Month: October 2017

From the front

 

Victoria, a new consultant, pushed for the procedure. It was, as they say, a ‘multi-disciplinary decision’. A consensus had been reached and the views of all those involved was clearly documented, but it was Victoria who made it happen. She had seen that Mr S. would go nowhere until a decision was made. Due to the complexity of his situation (a chronic disease with a rare complication), touching several specialties, there seemed to be no leader in his management; no overall owner. So, Victoria, who had met Mr S. several times and felt that she knew him quite well, decided to ‘own’ this episode of care. Through emails, corridor chats and a couple of cameo appearances at specialty meetings, she brought Mr S. to the eve of the procedure.

It was performed rarely, in any hospital, and Victoria, being no surgeon, did not know exactly how it was done. Nevertheless, the surgeon who agreed to do it (reluctantly, she felt) was known to be an expert. There was risk; how could there not be, given the complexity, and the proximity of the pathology to the brain? But the surgeon would explain this while obtaining Mr S’s informed consent. Not that Mr S. had much choice. To do nothing would see him die of the complication at some point in the next 12 months.

Victoria went to see Mr S. on the morning of the procedure. She didn’t see it as her business to delve into the risks, and she knew that Mr S. had given his consent already. A porter was waiting by the nurses’ station with a piece of paper in his hand asking which bed Mr S. was in. It was time for him to go to theatre. So, with the porter circling the bed, Victoria wished Mr S. well and promised to see him in a couple of days. Not tomorrow; that might be a bit too soon. Mr S. nodded. His smile was not full. Victoria got the impression that he had more knowledge of the procedure than she did.

Victoria walked away feeling pleased with herself, for steering her shared patient through the Byzantine processes that can seem to slow the progress of patients in the NHS. Mr S. was getting what he needed, at last.

Next day Victoria headed straight to clinic. She was too busy to think about Mr S. At lunchtime he crossed her mind. He would probably be in the ICU now, recovering; or, if everything had gone very smoothly, on the specialist surgical ward. Over lunch she looked him up on the computer. Yes, still in ICU.

On the way to her afternoon commitment she ran into the surgeon.

                “How did it go?” asked Victoria, brightly.

                “Didn’t you hear?”

                “No. What?”

                “He stroked out, massive embolus came off the aorta. The whole left cerebral hemisphere is swollen, the neurosurgeons had to do a craniotomy overnight.”

                “But he’s…”

                “Alive, yes, but there may not be much…” He tapped his temple.

                Victoria stepped back, and leaned against the wall.

                “Are you OK?” she asked of the surgeon.

                “Me? Yeah, fine. Tiger country, you know, that sort of operation.” He walked away, unflustered.

Victoria was distracted all afternoon. Her body language was automatic, her responses generic. She knew it would not be helpful to anyone for her to visit Mr S. He was being looked after well enough.

On the way home, through the blurred background and streaky lights visible from the train window, she saw Mr S’s future. It was nothing like she had imagined. It was not what she had promised him.

Now she regretted her assertive approach. It was due to her negotiating the blocks, driving the reviews, nudging the co-ordinators, that Mr S. had been listed for surgery. Her prints were all over this process. She felt responsible.

The residual weight of that responsibility, a leaden blanket, slowed her down as she walked home from the station. Her husband asked what was the matter, and she explained. He, a non-medic, saw it another way. There had been no wrong done here. The operation was indicated, all were agreed. It was bad luck… a final bit of bad luck compounding a life afflicted by bad luck. Victoria nodded and smiled. Yes, that was the rational approach.

Because Mr S’s clinical needs had changed, Victoria had no ongoing role in his management. Other patients displaced the acute concern she had developed for him. His name appeared in a morbidity and mortality meeting, but his ‘outcome’ generated no controversy.

Later, long after he had died, Victoria met other patients who needed strong advocacy from someone to take their management forward. Sensing that these patients were entering territory full of risk, Victoria did what was required of her, offered her opinions, and contributed to the consensus. Although the speed of decision-making was often slow – or deliberate, a better word – she was comfortable with that. She did not push things forward. Let management plans evolve at their own pace. Byzantine processes have developed for good reasons. Sure, there might be occasions where she needed to lead from the front and make things happen – in those areas where she was the acknowledged expert – but in other circumstances, from now on, she would go with the flow.

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The edge

There isn’t time to go into every complaint in a typical clinic. There just isn’t. So, however open my initial question (‘How are things?’), I narrow down to the important matter quickly. Most patients understand this, and tacitly agree to drop other concerns. It sounds like bad medicine; it is certainly non-holistic, but it is real life. If symptoms unconnected to the condition that brings a patient to the clinic are explored for too long, less time will be spent pursuing the potentially dangerous diagnosis. Therefore, patients receive little more than sympathy and a recommendation that they had ‘better see your GP about that.’

Sometimes patients insist though. When this happens, it is necessary to find the language that combines genuine interest (after all, to dismiss something that causes anxiety is just rude) and skilful management of the time-limited interaction. However, if despite the nuanced nods, silences and redirections, the primary issue continues to be relegated to the background, less subtle tactics are required. Perhaps, ‘Sorry Mr ______, we really should concentrate on what your GP wrote to me about,’ Or, ‘I can tell that’s causing you some real problems, but I’ll have to ask your GP to refer you to another clinic…’

Recently, I found myself in this situation. I had finished examining the patient and was sitting at the desk, looking at x-rays and blood results, trying to work out what tests to arrange next. From the couch my patient returned for the third time to an irrelevant (to my mind trivial) complaint. Filtering his words ruthlessly while I concentrated on the most efficient path to a final diagnosis, I mumbled something half-hearted and non-committal. There was a pause. He rose from the couch and said,

‘Oh, forget about it then.’

