Breaking bad news

Birthday party

Lonely birthday by Stephen Davies


It was time. After a week in hospital Mrs G, in her late 80’s, had failed to improve from a chest infection. Her frailty meant that the chances of making it out of hospital were shrinking. We were duty bound to discuss resuscitation. I knew what I thought: there was no way it would work. Before we entered the bay, I asked the team what they thought – all agreed. Was that their true opinion, or where they just following my lead? All one can do is ask. I looked to the senior nurse. She agreed too. It was not a difficult decision, medically. “By the way,” said the nurse, “It’s her birthday.”

            I approached the bed space. Mrs G was drowsy, but a hand on the shoulder and gentle rock caused her to wake. She had all her mental faculties, full ‘capacity’, as we say. I knew already that there were no family members living nearby. I started in the usual way, with a brief examination and review of the latest blood tests. Then I prepared to deliver my line – ‘I thought we should talk about what might happen if you get worse… if your breathing or your heart deteriorates… there’s a chance that your heart could stop suddenly… it’s called a cardiac arrest…’

            Her thin arm lay outside the sheet, and I glanced at the name band. The date and the month… today. There were no cards, no flowers. I paused. Was she even aware? “It’s your birthday,” I said. “Yes,” she replied, in a neutral tone. It had no significance for her. Birthdays are only as special as the people around you.

            Images of her as a young girl waking up in a state of excitement, 80 years ago, entered my mind. The juxtaposition between youthful health, optimism, a life not yet lived, and present reality… was stark. My words, formally raising the prospect of death, would symbolize the end of the dreams and ambitions she had nurtured. Perhaps most were fulfilled. I did not know.

            “Well, happy birthday anyway,” I muttered. She smiled weakly. We moved to the next patient. The tasks we had set ourselves – agreeing limits of care, completing a DNACPR form – were incomplete. “Not today,” I said to the team. “Not today.”

 

***

[Patient details changed.]

Advertisements

Reputations: the light and the dark

‘Light in the darkness’ by Pat Cegan

 

A recent thread on Twitter brought up a subject that is really spoken about. Elin Roddy kicked it off with a comment that patients admitted to nursing homes should routinely be engaged in conversation about their preferences towards end of life. With habitual frankness, she later commented that there is a danger that those working in hospitals who are more willing and able to do this, run the risk of gaining a ‘reputation’. Others confirmed that they had indeed become known in their Trusts as being prepared to discuss resuscitation and sign DNACPR forms.

This is something that has bothered me for a long time, being one of the self-acclaimed “willing”. What if a doctor acquires a reputation as being comfortable with the fact that their patients might die? Might that realism be construed as nihilism? Might they come to be regarded less as a saver of life, but rather an usher into the next? Uncomfortable!

Doctors lie on a spectrum. Some cannot bring themselves to consider the possibility of death, and continue to propose active treatment even when the patient does not seem to be responding. Others readily identify signs and symptoms indicating that life expectancy is limited, and are prompted to initiate a (sometimes) difficult discussion about end of life care. Some move across different points on the spectrum, but it is quite possible that they feel at home near one end or other.

If a doctor actively seeks the signs of imminent dying in the belief that they will save patients the burden of futile treatment, there is a theoretical danger that they will fail to recognise opportunities for saving them. A doctor on the other end of the spectrum may identify ‘survivors’, and during their career may be credited with helping to save patients that others would have ‘given up’ on. However, in doing so they will probably push more patients through periods of aggressive and ultimately futile treatment. How many ‘failures’ it takes to justify one ‘success’? This sounds like an overly cold and impersonal way of looking at things, but it is a justifiable metric. In my recent paper on DNACPR decisions, I cited a study by Paniagua et al, who found that ‘29 octogenarian patients with cardiac arrest have to be treated with CPR to net one long-term survivor’. That ratio doesn’t look good.

