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patient stories

Film Review: Patient

29 Sep, 16 | by cquigley

patient_still_looking_worried_in_hallway-1

 

The ten rules of doctors’ engagement

 

Review of Patient, Colombia, 2015, directed by Jorge Caballero

Screening at the London Film Festival, 15 and 16th October 2016

https://whatson.bfi.org.uk/lff/Online/seatSelect.asp

https://whatson.bfi.org.uk/lff/Online/mapSelect.asp

 

Reviewed by Dr Khalid Ali, Screening Room Editor

 

The Oxford Dictionary defines the word ‘patient’ as ‘a person receiving or registered to receive medical treatment’. Jorge Caballero uses ‘patient’ as the title for his documentary film, but we never get the see the patient, Leidy, a 23-year old girl who is bed-bound with an aggressive form of neuro-ectodermal tumour. The focus of the narrative is Nubia, Leidy’s long-suffering and ‘patient’ mother. Nubia is constantly with her daughter, pushing her hospital bed around to chemotherapy sessions, and for never-ending x-rays. When the doctors declare that the cancer is in its most-aggressive and terminal stage, Nubia decides to take her daughter home. However, first she needs an adequate supply of pain-relief medication. Securing these crucial medicines for Leidy’s comfort and dignity is a never ending quest between several hospital departments for official approval. Finding an ambulance to take them home is another harrowing exercise in endless bureaucracy. Nubia’s exhausting daily routine is only interrupted by brief moments of following ‘Colombia’s top model’ contest on TV.

Watching Patient reminded me of this statement from the Hippocrates oath: ‘I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug’.

Here are the ten lessons that doctors can learn from ‘Patient’:

*Don’t be afraid to say ‘I don’t know’, if you don’t know, don’t waffle: In one scene a junior doctor tries to comfort Nubia by asking her to keep ‘calm, be positive and tranquil’ when she was actually asking for an honest opinion of her daughter’s prognosis.

*Avoid jargon: in another scene, doctors explaining a possible tracheostomy tube for Leidy is a master-class in communicating the need for a complicated procedure with its associated risks and benefits- sensitively handled, ensuring understanding and offering the chance for questions and comments.

*Show empathy towards patients and their families: in several exchanges between Nubia and doctors caring for her daughter, it was clearly obvious that she was desperately seeking a professional to hold her hand in empathy.

*Reassure patients and families when dealing with intractable pain, and encourage them to ask if pain is not controlled: Nubia was constantly blaming herself for not getting the dose of pain relief right. She never questioned the hospital doctors’ prescribing competency.

*Plan ahead and get medications ready for a timely discharge: Booking an ambulance, getting the insurance paper work ready, and collecting her daughter’s medicines on the discharge day was a ‘mission impossible’ for Nubia.

*Respect patients’ confidentiality: In a sensitive approach to Leidy’s agony as a young girl at the end of her life, the film director never shows her face in a powerful statement of maintaining her dignity, and upholding her capacity in choosing not to be filmed.

*Care for the carer: after grilling journeys between various hospital departments, and home trips to get Leidy what she needs, it was apparent that Nubia wanted someone to ask her how she felt, and perhaps suggest some respite.

*Offer spiritual support: no mention was made of Nubia’s spiritual beliefs or if she practised any religion in the film. It might have been something that she was afraid to ask for! So as a doctor, do not forget to ask.

*Encourage patients and their families to share their hospital experience with each other: in a brief encounter with a fellow mother of another girl in hospital, Nubia gets to exchange a few tips on how to handle their ill daughters ‘crises’. Through this ‘solidarity and companionship’ both ‘patient mothers’ experienced a transient sense of support.

*Life can be short, so value every moment.

 

 

Address for correspondence

Dr Khalid Ali: Khalid.ali@bsuh.nhs.uk

Reclaiming Reflection: Creative Writing and the Medical Humanities (1)

14 Sep, 16 | by cquigley

 

Poetry and Reflection: a powerful tool for learning

This post is part of a series over the next three days on the theme of Creative Writing and Medical Humanities by Dr Eleanor Holmes (pen name Eliot North).

 

 As a GP Tutor I’ve delivered seminars on the patient centred medicine (PCM) component of Newcastle University’s Medical Undergraduate (MBBS) course to 1st and 2nd year students, for the past three years. Professional reflective practice is taught and assessed across all five years of the curriculum.

The ability to reflect and learn from clinical encounters is central to medical education and continuing professional development. Delivered within a creative context, I believe written reflection can also be an important tool to foster wellbeing and resilience in healthcare students and professionals.

Working in an increasingly overstretched and under resourced system such as the NHS, in which clinician burnout and mental health problems are on the rise, the question of how we reflect on the difficult and complex nature of care is becoming ever more important to address.

Stating that the answer might be found outwith Medicine may seem heretical, but it is my belief that we need to look outwards to move forwards. The Arts and Humanities, like Health and Medicine, explore and reflect upon the human condition. What therefore can we learn from each other?

My last seminar with my first year group was entitled ‘Professional Reflective Practice 2.’ After a year of working together trust, an essential element of clinical reflection, had been built within the group. I used my own writing, a poem called He Blew Me a Kiss, as a launch point for discussion, which was published under my pen name Eliot North.

 

            He Blew Me a Kiss

 

She liked Frank, they connected

despite his expressionless face. Behind the wound-up limbs and tremor

a gentle man shone out from the mask.

 

When she visited they would share a cuppa,

chat about this and that. Do the ‘medication shuffle’;

a two-step dance they both knew well.

 

She’d heard about stem cell research.

How they’d taken swabs from patients’ skin. Growing stem cells

from skin cells in dishes, right there in the lab up the road.

 

These stem cells would then become brain cells.

Models of Parkinson’s just like Frank’s. For testing newer and better

medications and perhaps one day even a cure.

 

The last time she saw Frank it was snowing

but he insisted on accompanying her out. Standing by the gate like a sentinel

he’d wave her off that one last time.

 

Later she’d think of stem cells like kisses

blown on the winter air. The moment captured in her rear-view mirror;

A hand lifted slowly, toward a frozen face.

