An interesting time to die

Fourteen years ago I was diagnosed with breast cancer. Since then its treatment has improved immeasurably. It is now more a “chronic” condition than a death sentence, with a five-year survival rate of up to 90 per cent. But now I have been diagnosed with pancreatic cancer, with a five-year survival rate of 4 per cent or worse.

Two years after a Whipple procedure (which removed my pancreas, gallbladder, bile duct and parts of my small intestine), I was found to have a reoccurrence of my primary cancer, with secondaries in my lung. These are the bare facts. But in spite of their grim significance for me, this is an extremely interesting time to die. Recent debates over resources, rulings of Nice (the National Institute for Health and Clinical Excellence), developments in palliative care, and arguments over assisted death, have raised the possibility of being able to see dying as something to be respected and celebrated: a fulfilling experience rather than a technological failure.



There are those who think that, with the excellent palliative care that is now available, no one would want to choose the option of assisted dying. And yet more than 800 people in Britain are known to have signed up to Dignitas because they hope to die with dignity. This confirms my own experience during my 40 years as a GP. In spite of adequate pain relief, some people who are facing a terminal illness still want to have more certainty about how, when and where they will die. I remember feeling that I had failed with one patient who was also a health professional and who was terminally ill with cancer. She had stockpiled various drugs to give her control over her time of death. Unfortunately she had a sudden obstruction of her bowel and could not take the pills when she wanted to. She was furious at ending up in a hospice where she survived in pain for another ten days—just what she did not want.

In fact, supporting and respecting the wishes of terminally ill people in the timing of their death has become much more difficult. A nurse who thought that I had given too much analgesia to a patient dying of cancer once threatened to report me: the patient had become paralysed and, in spite of good pain relief, still wanted to die. Undoubtedly, in these post-Shipman days, fear remains among my fellow medical professionals about overstepping the guidelines when helping patients who have a terminal illness. But this surely must be tempered by the need to listen to the patient’s own wishes. Part of the problem is that those deciding on the legal and political issues of assisted dying are not those facing immediate death themselves, but those running hospices (who may have a vested interest against assisted death), bishops in the House of Lords (who have a particular view on life and death) and others in positions of “authority.”

For me, at the moment, there is the need to achieve a balance between living as normal a life as possible and making the very most of my last living days as I wait to die. Of course, this includes seeing as much as I can of my children and grandchildren and at the same time leaving the DIPEx health experiences group, which I co-founded and help to run, in good order and in good hands, along with the website www.healthtalkonline.org. I do, however, have to admit that I get considerable relief from knowing that I no longer have to worry about the next research assessment exercise, as I simply will not be around, and that recently when I was caught speeding (for the first time in my life) I opted to pay the fine rather than attending the offered “retraining” course.

My major regrets are that I will know less about the future than I want to, particularly concerning my children and grandchildren, and that so many unanswered questions still pop into my head during my long sleepless hours at night. Why does taste change during illness? Why does pancreatic cancer have a much worse outcome than other cancers? Why can’t people have a rational discussion about assisted dying? Why can’t assisted dying be available in Britain for those who want it as a choice? And why, oh why is the BMA opposed to physician-assisted suicide and euthanasia?

Surely by now our culture has developed enough humanity to provide the choice and still protect the vulnerable.

This article first appeared in the British Medical Journal