As a patient, do you want your doctor to be the one who looks for any chance to cure, or who accepts that death is sometimes inevitable and changes their approach swiftly if things are not going well?

Of course, it all depends on clinical context, and on your wishes. However, in the 8th and 9th decades, when physical frailty is significant, comorbidities sometimes numerous, and mental capacity variable, the assessment very much depends on the doctor’s perception. Their instinctive position on the aforementioned spectrum may make a big difference.

They may be influenced by the type of patients they tend to see; their case-mix. A palliative care doctor will spend his or her days looking out for signs of terminal deterioration, and (almost by definition) will not be looking for opportunities to commence heroic new treatments. The elderly care physician will try to balance the burden of curative or preventative treatment against the realistic benefits. In my specialty, hepatology, I see patients in their third and fourth decade who look as though they are going to die in the next week or two (usually from multiple organ failure as a complication of cirrhosis). But, being young, they might pull through if we keep supporting them in the ICU. The reward, survival, seems to justify any cost – long weeks in ICU, months convalescing. But the price (not mine, the patient’s) to pay for failing to recognize that organ support is not working, and carrying on with fingers crossed just in case there’s a ‘turnaround’, is a prolonged death attached to multiple life-support machines.

Negotiating optimism and pessimism in these situations is difficult, and as I described in a recent case report, fluctuations in clinical condition that result in changes of tack on the part of the medical team can result in what looks, in retrospect, like vacillation. This goes to show that few of us are comfortable in diagnosing dying, and, especially in younger patients, will always choose life-prolonging/saving treatment if there is a chance, however small, that it will work.

There are other, perhaps less noble, drivers to continuing with aggressive treatment in the face of apparent futility. Perhaps a patient’s management is being led by another consultant or team, and it does not feel right or comfortable challenging their decision. Perhaps the underlying disease is well outside my expertise, and I do not feel confident commenting on the likely disease trajectory. Perhaps the team treating a patient are known to be therapeutically aggressive, and are bound to take suggestions that they should rationalize treatment badly. Perhaps I have seen too many patients die recently, and just want a good news story…

In my view, as a doctor who is generally comfortable and accustomed to recognizing futility, we must be careful not to lose the ability to see glimmers of hope, even if those glimmers are not apparent until the murky surface presented by illness is scratched away by a period of active, optimistic treatment. As long as we are able to admit defeat when things are going wrong, and brave enough to explain that to our patients or their families, it seems reasonable to sit on the optimistic end of the spectrum most of the time.

In this way we might witness recovery against the odds, feel good about, and use those cases to motivate and enthuse our teams. At the same time, there is no harm in being known as a realist who can identify the signs futility when they begin to accumulate, and who is willing to change direction even if that means pushing against the prevailing wind.

***

 

The gentle fiction

through_rose_tinted_glasses_by_white_rapidash-d46mvsm

‘Through rose tinted spectacles’, by monstercoach

 

This time I was going to give the hard news. That was my agenda. He had been in out of hospital a few times, his cognitive and physical status fluctuating due to the underlying condition. There was no cure. So in they came to the clinic, husband and wife, beyond middle age but not yet elderly. I got into it quickly,

“So… the last few months, I’ve noticed, you’ve got weaker every time you’ve come in. The complications have been more difficult to get over. At home… you’re not getting out…”

He said nothing. Perhaps today was an off day, mentally.

“So we need to think about the future. What should we do next time you come in. And if you get really ill, an infection, or…”

His wife shifted in her seat.

I went on, using words I have used many times. About how there was only so much we could do if he deteriorated. About the possibility of spending his last days or weeks at home, if it looked like he might be dying. About things that might happen suddenly. Uncomfortable considerations, but necessary.

“But doctor, he’s doing OK really, isn’t he?”

What? Where was this coming from? I moved by gaze from the patient to his wife. She was winking at me. A classic, conspiratorial wink. No, I would not have this….

