Genetic counselors often walk with families through some of the hardest moments of their life. In this month’s blog post, Kimmie Widmeyer, shares insight on something we have probably all felt but don’t always talk about – provider grief.
I am a full time inpatient pediatric genetic counselor. I am often meeting families during their worst moments, entering their world at a time where they don’t know what to expect, and they certainly aren’t expecting us. I have witnessed a level of crisis, grief, death, and dying I wasn’t physically or mentally prepared for when starting this role. For these reasons, I would like to discuss one of my biggest obstacles: provider grief.
At first, I had imposter syndrome. Why me? Why am I allowed to be in this space with this family? Am I the best person to speak with this family? How can I support this person/family? Am I an imposter for having a grief reaction to a situation that another family is experiencing? I found myself feeling anxiety and inadequacies as I furthered my role; wondering if I was doing all I could to support these families. There were a few care team meetings I attended where I shed tears as the team was telling a family their child was dying and there was nothing further they could do. That was the moment I knew I needed support. I needed help to process emotionally difficult cases. I am sharing this because if you have experienced anything similar inpatient or outpatient – you are not alone.
So what have I learned? I have learned that bad things happen and even though you can’t change them, you can provide a safe and supporting space for families to process what is happening. It’s okay to be sad. It’s okay to share that moment with the family. We are human.
Very little research has investigated genetics professionals’ experience with grief and loss (Gettig 2010, Geller et al 2010). These studies point out that many genetic counselors experience clinical interactions with patients and families who are experiencing grief, loss, and/or death. Many genetic counselors reported discomfort with grief and loss, and this correlated with clinician distress and burnout.
Supporting Ourselves to Support Others
I have learned self-care, counseling, and colleagues can help. I attended a 2 day workshop called “Supporting Ourselves and Others in Difficulty: Facing, Feeling, and Grounding”. This was the beginning of my journey to self-realization that my work affected me. At that time, I found a group of inpatient genetic counselors with similar experiences; we now meet once a month as a peer support group. We discuss many things, but often we discuss cases in which we had an intense grief reaction to providing life-limiting diagnoses to families, seeing patients coding and families crying, or learning that a patient has passed away. This group has provided comfort, support, and validation. I have found that I am not alone.
I have learned there is support through my institution and I am not the only provider who experiences trauma. I have found collegial help through interacting with palliative care physicians, social work, and chaplain services. There are resources out there, and I have provided some below.
So, I leave you with questions. How are we caring for ourselves? Are we acknowledging these experiences may create a grief reaction in ourselves as providers? Are we doing enough to provide support to ourselves and to our colleagues? Do you know what resources are within your own institutions to support you as a healthcare provider?
Some of you may have figured this out long before I did. While I am still working towards managing provider grief, I have been able to continue in what has been a fulfilling genetic counseling position. I love working in the inpatient setting and being allowed to share a space with families during their most difficult times. Although still challenging, I have found myself better equipped to process grief since utilizing my resources.
- Humphrey: “Talking and working with dying patient: True grief and loss” – Written by a palliative care physician <https://academic.oup.com/edited-volume/28374/chapter/215265321>
- Bernhardt B et al 2010 Genet Med. “What keeps you up at night? Genetics professionals’ distressing experience in patient care https://pubmed.ncbi.nlm.nih.gov/20386316/>
- (Regier et al 2019) – let me get you this link.
- “We must also care for ourselves and for each other. Whether it is acknowledging that we as providers have “lost” a patient, or creating a place or time to remember them, or remembering a patient’s name when others have forgotten, we live in the dichotomy of grief and joy for a life well lived.”