I would cautiously suggest that these days “death and dying” is no longer the taboo subject it used to be. People are aware of their mortality and seem to be giving some thought to their inevitable death.
I have spent my adult life working as a nurse. Presently I do agency work. This means that I work shifts all over the place, filling in the gaps. Depth of experience and a wide brief makes this work interesting and varied. It also gives me a great understanding of where healthcare in the UK is at.
The recent withdrawal of the Liverpool care pathway was a puzzling decision for me. I have discussed the issue with many nurses I work with, and listened to and read some interesting stuff in the media. Not one of my working colleagues has ever come across a case where a patient was denied food and fluid, in fact without exception all were mystified how this could happen. The only time we withdraw oral nutrition is when a patient is at risk of aspiration and therefore they are essentially unable to eat and drink. Patients who reach this stage are very often barely conscious. Their mouths are kept as moist and comfortable as is possible. This is not done to hasten the end of life, it is part of the gradual decline that happens when somebody is in the last few days of their life.
What we are used to witnessing is the withdrawal of active treatment at this stage. No one person makes this decision. The multidisciplinary team and the patient’s family are involved before treatment is withdrawn. Naturally the patient’s wishes, if known, are considered. It’s complicated, every case is different, and every case will be managed differently depending on the circumstances.
It is with some incredulity I have seen a shift in the care of patients in the last days and hours of their lives over the last few weeks. It has nothing to do with withholding food and fluids. If somebody is unconscious, they can’t eat—nobody can change that. In some areas there is no reduction in treatment intervention, although they are also being prescribed “end of life” drugs, which are being given through a syringe driver.
That means we have to attempt to cannulate people who have grossly oedematous limbs to give IV drugs, give subcutaneous low molecular weight heparin to patients with only hours or days to live, check vital signs regularly on people who are dying, and then contact junior doctors to request review if they score (there is a scoring system in hospital which alerts nurses to potential problems that may require review by a doctor). All of this can be going on while relatives are sitting at the bedside around the clock because the patient is so poorly and is expected to die.
Relatives in most cases don’t really understand that all of what we are doing is essentially futile and allow the treatment to continue. Some relatives have told me to continue as they “know the treatment is helping.”
My only redress is to question the team caring for these patients as to the efficacy of their prescription and what they hope to achieve.
I want patients to die at home in their own bed surrounded by the people who have been important in their lives. Failing this, when the only option is hospital, good nursing care can bring about a quiet, pain free, serene end of life.
I don’t know if the recent withdrawal of the Liverpool care pathway has caused this shift. What I do know is that nurses at ward level who are expected to give this treatment must speak out and question this regressive pattern.
Alison Spurrier is a nurse. She has been practising in the NHS for 25 years.