Reflections on death

I'm writing this as I sit alongside my father's bedside in hospital waiting for his time to come to pass on and it has prompted me to share some thoughts and reflections about how we approach the end of life.

As a doctor I have had my fair share of death as a clinician on the other side and there the 'white coat' provides a professional defence to many of the emotions. Although I always remember the first paediatric death, she was a lovely 8yr girl who was living with HIV and died of AIDS complications. I had been part of her clinical team for several weeks and although I wasn't on call when she started to deteriorate the nursing team let me know and I came in to spend the evening with her before she passed. At her hospital funeral I was an emotional mess and it was this that helped my decision to move away from paediatric care as a career. Much as clinically I am quite good at working with the multi-agency multi-professional teams that are wrapped around those at the end of life and children with complex needs, I knew emotionally I would not be resilient enough in the long run to go through the loss, even if the death was 'good', time and time again.

I am struck at how little of our medical education focuses on the end of life compared to the focus on the start of life. At medical school I was required to attend ten live births as well as a termination of pregnancy (unless I objected on religious grounds), yet there was no core requirement for me to attend any target number of deaths and there was perhaps one or two lectures on palliative care. We focus a huge amount of policy and effort on the start of life but so little on the end of life and yet it is well recognised that the start and end of life are the most significant for individuals, their families and also for the cost of healthcare. So perhaps it is time to rethink this when it comes to medical education and require all medical students to attend a core number of deaths as part of their training so they are familiar with the many ways that life ends and how to better support their patients to die with dignity and grace. End of life should be a fixed part of all examinations at both undergraduate and post-graduate levels of medical education, as clinicians we should understand and appreciate this to the same degree we do saving life and supporting the start of life.

I was lucky in my early post-graduate training to work with a brilliant geriatric medicine team who taught me that it was a privilege to support grace and dignity in a good death as much as to support a good birth, and sometimes this was much better than trying to fight for life at any cost. Giving someone a good death requires good medicine and I have huge respect for palliative care specialist who every day juggle complex medical conditions, multiple medications and have to show huge emotional intelligence every day supporting families and other staff. A good death is good for patients, it is good for families and it is good for society. This is one of the reasons we need to really refresh our approach to palliative care and pathways across the breadth of medicine and see this as a core fundamental in every clinical disease pathway.

Death and dying is not something that just happens to the individual and those closest to them. I have been really touched by the tender care and compassion shown by the retirement community that my parents live in. Including the notoriously challenging resident who took time to stop in the corridor and offer their condolences and best wishes to my mother one day, a big surprise but also demonstration that not everyone is quite what they seem! Many years ago at Public Health England I played a small part in enabling the toolkit on compassionate communities to be created and this is something that in my time in Birmingham I continued to champion and promote and I'm proud that Birmingham is working towards becoming a Compassionate City, but we should be a Compassionate Country in England and this remains something that we need to be more intentional about across local government and the NHS at a place level to create communities where death is normalised and embraced as part of life. Compassionate Communities is all about bringing conversations about death and dying into a more public space to reduce the isolation felt by those living through it, either as the person dying or those around them. It is a brilliant movement and something that all of us should be working towards.

This is the first passing of someone I am close to that has been prolonged and in hospital, my grand parents all passed quickly either in a care facility or in hospital but rapidly. My father's death is spanning days since his admission and we are now regular faces on the ward as spend hours at his bedside, juggling the balance between work and life and the end of life.

So what are the reflections that I thought would be useful to share from our journey:

Talk about death before it happens with people you care about - as a family we had discussed this to a limited extent and had lasting powers of attorney in place but we hadn't ever managed to get my father to discuss his wishes for funeral and there are lots of decisions to be made. The Lasting Power of Attorney discussions were really helpful as that has helped us navigate the decisions needed about treatment and interventions and this has also been important when it comes to cancelling subscriptions and things like that. One online newspaper subscription has required a PDF of the LPA as well as a scan of the subscription letter before taking action which was a bit of a headache I didn't need. Having the conversation about wishes before they become a reality can really help your relatives, especially the level of intervention that you want to have, or not have, as end of life comes closer, and it's important this is a family conversation so that everyone is on the same page.

Thinking about funeral and burial well before this time comes - this is one of those conversations we don't really like to have but actually having it well in advance of it happening can be really helpful to those who are navigating the decisions. I know some friends who has set out clearly what they want done to the music and readings and the burial site, but giving a bit of a steer can make it easier. Although funeral directors are experts in this, and there are lots out there who can help. But ultimately there are lots of decisions to be made and thinking about this in advance can be really helpful.

Discuss organ donation wishes - there are more and more options around this and some forms of donation require different consent forms. My father has Lewy body dementia and so we will be supporting donation to the Queens Square Brain Donation scheme, as some of his care has been through UCL Queens Square. Although this is quite a specific thing to dad, they also welcome brains without dementia to provide contrast specimens and it's a good way to support deeper understanding of our brains and how they deteriorate. Thinking about organ donation and discussing it with loved ones can be one less decision they need to make for you when you die, so it's worth having a look on the NHS organ donation website and having a think about it ahead of time.

Talk about death and dying as much as you might talk about pregnancy and birth - when someone you love is dying it can be really isolating and a bit like giving birth people are often great in the first few days but this fades and some feel awkward and uncertain what to say or do. Reaching out regularly to those going through it to touch base and say hello can be really helpful, especially in the weeks and month that follow death. Allowing people the space to talk about it is really important to processing the loss and moving forward. Loosing someone you love is not something you forget, but it can become scar tissue that is strong and part of your body and soul rather than something that is an open wound.

Sadly Dad passing is coinciding with starting a new job and it has been really good to have a new team and new bosses who are compassionate and supportive as I navigate this unknown territory with my family in the first few days of a new job. Not an ideal start but it is what it is and it helps a lot to know my new employer is supportive and no doubt having their support now is something that will be repaid over time in loyalty to the organisation.

In essence my key reflection on a personal and professional level is that we all should be more intentional about death and dying, both our own and supporting others going through the end of life journey. So I hope this reflection helps you to do a bit of reflecting of your own about both what you want when your time comes, and how you can help us all become a bit more comfortable with the uncomfortable topic of death and dying.

I'm going to finish with the final segment of the poem from Maya Angelou, When Great Trees Fall, as it speaks to how I feel as my father passes on and the legacy he leaves behind:

And when great souls die,? after a period peace blooms,? slowly and always? irregularly. Spaces fill? with a kind of? soothing electric vibration.? Our senses, restored, never? to be the same, whisper to us.? They existed. They existed.? We can be. Be and be? better. For they existed. - Maya Angelou