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?

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.

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.

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.

As 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 an 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.

• Watch clips from The Spirit of ’45 film
• Read GP Dr Jonathan Tomlinson’s blog with summaries of the reforms and their consequences from multiple sources
• Watch or read Dr Lucy Reynold’s (research fellow at the London School of Hygiene and Tropical Medicine) interview about the consequences of NHS reforms
• Read about what David Cameron’s Patient Safety Tsar, Don Berwick, recommended 5 years ago in relation to NHS reform
• Watch Professor Allyson Pollock and David Price of the Centre for Primary Care and Public Health discuss the ‘professional case for withdrawing the HSCA’

Image from: http://bit.ly/14qD6Df

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.”

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. 

• Find out more about NHS Change Day and how you can get involved.
• Read Haque and Waytz’ paper in it’s entirety.
• Read a surgical trainees’ “31 days to better doctoring” for inspiration on making small changes with a big impact

I couldn’t offer her much: we were treating her exacerbation but no drugs could reverse her lung damage. No words could allay her very real fears for the future. But I felt what I could offer – a tiny piece of my time, and my hand to hold – meant something.

As my friends will attest I am no alternative medicine advocate, but it would be arrogant to suggest that there is nothing beyond the knowledge of ‘modern medicine.’ Thinking about Mrs Cole’s reaction I wondered if we underestimate the power of the human touch: the literal, physical connection of one person’s skin on another’s. Hospitals are dehumanising places and as doctors we put up barriers to protect ourselves from the daily site of pain, disease, and suffering. We are in danger of slipping  into an ‘us and them’ mentality, compounded by the differences in socioeconomic status and educational experiences of the average doctor and average patient. We examine and investigate people in a clinical and efficient way and try to fix them. But many patients we see, especially in general medicine, cannot be ‘fixed.’ They have chronic diseases that they will live with for many years. In all honesty, more often than I’d like to admit our treatments do very little to alter disease trajectories. I sometimes think a dose of compassion is a more effective intervention than any drug. The question examined in Intelligent Kindness, is whether NHS staff, in the current climate, have any compassion left after experiencing little themselves.

Despite the challenges, I see hope in the relationships we form in healthcare settings. The system around us shouts about targets, procedure times, and new-to-follow-up-ratios. It demands quality, without articulating what that is. But in the midst of this we find quiet moments of human connection, where people let their barriers down, hold hands and share an understanding of a shared human experience. ‘Us and them’ becomes ‘us’.

“Kindness is something that is generated by an intellectual and emotional understanding that self-interest and the interests of others are bound together, and acting upon that understanding“

A literature search on the effects of human touch disappointingly reveals little. A review article in The Journal of Holistic Nursing explores a conceptual model of intentional touch and highlights some relevant studies. It uses the term ‘touch hungry‘ to describe those individuals who are seldom or inadequately touched in a safe or appropriate way. They are often marginalised individuals: due to poverty, homelessness, age or disability. They may be separated from family and friends, or segregated from society because of stigma and fear. Healthcare professionals will be familiar with these groups and their complex needs. Some nursing practices, which can be as simple as providing hand and foot care, encourage the use of intentional therapeutic touch to offer comfort and promote healing as part of holistic nursing practice.

An interventional study by Moon & Cho, 2001, explored the effects of nurses providing handholding for patients undergoing cataract surgery. The study authors suggested that comfort touch conveyed empathy, had a soothing effect, reduced anxiety (as measured by patients subjective experience and by adrenaline levels), and provided both the nurse and the patient with a feeling of increased security. The authors encourage touch as an intervention because “it is a noninvasive, harmless, inexpensive, and easy to perform and because the patients’ responses to the intervention were very positive“.

Edvardsson et al. (2003) discusses the importance of intentional touch for the professional, in the context of caring for older people. The authors suggest that when nurses provide intentional touch to patients they perceive themselves as valuable as people and professionals, and feel a power inherent in the kind of touch that eases suffering. In addition, the experience of intentional touch has the potential to transform the way in which the nurse regards his or her patients. Rather than seeing a demanding patient, Edvardsson suggests that the use of intentional touch helps the nurse see the patient as a human being.

