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PaperclipPerfector  5mo ago (text post)   26064 thread views

Culture War Roundup for the week of August 4, 2025

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The LCP seems to be well before my time. I wasn't even in med school when the program officially wrapped up. And I've only been in the UK for almost exactly a year now.

The most obvious of the critiques that stands out to me is that paying the local trusts for adherence to the policy is potentially misguided. It is standard practice to award funds on the basis of performance. Paying local trusts for adherence to an end-of-life protocol sounds like ordinary KPI management. We pay for sepsis bundles, maternal mortality reductions, time-to-thrombolysis, all the usual dashboards.

But the object-level signal here is different. If your target is “percent of palliative patients on Pathway X,” you create a reward for moving people onto Pathway X. In stroke or obstetrics, the KPI rewards rescuing people. In end-of-life care, a superficially similar metric can look like a reward for getting to the end faster. Most clinicians will ignore that perverse reading. Some will not. Families will presume the worst when outcomes are bad. This is not a moral condemnation. It is a predictable human response to incentives that look ugly from the outside.

Some lurid stories of people visiting sick relatives and noticing another patient begging for water, claiming to be thirsty, and being ignored by nurses, and when the visitors asked about it, they were told this person was 'nil by mouth', they were unresponsive, they were DNR, and it was none of the strangers' business, and so (it was claimed) they were being let die of dehydration by stealth.

I find this hard to believe. In the hospital I worked at, it was often the case that palliative patients were put NBM, but usually because they simply couldn't tolerate it. They presented severe choking risks, leave aside complications like aspiration pneumonia. More common was simply attempting to feed them as much as they could manage, usually manually and by means of thickened fluids. A lot of these palliative patients simply can't eat enough to keep them alive, and options like NG tubes or parenteral nutrition were decided against: dying patients often can't tolerate them, and they provide maybe a few days or weeks of life at the cost of reducing QOL even further.

NBM does not mean “no comfort.” People receive subcutaneous or intravenous fluids when appropriate. They get oral care, ice chips, and we do our best to ameliorate the sensation of dryness, which is different from actual dehydration. From the corridor, it can look like neglect. From the notes, it is usually a documented risk-benefit tradeoff made by clinicians who do not enjoy saying no to water.

My point? The first time would have been wrong to let him die. The second time would have been wrong to try and keep him alive. And both times, the hospital was trying to nudge us towards the death side of the equation. That's the lack of trust in medical experts that is at the heart of the debate.

I'm glad your father survived the initial hospitalization and gained many years of healthy life. However, I think both your family and the doctors did the right thing. We're not omniscient, patients who seem unlikely to die can pass away overnight, and in rare cases, those we judge to be on death's door might just not answer when the Reaper rings. We try our best to make hard decisions with limited information.

I've mentioned elsewhere a patient of mine from not long ago. Physically healthy as an ox, we thought, even if his brain was riddled with holes from the dementia. Then it turned out the previous hospital was negligent, he'd had a hemorrhage in his cranium, and deteriorated overnight. We even did the palliative paperwork, and were ready to provide end of life care as seemed inevitable.

I went away to India for a few weeks, and genuinely thought he was a goner. I came back, and found out that he was back on his feet, and as chipper as ever. The nurses seemed happier about that than they were about my return. I'd call this truly unexpected, as every single one of the doctors at the hospital genuinely expected him to die. It's a shame that he didn't get the benefit of such a reprieve from death while his brain was still healthy, but he might live another year or two yet.

Yet, he is the exception. In 9/10 cases, a patient like that will die regardless of what we resort to. The process of resorting to everything (including escalation to an ICU) is normally worse than keeping them comfortable till the end. Escalation to ICU can mean delirium in a bright room, tubes in places you do not want tubes, and no family at the bedside. Even the young and hearty do not enjoy their stay there, let alone the aged, frail and dying.

The lurid anecdotes make sense if you only see the sip denied. They look different if you see the swallow test, the chest x-ray, and the conversation the team had with the family yesterday. Perverse incentives make suspicion easier, which is why tying money to a pathway box is a bad idea even if it probably helps more than it hurts.

As you say, you came along long after all this row. So any improvements that occurred before you started working in the UK are invisible to you. I don't know if the lurid accusations were true but they were certainly made:

Of the hundreds of families who submitted testimony of their loved ones’ experiences on the pathway to the independent review chaired by Baroness Neuberger in 2013, many referenced hydration and nutrition. Some patients’ families had been shouted at by nurses when trying to give them water. The panel also heard how opiates and tranquillisers were sometimes used inappropriately and in too strong a dose as soon as the LCP was initiated, which made the patient drowsy and incapable of asking for food or drink. The Neuberger report quotes a particularly shocking example of someone who suffered a painfully “slow death, attributable in part to dehydration and starvation”.

...One case study in the 2023 report refers to a 21-year-old woman named Laura Jane Booth, who was admitted for a routine eye operation in 2016. Three weeks later, she was dead. Booth, who had the genetic disorder Patau’s syndrome, was initially deemed to have died of natural causes on her death certificate; a 2021 inquest, however, found that there had been a “gross failure of her care” and that “malnutrition contributed to her death”. Her parents said that she’d been denied food for weeks while in hospital, and that they’d had no idea she was put on an end-of-life pathway. The report for LCFCPG said this is one of seven cases in which doctors failed to take a patient’s mental capacity into account, in clear breach of the Mental Capacity Act 2005.

...We spoke with Julie James, whose dad David was a respected Liverpool musician and cancer survivor. James drove himself into Aintree Hospital in May 2012 with constipation. After originally being told a simple procedure would remove the blockage, he contracted pneumonia and sepsis and became more seriously ill, eventually requiring a tracheostomy and ending up on a critical care unit. At first, he did not recognise his family.

“He was crying out for a drink,” Julie says. “He was very, very thirsty.” Julie says David’s wife, May, asked if she could give him some water, and was told by a nurse that David was not allowed food or drink. When David was finally given fluids by drip, he began to recognise Julie and May again, and even asked for music books to pass the time.

Julie and her family accused the hospital of putting her father on the LCP without his or his family’s consent, so he could pass away “peacefully” and “with dignity”, as she remembers hospital staff saying at the time. The trust took the unusual step of seeking declarations from the Court of Protection to withdraw what they said were “aggressive” treatments, including CPR; they argued that James had little chance of recovering and that trying to resuscitate him would cause him pain. The judge denied the trust’s application, but this began a long legal journey for the James family that led to a Supreme Court battle via the Court of Appeal after James’s death from cardiac arrest.

That is part of the problem: something is done to excess, it gets fixed, the people who come along later have no idea of the history and go "well everything is fine as it stands today, what is the problem?"

The problem is, we've seen the days when it wasn't okay, and there's little reason to think that there will not be new and improved ways of going off the rails in future.

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