Month: October 2014

Saatchi Bill – a brush with autonomy

This debate pulls me in two directions. I know that the Medical Innovation Bill, which proposes that,

 

It is not negligent for a doctor to depart from the existing range of accepted medical treatments for a condition […] if the decision to do so is taken responsibly.

 

makes little sense in terms of encouraging medical innovation. It seems unlikely that useful discoveries will arise from individual patient experiences with new treatments outside properly conducted clinical trials. This is not to say that individual lives will not be improved or extended by treatments that doctors liberated by the bill are able to propose. An untested but logically promising approach to treatment might work, and without access to that treatment a patient’s chance of longer life* falls from x% (however small) to zero. But, should they benefit, their experience and ‘outcome’ will count for nothing in the larger world of evidence based medicine.

 

Allowing patients who might be entered into clinical trials to be beguiled by alternative and generally unsupported treatments will reduce the evidence base, and delay access to proven treatment for future generations. But what if the patient’s condition is not the subject of a clinical trial? Should the patient be denied an unconventional treatment just because his or her doctor finds themselves in an indefensible position? A common retort is, ‘How can you give a dying person a treatment that is not proven to work, but which may harm them?’ As quoted on the Stop the Saatchi Bill website, “There are many patients that we can’t cure, but no patients we can’t hurt.”

Lord Saatchi’s introductory speech in the Lords was emotional, describing the common indignity of the dying and the powerlessness that is brings.

 

‘…those condemned by cancer suffer a worse fate than the worst mass murderer. While they await execution, they are tortured. For them, hair loss is the good news. Less good news is that their treatment regime—the drugs and the cycles of their administration, and the surgical procedures—are often 40 years old. They create the same symptoms as the disease: nausea, diarrhoea, vomiting and fatigue. A beautiful woman’s legs turn into elephant’s legs; her arms begin to make a heroin addict’s arms look attractive…’’

 

How could a person in this situation not be offered an alternative? The emotional heart of the speech draws us into a perhaps under-regarded side of the argument – patient autonomy. To put it starkly, ‘Why shouldn’t a dying patient try treatment X?’ If the patient wants it, why deny them the access? If there is a risk of harm them – so what, as long as they give informed consent. It’s up to them. It’s their body.

The counter to this argument is that dying patients do not give fully informed consent. They are vulnerable. Their proximity to death has made them victims to false promises and unjustified hope. Stop the Saatchi Bill dwells on this –

Patients and those making decisions on their behalf will almost always want to try anything at all. This bill expressly permits harm and exploitation of this vulnerability and does nothing to promote shared decision making or patient empowerment.

And,

Sir Robert Francis QC says “It increases the risk to vulnerable patients of mavericks with irrational or unjustifiable grounds for proposing a treatment and those with commercial interests in promoting dubious treatments.”

And,

The Motor Neurone Disease Association says “There is a clear danger that the Bill could lead to the exploitation of vulnerable people.”

Are these arguments overly paternalistic? Most terminally ill patients have retained their critical faculties, and are not likely to be hoodwinked. Although dying, they are not bedbound or semi-alert, nodding weakly to whispered suggestions from the ‘quack’.

I wonder what I would want. It is a difficult and potentially insensitive exercise, imagining what it would be like to be terminally ill. I see myself sitting in the oncology clinic, hearing that my recent scan shows that I have progressed on chemotherapy and that there is no more to be done. I pull a newspaper cutting from my pocket, and ask about a new, unproven, scientifically dubious therapy. My doctor shakes her head and says,

“Ah yes, I’ve have heard of that. There’s very little evidence to support it. And the experts disagree that even the theory is right.”

“But do you do it here?”

“No. It’s not licensed, it hasn’t been funded…”

“But I’d really like to try it.”

“I’m sorry, the NHS just doesn’t do it.”

“Can you refer me to a clinic that does though?”

“I’m really sorry, I can’t. If there were side effects…”

And she is worried now, worried about her reputation, the accusations of being a maverick. I don’t understand why she can’t refer me – it’s my choice, and if it kills me faster then so be it. I’ll sign anything. I want to try it. Hope is what I need, and in this treatment I see hope, even if others more knowledgeable than me, see ‘snake oil’.

Stop the Saatchi Bill says the bill has been promoted as a way to,

“empower patients to demand that every possible route should be tried to prolong their life and improve its quality.” However, the power to choose or reject new treatments remains with the doctor. While the patient can suggest a treatment, the doctor can still reject it. The bill does not give patients the power to make the doctor consider any new treatment at all.”

This is true. Just because a patient wants something doesn’t mean the patient gets it. This applies to cardiopulmonary resuscitation, for instance. It’s the doctor’s choice at the end of the day. For all my instinctive warmth towards a Bill that appears to enhance patient autonomy, the truth is that towards the end of life, or in circumstances of grave illness, we operate in a fairly paternalistic system.

So am I for or against? The part of me that regrets a terminally ill patient’s inexorable loss of autonomy  would reject the arguments listed in Stop the Saatchi Bill… but I would not seek to change the current status quo. Lord Saatchi was I think wrong to say,

‘All cancer deaths are wasted lives. Scientific knowledge does not advance by one centimetre as a result of all these deaths, because the current law requires that the deceased receive only a standard procedure—the endless repetition of a failed experiment.’