These descriptions are interesting, but they are limited by subjectivity and reporter bias. In a search for more concrete evidence of the therapeutic benefits of touch I came across a review ‘The skin as a social organ‘ in Experimental Brain Research, which “situates cutaneous perception within a social neuroscience framework by discussing evidence for considering touch…as a channel for social information.” The authors present data which they suggest indicates that specialised pathways for socially and affectively relevant touch may begin at the level of the skin with specialised nerve fibres. They also explore evidence for  higher processing of social touch sensation in specific brain areas such as the insula and orbitofrontal cortex. Of course such reductionist approaches have their own limitations when we examine such a complex phenomenon as the physiological, emotional and social effects of human touch.

Abraham Verghese, an Infectious Diseases physician articulates the power of touch specific to the doctor-patient interaction in his TED talk on the ritual of the physical examination. In this context the examination’s function is not to detect signs of disease, but to communicate compassionate and, he argues, this has a transformative effect. The ritual is cathartic and comforting and allows the  doctor to communicate a message to the patient: “I will always be there. I will see you through this. I will never abandon you. I will be with you through the end.”

I’m not sure where these thoughts should lead. I certainly wouldn’t advocate for NHS-funded touch therapy in place of other more evidence-based approaches, and clearly such an intervention could never be implemented on a large scale since the care-givers would need to truly feel the compassion they were trying to convey. But compassion, empathy and the human touch are central to holistic care, and it is worth reminding ourselves of their value. It comforts me that other physicians understand the power of this dimension of care, despite the difficulties in generating empirical evidence of its effects. Human touch can communicate in ways that go beyond the limitations of language, and articulate kindness more powerfully than any other action.

As GP Dr Jonathan Tomlinson says “Kindness in healthcare is how we communicate with and relate to our patients, our colleagues and ourselves. It is much more than how we listen, it is how we feel and how we respond and it is part of the culture we share.“

I hope that should I ever cross the divide from physician to patient, that someone will communicate their compassion through more than words; that they will take time to listen, to understand, and to hold my hand.

* name changed to maintain confidentiality

Was.

She’s not here anymore. She committed suicide.

We were not best friends. We weren’t even really very close. She was my boyfriend’s best friend’s girlfriend. We would often be at the same social events, would sometimes have tea together over breakfast, and spent a lot of time together waiting around for ‘the boys’. Miriam was a medical student. One day, in the run up to end of year exams, she left the library where she had been studying, went home and killed herself.

Her death was a huge shock. For a long time it didn’t feel real. Even after the memorial service it still didn’t seem possible that she was really gone. I didn’t know how I was supposed to feel, what I was supposed to do or what I was supposed to say. I couldn’t work out how upset I was supposed to be, and what other people would think if I cried or didn’t cry. I couldn’t work out how upset I actually was. I was angry at her for not placing enough value on her own life. I was angry at myself for not having seen her distress. I wasn’t sure if I was close enough to her  to have a legitimate right to grief. I didn’t want her close friends or family to think I was over- or under-reacting. I had no idea how to support my boyfriend or his best friend who had been the ones who had found her and called the police. All I knew was that this was all wrong.

My feelings were coloured by guilt. I am a doctor. Many of those close to her were doctors and medical students. Shouldn’t we have known? Shouldn’t we have seen the signs? Shouldn’t we have been able to do something? When I thought about it rationally I told myself that Miriam didn’t exhibit the classical warning signs. She was an outgoing, popular, successful, busy, kind, generous woman who appeared to be happy. How could we possibly have known? But rationalisations felt weak and pointless.

I recently came across a video in which Kevin Betts  articulates some of these feelings better than I ever could. In it he makes  ”the toughest speech of his life” for World Suicide Prevention Day, reading a letter to his dad who committed suicide. Kevin’s message to his Dad is  “I won’t stop.” He means it: to raise awareness about mental health and suicide he ran 52 marathons in a year. In his speech he says he loves his Dad, but also is disappointed in him as he “chose not to be here.” I struggle to know how I feel about this statement. Miriam “chose not to be here” but was it really a choice? How much control did she have over her thoughts and actions? I don’t know.

Estimates based on WHO data indicate that 1 million people a year die by suicide. The data is complex as suicides may not always be recorded as such due to social, cultural and societal reasons. Suicide attempts and suicidal ideation are far more common with 5% of people attempting suicide at least once in their life. The lifetime prevalence of suicidal ideation is estimated at 10-14%. Reports from the  ONS and Samaritans show that in 2010 there were 5,608 suicides in people aged 15 years and over in the UK, with rates highest in those aged 45–74 at 17.7 per 100,000 for men and 6.0 per 100,000 for women.

