Parallel lives

parralel clouds

I am immeasurably proud of the NHS: the most successful model of healthcare the world has ever seen. If anyone within my earshot suggests that privatisation would be a step forward they rapidly regret it. But even I sometimes get a wake up call: a stark reminder of the absolute necessity of the NHS, and the horror we may face if the political right’s dream of marketised healthcare is realised.

On a recent shift as the Medical Registrar I received a call from an A&E doctor who wished to discuss a patient who had suffered a stroke. I was surprised as all patients with strokes are channelled into the acute stroke pathway: assessed and treated by a dedicated team and admitted to a specialised unit for consideration of thrombolysis; specialist investigations; and early physio, speech and language therapy. However the A&E doctor explained the situation and I agreed to admit Maria*.

I sat by Maria’s bed in the Medical Assessment Unit, and listened as she told me her story. She was a UK citizen who had been living and working abroad. Whilst at home one day she had suddenly experienced weakness on the right side of her body and her speech had become slurred. She was rushed to hospital and diagnosed with a stroke. In the healthcare system she found herself in she was not assessed for and offered thrombolysis. She had to provide a payment method as soon as her initial assessment was complete and the bills began mounting from there. With every test and treatment she was offered she faced an impossible decision: could she afford what was being offered in monetary terms; and could she afford not to have it in health terms? This trade off had devastating effects. She did not have intensive physiotherapy, speech and language therapy. She did not have relevant investigations. She did not receive the best, evidence-based treatment.

By the time she received advice from the British consulate, and was helped to return to the UK for ongoing care, she was significantly disabled. On arrival to our hospital she had dense weakness with stiffening of the limbs leading to pain. She was wheelchair bound and struggled to get from chair to bed without assistance. Her speech remained impaired, making it difficult to communicate her wishes and needs. We admitted her to a medical bed, and the next day the specialist stroke team began working with her to regain as much function as they could. She has a long journey ahead.

If Maria had been at home in the NHS she would have had world class healthcare. She would have been assessed for thrombolysis. She would have had early physiotherapy, speech and language therapy and nutritional interventions. She would have been able to focus all her energy on her recovery and not worry about mounting debts. She would have embraced every test and treatment offered by her medical team, who themselves would have been focused entirely on her needs, not the financial state of their department. 

I watched in horror as the NHS was dismantled by stealth through the Health and Social Care Act. I wrote fervent letters, I shouted, I demonstrated, but to no avail. I often wondered why there was so much apathy from doctors of my generation. A recent article, by a Guddi Singh, who I went to medical school with, suggests some reasons including: a lack of understanding of health politics; being fooled by government rhetoric on the “choice” and “clinician-led” agenda; fear of rocking the boat, especially with a lack of organisational support (from the BMA and RCP who were noticeably silent about the proposed reforms); and a wish to just get on with the job. Doctors have a proud history of advocacy, but this side of our role does not get enough attention in modern medical school curricula.

We have only begun to see the effects of the devastating changes of the Act. As the NHS is systematically cut, ground down and sliced into pieces for private gain it will only get worse. I never want to work in a system in which the first person a patient in need sees is a cashier. I never want to work in a system in which patients trade financial ruin against health and wellbeing. I never want to make decisions about a patients’ care based on cost, rather than need. I never want to see another patient like Maria, and I never want her story repeated right here in the UK.

This can’t be the future. We can’t let it happen. I will be joining Guddi’s call to action and fighting tooth and nail to keep the NHS in the hands of the people, rather than the corporations – the friends of the political class. Markets are not the answer to questions around sustainable provision of high quality healthcare.

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Read more about the devastating destruction of the NHS, watch slices of public services being handed over to private companies, and see the impact of these changes on services you and your family may one day rely on.

Stop NHS privatisation.

Join us.

