Life and Death through Faces of the NHS

The inspiration behind the project and my future plans to specialise

Alexandra Adams – Junior Doctor

I had become well accustomed to all things hospitals from a very early age.  Born deafblind, with some additional multisystem illnesses, I was in and out of hospital throughout much of my childhood and teenage years.  At 16, I was in hospital for a year and a half, following 20 stomach surgeries that went rather wrong, leaving me with two feeding tubes and a few too many scars.  But, as a 16 year old, I was classed as an adult in my local hospital trust, so consequently, I spent much of that time bedbound, surrounded by far more geriatric patients to myself.  I have little memory of that time, being overwhelmed to the eyeballs with morphine and epidurals, a constant daze of sleep.  Yet, from what I do remember, what I could hear, were the incessant screams of the 4 other dementia patients rattling their bed rails and shouting out their grocery orders in the beds next-door to me.  Gladys was the exception.  A quiet, composed, yet rather reserved lady, with brazen grey hair, a single wisp hanging over her left eyebrow.  I came to know that she was biting her lip through a crippling illness.  She lay forever in dwindling pain, swooped over by the cool froth of nausea, and from beneath the hospital bed blankets she was wasting away to a heap of soft bones.  Yet still, we exchanged smiles each morning and asked each other how we slept that night.

It wasn’t until I undertook my work experience that I witnessed what “really sick” truly was, truly meant.  I knew for a long time that I wanted to do Medicine, to give back, to intertwine the complexities of science and people together, and I just couldn’t wait to get onto the wards to meet the real patients, experience real Medicine.  And on my first voluntary night shift, I experienced just that.  But I was disappointed to be laden with none other than the mundane task of supervising the ward’s dodgy printer and photocopier.  It had regurgitated a single piece of paper out of the bottom, right corner creased, ink splodged to the side, when the first call bell rang.  An elderly lady, quiet and composed, sat upright in bed, her face cool and ashen like the hospital concrete glowing in the night.  Her hair was brazen grey with a single wisp of hair hanging over her left eyebrow.  She was retching, an endless stream of silky black serpents wriggling from her mouth.  I ran over with towel after towel, umbrella heads of bright red blood spewing out and through the paper.

Gladys died that night.  End-stage oesophageal cancer.  She was ushered into a side-room, the door closed behind her, with her family around the bedside. On the door stuck a single piece of paper, creased in the right hand corner with a splodge of ink, reading ‘Do Not Disturb’.  It felt surreal, not so much that she had just died in front of me, on my first night shift, the first person I had witnessed dying, but rather, I knew her long before I started.  Once, she had lay there, quiet and composed, in the hospital bed next to me, as we both wallowed through months of bedrest on the surgical ward together, exchanging our smiles each morning.  I would never forget her.

Back on the wards as a medical student, things have only got more interesting, complex.  On my first day of placement I was bellowed at by a senior doctor, reprimanded for “taking up” the FY2’s chair, the last chair remaining, in the staff-room whilst they had their briefing pre-ward round.  The FY2 turned up, 20 minutes later.  I was told to go stand in the corner, because I was “below everyone else” in that room, in that hierarchy.  I was staggering ever so slightly, my matchstick legs trying to keep up my weight.  Just a few weeks before, I had come off of a three-week stay in Intensive Care, intubated for a fortnight and ravaged by sepsis.  I wasn’t even sure whether I wanted to be there.  I was not in any way made to feel like a part of that team.

Very swiftly, we moved onto the ward to see each patient.  There was an odd familiarity of the place, the smell of hospital bleach reeking down the length of the sweaty corridor, the rattle of the drugs trolley and the low, irritating hum of the side-room’s CPAP machine.  We got to Bed 4 when I halted.  I stepped back and stuttered.  The consultant muttered something under his breath, before barging past me.  “Stupid medical students.  Waste of space”.  Little did he know that I knew him, that consultant.  And I knew Bed 4 too.  2 years previously my Grandma lay in that exact same bed, under the care of that exact same consultant.  Battling COPD, and on the list for a bed in the local hospice, her remaining time with us was cut abruptly short when her O2 on the wall was accidentally turned up to 8.  Her face turned swollen and yellow, her pondwater eyes lovingly glazing over at me, expressionless.  Her face still had so much meaning.  That face still told so much story.  Still, she turned acidotic within just a few hours.  Within just a few hours she was dead.  And yet, what was the last thing she said to me?  She didn’t want to die in hospital.  She didn’t want to smell the reeking hospital bleach down the length of the corridor, or hear the rattling drugs trolley and irritating hum of the CPAP machine nearby.  That’ll stay with me for a very long time. Very swiftly again, we hurried onto the next patient, Bed 5.  Again, the doctor turned around and glared past me. “What are you doing with that patient’s cane?” he bellowed.  I explained that the white cane was in fact mine.  I was registered blind.  The consultant looked evidently taken aback, but with that, he told me “do not touch any of the patients”.  In front of our colleagues, the patients and the patients’ relatives.  I felt disgusting.