These data show that suicidal thoughts and actions are astoundingly common. It is likely that we all know someone who has had suicidal thoughts at some point in their life. Yet stigma, fear and misconceptions mean few of us realise this, and still fewer ever talk about it.

Something I found striking from Kevin’s speech was that he felt let down by health and educational institutions. I have treated countless patients in hospital who have tried to kill themselves. I feel like I let them down every time as I am so helpless  as a physician. I patch them up, make sure whatever poison they have taken doesn’t do too much damage and pass them onto the mental health team. I do not think I’m of any relevance to their life, and wish I could do more.

Kevin felt no-one wanted to talk about his Dad’s suicide. But he did want to talk, and continues to do so.

“Suicide is not shameful or selfish. It is just a way to die“

I think of Miriam often and can’t get past the feeling that if she could only have got through that day, and talked about how she was feeling, she would still be here. She taught me a valuable lesson: suicidal thoughts and actions are not something experienced by patients – they are experienced by people. I hope I never forget that. 

If you are experiencing suicidal thoughts, or know someone who is, please call the Samaritans on 08457 90 90 90 (UK) or Mind on 0300123 3393 (UK).  More information is available at Grassroots suicide prevention. 

I have been there, in the moment, a number of times and remember every time with eerie clarity. Sometimes I have known the patient well; other times I have only met them in their last minutes or seconds. Sometimes it has been almost ethereally peaceful. Other times it has been frantic, chaotic or distressing despite our best efforts to treat end of life symptoms. Most often it has just happened.

Jean* had been admitted from her nursing home with end-stage dementia and multi-organ failure and was clearly in the last hours of life when she arrived in the emergency department. I admitted her in the morning and was passing through the medical assessment unit a few hours later and felt the need to pop in and make sure she was comfortable. There was a stillness in her room that felt anticipatory. I offered to stay whilst the healthcare assistant went to attend to another patient and so happened to be sat by Jean’s bed when she died. She was calm and comfortable. When the moment came it felt like the world paused for a moment and held its breath, while she held hers, then exhaled as she breathed her last breath.

And then the world continued on, with one less person in it.

Each time I have had this experience I have felt the same incredulity at the enormity of the moment. Whether I apply a philosophical or a religious framework, I struggle to grasp what happens when everything that makes up the person; their memories, actions, impact, emotions, beliefs are suddenly gone. The contrast between the significance of the event, and the undramatic way it often occurs, never fails to astound me.

When I know that one of my patients is dying I always feel an urge to check on them rather more often than is clinically necessary. Somehow I feel a responsibility to make sure they are not alone for the final moment. I know that many nurses share this feeling, but I sometimes wonder who we are really there for. Are we fulfilling an unwritten societal contract that means we must ensure no individual has to face the abyss alone; or are we, the living, reasserting our own vitality by forcing ourselves into close proximity with death?  I know many nurses who, whether religious or not, still insist on opening the window after a patient has died to “let the soul out,” as part of a ritual ingrained in them during their training. Even the confirmation of death by a doctor, which mandates checking pupil reactions, palpating for the pulse, and listening for heart and breath sounds, feels part of the ritual. In a busy shift this necessary pause feels appropriate to mark the fact that the world has lost another individual. The need for ritual at the end of live is pervasive across ages and cultures, but in an era of high expectations of healthcare we seem to struggle more with the inevitable than ever before.

“For the love of God,” Damian Hirst

We need a greater acceptance of the body’s physical frailty and a more realistic view of the limits of medical intervention. We need to find a more tangible connection with all stages of the circle of life, despite our sanitised and secularised society. We need to embrace the fact that the inevitability of our own mortality sets us free to live in the moment. As Wittgenstein noted “eternal life belongs to those who live in the present.”

I intend to make every day I have left count, before the lights go out.

One one occasion I was with my Consultant, who had known James for a while prior to this admission. At the end of the consultation he asked a very powerful question “is there anything else on your mind?” At this point I was closing the notes folder and putting my pen in my pocket, expecting to move on to the next patient. But James  did have something on his mind.

