The Liverpool Care Pathway brings the subject of dying into the open
How we die and who makes that decision is once again a subject of public concern. Attention has been drawn to the Liverpool Care Pathway, a series of guidelines for health professionals charged with supervising deaths under their care.
Many people were not aware of the guidelines until recently but alarmist letters to the press have made them more widely known and questions are being asked. This can only be good: the debate is on.
My evidence as the Voice of Older People is anecdotal but not irrelevant. Many people write asking where they can acquire “do not resuscitate” cards; others write anguished accounts of the dying days of their parents; still others want to leave “informed directives” — or what were previously called living wills. There is great concern that our deaths are being organised for us through a series of decisions in which we will have little say. Having been persuaded by our current culture that choice in all things is our right, it seems that we are denied it at the very end.
Death is a mystery, and will remain so. How those dying feel about their condition is often hard to verify. Again anecdotally, people have said to me things like “I’m tired”, “It’s time to go” and “I’m ready”. Survival at all costs is no longer a priority. There is clearly an unresolved contradiction between some patients’ wishes and the way that doctors and nurses are obliged by their professional code to address their care. The Liverpool Care Pathway is a clear attempt to tackle this dilemma.
It was introduced by people with extensive experience of palliative care and the final days of terminal illness. These are people often working within a complex web of ethical dilemmas. I know of an 80-year-old woman with terminal cancer who stated that she wanted to die but whose attempted suicide was considered a sign of depression and treated with anti-depressants. How confusing is that? The guidelines offer a way of ordering the thoughts and wisdom about difficult choices.
The emotions around dying are often intense, complicated and shifting. Relatives are desperate not to lose those they love; patients may be living through elusive shifts of mood and expectation; those attending them should be alert to their wishes — and families want to talk and be listened to. Any debate that makes these things possible is welcome.