 

Published by EuroStemCell ‘Tales from Within: Imaginative Non-Fiction on Stem Cells,’ 2013. (Frank is a pseudonym)

http://www.eurostemcell.org/he-blew-me-kiss-eliot-north

 

I have found that reading a poem aloud, that I’ve written myself, is an extremely powerful learning tool. There are obvious medical elements I can draw out regarding Parkinson’s Disease and stem cell research, but more than that the poem makes an important statement about connectedness, communication, the complex and varied role of a doctor as well as the limitations of medical science. It speaks to students about the importance of getting to know patients and continuity of care; how embracing the humanity in an encounter can be both powerful and revelatory.

The moment captured in the poem will live with me until the day I die, reading it always chokes me up; I choose to show this emotion to my students. We as clinicians who teach, whether in seminars or on the wards and in clinics, are hugely powerful role models. By stating and showing that this encounter moved me I am by example saying, “It’s OK to show emotion.” This leads to discussions about professionalism, boundaries and clinician wellbeing linked to the evidence base that demonstrates better patient outcomes when doctors show that they are emotionally affected when breaking bad news.

I wrote this poem many years after the event, it was something that sat in my brain waiting to come out. I wish that I’d been able to share it with the man who inspired the poem but he died some years before I got it down on paper. It was a EuroStemCell competition, partnered with the Centre for Regenerative Medicine in Edinburgh that spurred me to write it.

The challenge to submit an ‘imaginative non-fiction’ poem that incorporated stem cell research brought this encounter immediately to mind, the link between stem cells and Parkinson’s a way to explore how I felt about this patient. Discussing the creative process and the fact that I write under a pen name and changed the patient’s name forms a nice link to the importance of anonymity, confidentiality and consent, as well as patient and doctor voice.

With my students I then facilitated a creative guided writing exercise on a memorable clinical encounter followed by small group work, drawing and writing Haiku. The seminar culminated in poster presentations delivered by the students to the group. The results were insightful, empathetic and moving; their use of metaphor and close observation giving authenticity to the explorations they had made of encounters with patients and carers struggling to cope with dementia, a potential diagnosis of cancer and the communication difficulties witnessed for a patient with learning disabilities, linking this to issues of capacity and consent.

As someone who uses creative outlets as a way of coping with the stresses of practicing medicine, it amazes me that the word ‘creative’ can strike fear in to the hearts of medical students and healthcare professionals alike. I believe that by embracing creativity and essentially our inner child, written reflection can be much more than a required component of assessment and appraisal. All humans have the capacity to be creative, no matter how much they protest to the contrary. The skill lies in being able to coax it out of them.

 

Acknowledgements

All of the work I’m currently doing in this area is in collaboration with Sue Spencer with whom I wrote the guided writing framework I used above with my students, influenced by reading the books and on-line resources below. We are delivering a ‘Reflection of Clinical Encounters’ workshop using creative writing methodologies in November 2016 for the Staff Development Programme, School of Medical Education, Newcastle University.

Writing Poems by Peter Sansom, Bloodaxe 1994

The Poetry Toolkit – The Poetry Trust 2010, available as a free PDF download http://www.thepoetrytrust.org/images/uploads/pdfs/Toolkit%20for%20Teachers.pdf

 

Related reading

S E Gull, R O’Flynn, J Y L Hunter. Creative writing workshops for medical education: learning from a pilot study with hospital staff. Med Humanities 2002;28:2 102104

Khaled KarkabiOrit Cohen Castel. Teaching reflective competence in medical education using paintings. Med Humanities 2011;37:1 5859

T J Collett, J C McLachlan. Evaluating a poetry workshop in medical education. Med Humanities 2006;32:1 5964

Wellcome Book Prize Winner 2016 – ‘It’s All In Your Head’ reviewed

23 Jun, 16 | by cquigley

It's All in Your Head

 

Suzanne O’Sullivan, It’s All In Your Head: True Stories of Imaginary Illness. London: Vintage, 2016; first publ in hardback 2015 by Chatto & Windus

Reviewed by Professor Edward Shorter

The very subtitle of the book makes one nervous: “stories of imaginary illness.” If there is one phrase that psychosomatic patients – who have symptoms without lesions ­– do not want to hear it is that their problems are “all in their heads.” Even though O’Sullivan may use the phrase ironically, it does take us back to the days when discovering organic causation was the Mecca of medical practice and psychiatry was left to “the shrinks.” Of course things are more complicated, and O’Sullivan, a neurology consultant at the National Hospital for Neurology and Neurosurgery knows this well. The book does make some finer distinctions so that “all in your head” doesn’t come out and hit us in the face. But still, O’Sullivan says that “psychosomatic refers to physical symptoms that occur for psychological reasons . . . How many are aware of the frequency with which our emotions can produce serious disability where no physical disease of any sort exists to explain it?” So in other words the origin of such symptoms is clearly psychological. These patients amount, she says, to fully a third of the cases seen in general practice and in neurology.

The book is a kind of odyssey of patients O’Sullivan has seen whose problems seem to have been caused by mental distress – a tour interleaved with explanations of historical figures such as the Parisian neurologist Jean-Martin Charcot, who once peopled this scene.

O’Sullivan has gone to such lengths to obscure the patients’ actual identities that one is never entirely sure whether the “Paulines” and “Matthews” that parade through these pages are more fictional than real – though their complaints are real. And O’Sullivan, it must be said, writes beautifully, a low-key golden flow of prose that makes the book simply a good read. There are no references. No authorities are invoked. This is the author, a veteran neurologist, speaking to us from the heart.

But is what the heart says true? How reliable is her analysis that psychosomatic symptoms are “physical symptoms that mask emotional distress”?

Right off the bat, there are problems with this stress-causes-functional-illness model. There are several major causes of psychosomatic symptoms, some of which get short shrift.

One, O’Sullivan tells us about classical psychosomatic symptoms that are caused by “stress” or by the emotional overlay of underlying organic disease. Her patients’ emotional woes are apparent to her in the course of many clinical interviews, and she ends up referring many of them to a “psychiatrist.” This is the most useless referral imaginable, as psychiatrists shun and fear psychosomatic patients and can usually do little for them because the patients themselves reject the whole notion of “psychogenesis”; patients usually accept such referrals only with the greatest reservation, convinced – not entirely incorrectly – that they are being turfed.