They say bad days lead to better futures, so bearing in mind it was still the beginning of my clinical placement as a medical student, I was understandably still optimistic about things.  Only, later that day, I was sat down by another senior doctor and told to “Imagine if you are a patient.  Would you want a disabled doctor treating you?  Absolutely not!”  I was then dismissed and sent home.  On that journey home I had seriously contemplated whether giving up Medicine this soon was truly in my best interest.  What I had experienced that day was not what being a doctor was about, it was not what I had come into Medicine for.

These experiences of discrimination and stereotyping on a daily basis in the early times of my clinical placement was what got me thinking about the images and expectations behind being a doctor, being a nurse, a porter, a radiologist, a secretary, a catering assistant, and so forth.  An NHS employee.  And it was this that inspired me to start up the ‘Faces of the NHS’ project, a photography series that aims to capture and celebrate the differences and diversity of everyone who works for our NHS.  I wanted to break down those outdated stereotypes and replace them with the message and story that we are all different, and we should be proud of that, not belittle it.  Just like my Grandma taught me with her pondwater eyes and lovingly stare, every face has a meaning, and behind every meaning there is a story.  I am hoping that, over time, I can make my way around the rest of the UK, taking photographs and gathering these many stories behind our NHS employees so that, eventually, I will have a huge collection of faces to collate into a large montage piece.  This will be a positive and collaborative representation of our incredibly diverse and beautiful NHS.  And then there will be a book, so that our diversity can be imprinted to page, in that our participants and their many following generations to come, can have this reminder of our diversity as a keepsake.

The scale of the project thus makes it no small one.  ‘Faces of the NHS’ could potentially be huge, and its gradual nature of taking me across the width and length of the UK will mean that it could take time.  But beyond ‘Faces of the NHS’, I have been asked where I otherwise see myself next, and the answer to that, is quite confidently, Palliative Medicine.  I have already mentioned that I have become well accustomed to being in hospital myself, which has no doubt provided me the necessary empathy to give to my future patients.  But I have also become well accustomed to death, or more precisely, near-death.  My 13 ICU admissions so far have landed me into some very touch-and-go situations, where each time round, the ‘this time’ may’ve meant no bouncing back, and my family having to yet again prepare themselves for the worst.  But I have bounced back, and touch wood, I don’t have to keep experiencing these disorientating, traumatising times in a limbo between life and death.  But I had that choice, that chance, to recover and recuperate, and to build back up to a life of pretty much normality in between bouts of critical illness.  My Grandma didn’t.  Her chronic illness, in her last few months, imprisoned her inside her own living room, mindlessly staring through piles of old photo albums, black and white photographs of beach holidays and Mr. Whippy ice-creams.  She was shunned away from all living life outside, the cold, fresh air, resulting in her barely having any quality of life left.  And no matter how hard we tried, encouraged, held her hand and hugged her, nothing was helping.

Having recently studied polypharmacy in medical school, I still believe that she, my Grandma, was the utmost exception, the extreme percentile.  The number of medications she was concocted by on a daily basis, swooned way above the 20’s.  It engulfed her.  And they were keeping her alive.  But what did help break the endless fear and fret of the creeping COPD that consumed her, was a foldaway chair and a Lidl ice-cream cone.  A few days before, I unfolded the chair onto the front doorstep, just about so that the sun shone directly on her pale, drawn out face.  I carried her in hand to the porch-way and helped her sink into it, handing over then an ice-cream cone squished with a small scoop of vanilla.  Just like that Mr. Whippy.  That, made my Grandma so happy.  Not the drugs.  Not the oxygen.  Not the endless appointments up at the hospital that she couldn’t even get to.  But sitting in the sunshine for a few minutes, nibbling away at her favourite dessert.

The rules and stories of Palliative Medicine has helped me realise that it’s quite often the small things that mean the most, more than any of the bigger, more clinically obvious interventions in Medicine.  And achieving those small things makes helping your patients the most satisfying aspects too.  I know I didn’t come into Medicine to be discriminated or dismissed because of my disability and differences, nor to have to go home every day only to contemplate whether or not to give up.  And actually, the more I think about it, I didn’t come into Medicine wanting to necessarily save lives every day either.  I came into Medicine to make a difference, no matter how small or big that is.

On that bigger scale though, I hope to make those differences through my project, ‘Faces of the NHS’, showing society that we can celebrate the diversity amongst us and fellow NHS employees in the workplace, and that our differences give scope for the greatest teamwork.  In a time where there is so much negativity in the media and in politics, positivity through the language of faces, stories and exciting interaction I hope can make an insightful difference to many, if not all of us.  But, on a smaller scale, I also hope to make differences to individuals, like to my Grandma and to Gladys, bringing the little things out, the gesture of smiles, the foldaway chairs and the ice-cream cones, to make the biggest satisfactions to patients.

Fact is, we both knew that she was dying, and yet, we never really brought up the subject or talked about death.  I was so oblivious to the fact that Palliative Care was so much more than just treating patients with a cancer diagnosis, never mind chronic diseases such as COPD and heart failure.  Inside she must’ve been so scared and daunted, but still I come across so many patients with terminal illnesses that are nothing but positive and upbeat about their journeys, brushing off the faff and fuss and making the most of every day.  After all, we are all going to die one day, aren’t we?  Whilst I hope metaphorically speaking my ‘Faces of the NHS’ project will help negative stereotypes, discrimination and NHS bullying die out, I hope that through my future career as a hopeful Palliative Medicine doctor I can help my patients live to their fullest until their very last day.

