Always a Parent

I have managed to successfully run a household, raise 2 children of my own, and not burn myself on a daily basis over the last 30 years. However, on a recent trip home to visit my mom, she regularly reminded me to use the good oven mitts so I would not burn myself when taking things out of the oven. I was reminded that no matter how old we are, or how old our children are, we are always a parent—and constantly looking out for the safety and well-being of our children. It reminded me of some lessons learned while doing my PhD work that continue to inform my research and teaching about supporting families receiving palliative care. My PhD research included a literature review and focus groups with bereaved parents as the basis for development of an instrument to assess the quality of end-of-life care provided to children and their families.1 At the same time as I was doing this work, my great-great-great aunt and grandma, who were both well into their 90s, had 70-year-old sons who each had cancer. Both sons were not married at the time and did not have children of their own. I spoke with both mothers regularly and was always struck by how similar their comments and concerns were to what I was hearing from the parents of young children in my research, particularly as both sons neared the end of their lives. My grandma talked about my uncle coming over daily and napping on her couch. She would just sit there watching and willing him to keep breathing. She asked whether it was possible that he might just die there on her couch. She received no formal support and no information on what to expect or what dying might look like. A few weeks after my uncle died (thankfully not on his mother’s couch), my grandma had a myocardial infarction. Her doctor said that she had literally “blown a hole in her heart” developing a new ventricular septal defect—apparently a rare complication of myocardial infarctions.2 She amazingly survived this episode, and in the weeks afterward, I was able to share some research with her that I often cited in my own work. In a series of studies conducted by Li and colleagues,3–6 parents who experienced the death of a child (<18 years old) were at a higher risk of myocardial infarction, cancer, multiple sclerosis, and mortality in the years after the death than nonbereaved parents. I told my grandma that experiencing the death of a child—even a 70-year-old one—has a physical impact on the body and that grieving parents are at a higher risk for all sorts of things, including heart attacks. Her response? “Well, that explains a lot then doesn’t it?!” She seemed comforted to know that how she was feeling and what she was experiencing was “normal.” I continue to share the results of research that links the experience of grieving the death of a child to long-term health impacts in my teaching about pediatric palliative care. Often, I am teaching an interprofessional group of health professionals who may not have a particular interest in pediatrics. While I am extrapolating from Li and colleagues' research because they focused on deaths during childhood, I encourage students to think about parents regardless of the patient’s or parent’s age. I share my grandma’s story and remind them that even a 70- or 80-year-old patient may have a parent who is greatly impacted by the illness. They may also provide care to a 90- or 100-year-old patient who is grieving the death of an adult child and experiencing the health impacts. Taking time to find out who is in a family across generations and considering who may be impacted by illness can provide important contextual details to guide delivery of high-quality care.

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