“Well, it’s important that we are very clear, and honest, about what we have seen over the last year. It’s been a downward trend…”

“But at the moment, he’s stable isn’t he? He’s alright.”

I looked at him. He was looking at her.

“Don’t want to hear any bad news, do we?” she said.

“No. No. There’s enough to worry about in the world…” he replied, laughing quietly.

I paused. The signals were clear. This was not the time to push it. So I changed tack.

“Well,” I continued, “To be fair, you haven’t been in for two months now. The new drug we gave you for the confusion seems to be working. And…” I turned to the computer, “Looking at your numbers, your blood tests, there hasn’t been much change there either. So yes, pretty stable!” I was getting into it now. The conspiracy of optimism. He needed this –  this gentle fiction.

We wrapped things up. I had achieved nothing definite in terms of anticipating how to handle future crises. We would have to see how it went. So much for my agenda. Perhaps that was the problem, developing an agenda in isolation.

“Back in two months then?” I suggested, “Unless you have to come in earlier.”

They walked out. There would be another time. Or, more likely, the hard truths although fully understood, would remain unsaid until the very end.

 

(Details changed)

 

***

book4coverfinal

Collected posts, Vol IV – click on image to view in Amazon

Glances

I’m sure this, or a variation on it, has happened…

What a shambolic display of medical mores.

Two days after being admitted with liver pain I went for a scan, returned to the ward, and waited for a doctor to come and tell me the result. I put down my book and saw the (most) junior doctor look something up on the ward computer. I’m sure it was my result. She glanced anxiously in my direction. Bad sign. Then she picked up the phone and called her registrar (I presume). She nodded to whatever she was being told. The decision, I guessed, was wait for the big guns to deliver the bad news bombshell. Then her immediate senior walked onto the ward – I had seen him in the morning, he was an SHO I think. Now he looked at the result, bending forward to look closely at the words or the images, and shook his head slowly! He did not know that I was watching him; I was in a bay diagonally across from the nurses’ station, near a window, and the line of sight was not obvious. Sadly, though, I was watching. What else was there for me to do, apart from immerse myself in the latest Le Carré? Then the registrar joined them. I knew she was ‘on-call’, and as they showed her the scan on the monitor a crash call came through… so she left the ward just as smartly. The other two began to leave, but the SHO couldn’t help glancing in my direction as they passed the end of bay. I got out of bed fairly smartly and hurried after them,

​“Have you got the result of the scan?” I asked. Another glance – this time exchanged between the two of them. Natural I know, but so… obvious.

​“We’re…” then the SHO paused.

​“Yes?”

​“I really wanted my registrar or consultant to…”

​“To tell me?”

​“Yes.”

​“Oh.” What could I say? It was clearly very bad news. But neither the most junior, nor the second most junior member of the team felt able to tell me what was going on.

​“When can they come up to the ward?” I asked.

​“Our registrar has just been called away on an emergency,” the House Officer explained.

​“Yes, I saw that,” I wasn’t giving up now, “And the consultant?”

​“He’s doing a ward round tomorrow morning. He’s off-site now.”

​“What does off-site mean?”

​“Not here. In a clinic in another hospital.”

​“So tomorrow then?”

​“Yes. Is that alright?”

​“I suppose so.” But it wasn’t. I spent the night worrying, not sleeping, turning, anticipating the worst. And when it came, the following day, I was almost grateful to be given the details. I had many questions, and I’m sure the juniors would not have been able to answer them.