*For the purpose of this blog, all names have been changed to respect the confidentiality of patients

Palliative Medicine ST3 Interviews.

Portfolio Preparation

The ST3 recruitment website contains detailed information on organising your portfolio and provides an “evidence summary form” which should be completed in advance.  A well organised file makes it easier for the interviewers to find evidence and allocate the appropriate marks.  To make evidence obvious, highlight your name in publications or presentations.  The portfolio can take some time to organise so leaving plenty of time for this is advisable.  Once completed make sure you know your evidence well, read it through 48 hours before the interview so that if asked about a particular piece of work you are familiar with it.

Interview Preparation

Practice is essential to allow you to answer questions in a confident and efficient way.  Finding a trusted colleague to practice questions with and provide feedback is a great way to prepare and will allow you to identify areas to develop.

What is the interview like?

The interview consists of three stations which are approximately ten minutes in length each and the whole process will take around 45 minutes.  All stations have 5 minutes preparation time prior to each one and in stations 2 and 3 this time is needed to read a scenario.  A breakdown of the scores available in each is available on the ST3 website.

Station 1 – Portfolio station

The interviewers will have your evidence folder and review it prior to meeting you.  This station allows time for the interviewers to ask about your experience and suitability for the post.  It provides an opportunity to describe how you have shown commitment to the specialty and the skills you have already to bring to palliative medicine.  A knowledge of the person specification is helpful to look at desirable characteristics for potential trainees and what the interviewers will be able to score candidates on.

Station 2

This station begins with a clinical scenario and the interviewers will want your opinion on how to proceed in the circumstances presented to you.  It is useful to have a structure on how to present your clinical thoughts to keep your answer focussed and logical.  Consideration should be given to patient safety, finding out more information and seeking support when appropriate.  The second half of this station concentrates on professionalism and governance.   It is advisable to review Good Medical Practice for this.

Station 3

You are given details of a scenario which will require you to use your communication skills.  There will be an actor to role play the scenario with you and following this the interviewers will ask you to provide reflection on your communications skills.  In preparation it’s helpful to review your communication for possible reflections and be honest in your reflection to the interviewers.  I made an error in my scenario but reflected honestly and openly about it.

Plan “B”

Competition can be tough for an ST3 post, however, round 2 recruitment often has training numbers for a later intake and the application process is identical.  Additionally working in a hospice or with a palliative care team can provide invaluable experience prior to reapplication and is a common route to training.

Stephanie Hindle

ST3 Palliative Medicine

Grief is Natural
With you,
Everything was warm.
The colours were rich.
Out of the window,
Azure skies, lush summer grass
like Borealis,
The cherry-plum sheets that I lay in with you,
Mugs the colour of the Sahara,
which you give me full of tea.
Then you were gone
And everything went black.
It happened so suddenly
Like a thunderstorm rolling over the ocean’s horizon
Powering towards us
I was helpless to help you..
Nothing but ash stretched out in front of me
As I lay motionless on the bathroom floor,
A fire burnt out.
It’s tradition to line up, solemn, dressed all in ochre.
The sun had set on our time
Black is only the absence of light;
An abyss of emptiness.
After the funeral,
No longer was I flooded with support
As others gradually turn forward.
I was not prepared
To face the rain alone.
It drenched me cruelly
Millions of tiny pinpricks
It was not blue but grey
The sky cried with me
Why is it that your heart feels like it is ripped through your ribs
Like raindrops that were torn from the clouds
Small exchanges repeat in your conscious
Eternally spitting
My body is searching for a soul
that has already passed this barren land.
And I am choking, contorted in a cocoon
The physical manifestation of a love lost,
the sound of loneliness.
Now,
Sometimes,
in the heat of the pub,
A friend shouts a joke over the bustle
And my face cracks like the ice of frozen ponds in spring
As I laugh..
Sad birds still sing.
And then
I get up and run
And the guilt washes over my body
A shiver in snow
And my brown eyes weep.
Now I know
Beautiful arcs can only come after the water.
I hope that,
One day,
There will be glittering sunshine at the end of the tunnel
And all I can see is gold..
And then
When it is my time
And the curtains are closing,My palm will curl round yours once more
Fingers on your honey skin
As you lead me into the next…
And the sun will blaze with grace

