The Art of Medicine and the devolution of bedside manner

On the phone to the doctor’s surgery, I speak with a receptionist.

‘I have a repeat prescription, but I have to come every three months to renew it. I wonder if I could have it on a six-month repeat?’

The dragon at the gate shoots me down with the flames she breaths.

‘Definitely not. You’re lucky to get a three-month repeat. Usually we ask patients to come every month.’ I shrink back from the receiver at the thought she might revoke the privilege but I’m too puzzled to stop.

‘Why is that? A doctor has never once asked to see me about this prescription, to monitor me, not in several years.’

The receptionist replies with a little puff: ‘The NHS wastes millions of pounds on drugs because people die with their bathroom cabinets full of medicines. Then their relatives bring in bags of unopened drugs, and all we can do is throw them away.’

As someone with cancer in remission, I’m stunned into silence. Perhaps she hears the echo of her words in the pause, before she says, ‘I’m not saying you’re going to die, necessarily. But we can’t go giving six month-prescriptions to people with terminal diseases.’

And there it is before me: the uncertainty of my life weighed up against the brutal certainty of the NHS official line, spouted by a member of staff who might benefit from a course on bedside manner.

While bedside manner is mostly considered the domain of medics, it’s relevant to many staff beyond. Over the last twelve years, I have been initiated and confirmed as a regular patient with doctors and support staff in several fields. From oncologists and surgeons to obstetrics, plenty of GPs, nurses, porters, emergency doctors, paediatricians, cosmetic surgeons and dozens of operational staff on the way, I’ve met a lot of people with many variables of bedside manner at several hospitals.

There was the consultant who delivered my first completely unexpected diagnosis of cancer with his head bowed to his shoes. He told me I would never have children. There was the pregnant intern who stood belly-to-belly with me when I was actually pregnant but also had cancer, just after a mastectomy, and she wiped the optimistic smile from my face with pitying remarks about my bleak outlook. There was the nurse who tried to issue a post-surgery injection but refused to tell me what it was for, so a scene fit for a horror movie ensued in which I refused to submit to his needle.

Over this time I learned that any member of hospital staff, however influential or menial, has the power to make a frightening experience either manageable or unbearable. I became the evidence of how a doctor’s attitude towards his or her patient can trigger an early self-discharge from advised hospital care, or prompt a regenerative slumber after a reassuring conversation post-surgery. I learnt from both bitter and grateful experience how a doctor can humiliate or empower a patient, and how valiantly skilled a doctor must be to employ sympathy and gentle guidance when his or her patient doesn’t know best.

The consideration of bedside manner – sometimes referred to as ‘the Art of Medicine’ – is as ancient as the concept of medicine itself.  Its place in medical texts dates back to the 4^th century BC with the Hippocratic Corpus, the original Ancient Greek medical works associated with the physician Hippocrates. Back then, a doctor’s manner was the essence of a patient’s treatment. The ancient words are still pertinent today:

‘The physician ought to be confidential, very chaste, sober, not a winebibber, and he ought to be fastidious in everything... He ought to have an appearance and approach that is distinguished…  Be solicitous in your approach to the patient, not with head thrown back (arrogantly) or hesitantly with lowered glance, but with head inclined slightly as the art demands.

‘He ought to hold his head humbly and evenly; his hair should not be too much smoothed down, nor his beard curled like that of a degenerate youth. Gravity signifies breadth of experience. He should approach the patient with moderate steps, not noisily, gazing calmly at the sick bed. He should endure peacefully the insults of the patients since those suffering from melancholic or frenetic ailments are likely to hurl evil words at physicians.’

In Arizona, USA, one doctor has taken a step further in training medical students in bedside manner. A fascinating programme known as Horses for Healers is a system that uses the way horses mirror body-language to teach trainee doctors to communicate with their patients more sympathetically.

