Blaming patients: a very human temptation

Being human, doctors sometimes blame others when things go wrong. Because they spend most of their time interacting with patients, there is a temptation to blame them. The purist might argue that a patient can never be responsible for suboptimal care, medical error or lifestyle associated disease, but the issue is complicated and deserving of examination. The word blame not only implies fault, indicating that harm is directly related to a person’s actions or omissions, but that they are not deserving of sympathy. If we accept that sympathy is a necessary precursor to empathy, through the stirring of compassion and the will to do the emotional work that is required, its absence could compound a patient’s sense of isolation and vulnerability. Responsibility is a more subtle term, but its effect is the same – the shifting expectation away from the doctor and towards the patient. But patients do have to take some responsibility for their condition and their care. Where does the balance lie?

In this article I will explore various situations in which doctors might find themselves blaming patients. These move from the immediacy of the clinical interface to societal attitudes to lifestyle and ‘deservingness’.

1. Passivity or fear?

Imagine this scenario. A 34 year old man, working, busy, sees a specialist complaining of weight loss and night sweats. A CT scan is organised, and the patient waits for the follow up appointment. It never comes. He waits, and waits… losing weight, feeling ill. Six weeks later he goes back to his GP who makes contact with the specialist, leaving a message with his secretary. Three days later the patient is called at home by the secretary who offers him an appointment next day. The young patient attends, and is informed that the scan shows large volume lymphadenopathy which must represent lymphoma. He needs an urgent excision biopsy and chemotherapy. The tumour is extensive, and six weeks more advanced than it needed to be before commencing treatment. The patient asks what happened. The specialist apologises profusely – the system usually flags up abnormal scans, he can’t explain why this one slipped through. But sitting there, looking at the pale, thin young man, the specialist thinks to himself,

‘But why, for heaven’s sake, didn’t you chase it up?’

Was the patient remiss here? Yes, the system let him down, but would he have left it six weeks before getting back in touch with the manufacturer of a new television after it had been reported as faulty. Why not call the hospital? Why not call the consultant’s office and make a fuss?

Or consider this: a 54 year old female with cirrhosis and ascites (fluid collecting in the abdomen) is prescribed strong diuretics or water tablets. Three weeks after starting the treatment she comes to the clinic for a review and routine blood tests to ensure that her kidneys are not being ‘squeezed’. She looks unwell to the consultant, nauseated, her eye sockets sunken. There is not an ounce of excess fluid on her body. The consultant hands her a request form and emphasises that is vital that she go straight to the phlebotomy room for her blood test, and that he will contact her the next day to advise on the dose of diuretics. He explains that he may even need to stop them if the kidneys are being damaged. She has the blood tests. That night the consultant, who happens to be on call, is called in to an emergency. It takes all night to sort out, and he works through the day until it is time to go home. It is Friday evening. Suddenly, on Sunday morning, he remembers the blood test. He calls the hospital and gets the house office on duty to check the results system.

‘Funny,’ says the junior doctor, ‘It says she’s actually an in-patient.’

‘What ward?’

‘Intensive care…’

The consultant calls ICU. His patient was admitted that morning, in advanced renal failure. She is now on dialysis – hopefully a temporary measure. As he breaks the connection the consultant scrolls through the reminders and alerts on his mobile phone; yes, there it is, reminding him to check those results at midday on the Friday. Why didn’t he hear it? Who knows? His system, his fail-safe…failed. He sits down, at home, curses himself, but reflects – ‘Why the hell didn’t the lab call me on Friday…and why didn’t she call my office…I told her those results were vital, they were needed to change her dose…but she waited, and waited, getting sicker and sicker…’

Was she to blame? Wouldn’t it be reasonable to have expected her to be interested, curious, worried? The consultant said he would get back to her, but he didn’t. Wasn’t that a sign that he had forgotten? And if he had forgotten, wouldn’t it have been prudent to remind him? Why the passivity?

