Month: December 2014

Response to Atul Gawande’s Reith lecture ‘The problem of hubris’

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Dr. Atul Gawande (Illustration by Joel Kimmel for The Boston Globe)

In his 3rd Reith lecture ‘The problem of hubris’ Dr Atul Gawande spoke about doctors’ reluctance, whether through habit, laziness, aversion or even commercial interest to ask about patients’ true goals near the end of life. It is not easy to find fault in a lecture that so clearly expresses what many of us believe, that death is over-medicalised and the person’s priorities frequently overlooked in the rush to reverse complications, but there was something in it that didn’t sit well with me. I will try to explain.

Dr Gawande was forthright in his criticism of doctors…

…the way we in medicine can deny people these moments, relegating them to the care of strangers alone in an intensive care unit, the way we can forget this out of obtuseness and neglect, is I think cause for our shame.

This frustrated me a little because he did not get behind the behaviour that he criticised. Doctors and nurses are ‘people people’ after all, and there must be good reasons why a clear-sighted approach to their patients’ wider goals is not maintained. My argument is that our failure to protect priorities is more likely to be due to sensitivity and nervousness rather than laziness or lack of empathy.

 

Barriers

The patient, Peg, whom Dr Gawande used to illustrate a ‘good death’ had recurrent sarcoma. With the right support she was able to continue in her role as a music teacher until the end of her life. The image of her saying farewell to her young pupils was incredibly moving – so powerful in fact that I can imagine the vignette changing peoples’ practise immediately. But… contrarian as I am, I got to thinking – why was Peg’s case not typical?

When I compare her case to that of patients I see towards approaching the end of their lives, I see several differences:

Age – most dying patients are much older, leading to…

Frailty and co-morbidity – older patients may not have one identifiable pathology (eg. malignancy) that is driving terminal decline, meaning…

Absence of specialist palliative care input – however desirable specialist input is, the fact remains that many approach death without that expertise… In addition, the situation is complicated by…

Mental incapacity – the identification of goals is so much harder in this case; and finally…

Accelerated deterioration – identifying goals and agreeing the limits of medical care is much harder when the signals that death is approaching come quickly, or are punctuated by potentially reversible crises

These factors present barriers to the measured identification of therapeutic futility – this being the point, one assumes, at which an effort to seek a patient’s wider goals should be made. One could argue that the identification of goals should occur much earlier than that, but while a possibility of cure or sustained stability exists, I think many patients and healthcare workers would be reluctant to take their eye off the ‘medical’ ball.

 

The sudden desire for life

Broadening the conversation to non-medical goals can feel risky at times. It brings the patient out from the usual transaction of therapeutic benefits and burdens, as though to say – ‘These medical details are not relevant in the longer term, because you are gradually approaching the end, and there is nothing we can do to stop it...’ – Even in skilled hands, it is an intrinsically negative conversation, however one wants to portray the identification of goals as positive.

If the patient was hitherto attempting to maintain a constructive and practical attitude, this change in tack can be painful. It may be too early to move away from the medical practicalities. As a doctor, I worry that moving into this area is interpreted as a signal of surrender to the disease. Sue Lawley, who chaired the Reith lectures, touched on this aspect of psychology when she asked the question,

‘Doesn’t the desire for life suddenly at the end, when someone is aware that they are dying, suddenly overcome all kinds of thoughts they might have had before? Suddenly people want to live.’

This is what I have seen in the eyes of patients who have been admitted for emergency care at the end of life. I see it in their relatives’ eyes too. It is the strong desire for help. Yes, that might be help with poorly controlled pain or breathlessness (ie. emergency palliation) but in the ED, or on the acute ward, the first response of physicians is to deal with the active complication – be it a chest infection, haemorrhage or electrolyte disturbance. Salvage. Not submitting to nature, yet. Resisting the impulse for survival is unnatural, for want of a better word, and in the context of a rapid or unexpected change in condition it is very hard for relatives, primary physicians, even hospice staff, not to refer to hospital – even if the patient’s stated goals have made it clear that more time in hospital is the last thing they want. Once in hospital, escalation is often hard to avoid (I explored this in a post called ‘5 days: a tale of escalation creep’)

 

Positive goals, negative limits

Dr Gawande has found that to determine a person’s goals one needs do no more than ask and listen,

“… the second important lesson that I felt like I learned was that the most reliable way to learn what people’s priorities are – and there are highly technical studies on this – the most reliable way to learn is to ask. And we don’t ask.”

