Muslim burials with Edencare: a simple act of kindness

This week I was honoured to attend the Muslim burial of baby Adam Hussain.

Funeral costs are rising at around 10 times the cost of inflation. Burials cost even more than cremations, and same-day or very quick burials are a key part of end of life care for Muslims. This means that needy Muslims can have serious financial problems after someone dies. The video below describes how Edencare helped with the practical and financial issues of Adam Hussain’s Muslim burial.

I’m not a Muslim myself (as you can see, from my sloppy headscarf!) but attended in support of the family, and the other members of the Edencare team.

I support the simple acts of kindness offered by Edencare and their Muslim burial fund. As part of that, I’ve already have been on some Muslim burial training with Edencare, as in the video here:

The training was a very full explanation of the things that are compulsory and permitted in a Muslim burial

Imams often get a bad press, but the the man training us was obviously very caring, as well as an eminent scholar. It’s easy to get fixated on specific details of a Muslim funeral but, as he said: be as gentle with a dead body as you would be with a live person. The key thing is to do the best for the person.

If you would like to support Edencare, please donate through: www.JustGiving.com/EdencareUK

Diagnosis: eyes first and most – surely ears are next?

Diagnosis is “eyes first and most, hands next and least” – according to Neel Sharma, writing in the BMJ.

I think, though, that ears come a close second.

Sharma titled his piece courtesy of Sir Lancelot Spratt (played by James Robertson Justice in the film Doctor in the House). And Spratt is indeed explicit about eyes first, hands next. I’m sure Sharma is not altogether advocating the Spratt approach. After all, if you watch all of the suggested video, Spratt says “tongue not at all”. As well as telling the poor patient that “you won’t understand our medical talk”.

It’s not a new idea that ears are important.

Osler said “Listen to the patient, he is telling you the diagnosis”.

I’d go further. When the patient tells the doctor their story, I think he or she is often also telling the doctor a lot about the management. Does this patient simply need to tell their tale? Do they want a strictly medical approach? Or do they have other – and often very specific – ideas?

Sharma’s article helpfully underlines the importance of the traditional clinical skills of looking, palpating, percussing and auscultating (listening with a stethoscope). I wish, that he’d added some more primary care examples of the value of observing. And not only for specific medical diagnoses. But for more of the so-called ‘soft’ and mental health diagnoses that cause so much pain to patients – and doctors too.

One way forward would be to move right away from the idea of ‘taking’ a history.

‘Taking a history’ is what I was taught to do in medical school. But now, as a patient, I know just how annoying / frustrating / infuriating / throughly unhelpful it is for a clinician to ‘take’ my history. They may have ticked all their boxes. But they often (actually, it’s usually) have no idea about my concerns or ideas. So, their ideas about what should happen next are of very little help to me.

Of course there are some important exceptions. The patients who don’t think their exercise-induced left sided chest pain is anything to bother about, for example.

But surely the point of a patient consulting a doctor is not to fit that individual into the set-up of the clinician’s clinic? I think that even the idea of a clinic ‘belonging’ to a clinician is wrong. Sharma ends his piece by agreeing with Sir Lancelot Spratt’s thoughts on success: “you need the eyes of a hawk and the heart of a lion.”

The eyes of a hawk must be a good idea. But the heart of a lion?

It’s another sort of bravery that’s needed to stand beside the huge number of individuals and families living with chronic and life-limiting conditions.

 

Exercise for the brain! 

A meta-analysis in the British Journal of Sports Medicine has underlined how important exercise is for brain power in the over 50s (that’s me!)

Looking at the results of 39 papers: “The effect of exercise on cognition was statistically significant for all domains, except global cognition.”

In other words, exercise may not actually make you smarter, but it will help preserve brain function

Resistance training (with weights or exercise bands) was good for executive function (organising oneself to achieve a goal, using skills of mental control and self-regulation), memory and working memory (temporarily holding information available for processing).

Tai Chi seems to do well too. Although there are not very many studies, it seems to help working memory.

The more often you exercise, the better results you get. Intensity and duration is apparently less important (even though that does seem surprising).

Overall: “The findings suggest that exercise programme with components of both aerobic and resistance type training, of at least moderate intensity and at least 45 minutes per session, on as many days of the week as possible, is beneficial for cognitive function in adults aged over 50.”

Those who are more socially active, and those doing the ‘sham exercise’ of stretching, have almost as good results as exercisers. In fact, the researchers say “the effect size was still positive but no longer statistically significant”. What they actually mean here is that, scientifically speaking, there is no difference between exercisers and the socially active, or even those doing stretching.

I’m going to recommend James Thompson’s blog if you want more details but feel that reading the original paper is too challenging for you. He explains much of the science-ey stuff very clearly, even if he summarises the paper as something “which might provoke some people to walk about a bit, which is no problem so long as they do not clog up the traffic.”

