Month: July 2014

Thoughts of a Lord on the eve of a debate

— Announcement —

Welcome to the blog. Here you will find 100 posts exploring aspects of medicine that have preoccupied or challenged me during training and the first 3 or 4 years as a consultant.

I began to write in August 2012, and managed, against expectation, to produce one post a week for two years. I am now giving it a rest, although I’m sure I will come back to the blog when an observation, scandal or ethical dilemma grabs my attention.

I have collected and published these posts in three volumes, the most recent of which is ‘A Face to Meet the Faces’.

Thank-you for your support. I’ll announce any new posts via Twitter as usual.

 

 

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oOo

 

 

thoughts of a lord

Forgive the impersonation.

– – –

I’m not a true expert on assisted dying, but have become something of one with all the petitions, emails, personal representations and evidence summaries (collated by my excellent assistant). Recognising that care and compassion are abundant on both sides of the argument, I began to focus on the objective. Harrowing and personal stories are persuasive, and cannot be dismissed, but it is my duty to look up from individual tragedies and forward to the future where harms may arise. But what harms?

 

I am persuaded that there has been creep in the most liberal nations, where euthanasia is practised. I am persuaded that life may have become a little cheaper, and, dare I say it, a little less sacred in those places. But Falconer’s Bill isn’t about euthanasia, it is about patients taking fatal doses at the time of their own choosing. Doctors will do nothing more than facilitate the getting of the drugs, and sometimes the administration. Am I being naive here?

 

Can I be sure that the system will protect those who might not have requested AD if were not for the vulnerability of their position or the nudges and comments initiated by relatives, carers or unscrupulous others? Will there be a risk of subtle coercion over many weeks or months that ultimately drives a patient to request AD? I am not persuaded of that. A doctor involved in the assessment should question hard a patient, or a family unit, when a request seems to come out of the blue or appears inconsistent with prior impressions. Can I be sure that not one single such instance will occur? I cannot. There are no certainties in law, medicine or human behaviour.

 

And what of those doctors? They will be involved early on, when assessing a patient’s ‘settled intention to end his or her own life’, and when looking around the patient to ensure that there has been no familial coercion. Can we trust them? They are not perfect. Some are downright poor. But I do not see poor doctors leading to a lack of safety here; more likely, the poor doctor would fail to allow a patient the opportunity to discuss AD at all.

 

Will patients feel ‘guilted’ into choosing AD? I know of no evidence that they have done elsewhere, although I did read something to suggest that depressed patients are more likely to choose it. Depression, they say, is treatable. I might counter that depression is not surprising, and is not likely to be reversed in this context. I don’t mind that part of a patient’s motivation might be the fear of becoming or continuing to be a burden…that is part of the personal burden of illness, in my view. But the drive to have an assisted death has to come from the patient.

 

I seem to be talking myself out a Yes vote.

 

But wait. We must move forward. The supreme court has told us as much – admittedly in relation a different group of patients, those without terminal illness who actually require the physical assistance of a doctor or carer to do the deed. Nevertheless, we cannot stay where we are. The line, which has hitherto stopped doctors facilitating death in any circumstances, must be crossed at some point. If not this year then next, or the year after that. That much is clear to me. I am not comfortable with it, I would expect no-one to be comfortable with it, but to resist the move to patients being assisted in the organisation of their own life and death seems over-dogmatic to me.

 

Unencumbered by religious faith, I do not have to factor in the intentions or opinions of a overseeing creator. I feel for those of my colleagues who do, but am interested by the intervention of a retired archbishop. The ranks of the religious are by no means aligned. I am far more alarmed by the ranks of palliative care specialists. These doctors have dedicated their professional lives to the care of the dying, and their opinion must be respected. I don’t know any who support AD. Perhaps some do but are nervous about being seen to support something that seems contrary to the prime purpose of providing comfort and quality in life. But I am a little frustrated too, because I don’t see why palliative care cannot segue into AD if comfort cannot be provided. Why should a patient lose the option of AD just because they submitted themselves to the care of a group of doctors who are strongly opposed? I do not like the thought that a patient in a hospice might be barred from seeking AD, or might have be discharged in order to pursue the option away from the disapproving eyes of his or her palliative care team.