Now, over half way through my treatment, I look back and realise that it made no difference, the delay – but it was awful nevertheless. It was awful because they knew something about me but I could not find out what it was. It was secret knowledge, just for those with privileges. I could tell it was bad news, because I am not stupid, I picked up the signals, but they…they were not adequately skilled to tell me straight away. They needed to send it up the hierarchy. You know, I’d rather have been told in an unskilled way than be left worrying about it for twelve hours. I think. Or I’d rather not know the result was back, ready to be delivered. I’d rather have been like my poor, elderly neighbours on the ward, barely alert, lacking perspicacity, passive agents in the medical machine. A machine in which we are supposed to occupy a central position, but which, at the end of the day, works in its own, measured, imperturbable way.

oOo

book2 coveramazon

Interactive Ward Ethics 1: Collusion

untitledWelcome to the first interactive medical ethics adventure on the Illusions of Autonomy blog. You will guide an experienced trainee doctor, Nina Charan, through a difficult but not uncommon scenario, and in exploring the consequences of various decisions will experience the risks and pitfalls that are encountered on medical wards. It may end after just two decisions, or it may require 5 or 6 to reach a conclusion. Feel free to go back and forth, using your web browser’s back arrow, or the ‘Back to Section 1’ link at any time to reset. It’s not really about getting to the end – more the ups and downs that occur on the way.

The first scenario concerns an elderly lady whose son forbids the medical team to tell her about a serious diagnosis.

Good luck! Click here to start.

 

NB. Nina Charan is the main character from my novels Proximity and Extremis, in which she becomes involved in a medical ethics conspiracy. In these adventures she will appear to function in isolation, but it can be assumed that the decisions she makes, that you make for her, represent the view of the whole team including the consultant.

Two rooms

TwoRoomsLaunch

Scene from the play Two Rooms

Doctors speak several dialects, and the contrast between that used with patients and that used with colleagues can be stark. I sometimes wonder how patients would react if they heard every conversation that concerned them?

Such a notion seems absurd, practically, though they surely have a right to such access. We have already been through a process of openness with letters, which used to be sent to GPs but not patients. There was a vogue to ask patients if they wanted to receive them, and now patients get them automatically (in my experience anyway). This has caused a change in the way letters are written, such that doctors tend to avoid opaque medical terms and provide more accessible explanations. Personally, I still write in a ‘doctor- to doctor’ way, as the GP is the primary recipient, but I know that if I use lots of acronyms or eponyms the patient will a) be excluded from the thought processes behind their management and b) likely to hold up a highlighted copy when I next see them in clinic.

But back to the conversations. If there is a suspicion of cancer, for instance, it is common to discuss a patient’s condition and scan results in a multidisciplinary team (MDT) meeting. MDTs are designed to bring the opinions of several specialists to the table, for example: surgeons, oncologists, specialist physicians, nurses and dieticians. Some of these meetings go on for hours. Cases may require prolonged discussion, and can become heated if opinions are not in alignment. But other cases are easy, because it is clear that nothing to be done. The liver may be overwhelmed with infiltrates of cancer. Conclusion: no treatment options – palliative care only. Somebody might say, ‘Hopeless’. They are not being heartless; they have never met the patient. But it’s just true. Next patient. It may have taken no more than a minute to reach that conclusion. It is medicine at its coldest and at its most efficient. Time will be spent on the ones for whom there is a therapeutic option, a chance of cure or prolongation.

As soon as practically possible the patient is seen and the results are communicated to them. We move to the second room. As much time as necessary is taken to break the news, and, if done well, the scene will demonstrate medicine at its most compassionate. What a contrast.

If the patient had witnessed the MDT discussion they may well have been sickened by the speed with which their case was dismissed. What about all the other details? Their wishes, their social situation, their feelings… but no, those aspects were not relevant. It was, to be brutal, a technical decision. Too advanced for surgery; too frail for chemotherapy.

Each discussion has a distinct purpose, and each requires a different set of medical skills. To perform well in each environment a doctor has to adapt. Engage emotionally when required, but remain objective, scientifically accurate and evidenced based at other times. To bewail the lack of a more holistic discussion in the MDT would not be appropriate – it would not meaningfully contribute to the decision, and it would hold up the flow. The doctor or nurse in that meeting who actually knows the patient might find it too cold, and might experience a degree of dissonance as everything they have learnt about this unfortunate person is shorn from the presentation. But, come the face to face meeting, all those details come back into play, and are, of course, essential.

