despite all the other things going on in their difficult lives: ‘They're balancing their child's condition and the change of their lives with everything else going on … It's not like life is just that. You know, you've still got everything else. I have no idea how other people can manage … it's just huge! … Man, it's too much. It's way too much.’ Yet caregivers persist in their optimism. They juggle the emotions and practical tasks of caring for a child with a life sentence with financial stressors, caring for other family members and occupational demands.
Their desire to help trumps everything else. The care givers I spoke with just wanted to make a difference. They opened up their regrets in order to prevent them from happening to others. They hope that the research will help families by empowering them with knowledge. They want to convey a message to other parents of how they ‘could have done it better’.
Researching paediatric palliative care is an extremely humbling occupation. Families with irreversible regrets let me into their homes to show me their open wounds. The only purpose of our meeting is to prevent families of the future from making uninformed choices. This work makes me wonder why I think twice about admitting my mistakes.
So how do they do it? What is in it for them? ‘Why I'm telling you this is to find significance … There's no purpose to [losing] a child …You could go into a dark hole and never return … that's why, when I heard about what you're doing, I said … yeah, I'd like to really talk to you … If we can help other families or give them … something, you know, that's real that other families have found helps, that they can hold onto … it just gives people ideas about “What can we do that's going to be proactive?” ‘
I wake up every morning in wonder and awe. My dilemma of how to deliver the news of a poor mark to a student in one of my labs becomes insignificant. The issue of how to squeeze a phone call to my parents between a coffee date and an interview seems meaningless. I am not responsible for terminally ill children, but I am responsible for rewarding their altruistic families. As researchers, we are responsible for enabling the altruism of our participants. We are the privileged ones.