As someone aged over 50 who lives just behind Oxford Circus, I know that shoppers, tourists, and (only this last is understandable / excusable) those pushing a pram, or just out of their pram are much more of a bother to other pedestrians than me!

But pity poor Mr Thompson. Has no-one told him that he’s getting older every single day?


 

A patients eye view of CPR?

Mark Murphy’s Out of This World is billed as “genre-defying action packed theatre”— but I wonder if it is also trying to give a patients eye view of CPR / ICU?

I watched Mark Murphy and VTOL decades ago, when they first mixed dance and film: and remember how entrancing it was to see people dancing with projected versions of themselves, and with film back-projected to look like someone was falling — or were they pushed? — out of a very tall building.

I knew Mark was bound to have thought up something very different. And so he has for Out of this World.

The storyline is based on a car crash — a woman, we quickly realise, is put in a medically induced coma, and her new husband ends up brain dead. There’s what looks like a fair few professionals looming over the victim/survivor. With views in the middle of above from someone who is, presumably, nearly dying.

Although the story is supposed to be about love, I couldn’t get too interested in that element. It’s not only me who felt like that — see the Guardian review here.

But the technical parts of the show are amazing. People walk up — and down — walls in the smoothest of ways. Look at the rehearsal footage above to get an idea of the mouthdropping aerial work. The nightmare of the coma / memories of the crash / the scan(s) is all definitely nightmarish.

The representations of resuscitation / CPR blend eery accuracy (the doctor’s words) with unsettling images of what it might be like  — or maybe it is like? — from inside the head of a patient.

I avoid watching Holby City / Casualty etc since they never seem very life-like to me. But the words and tone here were just like the ED/A&E Department I (relatively!) recently worked in. So it seems like V-Tol took careful notice of their Medical Research Consultants: an anaesthetist who also leads an air and land ambulance service, and two neurosurgeons.

I want to ask two questions.

First, although all the medical words felt impressively real to me, most of this went over the head of the super-intelligent non-medical friend I went with. Has the non-medical public seen so much of the soap stereotypes that they can’t see beyond them? Is this one of the reasons why the public still have such wildly optimistic ideas about CPR success?

Secondly, the visuals here sucked me into a patients-eye view. Maybe the anaesthetist/neurosurgeons know what it’s like for this sort of patient? Though presumably not for the patients who die? I have  myself shared rare stories from relatives involved in CPR — see here and here. But while doctors (relatively) frequently talk about broken ribs and bruised mouths with CPR, I don’t know of any patient openly talking about what CPR is like. The ones who live are grateful, of course. Presumably the experience is too short for the sort of PTSD that is increasingly recognised for ICU survivors?

The official 1 minute trailer for Out of this World is here

But I think the rehearsal footage is more fun – more aerial, more extreme – and gives a better idea of what I think are the best bits.

Awareness and acceptance?

Awareness and acceptance are often trumpeted as the ‘right’ way to go for patients with a terminal diagnosis.

As a clinician, I certainly saw how people ‘in denial’ (or with their oncologists seemingly in denial!) often had ‘a bad death’, after the inevitable inevitably became clear.

So the idea of being fully aware and ‘accepting’ an impending death definitely seems — on the face of it — the best idea. It’s easy to think that patients and relatives are just foolish if they don’t join in ‘accepting’ what those clever doctors (haven’t quite) said.

I would like to raise some fundamental questions about awareness and acceptance.

After all, some — or maybe it’s many — doctors seem to have what might be described as almost an existential crisis when a patient doesn’t get better. Danielle Ofri has written explicitly about how doctors find it extremely difficult to simply tell the truth to patients, when it seems that curative treatment is unlikely to work. Maybe that is because doctors are trained to do things to make people better. It’s their raison d’etre!

Don’t patients have an even more existential task, when it comes to imagining their own death?

And it’s all very well for clinicians to ‘help’ patients and relatives with awareness and acceptance. When even (relatively time-rich) palliative care clinicians only spend maybe a few hours with each of their patients. After which the doctors can get on with their  own lives.

I’m not saying end of life care is easy for clinicians: the high numbers with burnout show the extent of the problem.

But awareness and acceptance is a 24/7 job for patients and relatives.

So no wonder some patients are into denial.

The most commonly advertised options are to ‘bravely fight’ (most commonly for other sorts of treatment) or indulge (surely we’re all worth it!) in distractional ‘bucket list’ activities.

See linked posts: Brendan McCann’s story about his partner not understanding he had cancer; and my exploration of collusion in doctor-patient communication.

Collusion between doctors and patients over the handling of bad news

Following on from Brendan McCann’s story about his partner not understanding he had cancer, I wanted to share some useful details from a Dutch ethnographic study of unhelpful collusion between doctors and patients when there is  bad news.

