Reflective piece
It’s always difficult when friends or family members become ill, although as doctors it can be difficult in a more complex way. There is a fine line between using our work-related knowledge to help navigate a difficult situation and taking too much of a role in the treatment or decision-making process. How much action is considered advocating for a loved one, and when should we step back and acknowledge that we are too involved? It is a common dilemma, and so we are taught right from our student days to refrain from treating ourselves or family members. We are taught to turn off our ‘diagnostic hat’ in social situations and continue to provide the support and empathy that our loved ones need. Some years ago now, I stuck to this advice and tried not to meddle.
My grandmother lived interstate, although I was able to spend a lot of time with her after the passing of her husband when I stayed with her for a few weeks to provide support through a heartbreaking time. On our daily outings she would mention medical issues like her knee pain, side effects from medications and trouble sleeping. She told me these things in the way that family members tell each other, and I dutifully listened and gave the usual advice that she should talk to her doctor about her symptoms. Despite these few complaints, she was otherwise well and I assumed that she would be around for years to come.
A few months later, I heard about a fainting episode that she had in church. She had been taken to the local emergency department and discharged a few hours later after a routine work-up was normal. They determined that it was a simple faint caused by the day’s warm weather and the church’s lack of air conditioning. I was concerned that this was not her first ‘faint’, and discussed this with my sister and her husband. They agreed that it was unusual, and that there might be an underlying cardiac issue. I knew that my grandmother was a very trusting and respectful person and would never question the doctors involved in her care. I spent weeks worrying about the possibility that she had an arrhythmia, trying to decide whether recommending she insist on seeing a cardiologist would be advocating for her or whether it would be overstepping. I was only a junior doctor after all, and eventually I decided to gently suggest to my grandmother that she ask her general practitioner about a referral.
Trying to maintain good boundaries, I never did ask about it again. I know now that she did not end up seeing a cardiologist. Over the next year, she began finding it harder to manage at home, so had a trial of living in residential aged care. Those first few weeks were hard for my grandmother because she found the loss of independence and privacy confronting. One night, in this new and scary place, my family was told that she woke up suddenly unable to breathe and called for a nurse. By the time the ambulance arrived, she was already dead.
I cannot help but wonder whether we should have pressed more for a cardiology review, whether a pacemaker and some medication changes could have prevented such an end. There are nights where I still lie awake at night, haunted by this question. I sometimes feel guilty when I think of her and feel that I let her down. In some ways though, I know that it is how she would have wanted her life to end – definitive.
My grandmother once joked that my sister, who has a habit of keeping cut flowers until they are well and truly brown, should never be the one to decide when to turn off her life support. At the time it struck me as such a morbid joke, but that was one of the things I loved about her. She was so polite and demure, but would occasionally come out with a shockingly direct comment that would be endlessly amusing if you had a thick-enough skin. As much as I wish her death was as peaceful as it was fast, I am glad that she was not at home alone when it happened. I am so grateful for the nurses that could be there in her last moments, and can only hope that she felt safe with them there.
In the three years since my grandmother’s passing, I’ve slowly accepted my decisions at the time. I remember her as the bright flower that she was, never wilting. I know that as a woman with a strong faith she would have trusted that however she ended up going, it was the way it was meant to be. Although for me, the balance between advocating for a loved one’s health and trusting the decisions of their treating doctors remains a delicate one.