Dr Allan Hamilton, MD, FACS, is a Professor of Neurosurgery , Professor of Radiation Oncology, Psychology, and Computer and Electrical Engineering at the University of Arizona. A recipient of many awards and honors, Dr Hamilton has life-long experience of horses and owns a ranch through which he and his team facilitate various healing and teaching programmes.

He says: “Doctors would be far more respectful of their body language and bedside manners if their patients all weighed 1,200 pounds; horses help medical students and professionals learn non-verbal communication skills demonstrating the powerful voice of our body’s language.”

While some things haven’t changed since Hippocrates issued his advice more than 1,700 years ago, the dawn of self-diagnosis in the era of the internet really has tipped the balance of power and complicated the relationship between doctor and patient. Like those horses at Hamilton’s ranch, we have all our own peculiar history, own levels of knowledge and our own expectations.

                                                                                      

At regular follow-up appointments with my breast cancer surgeon, I often reported worrying abdominal pains. He listened patiently, questioned me about their nature, and monitored them. And then, at my last appointment, he leant towards me in a conspiratorial way, and said with the skill of a doctor who had clearly taken the time to understand me through three surgeries and many years:

‘Well, it can’t be cancer, can it, because if it were, you’d be dead by now.’ We laughed, I went home reassured, and the pains disappeared. His bedside manner had cured my anxieties and my symptoms in a way many wouldn't like, but tailored just to me.

If I were one of Hamilton’s horses, I may well have stampeded over some of the individuals who have played a part in my medical care. But my surgeon, I’d have been eating out of his hand.

Finding dignity in bereavement

In September, some friends in the village tragically lost their baby to leukemia. Sebastian was 39 weeks when he died, his curtailed life shorter than his gestation.

Instinct and received wisdom tell us to lose a child is the worst bereavement a person can suffer. To watch life ebb from our own precious creation, a life we assumed would endure beyond our own demise, is a cruel disruption to natural order. To the uninitiated, it seems incomprehensible that such a loss would not result in the total collapse of our world around us. 

 ‘I can’t imagine what they’re going through,’ said a downcast mother in the playground at school pick-up, soon after Sebastian had died. Which is exactly all we could do – imagine – for if we are lucky enough not to know the pain ourselves, imagining is the only route we have to empathy. Translating that imagined scenario into the right kind of empathy is the difficult part. How do we find the words and actions to console, not to offend, not to allow the loss to become the elephant in the room? How also do we keep from dwelling on the tragedy, but instead allow the bereaved the freedom of laughter, of normality, without awkwardness? In the West, where infant death is mercifully uncommon, we have few points of reference. 

In our village, we have been lucky. Friends and acquaintances have been led by the bereaved themselves. What seems incredible – brave, inspirational, counter-intuitive – is that we see the everyday of family life with two remaining young children continue, without drama, in a very routine way. The strength and dignity with which this grieving family has fortified their unit is immense. 

While everyone on the peripheries wants to help, we don’t necessarily agree on ‘the right thing’ to do. An ‘In Sympathy’ card didn’t feel quite right to me. But was an email too impersonal? Flowers seemed inappropriate, because I think of them as a mark of celebration or a ray of sunshine on a gloomy day. How could pretty blooms go the distance here? How about chocolates, bottle of wine, or a cake? Perhaps there would be scope for basic gratification amid grief, if it was served-up? I opt for the cake. My mistake was trying a new recipe, using a glut of early-autumn courgettes. The sodden chocolate and courgette brick I created was unfortunately not good enough to share. My husband cut a wet slice of the finished product and pulled a face. ‘I’ll eat it,’ he says helpfully, ‘But I wouldn’t give it to anyone else.’ Perhaps it’s a sign, I think doubtfully, that the cake wasn’t the right offering, and good intentions turn to dust.

The next day, I learn a valuable lesson from our younger daughter, age nearly four. When I tell her over lunch about Sebastian’s death, I am touched by both the maturity and simplicity of her response.  We visited Sebastian at Great Ormond Street while he was being treated, so she understood that he wasn’t very well.