What I have not mentioned is that James is HIV positive. He has been living with HIV for many years and facing the challenges associated with this with resolve and good humour. His current problem was not directly related to his HIV status, but as is the usual practice whilst he was in hospital he was cared for by both the general medical team, and the “immune deficiency team” who were able to advise on potential interactions with his ARVs and give other specialist input.

One afternoon James was sat in his hospital bed, chatting to a visitor who was unaware of his HIV status. One of the immune deficiency team doctors had just been to see him and was writing up notes at a nearby desk. Another doctor called across the ward “hey, are you the HIV doctor?”

This question was clearly asked thoughtlessly, with a complete lack of awareness of the potential to breach a patient’s confidentiality. James told us that thankfully his visitor had not heard, but he was concerned that this situation could happen again to someone else. He offered to talk to the doctor involved, to explain the impact of a HIV diagnosis, and the significant anxieties felt by those affected, in particular around potential breaches of confidentiality and  discrimination within healthcare settings.

This conversation made me think about my own views on HIV, and I realised that I am incredibly naive. To me HIV is just another chronic disease; requiring early recognition, lifelong support, timely treatment, and awareness of associated morbidity and mortality. In my mind, it does not differ greatly from diabetes or COPD. Of course I am aware of the additional moral judgements that go along with sexually transmitted infections in general, and that the fear of contagion from ill-informed people coupled with value-judgements on lifestyle choices make living with HIV significantly different to living with diabetes, but I have not witnessed this myself. I watch films like Philadelphia and Angels in America, and listen to anecdotes from older Consultants, and feel completely disconnected from them: the AIDS epidemic of the 80s feels like a distant bygone age. Hasn’t society moved on? Isn’t my generation more liberal?

Giant leaps have been made in the last few decades in diagnosis, treatment and life expectancy, and my professional perception of HIV as “just another chronic disease” is in many ways a sign of success in overcoming the associated stigma. But meeting James provided a stark reminder that people living with HIV still face significant prejudice. As a throwaway comment he said “the curtains around the bedside aren’t exactly soundproof, and the visitors of the patient next door didn’t look particularly pleased when they overheard someone say ‘HIV’. I’d rather not have to deal with that while I’m struggling to breathe!“

HIV and AIDS gets less attention from the media in the UK than it did during the early years of the UK AIDS epidemic, but it’s far from an issue of the past. In fact, the epidemic has expanded, with the annual number of new HIV diagnoses nearly tripling between 1996 and 2005. Annual diagnoses have slightly declined since then with 6,150 people diagnosed HIV-positive in 2011. But despite rising numbers of people infected through sexual transmission, public knowledge of HIV and AIDS appears to have declined. Worryingly the UK HIV and AIDS statistics show that of the 91,500 people living with HIV in the UK at the end of 2010, approximately 24 percent were unaware of their infection. This is the result of multiple factors including a lack of physician awareness of indicator conditions, physician reluctance to test and patient fears and reluctance to get tested, in part due to myths, and negative societal attitudes.

AIDS 2012, an International AIDS Conference is being held in Washington this weekend. Part of the extensive programme includes the screening of a film made in Hackney, London by the charity Body and Soul, whose message is optimistic and inspirational:

“We refuse to let HIV decide who we are.”

“We believe in people not victims; brilliant individuals, not scary statistics.“

“HIV can exert a powerful impact on the lives of people living with and closely affected by the virus. However…with the right interventions at the right time, resilience and hope can be developed.“

The film Life in my Shoes celebrates difference by seeing life from other people’s perspectives. This wider message of the need to empathise with other people’s perspectives is powerful, beyond the context of this campaign, and I hope it receives a wide audience.

“There is one thing we all share, we are all different.”

* Name changed to maintain confidentiality. Story shared with consent.

I thought a lot about Ernest and his family at the time and in the weeks since. I was taken aback by the strong objection to a DNAR order and, not for the first time, wondered about the expectations of the public of medical interventions. I also wondered what I could and should have done differently; where the line is between professional advice and personal opinion; and to what degree families’ wishes should be followed in the face of futility.

An article in the NEJM addressed the question “Is it always wrong to perform futile CPR?” and suggested that there are some circumstances in which it may be right to proceed with futile treatments at the end of life for the sake of the family: for those left behind. I recognise this argument, but my personal beliefs align more with those who contend that this is never right, as it treats the patient as a means to an end, rather than an end in themselves (see Kant), and causes harm to the patient. The Hippocratic Oath is very clear on the duty not to do harm and  to recognise one’s limits.