He speaks about doctors’ tendency to talk more than the patient during consultations, about the self-restraint that is required to just stop and listen. Later, he gives the example of his father’s changing goals as a spinal tumour progressed –

“…his first goal was I want to stay a surgeon as long as possible. And then when his hand became paralysed by the tumour and he was forced to give up surgery, then it was that he wanted to at least, no matter what, remain … he’s a social creature.

“…And in fact even towards the end and he was in a hospice, he had a dinner party almost every week. He loved to stay in contact with his family by Skype, to email and connect with people. He would have grabbed for any opportunity to keep that going.”

In this case there is no doubt as to a son’s ability to enquire about and interpret his father’s preferences. Those preferences were positive. They were about making the best of the life that remained. But I would contend that it is not so easy for doctors in general.

The difficulty I experience is that this conversation often runs in parallel to the rather downbeat subject of ‘ceilings of care.’ For all the focus on goals and what can be achieved in their final weeks, fairly rigorous planning is required to agree on what will not be done. I explored this in a post called ‘Not for this and not for that: emphasising the positive in care for the elderly’, in which the negatives seem to dominate the conversation and doubts can arise as to the motivations of the clinician. To disconnect the two (‘I’ll bring it up another time…’) seems cowardly, but to move from goals to ceilings might appear callous – ‘OK, we’ve explored what your priorities are… and in light of those we need to talk about what treatments might not be appropriate, should you be rushed in with something acute…’ Again, the positive segues into the negative. The negatives have to be broached. And we don’t find this easy.

 

Bolder but colder?

The barriers described above are real, and exist not because doctors are too lazy or obtuse to surmount them, but because they find it difficult to find the ‘right time’ or the ‘right way’ to draw their patients into a conversation that they may not be ready for. It is a manifestation of over-sensitivity, rather than the opposite. There are parallels here with the aversion to causing distress when bringing up the subject of cardio-pulmonary resuscitation. As the Janet Tracey judgement showed, not doing something important (in this case asking a terminally ill lady about CPR) because you worry it might offend or upset her, is not defensible. Similarly, not turning a dying patient’s head towards the consideration of broader goals rather than the narrow aims of their next course of palliative chemotherapy, is just as regrettable. To be better we probably need to be bolder – even if that means feeling a little colder.

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‘With respect, you’re wrong’: dealing with faith in alternative therapy

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‘An Astrologer Casting a Horoscope’ from Robert Fludd’s Utriusque Cosmi Historia, Oppenheim, 1617 (via Wikipedia)

I have always been very accepting of patients’ attitudes to complimentary medical therapies, even homeopathy. But this week, as I listened to Bosworth MP David Tredinnick arguing that homeopathy was a valid therapeutic option, I wondered whether doctors can respect the views of the patients too much. The interview (audio here, Radio 4 Today programme, 0851), during which Robert Winston defended/apologised for his previous description of Tredinnick as a ‘lunatic’* caused me to reflect on my own hypocrisy.

 

In the clinic, with a patient, it goes like this:

Me: “…so that’s the plan for the next two weeks. I’ll arrange the endoscopy, and chase the results of the scan… then come bacl to see me in a month or so. Does that make sense?”

Patient: (meekly) “Yes doctor. I just wanted to ask though…”

Me: “Go ahead.”

Patient: “I’ve been seeing a ——ist. Is it OK if I carry on?”

(pause)

Me: “I’m sure that will be OK. As you probably know, there isn’t any good evidence that helps this condition. But it shouldn’t do any harm, and some patients do feel benefit from it…”

 

This is a standard, respectful response. As long as the patient adheres to conventional advice, most doctors do not mind if alternative therapies are pursued in parallel. But the response outlined above is actually disingenuous, because I do not believe in alternative therapy. I believe that the patient believe, and I respect that belief. To paraphrase, what I am saying is – ‘Yes, yes, of course you might be interested in seeing the ——ist. It’s completely useless of course, but I haven’t got a problem with it as long as you do as I say and take the proper tablets too.’ To paraphrase even more harshly, ‘Yes of course, go and spend good money on quackery, do what you like… but make sure you come back to see the proper doctor.’ Perhaps it would be more honest to just say that. But there is no need to antagonise, because there is rarely a risk to the patient. Usually, he or she will pursue both forms of treatment in parallel. The ‘real’ treatment makes them better, the alternative treatment makes them feel better (and may, through the complex and insufficiently understood placebo mechanism, assist in their recovery). No need to be disrespectful…

