Tag Archives: doctor

Would I lie to you?

Most days at work pass in a blur of clinics, referrals, ward rounds, meetings, emails and phone calls. But work as a doctor is more than tasks. It requires a repeated, brutal confrontation with the realities of pain, suffering and illness; with humanity itself. At the end of the day I am sometimes left with emotions and questions that I can’t leave behind at the doors of the hospital. I have often felt poorly equipped to approach the grey areas of medicine that no textbook or Google search can answer. And so this year I signed up for an introductory course in Philosophy.

Last week our topic was moral philosophy which attempts to answer questions such as “how should I live?”, “what ought I to do?” We began with a discussion on whether it is ever right to lie.

Life imitating art

I was surprised when, early in the discussion, one of the class asserted that doctors lie all the time, particularly about poor prognoses and impending death. They expected doctors to lie to patients if asked if they were dying, and seemed to accept this. This resonated as I recently faced exactly this situation. I was asked by a patient if he was dying, and I answered honestly, ‘yes‘. He died the same day. His family were extremely upset and challenged me over what I had said. They felt I had hastened his death by taking away hope, and that I had no right to divulge this information without their consent.

I have thought a lot about this patient, my response and his family’s feelings. Was I right to answer honestly? Did he really want to know? Is there any truth in the assertion that removing hope hastens death? Is false hope of any value? Is it ever right to lie to a patient?

everybody lies

Would would Kant do? 

Philosophy offers some possible answers. Kant’s deontological theory asserts that it is always wrong to lie as we have a duty to tell the truth. This is true whatever the consequences. Kant believed that people have instrinsic worth or ‘human dignity’ through being uniquely rational agents, capable of freely making their own decisions. Lying does not give people the respect they deserve and robs them of their human dignity as it prevents them from exercising their rationality. Also, since I would not want to live in a world in which lying was commonplace, I should assert the maxim ‘do not lie’ and act in accordance with this.

From a Kantian perspective, therefore, I did the right thing in answering my Kantpatient honestly, even if that may have hastened his death and caused distress to his relatives. Most people find Kant’s absolutism challenging. Life is complex and nuanced and always telling the absolute truth inevitably causes harm which could be avoided. Our class quickly cited many examples of situations in which it seemed morally right to lie and we questioned whether that was because Kant was wrong, or whether we were too weak to live out our convictions.

One problem with a duty-based moral framework is that different duties may be in opposition. If I have a duty to both tell the truth and exhibit compassion, which should be prioritised if I believe they are in conflict? How do I decide which is the ‘higher‘ duty?

Consequences

An alternative approach is consequentialism, born from utilitarianism. Jeremy Bentham and his followers assert that the only question you need to ask when deciding on the best course of action is “what will bring about the greatest happiness and the least pain?”

benthamOne challenge to utilitarianism is that we can never truly know what will happen as a result of our actions. However, we can seek out all available evidence to help us make likely predictions. Every decision we make in life is based on the information available to us at the time, rather than absolutely all information known to man.

After reflecting on my patients’ family’s words I searched for evidence on whether knowledge of terminal illness shortened prognosis. I have heard many anecdotal tales of patients living for a few extra days or weeks in order to witness some important personal event such as a wedding, a birth or a final farewell with a relative flying in from abroad. I had not heard much discussion of patient’s rapidly declining after having frank discussions on prognosis.  A literature search did not reveal anything that helped me answer the question. It was therefore challenging to weigh up this potential harm as a result of my actions.

One consequence of lying that is more predictable is that it leads people to make decisions based on false information. In this case, it could have prevented my patient from saying important last words and seeking resolution, forgiveness or solace from friends and family. It is difficult to put a value on this but many who write about their own terminal illness cite the importance of these conversations at the end and I would not want to rob someone of this opportunity due to a paternalistic vision of ‘protecting them from the truth’.

As Freud said:

“The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

When is a lie not a lie? 

Interestingly, defining lying may not be as simple as it first seems. Sam Harris’ definition highlights that deceit is a necessary condition:

‘To lie is to intentionally mislead others when they expect honest communication’

This made me think. Did my patient expect honest communication? Or was he looking for me to collude with him in false optimism? I place a high value on hope but do not believe in giving false hope and in this case all my education and experience told me that this patient had days left at most. I like to think that I am sensitive to cues and that in this case he truly did want to know. In fact I realised that very few people ask “am I dying?” directly. Forming the words and uttering them aloud must take courage, and I think almost all of those that muster sufficient will to ask do genuinely want an answer. I am careful never to answer subtle, side-stepping queries too directly, and to try to match my language to that the patient chooses to use. It seems I already attempt to assess whether my patients expect honest communication, without having thought about this aspect of our relationship before.

We can never know what a patient’s true intention is when they ask us for truths no-one really wants to hear. But I think starting from an assumption of patient autonomy, and therefore responding with honesty is the morally right thing to do.

Doctor, know thyself

We must also be careful not to fall into the trap of imposing our personal values on those for whom we care. Personally, I would always want to know the truth, however hard it might be to hear. I value autonomy and my ability to act rationally based on all available information above almost any other right or virtue. But this is not so for everyone. In my quest to be honest and avoid paternalism I must be careful not to do harm by giving too much information too fast.