* names and other details changed to protect confidentiality

Lonely this Christmas

I love Christmas. But I occasionally find myself in a moment of loneliness in the midst of all the crowds and music and noise. When I see pictures of friends with their newborns, home just in time for Christmas; hear couples conspiring about the perfect present for each other; or catch the refrain of a song and am reminded that no-one is thinking “all I want for Christmas is you” the sparkle loses it’s shine. Being in the ever diminishing demographic of single 30-somethings can be lonely. But these moments are fleeting. I’m soon reminded of how much love surrounds me as my Mum calls to double check when my train is getting in, my brother texts to ask whether vegetarians eat gravy, and my friends email checking who is bringing the Gin at New Year. I know how lucky I am and how full of people my life is, and I was reminded of this on my last day of work before the Christmas holiday.

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Ron* was a patient I had previously met in clinic. He had severe COPD and lung cancer for which he’d opted not to have treatment. He was admitted the week before Christmas with breathlessness and we were treating him for an infective exacerbation of COPD. We were fully staffed and the team had the ward under control so there was time to do what I wish we could do more often: sit and chat. Ron was recovering slowly from his exacerbation but still feeling very breathless. He couldn’t walk more than a couple of steps before having to stop and rest. I suggested he would probably need to stay with us until after the weekend, and asked what his plans were for Christmas. He didn’t have any. No family. No friends. He, like so many other invisible members of our communities, would be having Christmas dinner for one. He had, over the years, lost those he cared for and been left alone. I said it was just as well he didn’t have plans as he may need to stay in hospital for Christmas this year. He agreed all too quickly.

I used to think it would be the most awful thing imaginable to be in hospital at Christmas. And for some this is true. But hospitals are bright, warm places, full of caring people. Every member of staff working this Christmas will do their best to spread some cheer, and give out an extra ounce of compassion to those they see. And for those people who have no-one; who might otherwise be alone, ill and afraid; hospital might be the best place to be.   

The NHS is there when no-one else is. It is part of, not only an ideal, but a reality of which we should me immensely proud: the welfare state. As a country we do not value our state services enough. They are not perfect, but they are wonderful.

I worry about the increasing pace of NHS privatisation. Who will be there for those who have no-one in a profit-driven system?

All I want for Christmas is the NHS to survive. Perhaps 2014 is the year to take action to make sure this happens…

Keep our NHS public

Those who go; those who stay

A large proportion of my life is spent within the walls of the hospitals of North East London. But when I’m not at work, I can often be found in one of London’s fantastic art galleries. Art is essential for my personal wellbeing, and a great way to dissociate myself from the trials and tribulations of being a doctor.

But every so often these two worlds collide.

Those who go

A few years ago I went to an exhibition at the Tate Modern on Futurism. It was a fantastic exhibition, highlighting a brief but incredibly influential period of modern art. I was profoundly struck by a specific piece: a tryptych by Umberto Boccioni entitled “Farewells; Those who go; Those who stay,” now on view at the Museum of Modern Art in New York. Not only is it beautiful, but the artist effectively captures the emotions inherent in farewells. It has stayed with me ever since. I was reminded of this piece recently after a particularly emotional on call shift.

I was having a long overdue cup of tea and updating the patient list when the screech of the arrest bleep demanded my attention. I rushed to the appropriate ward and arrived in time to see the patient lose output. The team got to work quickly switching from BLS to ALS, and we attached the defibrillator to see what no arrest team wants to see: PEA, a non-shockable rhythm. After a rapid intubation and several cycles of good quality continuous chest compressions with appropriate drugs given, the rhythm remained PEA. The arterial blood gas showed no reversible causes and several poor prognostic indicators. From the information we had available we concluded the patient had died and was not coming back and we stopped attempting to resuscitate them.

There is always a strange moment at the end of an unsuccessful resuscitation as the cohesive, united team, at one within the all-consuming emergency, shifts; and becomes, once again, a group of individuals. Each one takes a deep breath, psychologically removes themselves from the situation and walks away to continue with their shift.

