During this pandemic, more than ever, we share a common human anxiety of being affected by covid-19 and of experiencing death in our communities. Constant questions in our minds are: “Are we turning the corner to defeat this virus?” and “How can we manage to keep our patients and ourselves safe?”
GPs are seeing the brutal reality. I hear from colleagues who say they are witnessing sickness and dying at scale. It’s tough. This is close and personal to us all. These memories of how people die will remain in our lives forever.
Understanding the specific covid-19 dying process is crucial to help us relieve the suffering of those at the end of their life and also to help support those important to them. From my personal experience and discussions with colleagues it’s clear that dying from covid-19 feels different. To generalise, there seem to be two main dying experiences for which clinicians, particularly in the community, need to be prepared. If we recognise these patterns, teams stand a better chance of being able to respond quickly and appropriately—providing us with much needed peace of mind that we’ve done the best we can for our patients and families.
The first type is probably the mainstay of dying, with a more typical and “plannable” end of life experience for people. For example, there are those patients with a terminal illness such as advanced cancer or heart failure. As their GP you would not have been surprised if they died in the next twelve months. If they become infected with covid-19 and eventually deteriorate and die from the virus, as upsetting as this is for everyone involved, to a clinician this feels familiar. Planning is easier, and advance care planning discussions may have already taken place with the person and their family. There is time for anticipatory prescribing and syringe drivers for continuous subcutaneous medication may be helpful. Loved ones and professionals are prepared as best as we can be, despite the shared sadness that covid-19 has taken a person from our community sooner than we would have expected.
The second pattern of dying from covid-19 infection, is nothing short of horrific and haunting for all involved with a patient changing from unwell to dying in only a few hours. If no advance care plan is in place, at this stage it’s extremely unlikely you will get the chance to discuss their preferences for care.
My plea to community multi-professional teams is: Be prepared both medically and mentally. Medically, you need to know how best to rapidly relieve suffering for people dying from covid-19. Mentally, you need to support those as they die, those left behind, yourself and colleagues. Where possible, have immediate access to key medications and know your Community End of Life Care Symptom Control Guidance and specifically how to titrate up required medications such as morphine, midazolam, levomepromazine until clinically effective. Know your specialist 24/7 advice line number, for example, your hospice. Above all, keep a calm and a clear head. Know that even though you may not have experienced dying like this before, you can manage. Simple things matter and how you respond remains crucial to how you and others will remember each death—kind, honest, communication and a compassionate approach despite a difficult situation are often treasured by others who witness death and also for family and friends on the end of a phone or video call. Remember to communicate with other key professionals for care after death, including holistic spiritual, religious or cultural support. Post traumatic stress disorder and mental health issues are likely to be high for families and people left behind and affected by this type of rapid and unexpected death. Offer a follow up contact and connect families to psychosocial support contact details.
Lastly and importantly, remember to check-in on yourself and colleagues. I’ve never experienced such continued and loud background anxiety noise in my mind. It is present when I wake up and still there as I go to sleep. It is impossible to drown out and seems to be present for so many healthcare professionals that I talk with. Yet, we all need to try and find some inner calm to get through experiencing these high intensity deaths. These experiences are difficult and we will need to connect into our supportive networks—whether at work, with our family, or with friends. We’re stronger together. Listen to your internal dialogue. Reach out to the extra support available for professionals that has been set up specifically to help support us. Whether we have been infected with or affected by covid-19, all survivors will need to find our own individual recovery programme.
There is guidance on delivering palliative care during the pandemic on the RCGP COVID-19 resource hub, free for all healthcare professionals.
Catherine Millington-Sanders is RCGP and Marie Curie National Clinical Champion for End of Life Care and Co-Founder of the Social Enterprise Difficult Conversations. She is a practicing GP, clinical commissioner and educationalist and a specialty doctor in palliative medicine. She chairs the RCGP COVID EOLC Advisory Group, supporting RCGP to develop end of life care focused resources.
Competing interests: CMS’ RCGP national clinical end of life care champion role is funded by Marie Curie.