The question of passivity opens up a deep box of psychology and potential explanations – the traditions of paternalism which engender an unquestioning acceptance of how the system reviews and communicates results; fear of the monolith, of how the hospital will react to prods and questions; denial, that anything is wrong; superstition, in that actively asking for results will actually alter one’s chances of receiving bad news. These are aspects of a patient’s psychology, and are responses to illness. It may not be reasonable to expect patients to take as much responsibility for their own bodies than they would for something (such as the new television) that cannot threaten their physical wellbeing. Rational thought, logical responses and proactive behaviour may be blunted by the normal response to illness.

2. Blaming the body if not the person

Writing on the KevinMD website a patient by the name of Warmsocks described how she had been ‘blamed’ for being too sensitive to a painkilling drug, Tramadol. In fact she had not been advised on how to titrate the dose correctly, but this example reminded me of a reaction I have witnessed in other doctors, and have been guilty of myself. That of instantly shifting the blame for an unexpected complication or reaction to an aspect of the patient’s physiology or anatomy. That is not to say the patient is blamed personally. Examples might include ‘anomalous anatomy’, an allergy that had not been previously ‘declared’, or a co-existing condition that had not been revealed during the initial history. The patient is not held responsible, but nor is the doctor. Data was missing, no-one is to blame…not you…and definitely not me!

An example: patients’ responses to intravenous sedation vary widely. If a patient remains inadequately sedated despite receiving the maximum permitted dose, their experience of a procedure may be unpleasant and psychologically harmful. In the field of endoscopy this is a commonly encountered situation. After the procedure an explanation might sound like this –

‘I hope that wasn’t too bad. You didn’t seem very sleepy.’

‘I felt everything. I heard everything.’

‘I’m sorry. But I gave as much as I could.’

‘Why didn’t it work?’

‘Well, people react differently. We don’t know why. Peoples’ metabolism varies, their sensitivity to drugs…’

‘So it was me. A low pain threshold?’

‘No, it was nothing you could influence…’

The doctor’s explanation is partially defensive, for he does not feel entirely culpable for his patient’s poor experience. But in referring to the patient’s metabolism he has handed the ‘blame’ right back into the patient’s lap, to do with it what she will. However impersonal the a word like ‘metabolism’, the patient will go home feeling that the nature of her reaction was down to her. Although the doctor thought that he was being non-pejorative, the take home message may have been entirely personal.

3. Justification after unexpected death

When a patient dies unexpectedly, despite the best efforts of the team, a sense of failure ensues. There is regret, there is sadness, there is self-examination. While reflecting on what went wrong and what might have been done better it is not uncommon for a distancing to occur. This is especially common if members of the team express guilt. A discussion might sound something like this –

‘How are you feeling?’ asks a consultant of her house officer, a day after a middle aged patient dies.

‘I don’t understand why it happened. We diagnosed his infection promptly, gave the right treatment, escalated to intensive care…what did we do wrong?

‘We didn’t do anything wrong. You didn’t do anything wrong. I’d tell you if there was something that could have been done differently.’

‘So why did he die while the patient we had with an identical infection, three weeks ago, survived? And that patient was much older.’

‘There are reasons behind the way patients respond to illness that we don’t fully understand. Some people develop overwhelming sepsis, some just get a mild fever.’

‘So it was something unique to him?’

‘I don’t know. All I know is we gave the same treatment to those two patients and one died and one survived. It wasn’t down to us. So don’t blame yourself…’

So who should she blame? No-one. It’s not a question of fault. But in looking for reasons, for justification, it is natural to seek a focus for the negative reaction that death, failure, causes. This is blame. In the discussion presented here that blame is directed back to the deceased patient, for the idiosyncratic way in which his body responded to the infection. Not a strong form of blame, but a definite transference of responsibility.

4. A step to the right

An internet tour of medical blame will take you down the road of ‘self-inflicted’ disease. That is the group of conditions that can be attributed to lifestyle, choices and an unwillingness to change behaviour.