As I took my own deep breath and stepped outside the curtains, I became aware of the patients and relatives in the bay. I had been preparing myself to speak to the patient’s own family and explain what had happened, but I had not considered the effect on those who had just witnessed the death of a fellow patient, behind the mysterious veil of the blue curtain.

Those who stay

Those who stay

Whilst we acknowledge the loss of “Those who go” I wonder if we provide enough support for ‘Those who stay’. On this occasion, after talking to the family directly affected by the death I went to speak to each patient and relative in the bay and tried to offer some comfort and reassurance. They had many questions, and I was not able to answer them all due to confidentiality. But it did open up the opportunity to talk about life and death. It led to a particular patient expressing his worries about his own diagnosis, and the opportunity for me to clarify the information we had available on his prognosis.

Talking to the patients and relatives who witness a cardiac arrest is not my usual routine, and it is unlikely I will always have enough time to do so. I know that nurses often fulfil this role but I wonder whether as clinicians we are guilty of relinquishing our responsibilities and not providing effective holistic care. I searched for evidence of the impact on hospital inpatients of witnessing death, and interventions to support them. I found very little. One study looked at hospice patients, and another patients with schizophrenia: quite specific and different populations. My knowledge in this area thus remains in the realms of anecdote.

In the 1912 catalogue of the Futurists, they claimed ‘We thus create a sort of emotive ambience, seeking by intuition the sympathies and the links which exist between the exterior (concrete) scene and the interior (abstract) emotion.’ This seems particularly apt as we try to navigate the emotions provoked by witnessing death and grief, and maintain control over the concrete scene of the hospital ward.

As doctors we should all aim to provide holistic care, but must consider what this really means. Holistic care extends beyond the acute illness; beyond the individual patient; to all those affected by illness: patients, relatives, colleagues and ourselves.

The LCP is dead: long live the LCP

Last weekend I was on call in hospital and cared for George,* a patient who was entering the last stages of life. George was no longer conscious so the Consultant and I spoke to his family, discussing which interventions to continue and which we felt were no longer benefiting him. Later in the day I reviewed George and found that he had developed respiratory secretions and was in some distress. I stopped his intravenous fluids, prescribed medications to treat his symptoms and reached for the Liverpool Care Pathway. And then I stopped. In the context of the recent press coverage and the LCP review what should I do?

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Image from The Guardian

More Care, Less Pathway

Last week the Independent Review of the LCP was published, entitled “more care, less pathway.” It has been greatly anticipated by those inside and outside healthcare, as the LCP has become a focus of polarised views on both the concept of the LCP itself, but more often it’s alleged misuse. The LCP is an approach to care including a complex set of interventions, developed to replicate within hospitals  the standard of care for the dying found in many hospices. But in recent months the LCP has been called “The Death Pathway” amidst claims that is has been used to hasten death and free up beds. News of financial incentives for hospitals to ensure best practice standards were met were misrepresented in the press as cash bribes for death pathway. 

LCP review report cover

During the recent press attacks on the LCP, many doctors and nurses spoke out in support of it, highlighting the fact that this is how they would wish to be treated at the end of life. Those who witness death are often more accepting of it’s inevitability and form strong views on what they want for their own last days and those of their loved ones. I publicly defended the LCP and signed the letter myself, and so I was initially disappointed that the report calls for the phasing out of the pathway. It seems counterintuitive that poor implementation and poor communication could lead to wholesale rejection of a set of standards that I have seen work so well in practice.

What’s in a name?

But on reading the report in full, I have to accept the thoughtful reflections of Baroness Neuberger. The most important people at the centre of the recent discussions are dying people and their families. For many of them the LCP is now too badly tarnished to be of comfort, and the term “pathway” is unhelpful in this context. We must listen to the evidence in the report, and be willing to find ways to move forward, striving for ever better care of the dying.

The report alludes to the fact that guidelines and standardised care plans are not worth the paper they are written on if they are not implemented professionally, expertly and compassionately. I couldn’t agree more. But I worry that without the LCP, staff who are inexperienced and under-confident in recognising and treating end of life symptoms will be left without clear guidance, and patients will suffer. We must not let that happen.