 

So it seems I’m in favour after all. But I will listen to the arguments, even though I have probably heard them before. There will be emotion, which must be allowed to touch one, but I will try to maintain the objectivity of the law maker. There will be thinly disguised religious motivation, which I must try to respect because I respect the people who are speaking. And there will be reassurances, that the slippery slope is illusory and the safeguards are adequate. I will vote in favour…but, on the threshold, I cannot guarantee that something will not hold me back. A sudden chill that I am belittling the value of existence and shattering the previously inviolate principle that human life should not be taken. I cannot guarantee that as I act to vote in favour, glimpses of other lives, wasted due to mankind’s failure to recognise life’s value – in battle, in innocent planes over war zones, on Middle Eastern beaches – will hold me fast and change my intention. I just can’t say. A vote like this is, for all the evidence one hears, is an instinctive affair.

– – –

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His burden

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I knew George would be the first to ask. He had heard about his diagnosis a week before the vote, and although he had never raised the subject with me (there was no need), I just knew he’d be the one. Metastatic oesophageal cancer. 78 years of age, but ‘biologically’ 65 – busy, reluctantly retired – until disease began to excavate the contours above his strong jaw.

I prepared myself for his questions as I drove to the house. In fact I prepared my defences. Never a great supporter of Falconer’s Bill, I recognised my duty to engage in the process of Assisted Dying if that was what my patients wished. I had already decided that I would not be one to wash my hands of it, to pass it on to more willing colleagues. If it was legal, if it was right – for my patients – I would sign the papers. But not today…I didn’t want to commit to such a process today.

He met me at the door. The ostensible reason for my visit was to assess him for chest pain that had come on overnight. The tumour had been stented ten days earlier, and I had told him to expect some discomfort. He was feeling better already, he quickly informed me. I set myself for a quick turnaround but he ushered me to the visitors’ chair. Then he got to the point.

“Paul,” (he had always used my first name) “I want to ask you something.”

“Go ahead.” And I knew.

“This assisted dying law. Will you promise to support me, if I choose it?”

“Well George, it’s only just been voted through, there’s a long way to go. I haven’t looked into all the details yet…”

“It sounds simple enough to me, you must know the criteria. Terminal diagnosis – yes. Less than a year – yes. Settled opinion – absolutely, I was settled on it even before I got cancer. And two doctors.”

“You seem to have decided very quickly George. You’re alright at the moment, aren’t you? Swallowing better. A bit of liquid morphine.”

“It’s knowing Paul. Knowing before it gets hold of me. I don’t want to start all this when I can barely get about, or barely talk for that matter.  It’s a high tumour, it might even touch my windpipe, the chap at the hospital said. That’s if the liver doesn’t get me first.”

“Perhaps I should record your opinion, put it in the notes, and wait…see how it goes.”

“It will not go well Paul. It is naïve to expect a good death.”

“Why? The hospice have already been in touch. You’re visiting next week. They’re great there. I go myself every other week to see patients.”

“I know. But I want to die before my symptoms are bad enough to require a hospice. They are reactive.”

“I’m not sure they would agree.”

“No disrespect, but they are. When I get bad they will put me on the list, when I feel awful they will increase the doses. By dying at the time of my choosing I avoid a trial of symptoms. I am dying already, look at me. But now I can control the timing…with your help.”

“Control. Isn’t that the point George? You don’t want to lose control.”

“Precisely. So what?”

“Is that a strong enough reason to ask me help you die?”

“Ah, Paul! I do worry about your feelings in this, but not quite enough to stop me asking. You’ll get over it.”

“But I need to be sure that I am assisting your death for the right reasons George. These…existential motives, you might call them, I’m not sure they are what the Lords had in mind when they passed the Bill.”

“I don’t think they were trying to cater for specific symptoms Paul. My distress is loss of control and autonomy, it is seeing those around me grieve while I still live, it is the determined stoicism in Lucy’s eyes that I don’t want to witness for longer than I have to.”

“You worry about Lucy?”

“Of course! It’s a huge burden on her. Huge. Physically, mentally.”

“That is a problem for me George. I cannot support assisting your death if it is primarily to relieve the suffering of another. It’s too…unclear, too…complicated.”

“We are complex Paul, the dying. We are at our most complex before the actual dying has commenced, but after we have been made aware that it is coming. There is no great clarity in my mind, let me tell you, except over this one point.”