This quote from a 1988 letter to the editor of NEJM seems even more appropriate today, as the options for what can be done grow, whilst what should be done, is not always considered :

“It seems we have lost sight of the difference between patients who die because their hearts stop and patients whose hearts stop because they are dying.”

Conversations about the limits of medical intervention, the inevitability of death, and the need for priorities other than duration of life are not broached often enough or openly enough. The aim of talking more openly is not to remove hope, but to give patients the space to exercise true choice and autonomy, to define their own priorities, and to live out the time they have left in the way they choose. It also releases the medical team to do all we can with total conviction, comforted by appropriate limits. We live in an ageing society. More people now die from chronic conditions after a long period of declining health, or from a combination of factors best defined as frailty. Atul Gawande, Professor of Surgery at Harvard Medical School, when asked by a family member whether one of his patients was dying admits to struggling to know how to answer:

“I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.”

For patients in the late stages of chronic health conditions such as heart failure and COPD the week or month of their death is not predictable, but the fact that their lifespan is limited is fact. Starting these conversations is difficult, and communicating the concept of futility can be a huge challenge. What does futility really mean? What % survival from CPR does the public think is achievable and what would they define as futile? Is this the same definition as doctors? It is no wonder that we struggle to find the words, but this is no excuse. The medical profession must not collude in the conspiracy of eternal life, and the  perception of death as failure.

http://www.respectourwishes.com

So how do we move forward? A recent JAMA article has suggested a standardised approach to determining DNAR status. Reading the conclusions, the most striking thing is that they sound like simple common sense: “Whenever there is a reasonable chance that the benefits of CPR might outweigh its harms, CPR should be the default option. However, in imminently dying patients….The default option in this situation should be an order to not attempt CPR.” The problem is that life is rarely so black and white, and many patients arrive at hospital with a potentially life-threatening illness but are not imminent dying. It is these patients who still need appropriate limits of care setting, but this is not built into our day to day practice.

The conclusions of the NCEPOD report “Cardiac Arrest Procedures: Time to Intervene?” have been widely reported but often with a negative spin, painting doctors as the enemy of patients “fighting for life.” This is an emotive subject and the media are rarely helpful, fuelling fears of patients having decisions made for them and being abandoned at the end. The Daily Mail can always be relied upon to deal as insensitively as possible with these complex subjects (see here and here, where they conflate the question of the appropriateness of DNARs with communication issues and accusations of neglect, making it difficult for the public to consider the issue in isolation.) The Chair of the NCEPOD report has identified the fact the we all need to recognise and accept the limits of what medicine can achieve. But who does he mean by “all?” This is a societal issue, and discussions need to leave the hospital ward and GPs’ surgery and find their way into people’s homes.

Reflecting on my interactions with Ernest’s family, I was heartened by this quote from Atul Gawande in The New Yorker:

“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come…”

I will continue to have these hard discussions, but hope that in time they will be made easier by a greater awareness and preparedness from the public. Death is a part of life and our continued silence only makes it more deafening when it arrives.

See The Health Culture blog: “Actions surrounding the moment of death are highly symbolic,” MedicalEthicsandMe‘s thoughts, and lots of posts on the Medical Futility blog for further insightful discussion.

* names changed to maintain confidentiality

As a hospital physician I rarely meet this group of older people, living full and independent lives. My view of the over 65s is coloured by my frequent encounters with the most unlucky ones; suffering from chronic disease, dementia, cancer and frailty.  But they exist, these sprightly centenarians and in increasing numbers. And even more common are older people with a lot to contribute to society, but in need of a little support in order to maximise their potential. Between now and 2050 the number of people aged 80 years will almost quadruple to 395 million. At that point, there will be more people over 65 than children under 14.  Our world is changing, but are we ready for this global silver revolution?

As a broad generalisation “western society,” does not value age, experience and wisdom. Our culture is obsessed with youth and a narrow definition of beauty which has no time for those perceived as “past their prime.” But in the last few weeks I seem to have read an abundance of good news stories about older people doing incredible things. On Saturday Live on BBC R4 I listened in awe and fascination to Mary Hobson who took a degree in Russian in her 60s and now, in her 80s is winning awards for her version of Pushkin.

