Difficult but necessary conversations about end of life
I have told my husband and sons that if I become critically ill and my heart stops, I do not want to be resuscitated; we have talked about my wish to die at home if possible, but if this is not achievable for whatever reason, they have my blessing to make alternative arrangements.
Most people find these conversations uncomfortable, but we can’t avoid the inevitable, so it’s important to make sure that we have earlier and regular conversations about our end of life wishes, so it doesn’t become the conversation that we wished we’d had.
Whilst medical technology has enabled people with co-morbidities to live longer, Covid-19 has highlighted that we cannot always prolong life and brought us a stark daily reminder of our mortality.
We saw a rise in emergency burials across all communities, causing stress and anxiety for all involved, specifically where burial wishes were unknown. Without conversations about our wishes and preferences, how can families and professionals know what matters to us at such an important stage of our lives?
Unanswered questions around Wills and Lasting Powers of Attorney cause anxiety. Did they want to die at home or hospital? To be buried or cremated and if so, where? What provision have they made for a funeral? If there’s no family or friends, who will oversee their arrangements?
Our social work team worked with Jackie, who shared her experiences after her mother died.
“We were always going to care for my mother at home when she died, but I’m so pleased I picked up the phone to call Jewish Care when she was being discharged from hospital,” says Jackie, “because without that support I would have felt very lonely and isolated. It felt as if I had two hands of support around me in a cocoon, enabling me to care. In some ways, I almost felt I became a member of team the social worker had put together.
“I was able to deliver my mother’s wishes, which were to die at home and with her family around her. I’m pleased to have been able to honour her wishes and give her the ending she wanted. I wanted to do everything perfectly and with Jewish Care’s support, knowledge and infrastructure, I’m able to put my head on the pillow every night, knowing that I did all that I could have done.”
We want to encourage the community to start having smaller conversations about what matters to them so that talking about future care is easier in the future. Advance care planning, in the context of health and social care, involves sharing which treatments we would accept or refuse, where we would like to live if we become unable to live at home, or where we would wish to be cared for at the very end of life. Support is available from others who are more experienced to have these conversations such as a Rabbi or our Social Work & Community Support and Family Carers Team.
Because most of us do not volunteer these conversations while we are well, these conversations often take place hurriedly when it may be too late.
For Dying Matters Awareness Week (10-16 May), Jewish Care and health and social care partner organisations are encouraging communities to begin compassionate conversations and share what matters most to them, with important people in their life. We need to be ready to listen to what matters to people when they want to talk, but first we must ask them the question.
Paula Plaskow is Jewish Care’s End of Life and Palliative Care Lead and Chair of The Barnet Patient Engagement Group (part of the Barnet Steering Group).