‘He has died?’ she says with surprise, ‘But he was a baby! He hasn’t even spended his life being a children yet!’ 

After choking on a sob, I take a breath to explain not everyone lives long enough to grow up. ‘When you’re dead,’ she continues, testing her limited knowledge, ‘You can’t come alive again. He will never be able to play with his toys again, or go in his pram, or even be holded by his mummy.’ As she declares each denied rite of passage, my throat tightens a little more. With a sigh, she slumps her head into her little hands, elbows on the table, and looks reflective for a few quiet moments. Then she says, ‘I still feel quite sad about baby Sebastian, that he has died. Maybe some pudding would make me feel better?’ 

As I agree with a smile, my mind turns to the chocolate courgette cake. How childishly simple my instinct was.

This weekend, the village church was packed as family and friends came together to remember Sebastian’s short life in a memorial service. To listen to the family’s words was humbling – the eulogy and the genuinely personal, grateful thank-yous. The sadness was immense, the hurt tangible. Yet laughter was invited; this was the sadness of admirable survivors. 

It is so easy to be paralysed by uncertainty, whatever the circumstances. By doing nothing we may avoid doing the wrong thing, but for certain is that we can never do the right thing either. Sebastian’s parents have been so generous in their gratitude to everyone. While we may feel we’ve done so little, not enough, perhaps by offering a drop of comfort, we can collectively create a sea of support.

I have learned much from Sebastian’s death; one thing is the ambitious point of reference it has given me for coping in adversity.

Sebastian’s parents have been through an experience worse than most of us will ever know, but something they have never inspired is pity; their dignity is far too great for that.

………………………………………….

Sebastian’s family are fundraising for research into blood cancers in children at Great Ormond Street Hospital. To help give hope to other families, please donate to Sebby’s Brighter Future Fund https://www.justgiving.com/sebastianjosephlloyd

Living with mortality: the legacy of cancer

Oncology season is approaching again. Next month, I will arrive with sweaty palms and dry mouth at the hospital which summons supressed fear the moment the A-road heralds the big ‘H’ signpost.

While I perch restlessly waiting my turn alongside fellow cancerees, I will swallow the dreamlike memories that seem to send Pavlovian blades of ice through my heart, and will flick blindly through an old issue of a tacky magazine. 

By the time a nurse calls me in, I’ll be so stricken with embittered adrenalin that I won’t be able to smile. I shall come across as supercilious as I take my seat in the consultation room and wait for the oncologist to enter. Yes, I know what’s coming because I’ve done it all before, many times over the past ten years. Yet still, I never know the full story.

How being a mother to two daughters stirs the feminist in me

Last week, I had a profound and memorable nightmare that left me awake under the covers in a sweat of shame. 

The gist of the storyline goes that in meeting up with old friends and colleagues I haven’t seen for more than a decade, I absent mindedly turned up to an old London haunt wearing my apron. 

With a floury handprint on each thigh, the shame brought by the public realisation I was sporting my homely pinny, next to the professional attire of my friends, resulted in the contemplation of some home truths. 

A no-makeup selfie too bare to bear

Many years ago, a friend gave me a piece of advice that served me well – until recently. She confided that she found it useful to see herself in her mind’s eye as more attractive than experience, and a mirror, told her she really was. I took on board her philosophy, and developed the theory (rather than the practice) that I had to believe in my own appeal in order to convince others.  After all, perception of appearances is surely attitudinal, as well as aesthetic. Back in the healthy glow of youth, when looks were the chief currency of dating, this kind of delusional confidence was a definite asset in many areas of life. 

Then, last month (bear with me – I’ve had a holiday from blogging), the no-makeup selfie in aid of Cancer Research raised a massive £8m. Exposing our own bare-faced truths and the illusion of our made-up faces played to our shameless curiosity, as well as the vanity of the lucky few who found the time to be multitudinally and ravishingly makeupless. The exercise was a resounding success.

One boob or two?