Poem by Annabel Ariyathurai
4th Year, University of Birmingham

Small things
It’s the small things.
The teeny, tiny things.
Paint peels away from the window panes; that was always his job.
He was so meticulous, obsessed with being neat
and she couldn’t stand the smell; it was just how it was.
Weeds now sprinkle a once blooming vegetable patch
Replacing the tomatoes, beetroots & sugar snap peas that he once cared for.
She always laughed at the way he sang when he watered them,
As if they could hear his gentle encouragement.
Sometimes, I catch her glancing out the window,
Her gaze unfocused for a passing second.
She blinks.
And she returns to me once more
Smiling wistfully and apologising ‘Off with the fairies again today – I’m sorry.’
Her emotions escape in those brief moments.
I see her lose him again.
Hurt, anger, disbelief
Flash across her face, temporarily unmasked.
Every agonizing moment resurfaces.
The diagnosis, the never-ending hospital trips,
The worrying waits before doctors discussing – results, scans, and options – appeared.
The steady erosion of him.
Each fragile fleeting glimmer of hope crushed.
Her weary exhaustion, from hours spent at his bedside, traps her anew.
All these small things; these teeny, tiny things invade her.
Remind her of a battle lost and a life that is no more.
They do not conquer her though: only disarm her briefly, when they intrude on her unaware.
She is strong. That isn’t just something friends tell her.
She is strong.
She lives for the big things now.
That celebrate the legacy of a life shared together;
Friends, faith, family.
It’s the small things she remembers.
It’s the big things she lives for.

Poem by Simran Kaur Deol
4thd Year, Birmingham Medical School

“How’s the family?”
In a moment, he becomes a memory.
I am in a state of shock.
I hear his voice; “how’s the family?”
I’m rewinding back the clock.

Reminding myself of our story,
Holding on to not letting go,
Remembering him in his former glory,
From our final goodbye to our very first hello.

I hold back the tears until I’m home
In my own private space to cry
For tears to be shed, I need to be left alone
To repeatedly ask the unknown, why?

Why did he have to leave this world behind?
Why does it not feel real that he’s gone?
Why now? And not in a few months’ time?
Why does it seem everyone else is moving on?

I’m treading water in the sea of whys
Feeling drained as each wave of why hits
I slowly start to sink, and not even try
To resurface – the sea is cold and the despair fits.

The blue below darkens with every metre I sink
But there is still life in the sea
It’s adapted to its conditions, does not overthink
It’s adjusted to the darkness, unlike me.

I sink further into unknown territory
A world where he does not remain.
But find others sharing this loss with me
The time has come to for us to retrain.

We mutter “I’m sorry to hear” between us
And to him, say our departing goodbyes
Together we try move forwards
But I’m still stuck in a cycle of asking why.

Why did he have to leave this world behind?
Why does it not feel real that he’s gone?
Why now? And not in a few months’ time?
Why does it seem everyone else is moving on?

I still don’t know the answer to these questions
But I’m now floating on the sea of whys
A why shared can help provide a direction
We’re all readjusting the role he played in our lives.

In a moment, he became a memory
But more moments since then have passed by
“How’s the family” is now his melody
The words I remember him by.

Poem by Charlotte Letheren
5th Year, Plymouth University

Grief
In a bubble, completely numb,
The hours drift away, one by one.
How could this happen? How is it fair?
All I can do is sit here and stare,
Out of the window as night begins to fall.
I’m stuck to the spot; barely here at all.

Need to do the paperwork, need to call the bank,
Feeling like I’m part of a cruel, unpleasant prank.
Angry at the world, both strangers and my friends,
Living through a nightmare I’m not sure will ever end.
Wanting to scream loudly; explode with a blast.
Everything has happened just far too fast.

Suddenly I feel as if I might drown,
Going to be sick, quick, I need to sit down.
The bubble rips open, the floods come in,
Torn apart, aching, and hurt from within.
As abruptly as it started, it ends the same way,
With darkness surrounding me the rest of the day.

To never see those eyes again, or hear the laugh I love,
Leaves me feeling empty, our time was not enough.
Talking may help, though it’s not the cure,
One step at a time, I can smile once more,
At the memories we shared and the moments we had,
Learning to cope, through the good times, and bad.

Poem by Charlotte Tasker
Final Year, Leicester University Medical School

Sometimes I forget and hear your voice

Sometimes I forget and hear your voice
I search frantically for a source but cannot find it
It’s just in my head. I think I know this by now
Some days I feel better, and think it will all be OK
The next day I feel guilty because it will never be again
And the next day I feel as though it has only just happened
I don’t feel numb anymore. Now I feel everything
Desperation, despair, disorganised, drained. I feel done.
But still I can’t stop thinking about it. I don’t think I want to
One day I know that I will stop feeling like this
I’ll stop tracing your steps, stop looking for your face
But I will never forget. I will always remember your voice

Poem by Lucille Mclean
5th Year, University of Cambridge

Grief

Grief.
People deal with grief in different ways
They may grieve for weeks, years, or perhaps forever
Grief can be powerful, changing how people live
Grief can bring back memories, happy and sad
Grief can be sudden or gradual
Grief can isolate
But grief can also help unite
Everyone grieves at some point
Whether a relative or a stranger
People live with grief
Grief can remind us of what is important
Spending time with those we love
Isn’t that what grief is
Us showing our love

Poem by Atiyya Islam
4th Year, Plymouth University

I spent 3 short weeks on elective at Hayward House Hospice, Nottingham, and here is a snapshot of what I learnt there:

Lesson no.1 – The hospice tree

To be completely honest, a few months ago I didn’t understand what a hospice was.

