Dying Matters Week – a chance for organisations, individuals and partners to come together to open up the conversation around dying, death and bereavement.
As we come to the end of another Dying Matters week, I feel frustrated, after seven years of trying to improve end of life care.
This week I shared a blog about the day that Seth was diagnosed with pancreatic cancer. A day when he was told he had days maybe weeks to live. He was told when he was alone. A man burdened by the most dreadful news was then left to tell me that he was dying. It was cruel a burden to bear in every way.
33 short and heart-breaking days later Seth died in an acute hospital, a place he did not choose, he wanted to be at home but the weight of a system designed to deliver care to the masses was unable to respond to what was important to one person.
Unable to respond to the needs of my person. A system that crushed and disregarded the things that were important to Seth at a time when it should of supported helping him to assimilate what his life had meant to him and to those whose many lives he touched with his gentle grace.
Over the last seven years I have been involved with charities, trusts, organisations, in an array of ways; meetings, discussions, deliberations, focus groups, plenaries, conferences, symposiums……every session talked about how to improve end of life care. Over the years the feedback I and others have given is that palliative and end of life care should be person and family centred, its about what is important to the person who is dying and the people around them who are supporting them. Some of the organisations I worked with have taken forward some work, some didn’t even have the common decency to come back and let you know what happened to your feedback. The feedback you so willingly shared, the feedback and experiences that were verbalising the trauma the of the most devastating experience of your life. The impact of the feeling that your feedback was ignored, it’s almost as if it would be easier if someone had never asked. The blatant disregard of a person’s value and more crushingly a blatant disregard to the person who died, the person whose experiences you are sharing.
I was in a discussion group this week where I met a kindred spirit who has spent the last twenty years sharing the experience of the death from breast cancer of her beloved daughter in a busy A and E department. She too feels frustrated that she has been having the same conversation for 20 years but little has changed in terms of person and family centred care.
In a few days it will be the anniversary of Seth’s death and until 2020 I would never have believed that I would one day say that we had the luxury of 33 days together.33 days to help us both adjust to the news that Seth was going to die, but now after the devastation of 2020 and into 2021, the pandemic has re calibrated my experience. Now 33 days feels like a privilege, a luxury, 33 days to talk, to plan, to discuss, to keep the most precious of personal connections. It breaks my heart to think of all the people who have experienced dying, death, bereavement and now ongoing grief because of the pandemic. These families were not afforded the luxury of 33 days.
After the focus on dying, death, grief and bereavement that the pandemic has imposed on us, NOW is the time, NOW is the time for things to change.
There are so many people with lived experience of palliative care via their life limiting illness and sadly there are now 1000s of people who have experienced traumatic death in the last year. As well as an army of people who have lived experiences of the death of their loved ones, who have been working for years to improve things based on those pre pandemic experiences.
NOW is the time to act. To bring forward that lived experience, to support people in a respectful manner, to really listen, respond and ACT on experiences, to reflect on the impact and value of that lived experience and most of all for people with passion and desire to improve dying, death, grief and bereavement to come together.
If you are one of these people and you want to join me in my mission to improve things please do drop me a line at firstname.lastname@example.org or direct message me via twitter.
NOW IS THE TIME TO ACT
NOW IS THE TIME TO SEND A LOUD MESSAGE THAT THE VOICES OF PEOPLE WITH LIVED EXPERIENCE MUST BE AT THE CENTRE OF THIS MOMENT IN TIME.