The sharp edge to his words pulled me out from the clinical, impersonal space into which I had fallen. One rarely hears such a tone. I saw that I had been rude. I turned in the swivel chair and back-pedalled desperately,

‘No, it’s important! Sorry! Have a seat. We need to think about how you can get it sorted…’

Gradually, the consultation was retrieved. Left as it was, the encounter would have gone the way of many hospital appointments – into the ‘he/she barely listened to me’ category. We discussed the other matter, and I promised to do something. He left content (I think, I hope). The appointment overran. But I owed that, for losing sight of what mattered to him, and steering too close to the edge of a precipice down which trust can easily be lost.

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Reputations: the light and the dark

‘Light in the darkness’ by Pat Cegan

 

A recent thread on Twitter brought up a subject that is really spoken about. Elin Roddy kicked it off with a comment that patients admitted to nursing homes should routinely be engaged in conversation about their preferences towards end of life. With habitual frankness, she later commented that there is a danger that those working in hospitals who are more willing and able to do this, run the risk of gaining a ‘reputation’. Others confirmed that they had indeed become known in their Trusts as being prepared to discuss resuscitation and sign DNACPR forms.

This is something that has bothered me for a long time, being one of the self-acclaimed “willing”. What if a doctor acquires a reputation as being comfortable with the fact that their patients might die? Might that realism be construed as nihilism? Might they come to be regarded less as a saver of life, but rather an usher into the next? Uncomfortable!

Doctors lie on a spectrum. Some cannot bring themselves to consider the possibility of death, and continue to propose active treatment even when the patient does not seem to be responding. Others readily identify signs and symptoms indicating that life expectancy is limited, and are prompted to initiate a (sometimes) difficult discussion about end of life care. Some move across different points on the spectrum, but it is quite possible that they feel at home near one end or other.

If a doctor actively seeks the signs of imminent dying in the belief that they will save patients the burden of futile treatment, there is a theoretical danger that they will fail to recognise opportunities for saving them. A doctor on the other end of the spectrum may identify ‘survivors’, and during their career may be credited with helping to save patients that others would have ‘given up’ on. However, in doing so they will probably push more patients through periods of aggressive and ultimately futile treatment. How many ‘failures’ it takes to justify one ‘success’? This sounds like an overly cold and impersonal way of looking at things, but it is a justifiable metric. In my recent paper on DNACPR decisions, I cited a study by Paniagua et al, who found that ‘29 octogenarian patients with cardiac arrest have to be treated with CPR to net one long-term survivor’. That ratio doesn’t look good.

As a patient, do you want your doctor to be the one who looks for any chance to cure, or who accepts that death is sometimes inevitable and changes their approach swiftly if things are not going well?

Of course, it all depends on clinical context, and on your wishes. However, in the 8th and 9th decades, when physical frailty is significant, comorbidities sometimes numerous, and mental capacity variable, the assessment very much depends on the doctor’s perception. Their instinctive position on the aforementioned spectrum may make a big difference.

They may be influenced by the type of patients they tend to see; their case-mix. A palliative care doctor will spend his or her days looking out for signs of terminal deterioration, and (almost by definition) will not be looking for opportunities to commence heroic new treatments. The elderly care physician will try to balance the burden of curative or preventative treatment against the realistic benefits. In my specialty, hepatology, I see patients in their third and fourth decade who look as though they are going to die in the next week or two (usually from multiple organ failure as a complication of cirrhosis). But, being young, they might pull through if we keep supporting them in the ICU. The reward, survival, seems to justify any cost – long weeks in ICU, months convalescing. But the price (not mine, the patient’s) to pay for failing to recognize that organ support is not working, and carrying on with fingers crossed just in case there’s a ‘turnaround’, is a prolonged death attached to multiple life-support machines.

Negotiating optimism and pessimism in these situations is difficult, and as I described in a recent case report, fluctuations in clinical condition that result in changes of tack on the part of the medical team can result in what looks, in retrospect, like vacillation. This goes to show that few of us are comfortable in diagnosing dying, and, especially in younger patients, will always choose life-prolonging/saving treatment if there is a chance, however small, that it will work.

There are other, perhaps less noble, drivers to continuing with aggressive treatment in the face of apparent futility. Perhaps a patient’s management is being led by another consultant or team, and it does not feel right or comfortable challenging their decision. Perhaps the underlying disease is well outside my expertise, and I do not feel confident commenting on the likely disease trajectory. Perhaps the team treating a patient are known to be therapeutically aggressive, and are bound to take suggestions that they should rationalize treatment badly. Perhaps I have seen too many patients die recently, and just want a good news story…

In my view, as a doctor who is generally comfortable and accustomed to recognizing futility, we must be careful not to lose the ability to see glimmers of hope, even if those glimmers are not apparent until the murky surface presented by illness is scratched away by a period of active, optimistic treatment. As long as we are able to admit defeat when things are going wrong, and brave enough to explain that to our patients or their families, it seems reasonable to sit on the optimistic end of the spectrum most of the time.

In this way we might witness recovery against the odds, feel good about, and use those cases to motivate and enthuse our teams. At the same time, there is no harm in being known as a realist who can identify the signs futility when they begin to accumulate, and who is willing to change direction even if that means pushing against the prevailing wind.

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