There is a ward for inpatients, yes, and people do go there to die – but that’s just one branch. As a whole, the tree looks after patients and families of patients with incurable diseases, and looks after them in every way it can.
There is day care – a lively social club of sorts with a clinic running alongside it, full of volunteers, newspapers and food. There’s a complementary therapy block – similar to a spa with its pine wood walls and aromatherapy oils. The ward is where patients go either for a few days to get their symptoms under control, or for end of life care. There are hospital and community teams for helping out and advising on the care of patients elsewhere. And finally there is a host of teaching and research activities which the team is enthusiastically involved with, from co-writing the Palliative Care Formulary to teaching expert communication skills.

Lesson no.2 – Hospices are rule breakers

It’s in the little things they do. Real flowers are allowed on the ward, and more than 2 visitors can come, and they could stay all night if they needed. Dogs come to visit, and patients can have a sneaky bit of chocolate or a drink here and there.

The ward is more like a home which happens to have doctors and nurses in it, rather than a hospital ward with rules. They focus on the individual and what would make them feel happier.

Lesson no. 3 – hospices tell the truth

“Just tell me Doctor, how long have I got left?”
For the first time I saw patients being given a straight answer, the doctor’s best guess. This was invariably followed by a sincere discussion about what they wanted to do in this time, what they needed doing for them, and gratitude.
I was able to learn communication skills from people who have sad and difficult discussions every day, and learnt to properly explore the patient’s anxieties first, and how to involve fully everyone in the room. It was invaluable to learn in this way.

Lesson no.4 – hospices aren’t depressing

That’s not to say bad things don’t happen there, because clearly they do. But the focus is always today – how are you feeling today? How can we help you today? – as well as making the experience of disease and end of life as positive as possible. As physicians, the doctors are experts are uncovering the source of patient’s pain and prescribing the most targeted pain relief.

In working at the hospice I learnt to deal with my own emotions and reactions to patients’ deaths, and found that talking it out with the team was helpful for everyone.

Will it make me a better doctor?

I am certain that this is true. In addition to the above, I learnt about symptom control at the end of life, including use of strong opioids and syringe drivers. I got to grips with some of the issues surrounding end of life such as symptoms of advanced disease, knowing when to start certain treatments and when to stop others. Also I am more confident in treating patients with incurable diseases and knowing how a referral to palliative care services may help them.
Practicalities of the elective

My elective was very easy to arrange by email. It would be good to check how many students are going to be there at the same time – more than 2 would be a little crowded.

I was warmly welcomed and felt part of the team from day one. Each day started with a ward meeting so I learnt people’s names quickly and I found out what was happening that day. The main activities included ward rounds, clerking new admissions, hospital team visits, and day care clinics. It was easy to get involved and I was able to actively help with care, not just stand and watch.

My top tip would be to ask everyone lots of questions about what they do, and to hear lots of interesting stories in return!
Jessica Richmond

Living Every Moment – my experience of Palliative Medicine in New Zealand
Working abroad – how I did it

Ever since starting work as a doctor, I had always wanted to work abroad. It was just a question of when. I felt that it would be useful to experience healthcare outside the NHS and that this would help me become a more resourceful and adaptable physician.
I decided to wait until completing Core Medical Training and MRCP, so that I would feel sufficiently experienced to make the most of the opportunity. During my CT2 year I sent my CV to hospices throughout New Zealand. I got a reply back from Hospice Southland in Invercargill, at the bottom of the South Island. Within a few weeks I had a Skype interview and soon after that followed a job offer. Deciding to accept the job and withdraw my application for ST3 training was a tough decision, but it ended up being one of the best
decisions I ever made.

Palliative Medicine in New Zealand

There are some differences in general between the healthcare systems in New Zealand and the UK, but the hospice system is part funded by government and part funded by charity, as is the case in the UK. Each hospice organisation covers a specific geographical area and the team will help support people in their own home, in care homes or as an inpatient at the hospice. At Hospice Southland we covered a large geographical area which incorporated the
region of Southland and the Queenstown area. There are many rural areas in Southland, which posed challenges in terms of supporting patients in their own homes. We worked closely with GPs and local district nurses, and often family members provided a lot of care support for patients.

A typical day at Hospice Southland

The day would start with an interdisciplinary team meeting, where we would discuss overnight calls, high risk community patients, and current inpatients. The hospice cat Meg would often join us for these meetings! As I was the designated community doctor I would often have a morning of home visits with one of the community nurses. I enjoyed being out on the road and travelling to different parts of the region to visit patients in their own
homes. Together with the nurse I would devise a management plan which included appropriate medication regimens for symptom management and future planning discussions. We would sometimes have lunch on the road, which was often a good excuse to sample some of the region’s best cafes!

