The head of policy and public affairs at Marie Curie Cancer Care on why now is the time for a national conversation on death and dying.
Are we dying well yet? When this question was posed to a panel of experts last week it was clear the answer is not all of us are. It’s been five years since the Scottish Government published its national action plan for end of life and palliative care, Living and Dying Well, and it’s time to reflect.
To start this process, Marie Curie and the Scottish Partnership for Palliative Care (SPPC) brought together over 80 guests and panellists: the Scottish Government’s national lead for palliative care, Craig White; SPPC Chair, Kenny Steele; palliative care consultant Juliet Spiller; academic David Clark; Children’s Hospice Association Scotland chief executive, Maria McGill; GP, Elizabeth Ireland along with MSPs Aileen McLeod, Rhoda Grant, Nanette Milne and Jim Hume.
In many ways Scotland leads the rest of the UK in end of life care with examples such as the national do not resuscitate policy. However, it is also apparent that there are still challenges that need to be addressed.
We know that palliative care can help those with a terminal illness from the time of diagnosis, yet too many patients are not accessing this care. This is particularly true for those with a terminal non-cancer diagnosis. A recent study by Marie Curie and the University of Edinburgh has shown that four out of five patients were not accessing palliative care and those that did were in the last few weeks of life, so not getting the full benefits.
The question of how we can improve services in a challenging economic environment was a key discussion area. With services across health and social care facing severe financial pressures and cuts; Government and providers are constantly searching for ways to deliver effective, high quality care in more cost saving ways.
The majority of people in Scotland are dying in hospital, yet the vast majority of them do not want to.
The majority of people in Scotland are dying in hospital, yet the vast majority of them do not want to. Most people, when asked, would prefer to die at home or close by in a community setting. It is far more cost effective to die at home than in a hospital. Unplanned expensive emergency admissions are, in many instances, preventable if the right community care package and support is available.
Ensuring people stay at home for as long as is feasible and safe, in line with their wishes, is not a new ambition, but is one that we are still not achieving for too many patients. With the move to the integration of health and social care it is up to all partners and providers to create a more person-centred approach to care, which focuses on keeping them at home. It was refreshing to see such a prominent panel agree that in order to build on the success of Living and Dying Well, Scotland does need a new framework for action in order to fill the gaps in care and ensure that everyone with a terminal illness is getting the care they need and deserve.
Society is often too reluctant to have honest and open conversations around death and dying. No progress in policy or healthcare will be 100% effective until every individual is ready to have the ‘what if’ talk with our loved ones. Now is the time for a national conversation on death and dying.