Two, O’Sullivan is silent about a huge source of psychosomatic illness, namely the phenomenon of suggestion. Patients who can be suggested into illness require no deep psychological problems, no intractable “stress,” to become symptomatic. They simply are suggestible.

A perfect illustration of suggestibility is epidemic hysteria: Sally begins vomiting and suddenly all the ten-year-olds in the schoolyard start vomiting as well. The public health authorities rush in. There is alarm in the press. An organic cause is never found but everybody is better the next day. It is an epidemic of suggestion that has invested the schoolyard.

The culture can be a source of suggestion as well, a subject on which O’Sullivan is silent. The culture can tell us that “fatigue” or “pain” are acceptable models of presenting illness, and these patients turn up in physicians’ surgeries with “myalgic encephalomyelitis” (ME), known as “chronic fatigue syndrome” (CFS) on the other side of the Pond. They do not in fact have an occult organic illness called “ME” but have suggested themselves into their chronic pain, fatigue and dizziness because the culture says those are appropriate symptoms. (And the culture has largely ceased to sanction “paralysis” as a convincing symptom – too easy to disprove with a negative Babinski.)

Three, frank psychiatric illnesses may spin off somatic symptoms. Patients with melancholic depression will light up the medical charts like a Christmas tree. Their aches and pains are legion, and disappear once the melancholia – one of the most treatment-responsive illnesses in psychiatry – is successfully treated. Catatonia shoots off somatic symptomatology, the stupors, tics and stereotypies often misdiagnosed as organic disease and the catatonia not recognized. Why does this matter?Catatonia is another highly treatment-responsive disorder, but there’s nothing “psychosomatic” about it. In medicine, therefore, the concept of psychosomatic can get one into rough psychiatric water.

It is striking that O’Sullivan sees deep sadness as a source of psychosomaticity rather than as a symptom of glaring psychiatric psychopathology. “I have met many people whose sadness is so overwhelming that they cannot bear to feel it,” she writes. Yoo hoo!  Such melancholic patients are indeed candidates for psychiatric treatment, not for repeated neurological assessments.

There is, finally, a fourth variety of apparent “psychosomatic” illness. But it is quite foreign to the other three and is usually not included in reviews of the topic. It is malingering. One rather has the feeling that some of O’Sullivan’s patients –  their gaze strictly averted from hers, their long silences – were malingerers. (She presents one.) You can’t prove that someone is not fatigued, or not in pain. But you can prove that they don’t have multiple sclerosis or another upper motor neuron lesion. So malingerers choose symptoms that can’t be disproven. And many physicians who work, for example, in insurance medicine, cast a cynical eye upon many of the complaints that O’Sullivan takes for true-bill.

How best to treat these patients? O’Sullivan has good words for a procedure that has largely passed from medicine, namely the amobarbital (amytal) interview. But it is increasingly seen as outmoded and dangerous (the barbiturates have undeservedly acquired a bad reputation, and most physicians are simply not in the habit of prescribing them).

O’Sullivan believes in letting the patients have it full blast: Your “disability has a psychological cause.” Sorry. The patients are left open-mouthed, since virtually every psychosomatic patient in the history of the world has had a profound belief in the organicity of his or her woes. And even though we have exalted “never lying to patients” to a beacon of medical ethics, in fact there are moments when a bit of evasion may prove therapeutic.

“Shahina” comes in with a contracture of the fingers of one hand. Another consultant recommends a botulinum injection. Bingo! The contracture releases instantly. Shahina is cured! Now, usually you take your therapeutic victories where you can get them. But O’Sullivan presses on. She tells Shahina that normally the botulinum works only after a day or two. “The speed at which your hand responded to the toxin makes me wonder if there is a chance that the spasm in your hand might have had a psychological rather than a physical cause.”

Shahina responds, “You think I’m mad?” No, of course not but…

This is actually a model of what not to do: throw patients into confusion with the relentless urge to enlighten them about their supposed psychological problems.

For other patients, as I have argued above, the psychiatrist is held out as the solution of choice. This is a problematic idea, and it is dismaying to see it propagated so vehemently in these pages. Psychiatrists tend to be baffled by such referrals. “This is a patient whose chief complaint is chest pain? C’mon!”

The general internist, the rheumatologist, or another neurologist should be the physicians of reference, because only they are able to build the necessary therapeutic alliance, to keep the myth of organicity semi-intact. It is this myth that patients require to retain their self-respect, while the real therapy takes places in the context of the doctor-patient relationship. What actually works is spending a lot of time with these patients and letting them tell and, if necessary, retell their stories. This is cathartic. But it is advice that is most unwelcome to many clinicians because it takes so much time.

It is not really fair for me to second-guess Dr O’Sullivan from the comfort of my armchair thousands of miles away. Physicians on the front line of medicine, at Queen’s Square and elsewhere, have to cope as best they can – and with relatives that make Himmler seem like Santa Claus. (O’Sullivan’s patience in dealing with these furies is remarkable.) The take-home message is that the book is a great immersion in psychosomatic problems. One may quibble about some of the author’s therapeutic choices but this is for the Thursday afternoon seminar room. If you want to get a head-on feeling for the clinical experience of psychosomatic patients, read this book.

 

Edward Shorter is Jason A Hannah Professor of the History of Medicine in the Faculty of Medicine of the University of Toronto, where he also has the academic rank of Professor of Psychiatry. Among his books is From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era (New York: Basic Books, 1992)

 

 

First impressions only happen once

7 Jun, 16 | by cquigley

 

Fergus Shanahan

 

Eyes smiling, face beaming, the porter rose from his stool to greet arrivals at the cancer centre, each nervously hesitant, staying close to a supporting loved one. With the confidence of a man who enjoyed being good at his job, he paused for those needing directions, reassured us that we were in the right place for our appointment, and then boomed: “Welcome everyone, and good luck to you all today.”