Post of the Month: October 2017

Written by: Jennifer Short

REFLECTIONS

I am a core medical trainee who has wanted to pursue a career in palliative medicine since medical school. I have found many opportunities to gain valuable experience in the specialty, but recently I have very sadly gained a greater insight than I would have wished: my best friend passed away. She was diagnosed with a rare, aggressive cancer 18 months earlier and underwent several treatments and procedures, but unfortunately none were able to get rid of the disease. It is cruel and unfair (probably a daft thing to say: it often is I guess). She was a doctor too. Throughout this devastating time, we have seen healthcare through different eyes, from the inside, and I have noticed things, good and bad, often just the little things, but things that make a big difference, and I thought it would be good to reflect and to share, to learn lessons that might make a small difference to us, our patients and their loved ones.

Doctor as patient

Firstly, some thoughts regarding looking after a patient who happens to be a doctor.

Don’t be intimidated when treating patients who are doctors. We are all ‘normal’ people and in that situation, many of us will feel vulnerable, scared and out of control. We may just want to be treated like everyone else, to have things explained simply and thoroughly, and for no knowledge to be assumed. We will still want to be cared for and guided, and for someone else to be our ‘responsible clinician’ – that should not have to fall to the patient, they have enough to deal with. This of course will be different for each individual – as it is for every other patient. The rules still stand: treat each patient as an individual, be guided by them.

When breaking bad news to a patient who happens to be a doctor (or to a relative who is a doctor) good communication skills may become even more important. That person should, as much as possible, be protected from having to relay that information. It is not fair, nor appropriate, so make sure you take time to ensure that loved ones also understand. This may mean multiple conversations aimed at different levels but it is invaluable.

In addition to this, always bear in mind that what you are not saying is also important. Often we use ‘signposts’ when breaking bad news, give vague, brief information until we have a more definitive diagnosis and plan. However, this can be difficult with those who have some knowledge. They may be told that ‘the bloods and ultrasound show that the kidneys are bigger than they should be and are not working as well as they should be and this needs further investigation.’ A patient with medical knowledge may read into this what was not said, ‘it is very likely that the cancer has spread’. If not handled appropriately, this then puts them in a terrible position – do they break this potential bad news to their relatives, or do they quietly go along with it, silently distraught?

Doctor as loved one

Going from the role as doctor to the role as a ‘loved one’ if one of your friends or family is unwell is hard. Really hard.

The job we do is often tough at the best of times, but when you are dealing with a patient with a similar condition to that of your loved one, or when you are breaking bad news very similar to the news that has just been broken to your loved one, it can be unbearable. I have found that there is a ‘put on a brave face and get on with it’ attitude within our profession. This is not helpful, to us or our patients. We need to find a way to look after ourselves: peer support, senior support, friends and family, and time off work if necessary. You need to be able to be focussed on your job and your patients when you are there, so if that means taking some time out to focus on you and your loved ones then so be it. You need to be safe.

As I’ve already said, knowledge is hard. Equipping yourself with knowledge by researching the condition, treatment and prognosis can be beneficial and may help you to cope and also allow you to guide your loved one. However, it can also be dangerous. Firstly, you may not know the full details of your loved one’s case, so any research you do is unlikely to be specific to them. Secondly, you are putting yourself in a difficult situation if you know more than your loved one. If they chose to not know about their prognosis, for example, it is unlikely to be a good thing for you to know. Your job now is to support them, in the way they want to be supported. Don’t try and be their doctor, they will have enough of those.

The insight gained as a loved one in this situation can also have some positives and you may find new ways to help your patients: point them in the direction of a support group you may have heard your friend talk about; anticipate some of the issues they may face; understand just a little bit more how they, and their loved ones, might be feeling. But always remember that every person is different and never assume that just because you and your loved one coped in a certain way and wanted a certain amount of information, your patient and their loved ones will be the same. Keep a distance and keep perspective. The support and understanding of colleagues will play a big part in this.

Doctor of a patient at end of life

As I said at the beginning, I have wanted to work in palliative medicine for a long time. Throughout this journey with my friend I have at times questioned this desire and whether I have the strength to cope in such an emotional specialty. But these doubts have only ever been brief and ultimately I have been inspired by the palliative teams I have seen care for my friend. Seeing the palliative specialist teams from this point of view has also highlighted some important points to me which I think we can all learn from as doctors looking after patients at the end of life, whether in the palliative specialty or otherwise.

My experience as an ‘insider’ has made me realise just how difficult good, effective communication is, especially with end of life issues. Palliative consultants discussed difficult issues with us and they were amazing, explaining things clearly to us all and giving opportunity for us to ask questions. I would view these consultations as ‘successful’ and ones for me personally, to learn from. However, when non-medical loved ones later asked me certain questions, I realised that what you think people have understood from a conversation may be very different to what they actually have, especially when the topics being discussed are conceptually hard, as well as being emotional. As much as you can, go back, discuss again, ask them questions, as well as answering theirs. This may just help clear any simple misunderstandings, which may make a big difference.

