Charlotte Raven writes movingly about approaching the end of her life (“Please let me choose. I don’t deserve to suffer a sudden, painful death”, Focus). As a retired palliative care nurse with 22 years’ experience of hospice nursing, I want to express my sorrow that she had such a terrible experience of hospice care and to reassure her (I hope) and others that this is not typical and that hospices can do a huge amount to alleviate symptoms and help people have a good death.
However, I also want to emphasise that hospice and palliative care is not, and never will be, a panacea for everyone who is terminally ill. Dame Cicely Saunders, who created the modern hospice movement, taught us about the concept of “total pain”. She recognised that suffering at the end of life takes various forms – physical, emotional, spiritual and social, often intractably intertwined. In my experience, it was those who suffered “total pain” whose symptoms we were least able to control. Physical pain is often inseparable from other distress, such as the total loss of control over one’s life for which there is sadly no solution.