Good start. After that, we didn’t mind inconveniences like waiting for the single working elevator and felt better about whatever unknowns were ahead. The moment was still fresh when we got to the sixth floor. There, we faced a receptionist unable to switch her gaze from a computer to address us. Detached with jaded eyes fixed elsewhere, her outstretched arm dispatched us to an adjacent touch screen to register. We obeyed but the system insisted on a five-digit address code. Bad enough to be labelled ‘international’ as code for not having acceptable insurance, but not having a zip code was a new stigma. Before we could explain, Miss No-Eye-Contact was on the phone staring at some distant point behind us, then back to her screen with a facial expression that said: “Can’t you see! I’m busy.” Bristling a little, I blurted out my son’s details to demand attention. Without the slightest shift in posture, she confirmed our existence in the system with a few flicks of her keyboard. Progress. Then she left us with the unsettling comment: “Hmm, that’s interesting…take a seat and wait while I check with Accounts.” This is not what patients want to hear as they contemplate the prospect of major surgery. No one wants to be that kind of interesting.

Joe shot a warning glance at me “Dad…don’t be rude with this lady. Don’t lose it!”

Lose it! After 8 months of continual worry and stress trying to steer my son through the complexities and decision-making of a young man’s cancer treatment, I was determined not to ‘lose it’. We were overseas in a different healthcare system for a high stakes operation. They were now in charge and I would just have to play it their way. After all, I wasn’t the patient. I was supposed to be the support. So I stayed quiet. Then, the silence was broken, delightfully so, it seemed to me, when an old woman behind us flatly refused to have anything to do with self-registration. Dismissing the technology with an impatient wave of her hand, she snapped at no one in particular in a brash accent: “I’m not gonna do it, I can’t be bothered with that.”

Miss No-Eye-Contact receptionist had met her match.

While waiting, I imagined myself telling anyone seeking my opinion that professional staff within medical offices and hospitals should heed the little things that comfort patients. I would tell them that little things are important. Staff should know that routine for them is crisis for the patient. I would remind them that there is only one opportunity to make a first impression. First impressions are made up of little things. Little things can make a big impression. If the front office experience is poor, anxiety increases and confidence in the rest of the enterprise becomes more doubtful. In other words, if the dentist’s receptionist is a barracuda, don’t expect much pain relief when you get to the back office.

Then, we heard our name called out and we were on our way into the back office.

The interview with the surgeon was probably over within minutes but it seemed much longer. He began with a firm handshake. Then, sitting beside us not across a table, he spoke confidently in clear, crisp, explanatory sentences. These, he must have repeated on hundreds of previous occasions but it didn’t seem that way. He anticipated our questions and acknowledged our sense of urgency.

In the end, the professionalism of the porter that morning and his memorable welcome was the bellwether for what followed. The surgeon’s skill and experienced team determined what was to be a favourable outcome. But something else made a difference and a lasting impression. To borrow from the poet Maya Angelou:  “…people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

 

Fergus Shanahan, MD, DSc

Professor and Chair,

Department of Medicine,

Director, APC Microbiome Institute

University College Cork,

National University of Ireland

Tel +353-(0)21-4901226  also cell phone 086 280 4881

FAX +353-(0)21-4345300

F.Shanahan@ucc.ie

 

 

The Reading Room: When Breath Becomes Air

9 May, 16 | by cquigley

 

Hope, Oncology and Death

Seamus O’Mahony

 

When Breath Becomes Air by Paul Kalanithi. London: The Bodely Head, 2016.

image1

Paul Kalanithi was nearing the end of his neurosurgical training at Stanford when aged thirty-six, he was diagnosed with stage IV lung cancer. He had never smoked. He was referred to an oncologist specializing in lung cancer. “Emma Hayward” – not her real name – is a central figure in his posthumously-published memoir When Breath Become Air. At their first consultation, Emma refused to discuss survival statistics for stage IV lung cancer, but encouraged Kalanithi to return to work as a surgeon. I shared Kalanithi’s initial reaction: “Go back to work? What is she talking about? Is she delusional?” He argues that for the patient, cancer survival statistics are of little help or succour: “It occurred to me that my relationship with statistics changed as soon as I became one . . . Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

But statistics and probability were important for Kalanithi. Examining his options, he reasoned: “Tell me three months, I’d spend time with family. Tell me one year, I’d write a book. Give me ten years, I’d get back to treating diseases.” After an initial encouraging response to chemotherapy, his oncologist is wildly optimistic:

Going over the images with me, Emma said, “I don’t know how long you’ve got, but I will say this: the patient I saw just before you today has been on Tarceva for seven years without a problem. You’ve still got a ways to go before we’re that comfortable with your cancer. But looking at you, thinking about ten years is not crazy.”

As it turned out, Kalanithi survived for twenty-two months following his diagnosis, some distance short of ten years. Encouraged by his oncologist’s optimism, as well as Samuel Beckett’s famous exhortation (“I can’t go on. I’ll go on”), he returned to work as a surgeon: “One part of me exulted at the prospect of ten years. Another part wished she’d said, “Going back to being a neurosurgeon is crazy for you – pick something easier.”” Returning to the operating theatre, he had to lie down during his first case, but “over the next couple of weeks, my strength continued to improve, as did my fluency and technique.” Soon, however, the stark reality of his disease caught up with him:

But the truth was, it was joyless. The visceral pleasure I’d once found in operating was gone, replaced by an iron focus on overcoming the nausea, the pain, the fatigue. Coming home each night, I would scarf down a handful of pain pills, then crawl into bed . . .

Inevitably, as his disease progressed, he knew he could no longer work as a surgeon. When a CT scan showed that his disease was advancing again, “Emma Hayward” managed to put a defiant, Churchillian spin on the situation:

“This is not the end,” she said, a line she must have used a thousand times – after all, did I not use similar speeches to my own patients? – to those seeking impossible answers. “Or even the beginning of the end. This is just the end of the beginning.”

And I felt better.

