Medic: Why 'doing everything possible' to save a patient's life is sometimes wrong

He is not alone.

I met him unexpectedly leaving the hospital on a dark evening last November. He was not his usual self but flat. He was angry.

“I have spent half the day at loggerheads with my senior. He told me to set a patient up for non-invasive ventilation. But the patient didn’t want it.

“The man is dying. It was going to achieve nothing. I stupidly did his blood gases [a test that measures oxygen and carbon dioxide in the blood] and fed the results back over the phone. All I got was an order to start the NIV [non-invasive ventilation]. It was terrible”.

In fact, Wayne decided not to start the NIV. Ethically it was the right decision, but it came at a cost. Not to follow orders is brave when you are a junior doctor.

Before judgment is passed on his seniors, both were hard at work in the emergency department and the outpatient clinic.

In the end, there were good outcomes. The patient received palliative treatments and died peacefully. The case was openly discussed later at a multidisciplinary team meeting.

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Wayne was supported in his decision not to deliver treatment that would have been futile and contrary to the patient’s wishes.

All sorts of questions emerge out of this not-uncommon situation.

The problem is that in the delivery of acute services in hospital, the 'system' is driven by the idea that when a patient deteriorates, more is better. More investigations. More treatments. Regrettably it is often only when all else fails that it is acceptable to think differently.

This matters. Nearly 30 per cent of patients admitted to Scottish hospitals are in the last year of life.

In many instances, saving life is the right thing to do. But in some it is not.

Giving the patient ‘the benefit of the doubt’ is an escape clause that doctors use when grappling with uncertainty.

But there comes a point when doing everything possible is simply wrong. This is not just because the medical treatments may be ineffective, but because they are so often harmful.

Especially in later years, a patient’s thinking may shift in favour of quality not quantity. But in an emergency their wishes may get swamped by fear and urgency, or ignored by doctors.

Wayne’s patient’s wishes were taken on board. Wayne’s decision was the right one.

Moral distress is experienced when hospital staff feel that the right thing to do is different from what they are required to do. It is well-documented among nurses working in intensive care.

In a Europe-wide survey of ICU staff, the top three reasons for wanting to quit included too much work and too little pay. Moral distress was ranked number one.

The response to repeated experiences of moral distress is that nurses quit their jobs and doctors become emotionally detached: “I just do what I have to do and don’t think too much about it”.

It is tragic that the compassion and empathy of many young doctors gets crushed by the system that is meant to value these characteristics. For those who do not harden their hearts, moral distress may eventually contribute to burnout.

It’s not just ethical tensions that cause moral distress.

Pressures that arise in under-resourced areas of the NHS, if continuous, may also contribute: “Rushed, missed, or risky care will inevitably lead to fear and feelings of loss of control among conscientious medics”.

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The pandemic has ushered in new dimensions to moral distress.

In the first wave, the need to triage patients - that, is allocate treatment and resources selectively - generated tensions in hospitals. Then the experience of moral distress shifted to care homes.

Lisa* is a nurse in her late thirties who has worked in a Scottish care home for 12 years. She is dedicated to her work.

“Lots of things were hard in 2020, but the hardest of all was to see really frail people die on their own,” she said.

“To shut adult children out and then for these people to remain isolated and die … it was cruel.

“One night I allowed two people in to spend the last few hours with their mother who was dying of Covid. It was against the rules. I spent days worrying that I might lose my job.”

Lisa’s experience highlights a common thread in care homes and hospitals that protocols or regulations are not necessarily ethical for all of the people, all of the time.

Mitigating risk should not always be the top priority. Attempts to avoid death in the care home setting paradoxically made the experience of dying a lot worse for many. The crisis of conscience experienced by someone like Lisa is because they had the courage to do the right thing.

In the ‘system’, standards of care can morph into laws that must not be broken regardless of the consequences. Junior doctors in particular often stick rigidly to a protocol rather than risk criticism.

My consultant colleague Colin* once came into our shared office looking strained. He had just been rescued by the security staff from a man whose mother, aged 86, was in our ward. She was dying of terminal bronchopneumonia.

A decision not to give further antibiotics was being explained to the man. He lost it. “You f***ing well give my mother antibiotics or I’m going to kill you!” he roared.

As a clinician I know how difficult it can be to explain tough decisions to close relatives. In the circumstances of severe illness, everyone is stressed and anxious.

That makes it difficult to process complex information about an illness and its treatment. Perhaps there have already been difficult encounters with health professionals.

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For some, the news that a family member is dying comes as a shock and they want to put up a fight. But sometimes it’s the wrong fight. Relatives’ expectations can be unrealistic. Perhaps what they want for their mother or father is what they would want for themselves.

Disagreement with the proposed goals of treatment is not rare. But thankfully threats of violence are. In this case, further antibiotics were going to be futile. Worse, antibiotics would likely have prolonged the dying process and the lady’s suffering.

There were no winners. The man (I suspect) felt that his mother was being abandoned. And my colleague felt sickened by the experience.

The consequences of an incident like that can linger. Some clinicians (not necessarily Colin) decide to take the line of least resistance rather than face another traumatising episode. It’s not just conflict that demoralises; it’s the thought that what is right for the patient is avoided for all the wrong reasons.

Is there a solution to moral distress? The simple answer to this question is “no”. There are always going to be situations that create moral tension.

But moral distress as a recurring theme in the NHS should not be ignored. The well-being of healthcare workers is important. We cannot afford to lose highly trained staff. It’s the conscientious ones who suffer moral distress most and they are the ones to be valued most.

A number of ways to avoid moral distress are available – creating consensus about realistic aims of treatment, conscious avoidance of harms, and setting aside one-size-fits-all curative intent when it’s not appropriate.

When decision-making is shared, when a patient has discussed their values and priorities and these are honoured, this goes a long way to avoiding doubts about what is right.

Then there is harms avoidance. It should be a priority especially in the frail and vulnerable. There is an old maxim that says “primum non nocere”: first, do no harm.

Wayne and Lisa and Colin were aware of this when deciding the right thing to do.

But what about the patient who, after briefly responding to treatment, deteriorates further? When should we let go rather than cling on? Moral distress is created when that dilemma is pushed aside and isn’t openly addressed. It is not easy but the question needs to be grappled with.

Nurses often know instinctively when clinging on is the wrong thing to do. But letting go is counter-intuitive to many doctors.

Perhaps if we agreed that modern medicine has limits and that being reconciled to human mortality doesn’t mean failure, then moral distress would be less frequent.

“Diagnosing dying” is not morbid when it is truly needful. By all means let us emphasise the power in medicine to save and sustain life. But let’s also avoid the problems that come from insisting that sticking to the protocols is the top priority in urgent medical care.

Professor Taylor is a respiratory physician currently working in NHS Lothian hospitals. His views are personal.

* Names have been changed to protect staff identities