If you’d told me when I was a teenager that I’d have a breast amputated in my 30s, I would have wailed in horror. Back then, looks meant so much and I felt that somehow my appearance would dictate my fortune – and not just in the mating game. 

Fortunately by the time fate intervened and it was a toss-up between my boob or my life, the boob suddenly seemed rather insignificant. It was with regret I took a last look in the mirror the night before surgery, steeled myself, and waved goodbye to a unique protrusion of my identity. 

I’ve blogged before about the collateral of defeating cancer, and how very lucky I know I am to be here, and I’ve written about the umbilical miracle that meant not only could I escape with my life, but with the life of my unborn child, too. So I am not ungrateful, but the mutilation of survival does give me the odd moment of chagrin. 

Although my mastectomised chest is not a pretty sight, what bothers me most is the nuisance of disguising asymmetry. I could choose to have reconstruction, and many friends are agog that I have not opted for a pair of Double-Ds on the NHS.

'No more chicken fillets!' they encourage, 'Imagine the cleavage of your dreams!' But it's complicated. Were it a simple case of implants, I'd be under the knife quicker than you could say '34C please'. But surgery means robbing Peter to pay Paul, and I'd have to choose a body part to masquerade as a boob. Naturally it would have to be a part that lends itself to the consistency of breast tissue, such as fat from my belly, back or thigh. It would mean grafting skin that wouldn't match, dealing with scars resistant to healing, even feeling an itch on my back and having to scratch the new boob to satisfy it. All-in-all, I'd end up another step closer to Frankenstein's monster. No offense intended to anyone who's chosen reconstruction - I am completely respectful and understanding of individual choice, and don’t believe one route is better than another. But the collateral physical compromises of reconstruction are a step too far for me.

And so it is I choose to live mono-breasted, with only a little heartache.

Still, there are practical difficulties which leave me frustrated. Swimming is one activity which makes my heart sink. The fewer the clothes, the harder the disguise. At first I avoided swimming, even at the expense of my children. Then I purchased some fiddly, uncomfortable swimwear with water-logged chicken fillets, and braved the waters. But honestly, the whole rigmarole was putting me off.

So it is I come to write this blog, after a remarkable, timely coincidence which recently gave me renewed courage to just be as I am.

I've taken to using the half-hour of my daughter's swimming lesson to grab the opportunity for a quick dip myself. Three weeks ago, I told myself while hanging up the wet stuff that this was silly; it was time to swim au naturel. Not nude, please note, but wrapped in a swimsuit, single-breasted.

I emerged from the changing room with trepidation, avoiding all eye contact en route to the water's edge, clinging tightly to the towel, praying nobody I knew would be here to see me. I counted to three, shed the towel swiftly and jumped straight in to the water's concealing embrace. Then I swam 20 lengths, showered with arms across my chest, and retired triumphant to dress. Yes! I'd done it. So much easier and more comfortable. I might even do it again.

Once I was clothed, I opened the changing room door to retrieve my daughter.

And there in front of me stood... a one-boobed woman! She used no towel to disguise her figure, which missed its left breast. She chatted happily to her friend and their small children, and seemed totally unselfconscious. I was almost disappointed to be clothed, with my curves strapped back on.

Had I been in my costume, I may have dropped my towel and shouted,

'Ta da - snap! Together, we have a matching pair!'

Thank you, dear stranger, for the unknown solidarity you have given me by being there just at the right moment.

The rings that bind us: what's in a wedding?

It took ten years and two children together before my husband and I were newlyweds. 

As bride and groom heading for the age of 40, secure in a relationship that had endured serious sickness and enjoyed years of health, we tied the knot retrospectively. By the time we got round to the wedding ceremony itself, our vows had been made in practice, rather than promise, and the wedding was more about practicality than romance.

My grandmother (right) wearing the wedding ring (right hand) that is now mine. A kind Welsh woman (left) took my Austrian grandparents into her house in 1940, just a week before my mother was born (snugly swaddled in the centre).