Nicholas Crace, a fantastic 83 year old, found that he couldn’t continue to give blood after 70, but he could donate a kidney. So he became the oldest live altruistic kidney donor in the UK.  He was back to gardening and cycling a week later.  For even more inspiring older people see here and here.

Despite these great examples I fear that in general we dismiss and ignore older generations and that, as a result, we are losing out. As I contemplate entering the later decades myself I am worried I will not have the means to enjoy “active ageing,” defined by the WHO as mechanisms through which “people can realize their potential for physical, social, and mental well-being throughout the life course and to participate in society, while having adequate protection, security and care when needed.“

So what are the necessary conditions for longevity, and what defines a happy life? Many people have attempted to answer this question. There is some evidence that those who live long healthy lives have higher levels of glutathione reductase (although I have not found any convincing evidence of a cause and effect relationship). Other research has idenfified genes that seem to influence longevity in multiple generations, including FOXO3A, which also correlates with lower rates of cardiovascular disease and cancer. But of course these reductionist theories miss the complex interaction of the individual, their genes, their childhood, their health choices, their socioeconomic status, their employment, their personality and risk taking behaviour, their social interactions, their self esteem and response to stress.

For over 70 years Harvard researchers have been following 268 men through their lives starting as “well-adjusted Harvard sophomores.” Half of them are still alive and now in their 80s. The study has documented narratives of the participants lives, in addition to collating questionnaires, psychological tests and medical examinations. The primary researcher George Vaillant has concluded that key components of a happy life include close relationships, access to a good education and good physical health. Perhaps more interesting are conclusions such as “objectively good physical health was less important to successful aging than subjective good health. By this I mean it is all right to be ill as long as you do not feel sick,” and “learning to have fun and create things after retirement, and learning to gain younger friends as we lose older ones, add more enjoyment to life than retirement income.” Dr Vaillant heavily emphasises the importance of social support and relationships in healthy ageing, which should ring alarm bells when we consider the lack of any sense of community in so many peoples’ lives, and the social isolation which often occurs with ageing.

The Okinawa Centenarian study in Japan identified several factors that contribute to the population’s high number of centenarians including: a diet very heavy on soya products, as well as fish and vegetables, and low on alcohol, dairy products and meat; commitment to frequent low impact exercise such as tai chi and gardening; close, supportive social networks; and a positive attitude that embraces and celebrates age. This group of people spend, on average, 97% of their lives disability-free. What a contrast to the common perception of the frail, dependant UK nursing home resident, unable to perform the most basic functions for themselves.  Ageing is not something to fear, if we remove the physical dependence and cognitive decline that we perhaps mistakenly see as inevitable.

I will continue to marvel at and celebrate the healthy older people I come into contact with, and aim to integrate some of the advice from Harvard and Japan to maximise my own chances of active ageing. But I also hope that the current period of austerity, coinciding with almost daily revelations of the degree of  inequality in society, and the entrenched corruption of power at the top  is bringing about a gradual reawakening; a shift in our materialistic and individualistic society towards a more caring, human, community-focused future. In my utopian future, age and wisdom are valued above youth and beauty, the gap between rich and poor is a fraction of what it is today, human interactions are treasured more than material possessions, and we all eat soya.

Good health adds life to years 

This week is Dying Matters Awareness Week 2012, the theme of which is “small actions, big difference”. As part of the campaign, people are being encouraged to take small actions which include:

• helping someone to write a will
• showing and discussing one of the Dying Matters films
• visiting someone who’s been recently bereaved
• becoming an organ donor
• documenting your own end of life wishes
• writing down 5 things you want to do before you die

Some of my friends and family think I spend too much time thinking about death. But because I think about the fact that life will end (hopefully not for a while), it seems so much more precious. So here are 5 things for my bucket list:

1. See the Northern Lights.
2. Make the perfect blueberry muffin.
3. Fall in love. Again.
4. Read Les Liaisons Dangereuses, in French.
5. Have a photograph I’ve taken published in a weekend newspaper.
6. Be interviewed on BBC R4 Woman’s Hour.
7. Donate 50 units of blood.
8. Stay in a jungle treehouse in Peru.
9. Procreate.
10. Have my portrait painted, naked.

Actually once I got started I couldn’t stop at 5. There’s a lot of life to live.

This Dying Matters Awareness Week I urge you to do something that “makes living and dying well the norm.”

“To live is the rarest thing in the world. Most people exist, that is all.” Oscar Wilde.