“But George, it’s got to be in the context of unendurable pain and suffering. If you remain comfortable I, we, will not find a second doctor who is willing to sign the papers…”

“Aren’t pain and suffering subjective? It’s for me to say when they are or aren’t so bad. Not for you to tell me. And part of my pain is my family’s pain, and the thought of their increasing pain as I am increasingly diminished. You can’t isolate a dying man’s symptoms from their family. Lucy will be with me, and she has told me it is also what she wants.”

“I’m sorry George. Perhaps it’s too soon for me, as a doctor.”

“I understand that. But you will come back to talk about it again? Won’t you? You’re not turning away?”

“Of course I’m not. Let me think about it.”

 

oOo

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Introduction to ‘A face to meet the faces’

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This is the third collection of blog posts to be published since I started writing regularly in August 2012.  The title of this book, A Face to Meet The Faces, represents a change of focus. I am interested in describing the workings of the medical mind – all the ticks, clicks, springs and processes that are engaged before the first word is spoken to a patient. I do not suggest that the face we present is insincere, but it is professional, and it will not express our every thought. Occasionally, as Dev finds in ‘The good in him’, those processes result in an entirely wrong impression being given to those whom a busy doctor is trying to help. At other times our usual natures and inhibitions are challenged by special situations, and we find ourselves ‘Making deals’ (with patients who wish to self-discharge), or dancing along the fine line between treatment and bodily assault (‘A rare and unpleasant duty:  involuntary treatment and the deprivation of liberty’). Those normal natures can render us susceptible to pride (‘Diary of a medical anecdote’,Hollow Heroes’),  expediency (‘The perils of reassurance’) or paralyzing timidity (‘Being comfortable with uncertainty).

 

Elsewhere, subjects have grabbed my attention randomly (the Hurricane Katrina healthcare catastrophe for instance), or I have reacted to observations in the media (‘Bed X), or to important policy developments (such as changes in organ donation). The core preoccupations that fuelled the first two collections – end of life care, autonomy, resuscitation decisions, the Liverpool Care Pathway, medical futility – are still represented (Replacing the LCP, Notes on a judgment).

 

A new feature is the ‘ethical adventure’ or Interactive Ward Ethics section – a role playing, decision making exercise inspired by the Fighting Fantasy books I read as a child. The reader is asked to decide, on behalf of the well-meaning and conscientious young doctor Nina, what to do in a variety of challenging situations. There are three in this volume, and the idea is to roam vicariously through the actions of a sometimes luckless substitute!

 

It can do no harm to illustrate how we sometimes struggle to accommodate the emotional dissonances encountered in healthcare, although I do not pretend to set out solutions. The first and most important step, it seems to me, is identifying the challenges. I hope this collection of articles serves that purpose.

 

 

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The naive detective

Medical education provides those lucky enough to receive it with knowledge that allows them to see into the lives of others. It must be wielded with care.

 

During a brief foray into infectious disease medicine, I saw my virology consultant enter the lab in a quandary. In her lunch hour (they do exist, I have seen them) she noticed some blisters in the ear of a shop assistant. The consultant looked carefully, bought her shoes, thought about saying something but in the end held back. She was sure the assistant was brewing a case of Ramsay-Hunt syndrome*, a form of shingles which if left untreated can lead to hearing loss, facial paralysis and ocular problems. She asked us what she should do. Was it any of her business? What should she say, how should she broach it? Perhaps she was wrong. On the other hand the thought that this unsuspecting young lady might go on to suffer more, and for longer than was necessary, felt intolerable. My consultant went back next day…but I never did hear what happened.

 

As I acquired medical knowledge I began to make diagnoses on the street. It was exciting. I could practise the Holmesian trick of deducing conditions and partial life stories from signs that others might overlook; rashes, palsies, postures, gaits… The young lady with an oddly shaped face, blue lips and grossly clubbed fingers who used to walk slowly along the high street – I wondered how her life had been affected, and how much time she had left to her, having been born with an abnormal heart. The boy in the local park with a large port wine stain** on his face; I reflected on the toll that an associated tendency to epileptic seizures must have had on his parents. Was that a look of strain I saw on his Mum’s face, over by the swings? Such disembodied diagnoses, and the fanciful extrapolations that followed, reflected nothing more than privileged information. They served nobody. Better perhaps not to know such things outside the hospital or surgery.

