A culture change is needed in the way we approach death and dying - Compassion in Dying
We must create a culture of dying that looks beyond proxy measurements and truly seeks to understand and value the unique wishes of each individual at the end of life, says Natalie Koussa, Director of Community Outreach and Partnerships, Compassion in Dying.
On Friday, Compassion in Dying celebrated having supported over 25,000 people to plan for the end of life. Through these interactions with people with terminal or life-changing illness, their loved ones and carers, the charity has gleaned a wealth of knowledge about what end-of-life care is really like for those who are on the receiving end in the UK. And though there is undoubtedly a great deal of laudable work being done by a range of organisations in this sector, what is clear is that there is a still a long way to go if we are to achieve truly person-centred, person-led care at the end of life.
One of our key reflections is that the voices and experiences of dying people and their carers need to be placed at the centre of the conversation – something which is not happening nearly as often as it should. This is what we have sought to do in our new report, “I wish I had known…”: Reflections from supporting 25,000 people to plan for the end of life, which was launched on Friday at an event of the same name, attended by a wide range of stakeholders in the end of life sector. In our report, we have drawn on these experiences to set out the culture change we believe needs to take place if we are to achieve truly person-centred care at the end of life.
This change includes the need to better recognise the value of clear information and honest conversations. When people are empowered through timely, appropriate information to make decisions about their treatment and care that are based on their own values and priorities, fear and misconceptions around death and dying are greatly reduced. This was summed up perfectly by one of the people featured in our report, who said “I wasn’t prepared for how quickly my husband went downhill and I think if someone had told him earlier about what may happen we might have been more prepared to ask about what choices he had for his care”.
The report reflects research we undertook with 600 dying people and carers. A third of the dying people we spoke to told us they had not been given enough information about the options available to them. Half of bereaved carers agreed. There are people we’ve spoken to whose doctors have been unwilling to have a conversation about their treatment options, the side effects of treatments or the pros and cons of stopping treatment, and we’ve heard that this has led to unwanted treatment and emotional distress.
Another necessary change is to resist the temptation of easy fixes. With the development of person-centred care, place of death quickly took hold as an indicator of how end-of-life care was meeting, or failing to meet, the wishes of dying people. Common understanding developed that shifting hospital deaths to home would be a marker of success. We have found, however, that many people prioritise pain relief and retaining dignity above place of death. What we hear from the people we support is that end-of-life conversations are too often dominated by clinical considerations rather than giving equal weight to the social and emotional aspects, which are often what people struggle with the most. We must create a culture of dying that looks beyond proxy measurements and truly seeks to understand and value the unique wishes of each individual at the end of life.
Another common trope that must be challenged is the idea that death is a taboo – that it’s too awkward or difficult to talk about, or that people simply don’t want to. Through interactions on our information line and community outreach work, we have found the opposite – people with terminal or life-changing conditions, and those around them, want and need to talk about death and dying.
YouGov polling we commissioned earlier this year found that only 14% of people would feel uncomfortable having a conversation about their end-of-life wishes with a healthcare professional – yet only 52% would instigate the conversation themselves. It’s therefore important for us to shift the common belief that people don’t want to talk about this, and to make healthcare professionals and people working in charities aware that people do in fact want to talk about death and dying. It’s often just that they don’t know where to start.
We want people to be able to talk openly about their wishes for the end of life, including their goals, priorities and preferences for care – and for these wishes to be heard and respected. We want them to be able to make informed choices, have the opportunity to discuss those choices with healthcare professionals and understand the likely outcomes of decisions about treatment. We want people to feel empowered to plan their care and record their care and treatment wishes for the future. This culture change can be achieved by placing the voices and experiences of dying people at the centre of everything we do – and we hope in time this becomes the norm for the entirety of the end-of-life sector.