The philosophical physician

My foray into moral philosophy has not provided me with any definite answers to my original questions about whether I was right to tell my patient he was dying, or whether it is ever right to lie to a patient. But it has provided a framework through which I have been able to question and defend my actions – to others and, more importantly, to myself.

As I left the hospital this week I felt just a little more content, thanks to the wisdom of Aristotle, Kant, Bentham and Mill. Philosophy has a lot to offer physicians. I intend to open my mind.

 

Further reading:

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

A scarf, a suicide and a sense of perspective

I went out last night. It was cold, and just before I left the house I picked up my favourite scarf from the hat-stand. It’s my favourite for many reasons but predominantly because Miriam, who gave it to me, was wonderful.

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

When the lights go out

Most people I know have never watched a person die. Even those that have been to funerals and therefore have seen and been in physical proximity to a body, have rarely been present at the moment of death. The moment when in the eyes of the dying person the lights go out.

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.

Life in my shoes

On a recent set of on call shifts I met James,* who my team treated for pulmonary emboli. He was a lovely man; visits to check he was on enough oxygen to maintain his saturations and to assess his haemodynamic status were a joy, due to his easy manner and good humour.

Pulse Oximeter, for monitoring oxygen saturations

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.

How to die: CPR and the concept of futility

I recently cared for Ernest,* an 87 year old gentleman who spent around two weeks on my ward. Prior to admission his health was poor. He was bed-bound due to the late stages of a degenerative neurological disease, and had associated cognitive impairment. He had several other health complaints, and had been in hospital multiple times in the previous year with infections. He had always responded to antibiotics but his condition and level of interaction with the world had declined with each admission. On arrival to our ward I noticed that he did not have a DNAR order and, since he was not able to discuss his wishes, I looked to the family for information and to broach this subject. I was surprised to find that several vocal family members were adamantly against a DNAR. I had lengthy discussions explaining my reasons for believing that attempts at resuscitation would be futile and that setting limits of care was important to ensure we pursued quality, not just quantity of life. They listened, seemed to understand, and themselves identified his frailty, deterioration over the last year, and decline in his quality of life. However they strongly objected to us making him “not for attempted resuscitation.” As the end of the week approached I felt uncomfortable about the lack of a DNAR order, and about the possibility of this frail gentleman suffering a brutal and undignified exit to the world should his heart stop. I tried to communicate my personal discomfort to the family, and the reasons for it in the context of my experience of the realities of CPR attempts in those with poor underlying health. I also made it clear we were not asking for them to make this decision, but wanted to integrate their views into the medical decision-making process. I was aware of the potential to be seen as being coercive and paternalistic, but felt a duty to act in what I believed to be the best interests of my patient. We treated him with escalating regimes of iv antibiotics, iv fluids and nutritional supplements with no improvement, and by the end of the first week the family reluctantly withdrew their objections to a DNAR. Unfortunately he did not respond to treatment, his organs began to shut down and he drifted into a state of unconsciousness. At the end of the second week the Consultant and I had further difficult conversations with his family members about the withdrawal of antibiotics, fluids and nutrition. He died; peacefully and comfortably with his family present.

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 beThe "Father of Modern Medicine" 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.

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

A Grief Encounter

Last week was particularly stressful; marked by staff shortages, anguished relatives, conflict over complex discharge processes, and pressure to create beds. The amount of time I spent with each patient on my ward rounds was less that what I, or they, would have wanted but despite coming in early and leaving late there are only so many hours in a day. In weeks like these I often feel guilty as I leave work that I am unable to give more time to those patients and relatives facing the end of life.

More than many other people I know, I am acutely aware of the fragility of life.

Modern medicine is amazing and can achieve results and outcomes that continue to astound me. The satisfaction of discharging a patient with a smile on their face after an admission for respiratory failure that looked like it might be their last; or being able to tell a patient that their cancer is curable, is difficult to describe. But even more difficult to articulate is the sense that the days in which I have the greatest impact, the days that are most rewarding are those in which I’ve had to break really terrible news, and have done it well. Such conversations require patience, time, compassion and, I used to think, empathy. I have seen grief, and its many varying manifestations. But being close to grief is not the same as understanding it and I am often aware of the vast distance between myself and a patient’s relative as we sit side by side in a quiet room after I have delivered bad news. What do I really offer in this situation? I try to communicate the medical facts clearly and sensitively, and give patients and families a sense of what will happen next. I feel sympathy, but am unsure whether I can truly say that I empathise. I have limited life experience and, thankfully, very little personal experience of death, and I find it difficult to imagine what grief feels like.

I recently read a powerful blog from a woman who had seen friends, and acquaintances experience grief, helped them through it and thought she understood. Until her father died. “That night I fought off a panicked dream of the earth falling away under my feet. I realized then, that until that moment, I had never had the right to speak.”  This acknowledgement that there is a gulf of emotion between seeing and experiencing grief is something others have identified, including physicians.

I hope that I can continue to find the time, compassion and words to help patients and their families through the most difficult times in their lives. But, selfishly, I hope that for as long as possible I maintain a degree of distance and lack of understanding and that I continue to sympathise but not empathise.

“No one ever told me that grief felt so like fear.” C. S. Lewis (1898 – 1963)