 

There are of course occasions when knowledge is helpful. Most medical students keenly anticipate situations in which they might come to the rescue in a good Samaritan scenario. I listened in awe to the story of the cardiology conventioneer who decompressed a fellow airline passenger’s pneumothorax with a catheter over a coat hanger. Now that was cool! In my case I came across a motorcyclist with folded limbs, a sore stomach and the features of haemorrhagic shock. My emphatic description to the 999 dispatcher resulted in a HEMS helicopter being called in. They wrote to me a few weeks later, and let me know that his ruptured spleen had been removed as soon as they landed.

 

Good Samaritan situations are not always so clear cut. One night, just off Leicester Square, I spotted a woman slumped in a doorway. I ran over and assessed her level of consciousness. With my girlfriend standing behind me I checked the woman’s response to pain by pressing a knuckle into her sternum. Ten seconds later she came to and screamed at me drunkenly, just as a policeman arrived on the scene. He grabbed my arm and told me to get off her. My girlfriend and I left them to it. I have since walked past many inebriated forms in the shadows of the West End without rushing to their aid. I might watch discretely for thirty seconds, just to make sure that their chest is moving, and that they have not swallowed their tongue.

 

Even the most alarming diagnoses cannot bring me to transgress the boundary of privacy. Unless the person is my patient, unless they have been referred to me, I cannot justify whispering advice into their ear, or giving them a gnomic warning. The thin man with little red stars on his face*** and a subtle tinge of jaundice, standing at the bar… I know he runs the risk of developing liver failure unless he abstains, but I stand silently by, waiting for my pint. He probably knows. He has made his decision. What would he say anyway? He would probably, and quite rightly, tell me to ‘F___ Off!’. But…but…what if he has never been told that his liver is damaged? My uninvited words might open his eyes, drive him to his GP, and start him on the road to recovery.

 

But no.

 

oOo

 

* reactivation of the chicken pox virus, Varicella Zoster, within the geniculate ganglion. Treatment within 3 days of blistering with anti-viral medication can reduce the severity of the illness.
** Sturge-Weber syndrome; a vivid facial birthmark with underlying damage to the surface of the brain on the same side.
*** Spider naevi, dilated capillaries on the skin, suggestive of cirrhosis.

 

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Diurnal variation

Two old friends spot each other in the cafeteria of their local hospital. They know one another well enough, and have lived long enough, not to be embarrassed about being seen, but they keep the details of their medical complaints to themselves. So they talk about the doctors – in general terms.

 

Dorothy begins.

“He was charming, sunny, very reassuring. He made time, he asked me about myself, what I used to do for a living. I was very impressed. On time too, though it was early. What about yours?”

“Very different, I’m sad to say. I don’t know how some of these people get into medical school. He looked like he didn’t want to be there, couldn’t help but look at the time every two minutes. His mobile phone kept vibrating and when it did he would look sideways at the message. I didn’t have a very complicated problem, but I was worried…and he was just so…functional. You need this, you need that. Didn’t ask me how I felt about it even though I must have looked sacred. Might as well have been talking to a computer, to be honest.”

“I’m sorry to hear that. Just shows, all sorts can become a doctor. I bet your one is very clever…one of those smart but cold types. Whereas mine was smart and nice!”

“Well I wasn’t impressed.”

“Perhaps he was having a bad day. Or perhaps he just needed his lunch.”

“No excuse for making me feel like a pest is there?”

“Oh, don’t look now, but here he comes now. My doctor, just behind you.”

Dorothy’s friend looks around anyway, and frowns.

“Hang on, that can’t be right. That’s the doctor I saw!”

 

The point of this tale?

 

Patients form distinct impressions of their doctors on the basis of single, brief interactions. Those impressions endure, and it is inevitable that assumptions regarding the doctor’s compassion, level of interest in the whole person and overall ‘goodness’ will be made. But that doctor may well present himself differently according to circumstances – their current state of physical or mental fatigue, their response to unexpected stresses (or text messages!), or lingering regret over the fate of their last patient. Some doctors are more capable than others of maintaining an aura of equanimity, whatever the pressure, however late the clinic is running. Others respond more visibly, expressing interest in people when they are genuinely interested, but failing to disguise a sense of distraction when situations outside the room cause their minds to wander.  Combining a ‘professional’ exterior with the ability to express genuine warmth and be interested is a complex skill.

 

Anyone working in a people-facing occupation will have experienced the same phenomenon, that of presenting a variety of personalities during one working day or shift. In medicine, the consequences of such variation can be very significant indeed.

 

oOo