On the day he was due to attend the graduation ceremony from his residency program, Kalanithi was taken suddenly ill, and ended up in the Intensive Care Unit, where various specialists, including nephrologists, endocrinologists, intensivists and gastroenterologists squabbled over his treatment. Kalanithi refers to this as “the WICOS problem” – Who Is the Captain Of the Ship? Emma – who had been away on holiday – returned, and took over the role of captain. Having pulled her patient through this crisis, she reverted to her relentless optimism: “” You have five good years left,” she said.” Kalanithi, however, saw this wishful, magical thinking for what it was: “She pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea.” He is remarkably forgiving of this fudging and fibbing, this hesitation to be brave:

There we were, doctor and patient, in a relationship that sometimes carries a magisterial air and other times, like now, was no more, and no less, than two people huddled together, as one faces the abyss. Doctors, it turns out, need hope too.

“Emma Hayward”, like many American oncologists, is part conventional cancer doctor, part shaman. She seems to have been able to simultaneously believe two truths. The conventional cancer doctor part of her surely knew that Kalanithi was, at that point in his illness, unlikely to survive five months, let alone five years, yet the shaman part of her half believed the lie she was telling her patient and herself. Her no doubt well-intentioned exaggeration of Kalanithi’s survival prospects led him to take the ill-advised decision to go back to work as a surgeon, when his remaining time might have been more fruitfully spent with his family and his books.

Kalanithi muses on the nature of hope in terminal illness:

When I talked about hope, then, did I really mean “Leave some room for un-founded desire?” No. . . So did I mean “Leave some room for a statistically improbable but still plausible outcome – a survival just above the measured 95 percent confidence interval.” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average?

Atul Gawande wrote how the entire edifice of American cancer treatment is based on the assumption that all patients with advanced cancer are in the small, statistically favoured end of the bell-curve, the medical equivalent, he observed, “of handing out lottery tickets.” Cancer patients are routinely treated on this assumption (or hope), but are not prepared for an outcome – death −  which is overwhelmingly more likely. Optimists would cite the example of the palaeontologist and writer Stephen Jay Gould, and his famous essay, The Median is not the Message. Diagnosed with a rare form of cancer (primary peritoneal mesothelioma), Gould looked up the survival statistics, and found the median survival was just eight months. He noticed, however, that the survival bell-curve was not symmetrical, that it was right-skewed, with a small minority of long-term survivors. Gould reasoned that he might just be in this small minority: “I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment.” He was right: he survived for twenty years, dying of an unrelated cancer. I would imagine that this essay is holy scripture for American oncologists.

I am, I confess, an oncology apostate. Cancer treatment seems to offer some patients a toxic combination of false hopes and a bad death. And the oncology community itself acknowledges this. The Lancet Oncology Commission produced a  lengthy report in 2011 called Delivering Affordable Cancer Care in Developed Countries : “The medical profession and the health-care industry have created unrealistic expectations of arrest of disease and death. This set of expectations allows inappropriate application of relatively ineffective therapies . . . cancer treatment is becoming a culture of excess.”

Can we give our patients hope, yet still be honest with them? “Hope” has acquired a very narrow meaning in the cancer setting, namely, an expectation of long-term survival. But for our patients, hope can mean all sorts of things: a reassurance that they will not suffer unbearably, an opportunity to settle affairs and spend time with family, a sure knowledge that their doctor will accompany them on the road as an amicus mortis. Giving hope does not mean creating an atmosphere of histrionic pretence, an atmosphere which inevitably explodes as the end nears. Hope and honesty are not incompatible.

Unfortunately, honesty is heavily disincentivized in modern medicine. A study published in the New England Journal of Medicine in 2012 found that the less patients with advanced cancer knew about their prognosis, the happier they were with their doctors. Nearly all families, and many patients, prefer the Lie. Although he eventually realized that his oncologist was telling him what she thought he wanted to hear, Paul Kalanithi believed in, and acted on, her initial over-optimistic prognosis. If a  man as well-informed and intelligent as Kalanithi could buy the well-intentioned Lie, what hope for the “ordinary” patient?

 

Seamus O’Mahony’s book The Way We Die Now was published on May 5 by Head of Zeus.

 

The Screening Room: The Aftermath of Stroke

3 May, 16 | by cquigley

 

Building bridges: two films about self-discovery after stroke

Dr Khalid Ali

 

Two recent films portray the aftermaths of stroke from different viewpoints: that of a stroke survivor in My Beautiful Broken Brain (UK 2016, directed Lotje Sodderland and Sophie Anderson, currently showing on Netflix) and that of the daughter of a stroke survivor in You See Me (USA 2015, directed by Linda Brown, available from http://youseememovie.com/).

Linda Brown is a film maker and an Associate Professor at the University of Southern California (USC). After her father Stanley Brown had a stroke in 2004 at the age of 79, she decided to collate her filmed reflections on his stroke experience in a documentary film, You See Me. Another motivation for making the film was her strong desire to get to know her father better as a human being with a traumatic past and unfulfilled dreams. Using family home videos and interviews with her father, mother, and two sisters, she tells a poignant story of a family afflicted by stroke as well as long-hidden secrets. The blood clot that blocked the blood supply to her father’s brain (cerebellum) has affected him in many ways; his physical weaknesses, poor balance, stuttering speech were accompanied by significant behavioral changes characterized by frustration and outbursts of anger. In spite of Stanley’s determination to walk and communicate and restore his relationship with his family, his frequent paranoid delusions and verbal abuse put significant strain and pressure on everybody around him, particularly his long suffering wife. Documenting the turbulent and volatile family life for 12 years after Stanley’s stroke in film became a journey of self-discovery for Linda and her mother. Watching family home movies enabled them both to re-evaluate their relationship with Stanley, and to come to terms with their own uncertainties about his morbid and enigmatic pre-stroke personality. With poignant realism, Stanley’s death circumstances were honestly shared with the audience. However, ‘unexpected salvation and healing’ come in the guise of a never-before-seen family home video.

Following the film screening in several international film festivals, and after winning major awards, The American Heart and Stroke Association (AHSA) supported the film in public campaigns for its honest portrayal of life after stroke, in addition to caregiver burden in old age, domestic violence, and mental health awareness.