You can have a big impact, not only for a patient but for those around them. How loved ones experience that death will make a huge difference to how they feel about and approach deaths they will have to face in the future, including their own. Simple things like staff using our names and showing genuine care by listening to our concerns and thoughts and making suggestions as to how we could care for her and spend those final days with her, guiding us through that part of the journey, made us all feel supported and cared about and empowered us to be there in the best way we could be at such a sad time. The memory of that compassion will stay with me for such a long time to come. As I said, much of this is simple and comes with just having basic empathy. But it also easy for it to get caught up and lost when you’re dealing with the day to day struggles of being swamped by the never ending tasks that need to be completed at work and the constant plate spinning that is involved in trying to maintain a healthy work life balance. We all know how hard it is and that frequently plates are dropped, but the next day we can pick them up and start frantically spinning again! But for that patient and their loved ones in that moment, this is the only thing that matters and there isn’t another chance to get it right. They need the support now. They need to be able to ask those questions now and not to feel rushed. Of course this is hard if you have to leave to do the school run and I don’t have any magic answer as to how to achieve this balance. I guess it is just about having these things in mind, trying to keep perspective and doing the best we can do at that particular time. Hospice staff seem to be amazing at this and I would encourage hospital healthcare professionals to spend more time at hospices, which are specifically set out for this purpose and where there is, in general, more expertise and time to focus on these aspects of care, and take back with them the skills learnt and experiences gained to the busy, less than ideal, hospital environment.

Practical points

Lastly, I would like to highlight a few general, practical points. These are things which seem like common sense and I’m sure we would all like to think that we do them, but I see on a day to day basis people not doing them, myself included.

Ask the patient. Remember that patients will often know a lot more about their condition and medications than many of those around them, including healthcare professionals, especially in complex cases. Listen to them and ask them questions, where appropriate of course. You may need to confirm things with healthcare professionals, but it can be much more time effective and accurate to walk to a patient’s room to check the drugs they are on for example, than trying to get hold of GPs, pharmacists, specialist nurses etc. It is also respectful to acknowledge that they have been competently managing their condition prior to coming into hospital.

Keep patients informed. It is all too easy for us to take on the role of the person in charge of the patient’s condition and by doing so remove their control and involvement when they are hospitalised. Put yourself in their shoes. They lie in bed all day and have things done to them, and often we don’t even inform them why or the results. The big procedures we are of course much better at, but how many times do you explain to a patient why a phlebotomist will be coming round to take blood from them in the morning, and later that afternoon when we sit and look at the blood results on a computer, how often do we go and inform the patients of the results, even when they are normal? Often it would only take a few extra minutes, but it is very important to the patient.

Complete death certificates as soon as you can. I completely understand that it is often one of a very long list of jobs to do and that we often have too many sick patients to look after, but I feel it is often not given enough of a priority by junior doctors. For that patient’s family, getting the death certificate means that they can get on with making arrangements, and having to wait even one more day for it, can make a devastating time even more distressing.

Conclusion

This is of course, just my reflection and my opinion, not based on any research in any way, but my thoughts on my experience. It focuses on issues that occur when the patient and/or relative is a doctor, but the points are relevant to all patients and our day to day work in general. I hope that it gives a slightly different perspective on some issues, that we can all learn from and reflect on in our roles, whatever they may be.

Post of the Month – August 2017

Written by: Alice Gray

After my FY2 year, I had decided that I wanted to take some time out of formal training to experience Palliative Care outside of the fantastic system we have in the UK. I was given the opportunity, with the support of Cairdeas International Palliative Care Trust, to spend six months as a volunteer doctor in Uganda with the Palliative Care Unit (PCU) at a large hospital. During this time, I was able to get involved in various aspects of the life of this busy department, from a clinical role, to teaching, to research and even supporting the set-up of a project to rear and sell pigs, aimed at improving the financial sustainability of the team.

Shortly after arriving, some members of the team were due to travel to Rwanda to conduct a palliative care needs assessment in Rwanda and I was given the opportunity to join them. It was a great chance to not only put my research skills into practice, but to see how palliative care can develop and become established in a resource poor setting. It did cause me to realise how much of my GCSE French I’d forgotten! We were able to visit District Hospitals that were more rural as well as large Referral Hospitals in Rwanda, collecting data and conducting some ‘basics in palliative care’ teaching sessions with various health professionals. Although oral morphine is slowly being introduced in Rwanda, access is still limited and it was humbling to see doctors trying their best to keep their patients comfortable with the limited resources they had. When faced with a patient who, following a stroke leaving her bedbound, began to develop pressure sores on her legs, they filled hospital gloves with water and placed them under her heels to replicate a pressure mattress. Their creativity did not cease to amaze me. It was encouraging to see the Rwandan Ministry of Health and clinical staff not only recognising the need for palliative care, but actively seeking support to develop their services from their Ugandan colleagues. The need for sustainability and a cohesive service is not easy and there’s no ‘quick fix’. But when I went back to Rwanda at the end of my six months, I was amazed at how things had developed, supported by the expertise, education and mentoring given by the PCU team.

During my time with the PCU team, I was able to learn from a variety activities. There were daily clinical duties, with ward rounds and tumour board meetings, teaching opportunities with medical students, pharmacists and other healthcare staff through lectures, mini-rounds and journal clubs. One day I found myself teaching a group of mental health nurses after they found that they were caring for a lot of terminally ill patients. It was an honour to be part of their first introduction to palliative care!

