Medical stories about our experiences of grief and loss

During the COVID-19 pandemic I’ve heard extraordinary examples from GPs across the UK about their experiences of patient loss. I am looking to collate shared individual medical stories about our experiences of grief and loss as told by you.

First, there is massive public support and sympathy for health care workers in their fight against the worst effects of the epidemic – dying, death, and grief.

Secondly, the exposure to dying, death, and grief of our patients has increased considerably since the arrival of the pandemic. Not only must we manage our grief from the loss of our own patients but also the concurrent grief of colleagues in the same situation. Furthermore, we find ourselves supporting more families of more patients who have died.*

Finally, it is well known that grief in professional circles is difficult to share openly. And yet it is difficult to gain understanding of how others feel, what they are thinking, how similar or dissimilar their experiences are to our own, unless these experiences are widely shared. A crucial part of support and comfort is knowing that your experiences are understood and shared. This is the foundation stone of genuine empathy.

Hence the aim of this edited collection of personal stories is to supply to our colleagues in medicine and healthcare more widely a narrative resource that would build both support and empathy for our colleagues in the UK and the rest of the world. This volume would be a key resource in helping all our medical and other healthcare colleagues make sense of their experiences of grief and loss in the everyday world of their professional practice.

If you share this aim, I am asking that you consider contributing a personal account to this book and potentially related publications. With a limit of 1000 words, I am asking you to describe your own mixture of personal and professional reactions to patient and colleague death, loss and grief. This may be a reflection upon a single case, or of several, and should be as frank and as honest as you are able to be in your personal storytelling. They can be from any time and are not limited to experiences during COVID-19. You may choose to be anonymous, to use a ‘pen name’, or to use your own name. All patient and colleague information should be anonymised.

All submissions will be gratefully accepted. The final acceptance will depend on quality, number, and suitability of the individual submissions eventually received. I provide one story already submitted by a colleague as an example for you to consider. If you have any questions about style or of general guidance please do write to me.

Thank you so much for considering to be a part of this important contribution to our professional wellbeing.

The Daffodil Standards

RCGP and Marie Curie UK General Practice Core Standards for Advanced Serious Illness and End of Life Care. The Daffodil Standards are a blend of quality statements, evidence-based tools, reflective learning exercises and quality improvement steps.

Further support

Marie Curie has a Support Line - 0800 090 2309 for practical information and emotional support, whatever your situation and Bereavement Support up to 6 sessions of telephone bereavement support. 

The NHS also has useful information sites for both advice and action following grief and bereavement.

BMA offers more general Wellbeing support services - Open to all doctors and medical students whether BMA members or not, plus their partners and dependents and is staffed by professional telephone counsellors -  0330 123 1245.

Example story: Learning to care

“And how are you coping with all this?’ he asked, looking deep into my eyes which immediately welled with tears. “…people don’t usually ask the carer.” At that moment I learnt the importance of acknowledging the stress of being the supporter/wife/partner/carer of someone who was dying. The enquirer, my father, a GP with many decades of experience who left Primary Care to become the Medical Director of Hospice in the early 90s. The person dying was my husband and I was a GP with a lot to learn.

I learnt how I could become invisible within a hospital environment when I was perceived as a wife and not a doctor.

I learnt how belittling it can be when a consultant breaks off a conversation detailing the findings biopsy in order to take a phone call.

I learnt the psychological trauma of having a face mask made in preparation for head and neck radiotherapy.

I learnt how tired you get when you visit somebody in hospital every day after work.

I learnt how to function on autopilot when you have a busy day job and how to put on a cheerful face and smile when your life is falling apart.

I learnt how to convert a front room into a bedroom and how to erect a hospital bed.

I learnt how the anger and frustration at the delay of a change in syringe driver can be seared into the memory and will never be forgotten or forgiven and how the kindness of a district nurse can fill the day with sunshine.

I learned how important it is to get a good night’s sleep enabled by a night sitter in order to carry on caring during the day.

I learnt how much laughter can be generated from planning a funeral, ‘Smoke Gets in Your Eyes’ his choice of final song for the Crematorium.

I learnt the comfort that can result from supporting someone in the very last days of their life in a familiar environment where you can carry on eating, sleeping, chatting and watching TV, supported by family members with your loved one close by.

Fast forward eight years to an anonymous bleak room where my father was dying slowly of multiple comorbidities cared for by strangers in a foreign town. On retirement he had decided to move to France where he was diagnosed with widespread malignancy but survived for many years depleted by chemotherapy and the onset of what I now recognise as clinical frailty. Ironically despite our professions we never had a conversation about his dying. I don’t know if he ever really accepted that he was dying and it was certainly never a topic he raised, remaining bizarrely optimistic even during his third round of chemotherapy planning another cruise. Was this conversation ever had with his doctors – his oncologist, his cardiologist or even his GP? I don’t know. I wasn’t involved practically or emotionally due to circumstances and geography. I’m left with an abiding sense of sadness and regret that we didn’t have an opportunity to really connect, talk more about what was happening and how he felt. Hence, things were left unsaid and emotions were held in check.

Many years later my practice as a care home GP is influenced by these experiences. When someone enters one of the care homes I support, I make sure to get details of their families. It is always helpful to be sure to understand someone’s personal history, how often they were married, whether they're a new partner after bereavement and how many children do they have? Unless you superficially ask you’d be surprised how often adult children don’t mention a partner of several years, or one or more children aren’t mentioned reflecting family strains, conflicts or death. It’s so useful to understand the family dynamics in order to facilitate communication. During that first conversation with the person or their representative I make a point to ask about expectations and wishes regarding future care in the event of sudden health emergency. This gives me valuable insight as to where they are on the spectrum from having an Advance Directive already written with robust Treatment Escalation Plan in place, to not really understanding what you’re asking in which case subsequent conversations take a very divergent path. Opportunities will arise to discuss further and nudge towards acceptance of the inevitable outcome and an awareness of the importance of future planning. 

Arranging for or supporting someone’s admission to a care home often comes after months of worry, sleepless nights and phone calls at random hours when a crisis has occurred. It is usually accompanied by a mixture of doubt, guilt, exhaustion, relief, bewilderment and grief. I talk to husbands and wives, partners and siblings. I talk to daughters, sons, grandchildren, nephews and nieces. I try to give them adequate warning during their time in the home, that their loved one is approaching the end of their life. I want to give them the opportunity to have important conversations. I want to make sure that they know what to expect. I want to ensure that when the end comes, my patients and families feel supported, comfortable and at peace in a familiar environment. So, as I draw these important conversations to a close, I always ask: “And how are you coping with all this?”

About the writer

Dr Catherine Millington-Sanders is the RCGP and Marie Curie clinical lead for Palliative and End of Life Care.