In My Beautiful Broken Brain, we see Lotje Sodderland, another film-maker, who had a massive haemorrhagic stroke at the age of 34. Following life-saving brain surgery, she begins to experience a bewildering and confusing reality; visual images are distorted, sounds are exaggerated – a surreal existence that reminds her of ‘the red room’ experience in Twin peaks, her beloved director David Lynch’s infamous TV series from 1990 (https://en.wikipedia.org/wiki/Twin_Peaks). With the help of another film maker, Sophie Anderson, the two embark on a journey of filming Lotje’s demanding speech therapy sessions, her isolating experience in a hospital rehabilitation unit, readjusting to life again, and joining a research study that involving trans-cranial magnetic stimulation for improving speech.

In her strong desire to turn her ordeal into a positive experience, Lotje and Sophie send a videotaped message to David Lynch (https://en.wikipedia.org/wiki/David_Lynch), sharing Lotje’s day-to-day attempts of ‘restoring her old self’. To their surprise, David Lynch replies, expressing his interest in Lotje’s video diaries, and ultimately joining as an executive producer for the film.

Telling her stroke experience as it is without sugar-coating, Lotje says: ‘My life was hijacked by therapists. I am now defined by my impairments’.  How much she scores on stroke-specific assessment scales becomes her daily pre-occupation. Lotje’s story and observations embody the sense of lack of control that many stroke patients experience both in hospital and after discharge. Stroke therapists as ‘dictators’ controlling the stroke survivors’ recovery, and the challenge for survivors moving towards a ‘reluctant democracy’ has been explored in a seminal article by Norris and Kilbride (1).

In spite of the harsh reality of life post-stroke, Lotje slowly discovers and comes to appreciate her hidden strength and her resilience as she reconnects with a new sense of self. The ethos of self-management post stroke is practiced on a daily basis by Lotje, a reminder of the visionary Bridges approach championed by Professor Fiona Jones in the UK (2).

You See Me and My Beautiful Broken Brain show us how living with, and embracing change after stroke can be the key for healing and liberation for both stroke survivors and their families.

 

References

  1. Norris M, Kilbride C. From dictatorship to a reluctant democracy: stroke therapists talking about self-management. Disabil Rehabil 2014; 36 (1): 32-8.
  2. Self-management – Bridges approach  http://www.bridgesselfmanagement.org.uk/

 

Address for correspondence: Dr Khalid Ali, Screening room editor, Khalid.ali@bsuh.nhs.uk

 

 

Khalid Ali: ‘Let’s talk about death: a review of ‘Last cab to Darwin’, Australia 2015’

31 Mar, 16 | by Ayesha Ahmad

Let’s talk about death: a review of ‘Last cab to Darwin’, Australia 2015

5*, Directed by Jeremy Sims based on stage play by Reg Cribb

Dubai International Film Festival (DIFF) December 2015, possible release in UK cinemas 2016/17

The controversial subject of ‘euthanasia and assisted suicide’ has been a rich source for films; ‘Whose life is it anyway? USA, 1981, directed by John Badham’, ‘The sea inside, Spain, 2004, directed by Alejandro Amenabar’, and ‘Million Dollar baby, USA 2004, directed by Clint Eastwood’ have all explored the ethical, legal and moral complexities of ‘the right to die’ from a patient’s perspective.

more…

The Reading Room: ePatients Conference, Queen’s University Belfast

12 Aug, 15 | by cquigley

 

ePatients

The Medical, Ethical and Legal Repercussions of Blogging and

Micro-Blogging Experiences of Illness and Disease

 

Institute for Collaborative Research in the Humanities

Queen’s University Belfast, 11-12 September 2015

The provisional programme for this conference is now available:

Friday 11th September

11.00 – 11.30         Registration

11.30 – 11.45          Welcome

11.45 – 12.45          Keynote 1:

                                      Anne-Marie Cunningham (Cardiff University)

                                    Learning with and from epatients

1.45 – 3.45               Panel 1:

                                      Chair: Nathan Emmerich (QUB)

Amy Brown (SUNY Upstate Medical University, Syracuse, New York): Grounding the Relationship Between Families and Physicians in a Digital Community: A Case Study

Columba Quigley (Reading Room Editor, Medical Humanities): The ePatient and Stories of Illness

Kristen Larson (Duke University): Autopathography and Online Community: Applying Biovalue to Understand the Lisa Adams Controversy

Yewande Okuleye (University of Leicester): You call it Marijuana and I call it Medical Cannabis: Online Identity Construction and Illness Narratives from the epatient/activist Perspective.

4.00 – 5.40              Panel 2:

                                       Chair: Pascal McKeown (QUB)

Maggie Bennett and Deborah Coleman (QUB): Cultivating Compassion through Analysis of Online Patient Narratives

Sylvia Hübel (Interfaculty Centre for Biomedical Ethics and Law, University of Leuven, Belgium): IVF Blogs and Online Forums as Sites of Patient Empowerment and Moral Agency

Angela Kennedy (independent researcher): Power and Conflict between Doctors and Patients: the Case of the ME Community

5.45                            Drinks Reception, The Naughton Gallery

7.00                           Conference Dinner, Deanes at Queen’s

Saturday 12th September

 10.15 – 11.45          Panel 3:

                                      Chair: Paul Murphy (QUB)

Rebecca J. Hogue (University of Ottawa, Canada): Cancer Blogging – A Survivor’s Story

Marie Ennis-O’Connor (Digital Media Strategist and Health Blogger): Connecting and Protecting: The Benefits and Pitfalls of Online Disclosure

Anne Lawlor (22q11 Ireland Support Group): Social Media as a Virtual Lifeline: A Support-Group Perspective of the Issues

12.00 – 1.00             Keynote 2:

                                     Julia Kennedy (Falmouth University)

                                     In Our Blood: Mapping Multiple Narrative Accounts of Leukaemia Online

 1.45 – 3.15               Panel 4:

Victoria Betton (University of Leeds and mHealthHabitat programme director (NHS)): Mental Health Discourses in Social Networking Sites

Ida Milne (QUB): A Rash of Reaction: the e-parent and the 2015 Measles Epidemics

Sally Burch (Patient Blogger at “Just ME”): The Use of Patient Blogs as a Care Resource

 

The deadline for registration is August 14, 2015.