Clinical duties were for me the highlight. I would regularly elicit signs that I had only ever read about as patients presented with advanced disease for a number of different reasons. One such patient was a 27 year old woman from the north of Uganda who presented with a fungating breast tumour. She had presented so late as she had been afraid of coming to the ‘Western hospital’ and had tried to go to a local healer first. It was only when her pain became unmanageable such that she could hardly stand and the wound began to smell that she sought medical treatment. Unfortunately, she spoke a more rare tribal language that none of the team knew. However, they worked hard to overcome the language barrier to ensure that she understood what was going on and what treatment she was being offered. We decided to start oral liquid morphine for her pain and continued seeing her regularly. There were some difficult decisions to be made about treatment as chemotherapy supply had been unreliable and it was discovered on admission that she was also pregnant. The PCU continued to support the patient, her family and the ward team through these difficult decisions and the remainder of her admission. A month after her discharge, we bumped into her when she returned for an outpatient appointment and we almost didn’t recognise this smiling, chatty, walking young woman.

Being able to listen to patients’ stories and be a part of their journey is always such a privilege, but I have been truly humbled by what I have seen here. Seeing the high standard of research, persistent advocacy and compassionate clinical care being offered by the PCU team has been inspirational. Palliative care is a human right and should be available to all who need it, no matter where they are in the world. It is teams like PCU who are really making that not only a dream, but a reality.

Post of the Month: July 2017

Written by: Yuk Chun Lam

I spent six weeks at Mae Tao clinic (MTC) in Mae sot, a North-western town near the Thai-Burmese border in Thailand during my elective. Patients who visited the MTC were Burmese migrants who lived near Thai-Burmese Border or Burmese refugees who were displaced to Thailand because of civil war. I was placed in the medical in-patient departments where I looked after patients with various medical conditions and palliative care needs. I had the privilege to walk with a lot of patients along their end of life’s journey during my past experience working as an oncology nurse and medical student in the UK. It was such an inspiring experience to see how palliative care differed in the UK and Myanmar.

Demographic of patients

Comparing with the aging population in the UK, the life expectancy in Myanmar is much younger (around sixty years old). Lack of antenatal screening, poor nutrition and sanitation as well as low vaccination uptake were some of the contributing factors of childhood mortality in Myanmar. I was surprised by the number of middle-aged patients with end stage liver failure due to chronic alcohol misuse. Their poor diet and sedentary lifestyles also predisposed them to cardiovascular or cerebrovascular diseases which contributed to premature death. Undiagnosed heart failure was also commonly seen during consultation because congenital heart defects were not picked up earlier in life, or as a complication of rheumatic fever.

Symptom management

Only a small proportion of patients are entitled to Thai health insurance scheme or free health care even though they worked and based in Thailand. Patients were mostly with low socio-economical class and did not have access to health service. I have met a lady in her sixty who presented with chronic abdominal pain, decreased appetite and weight loss with a background of bowel cancer. Since the patient could not afford any curative treatment in Thai or Burmese hospital, she was admitted to the clinic for symptom control. Sadly, given with limited resource in the clinic, only simple analgesia and intravenous fluid could have offered for symptom control. Parental route of analgesia and other symptom management medications were not available. A nasogastric tube could be placed sometimes if oral medications were not tolerated. Besides western medicine, traditional herbal medicine was commonly used among Burmese patients. They might apply the medication as a form of paste for pain relief, or take it as herbal tea to manage symptom such as pain, dizziness, nausea or general unwell.

Spirituality

A large proportion of patients in the clinic are Buddhist. When talking to them, they may attribute to their conditions or physical suffering to the “sin” that they have committed in the past, or in previous lives. In order to “rectify their sins”, patients or their family members need to “gain mercy” which can be done in various ways: praying, mercy release of animals into their natural habitat, or doing kind act through donation/helping people in need. When someone died, family sometimes invite monks to chant prayer during funerals to free the spirit of the death. Occasionally, a male family member may become monks in Buddhist monetary for a short period of time to gain mercy for the deceased.

Caring for the dying patients

Healthcare is self-funded in Myanmar. To people who cannot afford, it means they often need to travel days to get to the clinics that are run by charity. For people who wish to die at home, they might found themselves too ill or too poor to travel back to their hometown. Equally changeling is that the clinic carried such a good reputation that patients who often travel days to visit the clinic to hope for treatment. It is often tremendously disappointing to find out their conditions are incurable. The lack of resource also meant that care provided in the clinic could be inadequate to meet the complex care needs of the dying patients.

Family members are often the primary carer for the dying patients, usually in a form of personal and nursing care. For patients without any relatives, their personal care might not been cared for. For those who are lucky enough to have their family members by their side, their carers often bear significant physical, psychological and financial stress.

Giving the lack of resource and infrastructure in the healthcare system in Myanmar, palliative medicine and hospice is still a relative new concept to patients, relatives and healthcare workers. Visiting a palliative medicine specific institution in developing countries like Myanmar did not appear to be a feasible option. My experience demonstrated how palliative medicine exists as an integral part of medicine, regardless what speciality you are exposed to, or which part of the world you are going. It was such an eye opener to witness how people in different culture think about terminal conditions, end of life care and death.