Dr Peter Attia gave an emotional TED talk on the epiphany that occurred when he developed features of the metabolic syndrome, causing a painful juxtaposition with the lack of empathy, perhaps even a degree of contempt, he had experienced when treating obese patients. He blamed them, and felt less sympathy for them than he did for other apparently more deserving patients. However, not all clinicians will go through such a conversion, and policy makers working at a remove from such patients have begun to build blame into the health care system.

In the US, as described in a blog post by Bob Doherty recently (‘Stop blaming patients for not doing enough to stay healthy’) a philosophy of blame can be manifested by increased health insurance for some groups, or rather sinister sounding ‘health contingent wellness programmes’ which have been objected to by House Democrats. As Bob Doherty says,

‘…many of these things – eating better, exercising more, not smoking, not drinking to excess–may be very difficult or even impossible for some people to achieve because of genetics (family history of alcoholism and other substance abuse), culture and community (the diet your grew up with, the food choices available to you in your community, exposure to crime and violence), stress, literacy, physical and emotional abuse, how you were raised by your parents, the quality of your schools–the list goes on and on.’

In the UK the most vivid example of converting blame to policy comes from Conservative MP and part-time GP Dr Phillip Lee, who in 2012 hit the headlines by suggesting that patients with type 2 diabetes may need to pay for prescriptions – “If you want to have doughnuts for breakfast, fine,’ he said,’ but there is a cost implication down the line,”. The operative word is ‘want’. Do patients want to eat rich food, or smoke, or drink? Yes. Do they want to be obese, get lung cancer or die of cirrhosis? No. There may be a mechanistic line between the lifestyle habit and the disease, but breaking it requires more than admonition or financial penalty. Blame when applied to addiction, be it to food, alcohol or drugs, is a dangerous word.

5. Can blame exist without freedom?

Lifestyles driven by addiction and compulsion take us into the area of ‘moral responsibility’. A paper by Rebecca Brown called ‘Moral responsibility for (un) healthy behaviour’ identifies –

‘…a growing trend for ‘responsibilisation’ (often related to ‘personalised healthcare’) which assumes that agents can (and should) be held morally responsible for their health outcome but then challenges ‘one key assumption…that, in determining their own lifestyles, individuals act freely and are morally responsible for engaging in unhealthy behaviours’ and seeks to ‘question the legitimacy of holding agents morally responsible for their (un)healthy lifestyles.’

She describes an approach in which

credit be awarded according to the extent to which agents ‘conscientiously strive’ to do the right thing.

while acknowledging,

that an agent’s capacity to ‘strive’ may be influenced by her upbringing and social circumstances: factors out of her control and not her responsibility.

This reminds me of my own practise in liver medicine. The clearest instance of blame is seen in the arena of alcohol addiction. It is common for a patient to survive a life threatening episode of alcohol induced liver failure, and on discharge the doctor will say,

‘That was very close. If you drink again, even a glass, you will probably die.’

The patient comes back into hospital 6 weeks later, in liver failure. His partner admits that he has been drinking heavily. How much clearer can it be – the patient is to blame, surely! Then comes the question of whether the patient should be offered the chance of organ support on the intensive care unit. Their ‘deservingness’ may be taken into account. The impression of deservingness might rely on the efforts that they have made to give up alcohol. Are they in a programme? Did they take the seriousness of their last scrape with death to heart and throw away the bottles when they got home. Is this the tenth such admission? In asking ourselves these questions we are therefore tempted into ascribing to ourselves the roles of moral judge and jury. But we must be aware that the General Medical Council, in Good Medical Practice, says,

“The investigations or treatment you provide or arrange must be based on the assessment you and the patient make of their needs and priorities, and on your clinical judgement about the likely effectiveness of the treatment options. You must not refuse or delay treatment because you believe that a patient’s actions have contributed to their condition…”

With this in mind, is it ever defensible to cite a patient’s pattern of behaviour, his intractable addiction or compulsion, in denying a particular form of treatment? No. But if that behaviour is felt to make the chance of a successful outcome less likely, or minimal, then it becomes acceptable to deny treatment. If ongoing alcoholism will inevitably lead to recurrent disease, or continued smoking will fur up the newly fashioned coronary vessels…these may well strong enough reasons to justify that harsh calculation.

