End-of-life palliative care needs to start earlier
Sir, We should not underestimate the difficulties in communication between clinicians, patients and families during a terminal illness. Contrary to popular belief, doctors and nurses are not very accurate when they attempt to predict the length of a patient’s survival before they are actually moribund. About the best we can do is recognise a patient on the brink of death. That is why the Liverpool Care Pathway (LCP) focuses on the last hours (report, Sept 14). Unfortunately, by that time, it is virtually impossible to grant patients the choice of care setting that we would wish.
Joan Bakewell (feedback, Sept 14) is entirely right to welcome public concern over how we die and who makes the decisions that affect our care. If, as a society, we are serious about how we care for the dying, we need to start by enabling more people to express their wishes for care towards the end. We also need to recognise that the end often comes with little warning, so the daily care of our frail and chronic sick patients is also important.
Professor Millard and others’ concerns over the use of the Liverpool Care Pathway do not represent the view of the overwhelming majority of physicians who specialise in palliative care. Although forecasting death is an inexact science, clinical decisions regarding end of life care are no longer made in isolation, and palliative care hospital support teams are available throughout the country to support other specialties in this work. These teams include physicians who also practise in the local hospice or palliative care unit.
The care pathway approach is now commonly used to aid the work of many specialties; it does not replace clinical judgment, but acts as a prompt to assist clinical teams to ensure that every patient gets adequate attention to every aspect of their care. Clinical pathways are useful in auditing practice and developing services. Without it, the National Care of the Dying Audit would not have been possible and the extent of both the benefits and the shortcomings of NHS end of life care would remain conjecture.
I am often surprised by misconceptions about how we treat the dying. Unless you see many dying patients every day it is hard to imagine how diverse death is. That is why clinical decisions on the prescription of analgesics, sedatives and fluids must be made on an individual patient basis. Modern practice in evidence-based palliative medicine no longer requires that we administer toxic or life threatening doses of analgesics or sedatives to obtain adequate relief of pain and other symptoms. Treatment with subcutaneous or intravenous fluids is occasionally indicated when dehydration causes distressing symptoms, but is futile in patients where poor oral intake is part of a general deterioration that is inevitable in a terminal illness. It is potentially harmful if administered to patients with heart failure leading to congestion of the lungs.
The LCP is not a one-way street and, when further deterioration does not occur, it is common practice to take the patient off the Pathway and reinstitute previous treatment. The use of sedative medication adjusted to a patient’s needs is common in the final hours, simply because delirium with agitation is common as dying patients slip into a coma that precedes death. This treatment of distress, using drugs and doses appropriate to the patient, is not the same as the practice of continuous deep sedation until death that has been described as an alternative to euthanasia in the Netherlands.
We strongly support the Department of Health’s End of Life Care Strategy, which includes the promotion of the LCP. It is possible to misuse any clinical tool, but our experience is that, with adequate training and support, it is used appropriately. It represents one of the most powerful tools we have to foster the principles of high quality palliative care for the majority of patients. However, if we want choice, the planning must start earlier, in GP surgeries, nursing homes and even around the dining table.
