Reframing Death and Loss

Dr Julian AbelConsultant in Palliative Care

Weston Area Health Trustand Weston Hospicecare,

Weston super Mare

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Up!

Person with illnessInner NetworkOuter NetworkCommunity Service Delivery

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THE COMPASSIONATE CITY - CHARTER -

Compassionate Cities are communities that recognize that all natural cycles of sickness and health, birth and death, and love and loss occur everyday within the orbits of its institutions and regular activities.A compassionate city is a community that recognizes that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility.

Theme 1. It takes a community: Each and every one of you had this little part to play

• She obviously had lots of people around her who loved her very much and who were willing to use that window of opportunity that they had to spend time with her and to do things for her because this is where she wanted to be • It would have been very hard if both Ted’s and

my work (places) were not as good as they were

Theme 2. Resisting isolation and staying connected: Enablers of caring networks

There’s a strength in numbers and knowing that you’ve got good people around you who don’t care what you say, don’t care what you look like, don’t care how things are, but will always be there for you and not just say they’ll be there for you. They do things sometimes without you even noticing and don’t expect to be appreciated.”

Theme 3. The ordinary becomes the extra-ordinary: everyone doing a little bit makes a broad and strong net

Practical stuff mainly, such as sitting with someone talking to them, cooking, cleaning, mowing the lawns, doing the running around, taking the children, making phone calls, which is huge I think, to stop the carer from having to constantly reiterate ... What else? Taking them to and from hospital, sitting with them so the carer can get out and have a coffee. Whatever it be ... anything.

Theme 4. It’s a process of transformation; developing “death literacy”• He was dying and it was happening in a really

beautiful way in terms of his care and everything ; I think overwhelming in as much as the love and support that everyone showed the whole family • I feel absolute gratitude to be able to participate in

those experiences. I felt really honoured and privileged ... the person that’s giving actually gets a lot out of it.• There’s a selfish act in caring for someone because

something in yourself grows and you’re learning more about what it is to live when you’re caring.

Friends visited more frequently to sit with my partner to release me; a neighbour ended up cooking two meals and a cake every week; a relative who started off mainly telephoning began visiting. Overall, informal help probably doubled, and it wasn’t asked for – it just came by itself.”

Community interventions are therefore a critical part of what we do if we are going to make the most out of the time remaining for everyone

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A challenge

How much of what we do as professionals could be done by non-professionals, and would this make life more meaningful for the patient, family, friends, neighbours, people we know and people we do not?