Except… when it actually matters. I am reminded of other patients – who have been diagnosed with cancer and have done a ‘Steve Jobs’. He was diagnosed with a rare, sometimes quite indolent neuroendocrine tumour. However he avoided conventional therapy for 9 months, favouring alternatives. The Science Based Medicine blog reports, ‘He kept to a strict vegan diet that included large quantities of fresh carrot and fruit juices’ and quotes from his biography:

To that regimen, he added acupuncture, a variety of herbal remedies, and occasionally a few other treatments he found on the internet or by consulting people around the country, including a psychic. For a while, he was under the sway of a doctor who operated a natural healing clinic in southern California that stressed the use of organic herbs, juice fasts, frequent bowel cleanings, hydrotherapy, and the expression of all negative feelings.

This is not an isolated case. Less well known patients diagnosed with cancer do take themselves abroad and submit to entirely unproven methods of cure. It does not work, and when they return, more unwell, scans show how the malignancy had spread during the ensuing months. In cases of life threatening illness there may well be a duty to let the veneer of respect fall away, to reveal what we really think. “NO! DON’T! You are wrong.” In our training we are encouraged to incorporate the patient’s values and beliefs into our method, such that a therapeutic plan is developed in partnership. We give credence to beliefs, even if they seem absurd, because

i) we know that an individual’s internal psychological structures, and coping mechanisms, must be preserved as they are necessary to encourage recovery, and

ii) challenging them risks disruption of the patient-physician relationship. My argument necessitates a strong challenge when life is at risk.

Such challenges do not come naturally or easily to doctors who work in a non-paternalistic and collaborative way.

What I am describing here is a form of flexibility with respect to our response to patients’ beliefs. As the risk grows, our freedom to warn and challenge grows. Our highly developed method of ‘partnership’ crumbles to reveal paternalistic foundations  – ”We know best, you are wrong.”

And what of Tredinnick’s beliefs? The trouble is, he sits on the house select committee for science and technology. The committee exists ‘to ensure that Government policy and decision-making are based on good scientific and engineering advice and evidence’! The strange thing about listening to Tredinnick on the radio was that… he came across in an entirely plausible way. He displayed a politician’s natural ability to connect with the beliefs of many of those he represents, and when challenged by Winston turned to the ‘patient experience’ rather than objective evidence. His respect for homeopathy seems to be based on the fact that, in general, people feel better when they use it. This is the placebo effect, and cannot be denied. It resists the powerful black hole that is the evidence free zone around homeopathy. And it applies to any therapeutic symbol that one chooses to invest ones faith in – a sugar pill, a magic stone, a new diet. It is not science, but it is relevant, for it taps into the core of our patients’ psychology. It cannot be ignored or dismissed without careful thought.

The challenges of persuasion and communication described above are in the power of individual clinicians to work through;  we can modulate our approach according to the perceived risk. When a politician who is able to steer policy gives public backing to a useless therapy, we must be concerned. Such public statements, that homeopathy works, will be received by those suffering, or yet to suffer, both mild and severe illness.

 

* this epithet was felt to be justified because of the MP’s belief on astrology

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Xmas is here! 3 collections of articles…

Motives, emotion and memory – exploring how doctors think

Spoken/Unspoken -hidden mechanics of the patient-doctor relationship

A face to meet the faces

Defending the ledge

A tricky one this, but I believe there is point to make – about perception.

 

A recent Guardian article by author Nicci Gerard gave an account that will be familiar to those involved in the care of the elderly. Her father was admitted to hospital with what seemed to be a relatively minor complaint (a leg infection), but left debilitated and hugely dependent on others for the activity of daily living. He had dementia, and his cognitive abilities declined in hospital. His fate is squarely attributed to the care he received. The headline: My father entered hospital articulate and able. He came out a broken man.  The sub-headline: In a plea for better understanding and care for patients, Nicci Gerrard describes how family helped her father cope with dementia – but five weeks in hospital ruined the end of his life.

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His clinical course raises important questions about the nature of frailty (a syndrome in itself, though poorly understood), the quality of hospital care, and compassion. However the presumption that his deterioration was wholly attributable to the care he received generates a defensive reaction in me. What follows is not directed at Nicci Gerard – for all I know her father’s care was genuinely poor. The observations I make are based on personal experience and many family discussions.

 

The link between hospital and deterioration can be a classic error of association. Just because A happens after B does mean that B is caused by A. Often a person will have been going downhill in their own home, only to be admitted when a crisis occurs or when their functional level dips below a certain level . And then… hospital. Hospital, with the attendant risk – not the well known dangers such as falls, infection, thrombosis or exposure to error, but the removal from familiar surroundings and familial compassion.