What does this contrast tell us? It suggests to me that there will always be a place for compartmentalisation. The modern, post-paternalistic culture, perhaps best summarised in the phrase ‘no decision about me without me’, seems to reach a limit in circumstances where highly focussed and specialised discussion must take place in a clear, unemotional atmosphere. MDT meetings are a necessary but, at times, somewhat surprising throwback to the sacerdotal, impenetrable practice of medicine in centuries past.

spokenunspokenPAPER

Click icon to explore paperback, or here for ebook

Messengers

In hospital medicine, long term relationships with patients are rarer than one might expect. During training (which lasts until your mid-30’s, and even longer for those who prevaricate!) it is unusual to stay in one Trust for more than a year. Becoming a consultant allows such relationships to develop, and this adds a depth of understanding and reward that cannot be experienced as a trainee. These are with patients who have chronic conditions, who attend clinic regularly, and who are occasionally admitted to the ward with complications; they comprise a small number compared to the thousands of ‘one time only’ interactions that take place each year. The irony is that while familiarity leads to trust and sincerity borne of shared experience, it is the fresh, short term clinical contacts that present the gravest clinical and emotional challenges. In these circumstances doctors must learn how to fast-track the communication strategies that will have already developed when meeting a long term patient. The classic example is talking to the patient with a new diagnosis of cancer.

In my mind breaking bad news follows a U shaped dynamic; constructive, forward planning allows the patient to be lifted from the despondency into which the word ‘cancer’ will have dragged them. By talking about what can be done, who they are likely to meet, resources and timescales…glimmers of hope may begin to permeate the gloom, and the certainty of death is diluted. The presence, ideally, of a cancer nurse specialist, reassures them that there will be continuity and reciprocal contact. Together we talk about the support that will be available, and the priority that will be given to their case.

But it is here that the limited nature of my role as ‘first contact’ begins to become clear. For however empathic my style, and however embracing my words, I know that I will have very little do with what happens from now on. As the patient (and family members, if present) look at me and the intensity of the situation burns its way into their memory, I know that it is not my face that they will be seeing in clinic. It will be that of the oncologist, or the surgeon (should the tumour prove operable). Already I am beginning to deflect responsibility to others – ‘the oncologist will talk to you about that…’, ‘they will decide if you should have surgery in a special meeting, the MDT…’ ‘You’ll get an appointment very soon to see one of the lung doctors…’

Sometimes you do meet the patient again – if they become acutely unwell. This might be due to chemotherapy induced bone marrow suppression and sepsis, an inter-current pneumonia; anything that requires admission via the ED. They might just happen to be admitted when I am on call, just as they happened to come in under my care the first time. There may have been an interval of two months. She looks worse. You read the notes, and catch up on all that has been going on. Appointments here, procedures there, PET scans, problems…  You wonder if any of the things you said came true. Did the oncologist discuss prognosis with you – did you ask him the ‘big’ question (‘How long?’) that you asked me? Did the appointment come through? Did you wait too long? Did the nurse specialist call you to keep you informed? So much has happened since that first shocked conversation by the bedside, curtains drawn, your husband leaning forward, staring at the tops of his shoes mutely…the day I broke the news and tapped into your deepest fears.

It is not possible to remain involved in every patient’s journey, especially when their illness falls outside our own area of expertise. The best we can do, it seems, is deliver the first message skilfully and with conviction, while hoping that the promises we offer are realistic, and the undertakings we take on behalf of our colleagues are achievable. Beyond that, we cannot realistically hope to observe their progress or influence their experience. Trainees on the ward soon experience emotionally intense interactions that seem to be over just hours or days after they have begun. A working week might involve many such micro-relationships, and learning how to move nimbly  – but not too smoothly – through this gauntlet of emotions is hugely important.

spokenunspokenPAPER

Now in paperback, click icon to explore