I was at a half day event which had a focus on palliative care, how to ensure the voice of the patient is heard. In amongst the jargon, the endless discussions of resource implications, and coordinating with other initiatives, I did not expect art and poetry.
Hockney, Heaney, Larkin, Beckett- they all have something to tell us. I didn’t expect to be hearing that from senior doctors. Nor did I expect to come home and download a book by the President of the Royal College of General Practioners, Iona Heath. I did not expect to spend half the night reading and being inspired by her words. However, these things happened.
There is more work to happen, there are more ideas to be explored. The room was full of people engaged in discussion about how to listen, how to observe, how to communicate. Believing that healing (not curing) within dying is possible- to see the person, his/ her hopes and fears, to consider the new portrait of the person “to restore wholeness or, if this is not possible, to assist in striking some new balance between what the body imposes and the self aspires to” E.D. Pellegrino.
“The doctors don’t know any more than we do; in fact they know even less, because their knowledge is made up of an average drawn from observations which are generally hasty and incomplete, and because every case is a new and particular one” A. Daudet.
As patients, we may not know the technicalities or the big words of our illnesses, but we know the impacts on our lives. We know who we are; we are mothers, sons, aunts, friends, dog owners who like reading, gardening, swimming, needlework, cycling, jigsaws or flower arranging. In the weeks, days and hours of our death we are those people. We have things to sort in our heads.
The event was about examining how to record the voice of the patient, how to enable conversations “knowing how short the time in which to say all the things that lie heavy on the heart and conscience and do all the things they have to do together, things one cannot do alone.” (S Beckett)
Of course I was going to feel a lot of what went on. On a day like that my bereavement felt very close.
In the last minutes he said more to her
Almost than in their whole life together.
‘You’ll be in New Row on Monday night
And I’ll come up for you and you’ll be glad
When I walk in the door . . . Isn’t that right?’
His head was bent down to her propped-up head.
She could not hear but we were overjoyed.
He called her good and girl. Then she was dead,
The searching for a pulsebeat was abandoned
And we all knew one thing by being there.
The space we stood around had been emptied
Into us to keep, it penetrated
Clearances that suddenly stood open.
High cries were felled and a pure change happened.
from Clearances, Seamus Heaney