Backstory

A woman in her mid 80s had a perforation and was not fit for surgery. She had not responded to five days of antibiotics. I was asked to see her because of SOB.

Her airway was clear. I noted her sats were 88% on 2L O2/min, and she had a diffuse expiratory wheeze. I prescribed a salbumatamol nebuliser, put the O2 up to 5L/min and took an ABG.

During my ABC assessment, Outreach asked me to think about her ceiling of care. 10 minutes later, after discussion with the consultant, she was on the LCP.

A few days later, the same patient made some slight improvements in her cognition and seemed to be getting slightly better. She requested specific foods, having not spoken for days. She had a decent urine output, although she was not catheterised. The consultant’s impression was that she may have recovered, as the gallbladder was draining into the small bowel, and not spreading infection into the peritoneum. The LCP was stopped.

The issue

She had been on the LCP for about a week, and was taken off it and kept in our hospital. However, later that day she was put back on the LCP. She died a few hours later.

Could this have been predicted?

Yes and no. I don’t think anyone is to blame here at all. Nothing in the LCP is ever 100% certain. However, there must be markers that suggest irreversibility and others which suggest improvement. Over the next few weeks, I intend to research and discuss this and write up what I find.

What have you found so far?

The question is, if we look back is there anything we could have done differently? The decision to be on the LCP must be regularly reviewed, as it is not a death sentence but a constantly renewed decision to do what is best for the patient. That said, after 7 days on the LCP, is a recovery possible? Her mouth was bone dry and had frank necrosis in it. She was massively edematous. She had not been eating or drinking for such a long time. Even if the underlying pathology had reversed, had the combined toll of the underlying problem plus the LCP with its lack of attendance to the vital signs and end organ perfusion left her in an unrecoverable state? And does this mean that if the LCP is maintained on any patient for longer than say 5 or 6 days, that is it probably now irreversible in any case?

In other words, is the LCP self-fulfilling? This is an accusation often made about the LCP, and is the subject of a DoH review due in summer 2013.

There was a case of a patient who was on the LCP for about 5 days during her admission, but today was discharged from hospital in back to her joking self and mobilising between bed and chair. How does one predict the different destinies of patients on the LCP when there are no observations, clinical assessments or investigations?

Things became clearer when I thought about shock. This progresses through a few stages, and the early ones are reversible. However, more and more aggressive therapy is needed the further the shock progresses. Eventually you reach refractory shock, which is when adenosine leaks out of cells greater than the maximal rate at which it can be synthesised, meaning that the cell will never generate enough ATP and death is inevitable. At this point, the focus must be on symptom relief, and anything else is completely pointless.  Even though it seems like just minute earlier we were doing all sorts of high-end resuscitation therapy for the patient who has just tipped into refractory shock, it does make sense to switch the treatment goals so suddenly. The decision to be on the LCP likewise should be when the physiology of the patient is irreversible, which justifies focusing on pure symptom relief.

Unfortunately, we do not have real time measures of adenosine leaking or any other specific markers of death. We can however consider what the patient’s baseline physiology was like, and how much of an insult it is likely to be able to take. We can look at response to treatment, and if this is not working after a certain length of time then perhaps it will never work. This is because if it did not work when the patient was functioning at 40% of his/her baseline and the patient is deteriorating, it is even less likely to work at 30% of his/her baseline. We can consider whether the disease process itself is terminal, such as end stage renal failure not for any renal replacement therapy.

What I think palliative care is about

I have been looking up general guidance on the LCP, mostly to understand where it came from and appreciate the nuances. I found this guide to the LCP medications, and noticed a few comments towards the end of the document about what good palliative care really is.

‘You matter because you are you.
You matter to the last moment of your life,
and we will do all you can,
not only to help you die peacefully
but to live until you die.’

Sometimes, that’s all there is to do. And we can either do it well or lose ourselves trying to do the impossible and reverse irreversibly deranged physiology, causing massive distress to the patient and family. Finally, the LCP has started to make sense to me.