Rebecca Brown goes on to explore how much behaviour is ‘habitual’ and unconscious, such that ‘A large and sustained psychological effort is needed to intervene in everyday behaviours and alter habits.’ And the success of such efforts may depend on social factor, there being evidence to show that – ‘smokers from the most deprived socioeconomic groups are as likely to attempt to quit smoking (and to seek help in doing so), but are only half as likely to succeed compared with those in the highest socioeconomic groups’.

Lastly she explores the concept of ‘freedom’ to choose, referring to the philosopher and political theorist Philip Pettit’s work ‘A Theory of Freedom: from psychology to the politics of agency’ he suggests a person is fit to be held responsible for their behaviour if:

  • their actions are genuinely free rather than forced (by compulsion)
  • they can identify with the things that they do (for example, a patient may ‘find themselves’ smoking despite making great efforts to give up, almost as though it is another person doing it) and,
  • their actions are theirs and not an action produced under pressure from others – the availability and the prominence of high calorie fast foods in deprived environments where cravings for such foods might be higher, could be interpreted as an example.

6. I am innocent

A study by Alison Chapple and colleagues, ‘Stigma, shame, and blame experienced by patients with lung cancer: qualitative study’ provides insights into how the perception of blame can affect patients. Sometimes we can get it wrong, and the patient was in fact ‘innocent’, as here –

When I went to see an oncologist for further treatments because I’d had an operation and I’d had half of my left lung removed, I asked them what he thought had caused it and he just laughed and said, “That’s obvious, through smoking.” And my wife who was with me at the time, and we’ve been together since we were 14, she just said, “Well he’s never smoked.” So right away what annoyed me as well as that, on my medical records I’m classed as a smoker and every time I ever went for review after that they would ask me, “Are you still smoking?” because that’s down there. And no matter how I told them, I’d say, “Look I don’t want that on there, I never smoked.”

Casting blame, whether overtly by verbally attributing disease to prior actions, or covertly by just thinking that the patient is at fault, is a dangerous game. You might be completely wrong. What is more, even if you are assured that the patient has contributed to their own illness, you have no idea what lies at the source of their behaviour. The question needs to be asked – would you have successfully avoided addiction to alcohol, nicotine or calories if you had grown up in the same environment, with the same pressures, temptations and opportunities? Would you regard yourself as ‘innocent’?

Conclusion

I have tried to show that it is natural for doctors to apportion blame. Even if we conclude that it is not justified we must accept that it will happen. I write this a doctor who as experienced all of the emotional reactions described above – I am not immune!

The dangers of giving in to the temptation of blame in the clinical setting are those of alienating patients, undermining empathy and disrupting the therapeutic relationship. In the wider social or political context the dangers are stigmatisation and the risk of unjust health policies. It seems that this natural, and therefore inescapable response to illness represents an ever-present threat to optimum medical practice. The solution? This must be down to a combination of professionalism, whereby doctors compartmentalise their emotional reactions and the way they behave, and advocacy. But that is not enough. Being a good doctor requires positive emotional work, understanding, liking, sympathising, commiserating and finding, together with the patient, the best route through a difficult situation. Merely tolerating a patient whom one blames for their predicament is not enough. Any sense of blame needs to be suppressed and dissociated entirely from the doctor’s approach to the relationship. Fate has thrown them in your path, as a professional, and if you will not do your utmost to understand them and help them, who will?

 

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One comment

  1. Dit is op herblogden reageerde:
    Being a good doctor requires positive emotional work, understanding, liking, sympathising, commiserating and finding, together with the patient, the best route through a difficult situation.

    Like

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