My perception, sitting regularly in liver and pancreas cancer multi-disciplinary team meetings as I do, is that many die within clinical trials which are by definition attempts to break the ‘endless repetition’ of treatment. Innovation is alive and well, albeit progressing at a slower pace than those who have contracted serious disease would like. The pace is slow because the method is deliberate. And the method is deliberate because safety in paramount. Frustratingly, it is future generations who will benefit from the suffering of the present.

 

* The Bill is directed at doctors who look after the terminally ill, but does not mention terminal illness in its text.

 

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Interactive Ward Ethics 4 – Independent

Here is the fourth Interactive Ward Ethics exercise – this one is called ‘Independent’. In it you will decide, for Nina, how to manage a patient with a very low blood pressure. The delicate issue here is when to escalate, or ask for help, and the consequences that I have focussed on relate not to the patient’s outcome, but to Nina’s psychological development as a doctor. Escalate too soon, and she risks censure – carry on too long, and she risks accusations of over-confidence. These concerns are ever-present in the minds of trainee doctors.

Clicking on each option will link you to the next section, and you can use your back and forward arrows to go back in time. In the Summing Up page are links to two papers that I have written on the topic.

Enter Independent here.

Also, try:

Collusion

Dangerous

Obedient

Imagining Ebola: fear and duty

Some weeks ago I had reason to reflect on the professional obligation of doctors to treat and touch patients with possible Ebola virus infection. A man came in with a fever and diarrhoea, having returned just the day before from Africa. The scenario rang alarm bells, but the country from which he had travelled was not affected by Ebola, and a quick search on the internet combined with a call to the microbiologist reassured me and the clerking SHO (who had already seen him!) that the chances of infection were so low as to require no special measures. There was no reason to escalate, alert the rest of the department or hurry the patient into isolation.

But as I went to see him, and as I touched him, I wondered – What if this is the first case to come from ______; what if, within the conurbation where he was doing business, contact was inadvertently made with someone who had travelled from an area with a heavy burden of infection? What if?

Since that encounter (which came to nothing), the reality of meeting a patient with early or established Ebola infection has become more tangible. It seems inevitable that somewhere in this country a nurse, a doctor, or a member of non-clinical staff, will meet such a person. This leads me to wonder how strong our professional duty is to become involved in their care. It is a pertinent question – nurses in Liberia have threatened to strike unless ‘danger money’ is paid.

I found a document from Rhode Island which makes explicit the duty of licensed healthcare professionals to treat patients with Ebola. Not to do so is regarded as a dereliction of duty, and is punishable. It begins with the question,

But what if the healthcare provider is at risk of harm from the patient? May a licensed healthcare provider refuse to treat a patient? A patient, say, with Ebola?

Then,

The risk of disease transmission – in and of itself – does not provide grounds for the relaxation of a provider’s duty to help a patient, especially because the risk is understood and readily mitigated.

A parallel is then drawn with HIV, which caused similar panic and concern. Then, the document states –

In Rhode Island, licensed healthcare professionals in active practice are obliged to treat and/or care for Ebola patients, while minimizing the risk of Ebola transmission to self and others. Failure to do so is a potential breech of Rhode Island’s licensing laws for healthcare professionals, and warrants thorough investigation and potential sanctions. Therefore, healthcare providers must reflect very carefully before refusing care to a patient.

Lastly, the ‘spirit of Emory [University Hospital, Atlanta]’ is described, where,

…staff members volunteered to care for Ebola patients; some staff members voluntarily cancelled vacations to do so. This spirit reflects the best attributes of those who share our professions.

 

This is the ideal, and it is impressive. But… when faced with the situation, I wonder if the sense of duty, or even the fear of punishment, would fade into insignificance compared to the instinct for self-preservation.

Many of the medics representing this nation in the fight to control Ebola at source are from the armed forces, where duty is more rigidly imposed. Perhaps one advantage of utilising the military resource, aside from its logistical efficiency and well practised ability to arrive in strange places and set up hospital and clinics, is the fact that individuals are far less likely to waver in their duty at such times. In the US,

Several soldiers said their families were concerned about the deployment, and unlike past ones, they got little advance warning. Some said they felt better after the training, feeling they would be safe. But it left others unnerved.

Maj. Jim Wade, who has two young kids, said he was confident he could remain safe. Despite the dangers, he said, “it’s our job.”

What of the rest of us, the everyday doctors and nurses who work quite happily among the sick, but very rarely put ourselves in danger? Are we going to volunteer, are we going to step forward, to treat patients when the penny drops they might have Ebola? Or will we cite our inexperience, and purposefully leave the scene. Or rather reluctantly and trustingly proceed, rather like the US police deputy who entered an infected man’s vacated house? He is reported to have said,

“In my opinion, I think things could have … maybe taken a step back… In law enforcement, we ‘what if stuff’ all the time. If this happens, this is what we can do; if this happens, well this is our plan B. And so, maybe in a situation like this, it could have been a situation in which maybe we ‘what if it’ a little bit more and maybe plan a little bit better for things.”