Further information can be found here: https://epatientsconference.wordpress.com/2015/06/24/programme-and-registration/

Mark Making: An Experience of Dementia and the Arts by Hannah Zeilig

28 Apr, 15 | by BMJ

Rose sensed that I was nervous. My façade of confidence was not convincing, I was holding my papers a little too defensively across my chest and my shoulders were tense. I stood awkwardly at the edge of the circle of people, feeling outside their camaraderie. It was strange but also salutary to feel an outsider amidst a group of people with dementia. Instinctively, I wanted to make a note about this. However, the point of the day was that I should participate so reluctantly and feeling slightly naked I put my notebook down. I wondered how I could remember without notes. If we are our memories, then I am contained in small black notebooks. Then Rose made her well timed move. Loudly pushing her chair away she stood up and came to embrace me. ‘Enjoy the day’ she exhorted me loudly in a rich Jamaican voice. Rose’s warmth dissolved my hesitations. I began to understand that I might not need my notebooks here and that I would remember ‘feelingly’ to borrow a phrase from King Lear.

 

From this point onwards, I joined the music making, art viewing or tea drinking: all activities that were integral to the participative arts projects that I worked with during Mark Making. This AHRC funded project was an exploration of the participative arts for people with dementia. In the last decade, arts activities for people living with dementia have flourished; these include singing, drama, painting, photography and puppetry (to name a few). The context for this burgeoning interest in the arts and dementia includes a widespread awareness that in the absence of cures, interventions that emphasise quality of life are important [1]. Despite being a small-scale project Mark Making tackled some big, existential issues. These include what we mean when we refer to ‘dementia’, what we think the ‘arts’ are and can do and what value means in the context of the arts. Of course we do not have satisfactory answers and this was never our goal. However, it was through actively participating in arts projects that we came closest to asking the right sorts of questions.

 

Putting aside pens and digital recorders helped me shed my own assumptions and enter the moment creatively with others there. I was too occupied attempting to singing notes in harmony or exploring John Van Ruisdael’s Waterfall to do anything other than feel the presence of other participants intuitively. In a brief period, my identity as a researcher and reliance on analytical, cognitive skills to investigate how the arts ‘work’ disappeared. I noticed that other group members, the majority of whom were living with some form of dementia, were perceptive about my feelings and could sense when I felt hesitant about singing out my name or using a shaker. On one memorable occasion, during a session of music making Edith showed me how to use the shaker. She took it from me to demonstrate and said laughingly: ‘The shaker will be your best friend.’

 

Due to past experiences of working with people with dementia, I knew that when I engaged attentively with individuals I was able to learn a lot about their feelings and experiences. I have also spent time educating the dementia care workforce, students including medics and nurses and the general public in an effort to dispel the prejudices that continue to cloud our collective vision about dementia. Until I worked closely with the arts projects that I was also researching, I did not suspect that I still had my own prejudices concerning what people with dementia can do.

 

However, by becoming part of the sessions that I attended I began to understand the creative process in way that was embodied rather than solely intellectual. Along with other participants I experienced how the arts projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. Thus living with dementia became a social experience (as opposed to an isolated, singular experience).

 

During the focus group one participant eloquently articulated his sense that he was part of a group:

‘We became a little group within ourselves. …’

In addition, the security of being part of this new group was evident, as the same respondent noted:

‘It wasn’t only me, there were other people’.

The sense of collective identity that to some extent afforded participants (and myself when I was there) a sense of camaraderie mirrors observations by other researchers that supportive social contexts can promote identity adjustment.

However, attending a public concert in the Wigmore Hall with the group of participants from Music for Thought really challenged my preconceptions. Despite my lively imagination I could not quite predict how the diverse group of individuals would experience the concert. There were practical issues including how we would physically access the concert hall with our group, some of whom walked with several canes, others who were without language but prone to making unexpected sounds and others who needed the toilet at regular intervals. The pre-concert meeting with tea proved essential. This allowed us all to gather and reconfigure ourselves as a ‘group’. I spent time with Harold who treated me as both a co-conspirator and later as his date. He called me his gal. I felt delighted as he held my arm proprietorially in the concert hall.

 

There was some anxiety about ensuring that everyone was able to get upstairs into the main concert hall and find their seats before the concert began. The concert was a formal event, performers were in suits and ball gowns and it consisted of a song cycle based on Goethe’s poetry set to music. To my surprise and delight the group seemed able to concentrate throughout the performance (in some cases better than myself); there was a tacit understanding about how to behave in this environment.

 

This event demonstrated the ability that some people with dementia have for participating in cultural events, even those living with a fairly advanced dementia. The grandeur of the setting, the emotions expressed by the performers, the vibrations of the music which could be felt physically as well as aurally, combined to create a space in which the condition dementia was less relevant than the sense of being present in the musical moment. Even if there were moments when those with dementia were not fully engaged it seemed a more appropriate activity than, for example, watching TV. This is because it was a form of living communication that was facilitated by the immediacy of the performance. In addition, the equality of simply being part of a concert-going audience was noticeable.

 

Concluding thoughts

Mark Making demonstrated that the participative arts groups stimulated a distinct social experience, one that was partly connected with a shared identity but that was also characterised by an ability to transcend the habitual constraints that define life with a dementia. I felt lucky to be able to learn from those people with dementia that I worked with and humbled by how much I am also hampered by judgements and assumptions. However, I am heartened by the ability of the arts to dispel stigma by uniting groups of people who are otherwise disparate in generation, gender, occupation and physical or mental health. After all, the arts rely on taking a broad, imaginative view – appreciating context and privileging feelings rather than relying on certitudes. Living with uncertainty is something we should all aspire to, as it is a fundamental part of life whether you have dementia or not.

Reference:

  1. Zeilig, H., J. Killick and C. Fox (2014). “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life: 1-28.

Further Information: http://markmaking.arts.ac.uk

Correspondence:

Dr Hannah Zeilig

University of the Arts, London

h.zeilig@fashion.arts.ac.uk

 

 

 

Art in Arthritis by Nancy Merridew

22 Mar, 15 | by BMJ

 

 

I called Marco from the waiting room.