 

Even with the very best care that the NHS has to offer, a frail elderly patient will be one of several under the care of a single nurse; they will wait for the toilet, they will wake up disorientated in the early morning gloom, they will be frustrated. The detrimental  effect of these non-medical, unquantifiable influences is significant – most would agree – and it is little surprise that recovery can be impaired, or does not occur at all in such an environment.

 

Precisely why patients fall into an accelerated spiral of frailty and complication continues to defy explanation. Reviews have described the physical features of frailty (muscle wasting, poor appetite repeated falls, bone thinning, fatigue)  and proposed theories based on diminished oxygen utilisation. Physical exercise and maintenance of muscle mass has been shown to be protective.  Relatively minor physical challenges lead to dips in functional status, as illustrated in this figure from the linked Clinical Medicine paper by Clegg and Young.

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But frailty and its complications are phenomena driven from within, by the caprice of nature, rather than by the conditions in which patients find themselves after admission to hospital. Explaining this is not easy. Many times have I sat in small relatives room and heard,

“Ever since he’s come in here he’s gone downhill…” or, “…he was fine before, he was looking after himself, but now… he’s bedbound.”  Or “He’s not getting enough physio, just twenty minutes yesterday… he needs an hour to keep him going.”

The challenge is to offer an explanation that describes the nature of frailty pre-admission, but does not appear to shift the ‘blame’. This requires opening a relative’s mind up to the idea that things were not  quite as good before admission as they seemed. Perhaps the patient’s nutritional status was clearly borderline on the day of admission, belying a long period of poor diet. Perhaps patches of redness over the hips and spine are indicative of very early pressure areas – indicating long periods in a chair. Or perhaps the first physiotherapy assessment raised serious concerns about balance and safety, suggesting that they have been on the verge of an accident for a considerable period. All was not well. However, if the possibility is raised that an elderly patient was gradually going downhill, or teetering, one must anticipate guilt.

It is absolutely natural for family members to feel guilty when they are informed that unbeknownst to them, beneath their gaze, their mother or father has been gradually crossing over into the age of frailty. It is natural to react with self-examination: – I’ve been visiting x times per week or month – I’ve ensured the best care, screened the carers, liased with social services, taken round food, not neglected them… – and now they are told that despite these demonstrations of duty, attention and love, their parent is frail. Attention therefore focuses on the place where these manifestations of frailty have become clear – the hospital.

At heart, I suppose, this discussion is about human feelings on both sides – the relatives and the medical staff. If a patient deteriorates in a ward that is served by nurses doing their best to provide support, and doctors who believe they are successfully identifying reversible factors and treating them appropriately, the staff are likely to reject any implication that the downward trend is due to the quality of care. To put it as its most basic, ‘It’s not our fault…’. Or, as I have said to anxious trainees, upset by the inexorable decline of a patient they have been watching closely, ‘It’s the disease, not you.’ And this disease – dementia, with its associated frailty, can run away against all expectation.

 

To be fair, Nicci Gerrard does not ‘blame’ the medical staff;

It wasn’t really the fault of the doctors and the nurses. They healed his infection, they put food and drink beside him, almost all of them treated him with respect and genuine kindness.

But, in an affecting description of what we don’t provide in hospital she writes;

But they left him to himself and couldn’t spend hours making sure he ate and drank. They couldn’t brush his teeth and shave him and comb his hair and read poetry to him, do crosswords, play chess, talk to him, hold his hand, tell him he was safe, keep him anchored to the world he loved.

And finally, a painfully beautiful image of how dementia and frailty combine to steal a once impressive man;

It was as if all the ropes that tied him were cut over those weeks and slowly he drifted from us. We thought that when we got him home we could draw him closer to the shore. But he was too far out. Three weeks ago he slipped from us at last, over the crumbling line that separated him from death.

Reading this, I recognise that there should be no difference of opinion between relatives and medical staff. There is hard work to be done in terms of communication, such that expectations are realistic and perceptions understood on both sides, but there is no escaping the fact that elderly patients with dementia are lost in these huge monuments to healing, and they do lack the minute-by-minute support that they need to keep those ‘ropes’ intact. A great revolution in dementia care is required, but it is too simplistic to attribute each tragedy of lost independence to the wards.

 

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Third collection of articles, available on Amazon (click icon).

Also available:

Motives, emotion and memory – exploring how doctors think

Spoken/Unspoken -hidden mechanics of the patient-doctor relationship