#DMAW21 Episode 1
The impact of the pandemic.
‘Approximately 91,000 more people died this year compared to the average for each of the previous five years. This is an appalling statistic in a year when it would be easy to become immune to the daily death toll numbers . Many of the most elderly in our community who died, would have died naturally without covid19 but many more were afflicted with the virus or have died as a side effect of the pandemic when they wouldn’t have otherwise. My cousin was one of those people.
The pandemic has had big impacts on dying people and their families and carers, regardless of cause of death. Many who died had no time to plan and were unable to say and do the important things they would have chosen to had they known what was around the corner.
For people with terminal illness, lockdown and social distancing policies have caused isolation and loneliness during a phase of life where relationships and human contact are of utmost importance.
Community care has been stretched at the same time as people may have felt discouraged from seeking hospital care.’
Whilst there has been a huge amount of publicity about numbers, policy, tiers, R numbers and roadmaps to ‘normal’ (whatever that is!) there has been little reflection about the individual costs: the grief of those home alone in a lockdown, inability to be with family at this most important of times, people in care homes deteriorating and dying from broken hearts and minds due to separation from loved ones and stimulation, front line staff exhaustion, both physically and emotionally. As a GP, I am confronted daily with the tsunami of grief and anxiety that the isolation of lockdown had imposed on all of us.
There is little evidence about the quality of the experience of those families who had planned ahead for their own ends compared with those who had not. This evidence is slowly emerging and should be shared, learned from and acted on – not just by government but by the wider community. It is already well known that the benefits of making an advance care plan are considerable for both health and social care and patients alike. There are now many useful tools and resources that have been developed to help people with this. (see the Resources section of ‘Being Mortal’)
The graph below reflects the change in unplanned admission for people who had had an opportunity to record an advance care plan and Respect Form (where a person’s wishes and care plan highlights are recorded and shared) in 2020 in Nottinghamshire. Reduced admissions have been exaggerated to a significant degree by the pandemic: fear of separation from family and of catching cover infection in hospital, however we have robust evidence that planning ahead means fewer emergencies.
This pre-amble highlights the need to continue to be open about the prospect of ourselves or someone close to us dying in the forseeable future, whether from progressive disease, with the added benefit of time to plan, or from a sudden infection like #Covid19 or other sudden event, when we don’t plan ahead.
For as long as we’ve lived, we’ve died. It’s a simple fact of life. We will all die. We will all lose someone we love. We will all grieve. No one is immune. It’s something we all live with. And yet we still find death, dying and grief so difficult to talk about.
Talking about dying doesn’t make it more likely to happen.Ali Sutherland
If we don’t address the elephant in the room head-on, how can we know what really matters to a person and how can we plan for what is, after all, inevitable for all of us at some point?
We all have a role to play in caring for each other and planning ahead. Its something that can be fun as well as serious; after all, if we can’t laugh about life and death what is the point of being alive at all?
Mary, age 91, never married and lived happily at home in a small village supported by neighbours. She had no close family. When her heart failure progressed and she began having difficulties with her memory, she was very happy to talk about how she would like to be cared for in the future should she need more care. Her doctor included her carers in the conversation about this and Mary contributed to a Respect form at a time that she could do so in a relaxed fashion. Her form shared the following information about her:
- Her conditions
- Important communication information e.g. the fact that she couldn’t hear without her hearing aids
- The things in life that are most important to her – her dog
- The things she most feared and wanted to avoid – pain and being alone
- Her priorities for future care e.g. wanting to remain at home
- Key contacts in an emergency
Several months later Mary’s carers found her on the floor, conscious but unable to communicate. She had had a major stroke. They weren’t sure what to do and called an ambulance. The paramedics were shown Mary’s Respect form and discussed her ongoing care with her carers then contacted her GP. It was agreed that Mary’s wishes should be respected and Mary’s carers were helped to make her comfortable in bed. Her GP and community nurse team ensured that she was enabled to remain at home, safe and peaceful. She died 3 days later in her own bed with her favourite music playing and with her dog nestled under her arm.
She had lived a full life and she had a good death – what she had hoped for.
So What? What should we all do about it?
In episode 2 of this blog, I will be considering the conversations in more detail; how we can start them, who we should talk to, how we can best prepare for them and what we could consider including.
These 3 books are well worth reading for all those contemplating their own priorities for the now and for the future. They have helped me in my conversations with my patients too. I would strongly recommend them to everybody who feels inspired to ponder more on this subject.
The Nottinghamshire Website for information and resources to help both professionals and the public plan for good End of Life Care has lots of useful information.