The report calls for a number of changes, at an individual, local and national level: better communication between healthcare professionals and patients and their families; specific clarification of the benefit and risks of artificial hydration and nutrition when someone is dying; education and training of all staff in acute hospitals; greater accountability; clearer documentation about patients’ advance care plans, and enhanced record sharing between primary and secondary care; and “a national conversation about dying.”  Until we are able to discuss death openly as a society, with all it’s associated pain and uncertainty, those of us trying to support patients and families at this crucial time will continue to struggle to provide the best care. In the end this is not about protocols, it is about people.

The LCP is dead: long live the LCP

So, what did I do for George during his last hours of life last weekend? I did not complete the paperwork that would have formally put him on the LCP, but the decisions I made were identical to those I would have taken a month ago. The LCP was always designed to be a ‘personalised care plan’: it highlighted the need to communicate well with patients and relatives; and it provided guidance, not rules, on the use of artificial hydration and nutrition. I did what I always do: whatever I could to ensure that my patient died in peace, surrounded by his family. Easing his symptoms was perhaps the most important thing I did all weekend. 

“Good care for the dying is as important as
good care at any other time of life.”

So while I lament the passing of the LCP, I will be forever grateful to those who created it; those who made high quality care of the dying in our hospitals a priority. I will continue to do what I can for any patients in my care who are dying. I will listen to their priorities, involve them and their families in crucial decisions, use all my professional knowledge and skill to ease their symptoms and be honest and compassionate.

I encourage you all to think about your priorities for your final days, and to contribute to a long overdue “national conversation about dying.” We must all play our part in making living and dying well the norm.

* name changed to maintain confidentiality

An invitation to An Evening with Death

Where do you want to die? How do you want to be remembered? What is it like to be present when someone dies?

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Death is a subject that it is often difficult to talk about, but is something we all have in common. On this blog I have shared some of my thoughts and experiences as a healthcare professional, having seen death, dying and grief more than most people I know. I have advocated for more open discussions about the fragility of the human body, the limits of medical interventions, and the freedom to live life to the full that might be gained from embracing it’s finite nature.

As a teacher I believe I have a responsibility to prepare medical students to deal with death and grief, and wonder whether we need new ways to do this effectively. Can sharing our experiences with the public be a learning experience for all? Can the arts and humanities help us to cross the ‘us and them’ doctor-public divide?

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On 16th May I will be hosting “An Evening with Death” with Hollie McNish, my good friend and UK Slam Poetry champion. It will be an evening of poetry, performance and discussion to support the Dying Matters Coalition’s aim “to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make living and dying well the norm.” I am very grateful to UCL SLMS Public Engagement unit for supporting this event.

We hope that the evening will be thought-provoking, life affirming and fun! The event is free, but booking is essential so book your ticket now and join us for drinks and discussion at the Printworks Cafe, UCL. I hope to see you there!

For further information, I have curated some links to related events such as Death Cafe’s, Dinner with Death and other Dying Matters Events.

Can we find the spirit of ’45 in 2013?

Today marks a defining moment in the history of Britain, but looking around you wouldn’t believe it. Today, April 1st 2013, sees the The Health and Social Care Act (HSCA) come into force.

The death certificate of the NHS, issued by the National Health Action Party

The death certificate of the NHS, issued by the National Health Action Party

Some still believe that those opposed to the HSCA are over-dramatic, reactionary or naive. They will probably dismiss the National Health Action Party as extreme and publicity-seeking as it has issued a death certificate for the NHS, citing the cause of death as the HSCA 2013, with contributing causes including Thatcherism and the failure of New Labour. But it is difficult to see how anything but extreme statements and gestures can capture the attention of the public. Our generation is standing by as the NHS is quietly privatised and I for one am ashamed.

