Liverpool Care Pathway – A Frightening Care Pathway

This is really frightening, that our lives are in their hands. Our fate is a fait accompli. We are at their mercy…

This is MAX PEMBERTON in The Telegraph:

By Max Pemberton

7:00AM BST 07 Sep 2009

Comment

The telephone rang. From the tone of my Gran's voice I knew immediately it was bad news. "The doctors have said they think he's going to die," she said quietly. "He's in intensive care but they think he won't last the night". I know that when doctors talk about someone dying then it there really isn't much hope.

My grandfather had been taken into hospital earlier that day with a distended abdomen. He was having difficulties breathing and had become increasingly confused. He had been admitted to a ward and arrangements had been made for him to have a scan that same day. He had been given a drink containing contrast medium that would make the image of his bowels clearer, but while he lay in the scanner he had vomited and inhaled it. He then rapidly developed pneumonia, making his breathing even worse. Blood tests had shown that the oxygen in his blood was dangerously low. He was now on intravenous antibiotics and high-flow, pressurised oxygen but was having difficulty tolerating the mask over his face, so the doctors had been forced to sedate him. Now his breathing had changed from being deep and laboured to short, shallow breaths. He was no longer struggling to get enough oxygen into his lungs.

No pill or potion is a

match for compassion

The doctors, my Gran carefully relayed to me, warned her that this was because his body was now giving up and it was only a matter of time. My Gran didn't need to explain this to me, because I have seen it so many times before. This, I thought as I listened to her, is the typical pattern of how old people die. One thing after another, the body gets weakened, underlying problems hamper recovery, infection sets in, doctors do their best but it's futile. While personally it was devastating, medically, it was unremarkable. Any objective analysis based on medical knowledge would have assumed that my grandfather was about to die. But he didn't. He survived the night and by the morning, he had rallied. The next day, he was off the oxygen. The day after that, he was sitting out and eating some custard.

I have often seen this happen; patients you are convinced will follow a clear, definable illness-trajectory prove you wrong. It's this unpredictability that makes medicine so fascinating; the fact that the body has a remarkable capacity to confound expectations. Even for those with a terminal illness, there can be no certainties. It's for this reason that I despair of the Government's new treatment pattern for palliative care. The "Liverpool Care Pathway" involves a series of tick-box assessments, which aim to assess the likelihood of death in patients deemed to be terminally ill in hospitals, nursing and residential homes.

Under these guidelines, being rolled out across England, patients can have fluid and drugs withdrawn while on continuous sedation until they die. In a letter to this newspaper last week, experts in palliative care raised concern about this system, highlighting that this approach can mask the signs of improvement. They argued that "forecasting death" is an inexact science. I think there is a valid argument for withdrawing treatment from patients in pain and distress and making them comfortable.

As doctors, we must be aware that actively treating someone can unnecessarily prolong suffering. For this reason there is no doubt that doctors need guidance on how to manage those patients with terminal illness. But any doctor knows that the decision to withdraw treatment is an incredibly complex one, involving professionals from a wide range of disciplines including a palliative care team, and can never be as simple as filling out a sheet on a clipboard. As frustrating as it is to those in power, medicine cannot be reduced to a series of tick-boxes. Things just aren't that simple. It's why medicine is talked of as being as much an art as a science. It operates in uncertainties and requires reflexivity, adaptability and judgment that a reductionist approach can never do justice to. A bureaucratic approach to medicine is that it stops professionals from thinking. It stops them from questioning their decisions and from seeing each patient as an individual. Not only does this result in dangerous complacency, it denies the wonder of the human body. On paper, my granddad was about to die. In reality, against all the odds, he rallied and although he's still in hospital, is doing very well. He's probably reading this now. Get well soon Gramps.

Predicting death in a time frame of three to four days, is not possible scientifically

Professor Pullicino

Nothing is ever a foregone conclusion. We are not Gods: we cannot tell with certainty, but must work with the situation and the individual.

I have highlighted pertinent sections of Max Pemberton’s contribution to demonstrate how the LCP removes all responsibility for decision-making, as is illustrated in this young doctor’s account:

AUGUST 11, 2012

On Call Week: Liverpool Care Pathway, STAT

Apologies for the delay since my last post. I was on call in a hospital that seems to confuse ‘on call’ with ‘how to avoid hiring locums’. Usually, when a junior doctor is on call, the other juniors in his or her normal team step up and get the ward jobs done. I can imagine it would be an excellent team building experience, ranking alongside mummifying the teacher in toilet roll at the end of the summer term. The folks at Princess Royal Hospital decided it would be even better for our team spirit if the only junior doctors on the medical admissions unit went on call together, leaving no one to attend the post take ward round or do the ward jobs. We had no choice but to continue with our normal jobs, whilst being responsible for clerking in every new admission to the hospital and providing cover to all the wards and of course attending all emergency calls. Our survival is an achievement worthy of an Olympic gold, and though I feel multiple human rights have been violated in the process, I am definitely a better doctor for it.

There were many learning experiences I want to share. Perhaps the most poignant one was writing up the Liverpool Care Pathway for an 87 year old man with multiple co morbidities and a likely terminal episode of pneumonia. I saw the consultant write up the drug chart in A&E in a matter of minutes at around 0930. By 1400, the patient was an AMU and the drug chart had gone missing. The patient had hours to live at best and my consultant, who was the only person in the hospital who knew this patient, was in a meeting. I hadn’t even seen the patient when I was asked to re-write his LCP medication.

