The patient's journey: palliative careX—a parent's viewBMJ 2006; 332 doi: https://doi.org/10.1136/bmj.332.7556.1494 (Published 22 June 2006) Cite this as: BMJ 2006;332:1494
- Stephanie Darnill, parent1,
- Bernadette Gamage, paediatric palliative care nurse specialist (firstname.lastname@example.org)1
- 1 Lifeforce Team, Paediatric Palliative Care, London NW1 0PE
- Correspondence to: B Gamage
- Accepted 28 April 2006
My initial contact with palliative care was through the illness and death of one of my children. This account is, by necessity, highly personal and is oncology based because my son had cancer. Parents of children with other conditions will have different problems and different experiences. Even parents of patients with terminal cancer to whom I have talked faced a variety of issues that I did not encounter, arising from their child's specific needs and the provisions in the area in which they lived. However, the conclusions about palliative care that arose from our experiences are fairly general, I think. This is what happened to us.
Starting the journey
My son Andrew died of cancer five years ago, at the age of 17. He became ill in March 1999 and received a diagnosis of ganglioneuroblastoma shortly afterwards. Two operations to remove tumours followed, as did chemotherapy, radiotherapy, and a stem cell transplant, but the cancer progressed, and we were told at the beginning of December 2000 that he had only a short time, between four and 12 weeks, to live.
Although the progress of the illness—the months of anxiety, hospital admissions, treatments, improvements, relapses—does, to a certain extent, prepare you for such news, it is difficult to describe the effect of it. I think crushing, stunning defeat after a prolonged, painful struggle sums it up. And of course it is the end of all hopes for recovery, when treatment stops and palliative care takes over.
For me as a parent this was a time of many urgent and sometimes conflicting demands: the need to prepare my other children, Andrew's sisters, his grandmother and aunt, his many friends and teachers; the practical considerations demanded by his condition, which centred around the prompt supply of pain relief; and the huge and overwhelming desire, within the …