In 1948 the Attlee Labour government founded the NHS “the greatest gift a nation ever gave itself.” Since then it has been gradually eroded and dismantled. The King’s Fund’s infographic depressingly visualises various points of attack by multiple governments, starting with the creation of the internal market in 1989 when Margaret Thatcher signed the paper “Working for patients”. New Labour also have a lot to answer for; their PFI legacy crippling many Trusts today. But no previous government has actually tried to privatise the NHS, knowing that there would be a public outcry. Cameron and Clegg have privatised by stealth; clouding their agenda in a language of ‘choice’ ‘clinician power’ and ‘patient centredness,’ and ensuring that the reform documents were so long and complex that no-one, including most Ministers, understood them. The British media failed to report the warnings of individual doctors, nurses and other healthcare workers, and the demands of traditionally silent bodies such as the Royal College of Physicians to drop the Bill.

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The most worrying aspect of the reforms that come into force today are the Section 75 regulations, which state that all NHS services must be put out to competitive tender. This is not just allowing privatisation, it is mandating it. And all these profit-motivated private firms will be operating under the ‘brand’ of the NHS, so patients may not even know. Until the inevitable problems start to surface and it is too late.

Screen Shot 2013-04-01 at 18.34.44As I watched the welfare state being dismantled around me this week, I went to see Ken Loach’s film The Spirit of ’45 at The Barbican Cinema. It was a poignant reminder of a time full of hope and promise, and was a stark contrast to what I see today. In 1945 there seemed to be a collective vision of a society that could pull together for the benefit of all, with at least some people from all social classes believing that the State was a force for good, and that it had a responsibility to provide and protect the simple things most of us spend life striving for: purpose, dignity in work, family, safety, health, wellbeing, shelter, and comfort. 

Particularly powerful were interviews with doctors and patients who remembered a time before the NHS, when healthcare was only for the rich. In The Spirit of ’45 Dr Jacky Davis and Dr Jonathan Tomlinson, doctors working in the NHS today, talk eloquently about the doctor-patient relationship and about their fears about the future. Marketisation and competition change the relationship of doctors and patients to salesmen and consumers. I am no salesman and never will be.

The day after I saw The Spirit of ’45 I was on call in hospital. I was asked to speak to a patient about her medications before she went home, and quickly scanned through her notes before going to speak to her. She had had a tough few weeks, having been diagnosed with incurable (but treatable) lung cancer – only two weeks from having a chest x-ray revealing an unexpected abnormality to tissue diagnosis and treatment plan. This rapid diagnosis and treatment was an example of what happens every day in the NHS, and is a great example of the efficiency of our healthcare system, but it had left her little time to process the news. She was anxious about her medications prior to discharge so I spent a few minutes clarifying them and reassuring her.

As we ended the conversation she said thanks, and then hugged me tightly. It was nhs logoan unexpected level of physical contact and gratitude for a conversation that could only have lasted ten minutes. But it made me think. She wasn’t really thanking me. She was thanking the NHS: there for her from cradle to grave; at the most difficult time of her life; no questions asked; free at the point of need. Patients in the NHS are taken under the wing of an institution and cared for under an ideology. Today that ideology has suffered a fatal wound. Health is not a commodity, and markets will not make our NHS more efficient, more equitable or of higher quality.

Nye Bevan said “The NHS will last as long as there are folk left with the faith to fight for it”. As Owen Jones says “It is with huge regret that I must say that – however much faith we have – we did not fight to save it. The question now is – do we have enough faith to bring it back to life?”

As I look around the political landscape I fail to be inspired or energised by what I see. Attlee had vision, drive and a belief in the people.

I am looking for the Spirit of ’45 in 2013. Let me know if you find it.

What’s in a name?

At work recently I felt like a broken record. “What’s their name?” I said again and again with increasing frustration as I received calls about patients who were referred to as “bed 3,” “side room 1,” and “bed 9.”