 

Does being a healthcare professional necessarily require a greater than average predisposition to self-sacrifice? I have drifted into this subject before, in a post called The needle and the damage done.’ There I describe the acute and damaging psychological impact of blood splashes and needle stick injuries. It is the uncertainty that does the damage. Knowing myself, I think I might not be the first to step forward. There is too much to lose, personally. Nurses in Spain have contracted the infection despite all sensible precautions. There are protocol ‘breaches’. I am human, I am selfish. But then again, if a patient was admitted under my care, I would have no choice as a caring professional but to become involved, and to do my level best to protect myself and others. To walk away would sow a seed of infinite regret, and a sense of cowardly shame.

As the possibility of meeting an Ebola patient becomes more real, we need to ask ourselves how we will respond, and, perhaps, make psychological preparations. To answer the question in an informed way we need to be reassured that the preventative systems in place are rigorous, and that their safe application is achievable by staff who have not had the benefit of rigorous training.

oOo

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First hurdle: thoughts on new resuscitation guidelines

A new BMA/RCN/RC resuscitation guideline was published this week (accessible here, link at bottom of press release). It incorporates the recent Janet Tracey judgment, in which a person’s (human) right to be involved in their own resuscitation decision was affirmed. Deprivation of this right by doctors acting unilaterally and without appropriate discussion is now illegal. The guideline anticipates the situation that many of us feared, following the judgment, in which illness, circumstance and time do not allow such a discussion (either with the patient or with close relatives), and offers reassurance to doctors that if they are sure resuscitation would not work, there is no obligation to try. In this area I found the document very clear and helpful.

 

However… what caught my eye was an apparent easing of the pressure on clinicians to engage in DNACPR discussions.

 

The first step in the decision tree looks like this:

bmaresusalgorithm1

 

What does ‘clear possibility’ mean? Manifest cardiac instability? Severe illness? Anyone coming into hospital can suffer an arrest, so one must look to the text for more guidance here. The relevant paragraph in the summary is…

 

  1. If cardiorespiratory arrest is not predicted or reasonably foreseeable in the current circumstances or treatment episode, it is not necessary to initiate discussion about CPR with patients.

 

This seems to go against the philosophy of identifying very frail patients on post-take rounds or early following admission, and having the discussion ‘just in case’. Most arrests are unpredictable and unforeseeable –  otherwise we wouldn’t let them happen, or we would warn our patients and let them prepare for death (or for dramatic life-saving interventions). I find this sentence troubling. It wonder if it will take the ‘heat off’ clinicians on their ward rounds. Currently I encourage colleagues to consider engaging in DNACPR discussions if patients are very frail or have end-stage disease, even if they are not obviously deteriorating in front of their eyes. This guidance seems to undermine such a pro-active approach.

Further on in the text (pages 7 and 8) this area is explored in more detail. This detail makes me wonder if I have misunderstood the algorithm.

 

– There is no ethical or legal requirement to initiate discussion about CPR with patients, or with those close to patients who lack capacity, if the risk of cardiorespiratory arrest is considered low.

That sounds reasonable.

 

In some cases there is an identifiable risk of cardiac or respiratory arrest, either because of an underlying incurable condition (such as cancer or advanced heart failure), because of the person’s medical history (such as myocardial infarction or stroke), or current clinical condition (such as overwhelming sepsis).

This suggests that end stage disease is a risk for cardiac arrest, and is a flag that should prompt the clinician to discuss DNACPR. The patient with COPD requiring home oxygen who is admitted moderately unwell with an infective exacerbation might fulfil this criteria, although a diffident clinician reading the algorithm (and paragraph 2 in the summary) might well conclude that there is nothing in the clinical situation to suggest a ‘foreseeable’ arrest.

 

We read further…

– If there is a risk of cardiac or respiratory arrest, it is important to make decisions about CPR in advance whenever possible. There should be a full clinical assessment of the chances of a successful outcome.

Nevertheless it is crucial that an anticipatory decision about CPR is considered when a person is at risk of death or cardiorespiratory arrest. In a hospital setting, appropriate triggers to consider or review a decision about CPR include an unplanned or acute admission to hospital, improvement or deterioration in the person’s clinical condition during hospital treatment (especially but not exclusively deterioration requiring review by an ICU outreach team), or transfer to a different clinical team or care environment (e.g. change of ward).

Now this seems to justify my own tendency to at least consider a DNACPR discussion after admission to hospital, even if the severity of the acute situation does not suggest that death will occur in the next few days. But it appears to contradict what came before.

 

So, to conclude – I find this document helpful in many ways, but somewhat confusing and unsupportive of the general trend which is to be brave in engaging our patients in discussion. Most doctors would agree that we do not talk about dying enough. Although we do not wish to drag our patients into difficult, surprising or unheralded conversations (when the reason for admission is relatively trivial, for instance), hospitalisation does represent an opportunity to at least consider the uncertainties that progressive disease brings.

From my reading of this document, clinicians who find the whole area difficult and distasteful may feel justified in retreating from it at the first hurdle.