Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
In common with most (if not all) NHS organisations in the North East, the Hospice I want to tell you about follows the Liverpool Care Pathway - but not slavishly. The local Primary Care Trust held a Stakeholders' Meeting a couple of years ago, and it was suggested that, to help forward planning by the authorities responsible, as well as to give confidence and peace of mind to patients and their families, it would be helpful if there was a way of recording an End-of-Life patient's preferred place to die in writing. This has been adopted and now the Hospice uses the above document at a point where the staff feel the patient is ready.
Lately there has been disquiet voiced in the media about the Liverpool Pathway, and the fact that entry can only start 24 hours before the expected time of death. A letter in the Times (18th September 2009) from Dr Bill Noble, President, Association for Palliative Medicine of Great Britain and Ireland, makes this very point, that “the planning must start earlier, in GP surgeries, nursing homes and even around the dining table.”
I have been referred to this Hospice for Day Care once a week by the Macmillan Nurse who overlooks the course of palliative chemotherapy arranged by my oncologist. There I was handed a copy of the Document to read and think about, a week before we actually completed it - "we" being a doctor, a palliative care nurse (both of whom I knew and was comfortable with) and myself. The doctor took me through it in a relaxed way and we considered each question and discussed its implications thoroughly.
Obviously, to be faced with a form that asks (though not as bluntly) where you choose to die, and whether you want to be resuscitated, must give you pause for thought! Equally, family members and friends may be caused some distress, but the manner in which it was carried out was so sensitive and involving only people that I trusted, that I was totally at ease.
So, now it has been finished: how do I feel about it? Well, I was one of those who pushed for its adoption at the Stakeholders' Meeting, and I feel it really does meet with the motives I had. I do feel confident and reassured, and so do those around me.
It contrasts, sadly, with the occasion of my wife's assessment, carried out not long before her death 18 months ago by a Macmillan Nurse. Not that I have any criticism - the Macmillan Team were reacting to her rapidly changing circumstances wonderfully, and I was on the telephone speaking to another Macmillan Nurse and so could not be involved. But in the ideal case, both patient and carer should be involved: the carer's needs are not identical to the patient's; there are needs of support, practical help, respite and - eventually - bereavement counselling. The last, particularly, would have been of comfort and help.
So, overall, I would commend my experience at the Hospice as being exemplary.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66