 

Everyone looked waxen under the fluorescent lights of Rheumatology Clinic. His olive skin looked grey. He rose like a grapevine on the trellis – thickset but gnarled through the seasons.

 

Marco helped his wife with her handbag and they walked together. Her gait was robust; his was antalgic and unhurried, though slower than he’d have liked.

 

In the consulting room we shared our introductions. I explained that I was aware of his medical history and asked “what are your biggest joint troubles today?”

 

Marco’s molten voice was rounded with a beautiful Italian accent and 80 years of life.

 

Apologising in fluent English Marco said that he didn’t speak English well and that it’s important to “talk the talk” of the doctors.

 

He looked down, reached into a shopping bag, and handed me three sheets of drawings.

 

I was stunned by beauty, utility, and clarity.

 

Brown ink outlined each picture, backfilled with camel watercolour. One image revealed the face of a younger man and the muscular shoulders of youth – his mind’s eye self-portrait.

 

Marco nodded to confirm that he had drawn them all.

 

Each drawing was anatomically correct and swelled from the parchment like parts of an amputee ghost. In some, his bones were bare. In others Marco had blended superficial features of skin with deeper structures of the appendicular skeleton.

 

A left hand floated on one page, like Adam’s in his Creation on the Sistine Chapel ceiling. Words – “Pain here” and “Here too” – were anchored by lines drawn to the hand, portraying metacarpophalangeal and proximal interphalangeal pain.

 

Figure.1_Hand.Shoulder_BMJ

Figure 1. Annotated drawings of right shoulder, face, and left hand:

  • “Pain here” [SHOULDER]
  • “Pain here” [5th METACARPOPHALANGEAL JOINT]
  • “Here too” [2nd METACARPOPHALANGEAL JOINT]
  • “Pain here” [FINGER]

 

Six weeks earlier a rheumatologist had diagnosed Marco with recurrence of polymyalgia rheumatica, with shoulder and small joint features, and with a possible component of new onset rheumatoid arthritis. Recurrent carpal tunnel syndrome was diagnosed in his right hand.

 

On the other pages Marco had drawn his hips, knees, and feet, and annotated their aches with cursive writing.

 

These bones it seems that they are coming apart. When I walk for about ¾ of an hour then it start to give pain. Swells up and gets quite hot. The knee.

 

Figure.2_Knee.Foot_BMJ

Figure 2. Annotated drawings of foot and knee:

  • “Pain here especially at night.” [KNEE]
  • “These bones it seems that they are comming (sic) apart. When I walk for about ¾ of an hour then it start (sic) to give pain. Swells up and gets quite hot. The knee.” [KNEE; TIBIOFIBULAR JOINT]
  • “Pain here last for days on both feet. Not all the time” [TALUS]

 

Marco was seen in the hospital’s Orthopaedic Clinic for severe osteoarthritis of his knees.

 

A carpenter, who still bent those knees to work, Marco explained that he once did a Fine Arts degree to support his business. Beyond that expertise, his careful handling of the autographed pictures revealed an artist.

 

The edge of one page cut through the word “foot” at “foo” which perhaps reflected Marco’s life.

 

Born during the Great Depression he was of the frugal generation – practical, resourceful, industrious. I wondered if Marco had ever rationed paper as a luxury, each sheet precious and saved for handsome cabinet designs.

 

Perhaps as an artist, unwilling to share flaws, he had cropped a larger page of sketches.

 

Figure.3_Hip.Foot_BMJ

Figure 3. Annotated drawings of right foot, pelvis and right lower limb:

  • “Both feet hurt at times” [FOOT]
  • “Pain in here sometimes not all the time” [HIP JOINTS BILATERALLY]
  • “Right leg. Pain here” [FEMORAL HEAD, TIBIAL PLATEAU]

 

I was enthralled.

 

Marco’s eyes danced like bubbles from the surface of Prosecco – the muted pleasure of artistic pride.

 

Already he had offered his pictures to me three times as a gift.

 

Yet I had declined as it seemed too generous. I thanked Marco and encouraged him to keep bringing the drawings to appointments given their clinical value.

 

I completed the history.

 

Marco’s main concerns were steroid-related weight gain, although his arthralgia had improved.

 

As he talked I noticed subdued hand gestures. Given his Italian heritage, perhaps Marco suffered a cultural version of locked-in syndrome from the pain that restricted his upper limbs.

 

After completing the physical examination, I liaised with my registrar about Marco’s clinical plan. In a makeshift gallery behind the consulting suites I showed his artworks to the rheumatologists.

 

They advised that I could keep the pictures, and to take photocopies for the medical record. I made an extra copy either for me or for his art portfolio.

 

I returned to the clinic room. Marco’s wife, who had been silent, was keen to hear the consultants’ opinions of his drawings.

 

She beamed on learning that they were unanimously said to be “the most beautiful ever seen in clinic”, and particularly enjoyed by the Head Professor of Rheumatology.

 

Again Marco offered his pictures and this time I accepted with delight.

 

Smiling, he received his own copies as I explained his treatment changes and follow-up plan. We shook hands. Those aching hands created beauty and conveyed exceptional insights.

 

I watched as he left with his wife and wondered about their lives, leaving Italy to bring their charisma to Melbourne.

 

Two days later I framed the drawings – an exquisite medical document and gift. They hang in my home and evoke Marco’s grace, eloquence, and vitality.

 

* * *

 

Acknowledgements and Postscript

 

Marco, a pseudonym, has consented to the release of his artworks for the purposes of this article. See Figures 1, 2, and 3. Sincere thanks to the patient for his generosity and insights.

 

Thanks to Dr Thomas Lawson Haskell BMBS for his excellent photography of the drawings.

 

Correspondence: Dr Nancy Louisa Gwen Merridew BA BSc MBBS DTMH

Basic Physician Trainee, Launceston General Hospital

PO Box 1328, Launceston, Tasmania, Australia 7250

Nancy.Merridew@gmail.com

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