dying- what helps?

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


18 thoughts on “dying- what helps?

  1. Fiona , so sorry I missed this yesterday. Really encouraging that the basic humanity is acknowledged amidst the practical considerations. I am with you that this stirs up the bereavement that daily we lock in to be able to “get on” without them around. Well done NIRDP & RCGP for taking this forward in a strategic way.Take care.x

  2. There is so much to learn about living and working with someone who is dying; someone who knows that they are dying and must leave everyone and everything they love. As for ourselves how can we really express what we feel at that moment of loss; during the time when we are busy arranging a funeral and meeting people; relatives we have not met since a wedding or another funeral; sharing memories; then later during the period when all has gone quiet and we are getting on with life but followed by a black shadow and the sense something is wrong; something is missing. Even when that eases there will be thoughts and events that bring it back. My grandmother kept a note that her Father had sent to her when her mother died. I think it is my favourite piece of writing of all time; probably as I think my Great Grandfather’s belief at that moment of loss must have been a comfort to him. The note ends ‘About half an hour before she departed a light shone around her, the greatest I ever saw and stopped on her for a short time. She looked so young and in the light you would have thought she just dressed to enter the City of God. No doubt Minnie she in Heaven. No more at present. I remain yours. Father’. I never knew my great grandfather but feel so much for him when I read his note. I think discussion and bringing thoughts out into the open will help both those who are dying and those who must live with the thought of losing them and the eventual loss. x

    1. This is for the patient, to help folk know a bit about them, how their illness affects them and what they think about that. It’s very early days.
      A bereavement, no matter how expected, is a huge shock. I’m sure most have no idea how they feel then!
      That’s a wonderful note from your great Grandfather- thank you

  3. Your personal experiences and the sensitivity you have learned in the process of living with illness and experiencing the death of your mother, give you such a uniquely kind and sensitive touch. I admire the gathering of people who want to sensitively minister to the needs of the dying.

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