Of course, at times it is convenient and even desirable to omit a patient’s name in a conversation. It was suggested on Twitter that it may be better to overhear what ‘bed 9’ needs rather than ‘John Doe is ready for his haemorrhoidectomy,’ and in this case I agree! My worry is that in most cases there is no explicit intent to maintain confidentiality. Instead the convenience of referring to people by their bed number slips into routine communication. I have certainly been guilty of this myself. I worry that this is not merely disrespectful, but that it contributes to the dehumanising experience of being a patient, and negatively impacts on the doctor-patient relationship.

There are many factors that contribute to dehumanisation in hospitals. It is often not the fault of individuals, and I would certainly not suggest any of the nurses I work with are uncaring. Instead the environment and structures inherent in the way we work create an “us and them” divide where healthcare workers and patients are in different tribes. This extends to factors as simple as the clothes we wear, an example of “deindividuation.” I am always amazed by the dramatic transformation when a patient puts on their own clothes as they get ready to leave hospital, having previously only worn a generic hospital gown. They miraculously turn into a “person” rather than a “patient.”

Image from: http://healthland.time.com/2010/02/09/designing-a-glamorous-hospital-gown/

The design of hospital gowns is practical but does not enhance dignity

A recent paper by Haque and Waytz “Dehumanisation in medicine: causes, solutions and functions” explores this idea further, identifying a number of contributing factors, considering simple solutions, and also exploring examples of necessary and unnecessary dehumanisation. An example of necessary dehumanisation is that it reduces physician burnout: if I felt the same intensity of empathy for every patient undergoing a blood test as a typical non-healthcare worker would, I would be overwhelmed and unable to do my job. But there are many examples of unnecessary dehumanisation that we should identify, expose and address to ensure they do not affect how we think of, and care for, our patients.

Although as individuals we may aspire to a partnership model with our patients, our structures rarely facilitate this, and there is a danger that we see patients not as individuals but as tasks to be ticked off. I am much less personally interested that “bed 9 needs a cannula,” than I am that “Eve’s cannula has tissued again and she really needs her iv fluids.” And when I think about constructing a management plan, I am much less likely to take the time to explain my clinical reasoning and involve the patient in decision making if I think of him as “the PE in bed 3″ rather than “Bob, the lovely history teacher who has a PE.”

If and when I become a patient I want my medical team to treat my as an individual, consider my personal context and experience of illness, and integrate this into their decision-making process. I do not want to be referred to as “bed 2.” I realise that as a Medical Reg I would embody ‘the nightmare patient’, but something approaching this true partnership model should be what we aspire to for every patient, not just those (like me) who explicitly demand it. Many things need to change to achieve this ideal including; better data sharing with, and ownership by patients; better public and patient education allowing valuable discussion about trial data and the value and limits of evidence-based medicine; and a dramatic change in our IT structures such that they enhance rather than impede communication across arbitrary boundaries of primary, secondary  and tertiary care.

We should work to achieve system changes, but they will take time to implement. We can take immediate personal responsibility for our own actions and our own role in dehumanisation in healthcare.

A statement in Haque and Waytz’ paper that particularly hit home was:

“Medical education and training should also incorporate practices that allow physicians to emphasize the common humanity they share with their patients, specifically their shared mortality; illness narratives; and vulnerability to disability, suffering, personal loss, and other forms of uncertainty”

I am a passionate advocate for a strong educational focus on our common humanity, and for the power in sharing personal narratives, thoughts and uncertainties as professionals with the aim of demystifying and disempowering the role of “the health professional.”  I suppose that is one aspect of what this blog has tried to achieve. By sharing my personal experiences and exposing my doubts and flaws I hope to show the human side of my role as a doctor.

I have been inspired by NHS Change Day to consider what small changes I can make in my own practice that will improve the lives of my patients. I will be pledging to re-humanise my personal practice of medicine, by always using patients names as a constant reminder of their individuality. I hope that hearing  “bed 9 wants to see you” will become the exception rather than the rule. You can make this happen. Pledge with me

NHS Change Day