Conversations about wishes and preferences about dying can be within advance care planning but can also be much wider than this. Compassionate person-centered approach to care needs to be equitable to all. We need to create opportunities. We cannot second guess what is important to someone else. We need to provide open and honest opportunities to explore preferences and wishes, to be able to make a difference at life’s endings. Exploration of the future through talking, listening, capturing wishes, practical needs and the sharing of memories are all so important and it can be the little things that count.
There may be differences in individuals’ health literacy, so we need to be able to adapt information and tailor it to the individuals’ needs. Healthcare preferences and wishes can be explored and captured within advance care plans, advance decision to refuse treatment and also these can be captured in escalation of treatment plans.
These conversations need to capture one’s quality of life, the essence not only of what is important right now to the individual, but also what the individual and their loved ones feels maybe important for the future care and at life’s end. We need to empower and enable the individual to carry on living until they die, so that their life defines them not their illness, or the sadness that may be left behind. Creating memories is something all of us can do, to support our loved ones, our friends, our communities. The happy moments are all so important to be captured and shared, something that a community can come together to play a part in to help.
Why should we talk about dying?
To support individuals in beginning these conversations, this can often feel emotive. We still have a nemesis in society, a taboo, in that perhaps some of us may hope that if we don’t talk about dying then it won’t happen. Dying is the natural life cycle, the natural consequence of living. We will all die one day, but whilst we may hope for a “good” death, what will that journey be like? What will we leave behind in the memories of others? Even the most peaceful, natural of deaths can leave behind the devastation void of loss, grief and bereavement. But if we can all be compassionate, open, honest and supporting, being there for each other at times of need, sadness, this can provide much comfort.
Many of us fear we won’t have enough time in our busy professional and personal lives to have these conversations. We may fear that we could unleash complex emotions. We may feel ill equipped to be able to respond. Health care professionals are often presumed best placed to have these conversations but, due to time constraints, this may not always happen in a timely manner and often we worry about finding solutions, to try to fix what we can’t fix, to try to make better what sometimes we can’t. Growing evidence supports the use of our compassionate communities and volunteers and support staff in opening up these conversations and providing opportunities. We should be able to support our wider communities in this also.
What do the statistics say?
Research released for Dying Matters Awareness Week in 2017 found:
- The majority of people say they would be willing to offer practical help to friends and neighbours dealing with death, dying and bereavement
- Only 16% think caring for the dying is only a matter for professional health and social care workers, but it may appear we still may not be doing much about this
- Just 35% of adults said they had made a will
- Just 30% had let someone know their funeral wishes
- Just 7% had written down wishes or preferences about the care they would want if they couldn’t make decisions
- Just 25% had asked a family member about their end of life wishes
- Just 33% registered to be an organ donor
Dying Matters Awareness Week
This year’s Dying Matters Awareness Week takes place from 14- 20 May 2018 with the theme of What Can You Do… in your community? We need to consider making the most of opportunities to promote conversations around death and dying, not just within the times of awareness weeks, but as part of our supportive conversations within our compassionate communities.
Compassionate communities are growing, with developments amongst the voluntary sector and partnership approaches to supporting those persons with palliative and end of life care needs, and those important to them.
Within Derbyshire, we are building our compassionate communities and enhancing our partnership working across a range of acute, community, voluntary, charitable and educational services within Derbyshire Alliance for End of Life Care. This partnership of organisations across Derbyshire supports education and quality within end of life care. There is an online hub of public facing information and professional information freely available on the End of Life Care Toolkit.
We have also produced a short film capturing the thoughts of Derbyshire people, talking about what is important to us around end of life care.
The University of Derby is very proud of its partnership working and is committed to have an integral role within Derbyshire Alliance for End of Life Care. This year, we are hosting a range of awareness events across Derbyshire, working together to support compassionate communities, promoting the importance of talking about death and dying and bereavement support, and sharing your wishes with others.
To launch the awareness week this year, the University of Derby hosted a public event, which provided opportunities for our community, students, staff and health and social care professionals to promote the importance of talking about death and dying and supporting ourselves and others.
So remember, planning ahead won’t make dying happen any sooner, but it can provide opportunities for getting to know someone’s preferences and wishes and support loved ones carrying on living with the memories of others. We can truly make a difference if we can begin to have these conversations and provide compassionate, person-centred care.