My stream of consciousness went something like this: What dose of morphine should we use? I don’t know if he is opiate naive…does it matter at this stage? Can an F1 write big doses of morphine up? Oh, he’s on oxygen. Does that have to stop? It’s symptom relief only…but does the oxygen make him feel less breathless? Maybe we could monitor his sats and see if he needs it…but hold on, is that invasive monitoring? He looks dry, and I’m pretty sure the LCP says that actually you can use artificial hydration, I remember a case study on the GMC website. How can I tell if he is agitated, or in pain? Do the family decide…

As ever, when in doubt with a prescription, I speak to a pharmacist. These are the most amazing people in the hospital. They are fountains of knowledge raining on the gasping fish out of water that is the F1 asked to make a decision about which drug to use.

“Hi. I need help.”

“What is it?”

“I’ve been asked to prescribe the LCP to a terminally ill patient. How do I write up a syringe driver? How do I decide the rate and dose? How do I…”

“Here.”

She produced a LCP booklet that was about 30 pages long. I started reading from the front, which felt like opening a new TV and reading the company propaganda from Sony when it’s pretty clear that the things I really need are going to be later in the booklet. I never understand why companies insist on selling you the product in the first few pages after you have clearly just bought it.

I skipped forward to the prescribing section. There were five pharmaceutical targets to the care:

1. No pain

2. No vomiting/nausea

3. No agitation/restlessness

4. No respiratory distress

5. No respiratory secretions

The management of each of these depended on whether or not the patient was already experiencing the symptom. If the patient had the symptom, an appropriate drug should be written up as a syringe driver with a PRN subcut breakthrough dose. If the patient were not yet experiencing this symptom, then a PRN dose should be prescribed. As I began attempting to fill in the prescription chart, I realised I could not write anything unless I knew what the particular needs of my patient were. I decided to see the patient.

The patient was a tall man who had clearly lost weight recently. Folds of skin hung loosely off bones that are not meant to be so easily visible. He was breathing rapidly but with shallow breaths, with each inspiration accompanied by what sounded like basal crepitations but amplified and coming out the mouth. He did not seem to be in pain, but how do you tell in a patient who is not verbalising or even vocalising? He was as peaceful as he could be with all the secretions in his respiratory tract, and his respiratory rate was around 16.

I asked the nurse looking after him what she thought about his symptom control over the last few hours. I also spoke with his daughters to work out what symptoms (if any) were bothering him most in the last few days.

For pain, we looked through the notes, including his previous prescriptions, and there was no suggestion of any pain nor any history of painkillers above PRN paracetamol. I decided to use PRN diamorphine 10mg s/c for pain control based on   the LCP recommendation.

The patient had not been vomiting or expressed any nausea. PRN haloperidol 1mg s/c was the medication of choice for this scenario. As the patient appeared to be opiate naive, and 10mg diamorphine is a pretty big first dose of opiate, there was a significant risk of inducing vomiting in his last few moments alive, which needed antiemetic cover.

The advantage of haloperidol was that is was also useful for agitation and restlessness. The patient had none of that at the moment, so a PRN dose was all that was needed. The other option recommended was midazolam, which would be more sedating. As his daughters were around and presumably wanted to speak with him, I preferred the less sedating option.

I have since learnt that respiratory distress is often tied to anxiety in the dying patient, and both should be treated together. Relaxation exercises and physiotherapy, as well as basic treatment like sitting the patient up if tolerated, can be helpful. Medically, morphine can be used PRN. There was no need to write up any additional medication in this case. We decided that oxygen was not needed, as the mask was probably uncomfortable and as the respiratory rate did not increase with the oxygen off, the patient probably was not in respiratory distress. I realise that I am making the assumption that respiratory rate and respiratory distress have the usual relationship that they have in non palliative medicine. If anyone has anything to add on this I would be really grateful.

Finally, the respiratory secretions. The patient had symptoms, so needed hyoscine hydrobromide. I gave this as a subcut syringe driver over 24 hours, with a PRN top up as needed.

I didn’t have long before I was back to my usual on call routine of pretending to be in 3 places at once. But just for a few minutes, I felt like a doctor who was independent from the chaos in the rest of the hospital. I was making the care of my patient my one and only priority, and it was rewarding.

Patient UK 

Tees, Esk and Wear NHS Trust’s implementation of the LCP

I have highlighted pertinent sections of the young doctor’s contribution to demonstrate how the LCP removes all responsibility for decision-making.

An 87 year old man is described as having co morbities. In medicine, co morbidity describes the effect of all other diseases an individual patient might have other than the primary disease of interest. A ‘likely’ terminal episode isn’t even a diagnosis.

As for being an ‘AMU’, patients are routinely shifted out of A & E into the AMU (Acute Medical Unit) as a box-ticking, ‘creative accounting’ device to reduce apparent waiting times and make everything look good on paper.

By 14.00, the drug chart written up by the consultant, the only person in the hospital who ‘knew’ this patient, had gone missing. Even so, the young doctor who ‘hadn’t even seen the patient’ was asked to re-write the medication!

The LCP recommendations are as highlighted further down in the young doctor’s account.

If the symptom is there, prescribe; if it is not, prescribe in any case! The LCP is a self-fulfilling pathway that excuses the actual responsibility of decision-making.

But the young doctor, from his account, considers his individual patient. Is the young doctor learning what Max Pemberton calls the 'art' of medicine?

Here is a young doctor actually taking responsibility for decision-taking, making 'assumptions' from his own clinical experience, which is all any good doctor can be expected to do.

The young doctor acted, clearly, according to what he felt were his patient's best interests. It is only to be hoped that the outcome was not already pre-determined by being placed on the Liverpool Care Pathway.