The study followed 35 patients with small cell lung cancer (SCLC) from initial diagnosis to death. As background, stage II SCLC has a 5-year survival of about 19%. Stage III SCLC 5-year survival is even lower at 8%.

In the initial consultation, when patients were told that they had cancer, there was “a rapid transition from the provision of bad news to a discussion about what can be done about it. By far the most time and energy was spent on treatment options… the doctor instigated this but .. the patient eagerly complied … When the patient was told that the cancer had returned, he immediately interrupted: ‘What can you do about it, doctor?’”

Throughout treatment and remission, discussions were almost entirely about the planning of chemotherapy sessions, side effects, and test results. Both parties colluded in focusing on the treatment calendar and, at the same time, in ignoring the long term — the prognosis and the likely “shape of the illness trajectory” (when and how patients might get sick).

Doctors frequently used ambiguous words — for example focusing on a ‘clear’ X-ray when they knew full well that the patients cancer had not been ‘cleared’. The offering of second and third line chemo was also very ambiguous. Patients “could not comprehend” that all the work and money involved in the intensive treatment they were offered could be “useless” and did not (usually) result in a cure. Even if doctors “explicitly stated that the treatment was palliative … the curative aura surrounding it gave another impression.”

There is increasing evidence that patients receiving palliative care not only have better quality of life, but some of them also live longer. In other words, while second and third line chemo is intended to be life prolonging, sometimes it doesn’t even do that.

Doctors, patients and relatives might individually have occasional doubts about whether there was going to be a recovery but “they would not acknowledge this publicly so as not to be seen as undermining the others’ trust in future recovery.” With relapses or when fellow patients were seen to be deteriorating, these doubts might be discussed: “But even then, patients and relatives would do their best to adhere to the recovery story to spare each other anguish.”

The optimism sustained by recovery stories “helped patients and relatives to endure the treatment phase”. However, “it was extremely painful when later it became clear that  [the] optimism was based on illusions.”

False optimism made accepting death more difficult, even if it was actually imminent. As well as affecting treatment decisions, it hindered the necessary practical arrangements and farewells. Retrospectively, the collusion “was a reason for regret both for patients and relatives.”

I’m not saying here that the brutal truth should be thrust savagely upon patients and relatives. After all, everyone wants to be one of the exceptional people who survive for five years. But I’m not sure the vast majority who are going to die are well served by ambiguities or false optimism. The Dutch researchers certainly think that it would be good to break the cycle of collusion.

They say, “awareness cannot be forced on the patient, it can only be supported. This requires an active, patient orientated approach from the doctor.” In the ‘traditional’ model of curative medicine, (increasingly now) followed by palliation, I think the really difficult bit comes with the transition. So I also think that hospice doctors have it easier than GPs — since they see patients and relatives who have already accepted palliative input.

The Dutch researchers don’t get into this. They end by suggesting solutions to the collusion from outside the doctor-patient relationship, for example: “‘treatment brokers’, people who are trusted by the doctor and the patient and can help both parties in clarifying and communicating their (otherwise implicit) assumptions and expectations.”

This feels a bit like the doctors passing over the hard, dirty work to someone else — leaving them with the technical magic and the fancy (and rare) cures!

And aren’t nurses already used in this way?

Talking is good – but is that enough?

Brendan McCann has written of how challenging it is for doctors talking. He is a 30 year old cancer doctor who was diagnosed with a rare cancer in his pelvis:

“My partner and I sat wide-eyed as the surgeon scrolled through the MRI scan … explained the diagnosis [and what was going to be done] … then we saw a kind nurse who gave me leaflets about [the specific cancer] and cancer support groups.” Luckily, Dr McCann’s cancer was surgically removed and he was told he needed no further treatment.

Afterwards, “as advised by the nurse, [Dr McCann] attended the cancer support unit.

My partner asked me why I was going.

‘Because I had cancer,’ I said.

Shocked, she replied, ‘What, really?’ ”

Dr McCann wrote of how “despite our best efforts, [doctors] are often asked to reiterate our explanations to patients or their relatives”. He commented that although it might be difficult for doctors talking, “next time [doctors] get frustrated by this, [they should] ask [themselves] this question: if the girlfriend of an oncologist didn’t even know he had cancer, what chance do the general public have of fully understanding their medical predicament?”

His article is headed: “It’s good to talk, actually talk

But is simply talking, even ‘actually talking’, enough?

Some other questions were also raised here for me, including about how:

  • Dr McCann was alone with a serious problem — his partner didn’t even think he had cancer;
  • the phrasing of the end question almost seems to perpetuate ideas about the technical mastery of doctors, and the limitations of patients — when doctors do not actually have full mastery over cancer, and patients are known to actively collude in the handling of bad news.

Read more in linked posts here and here.

We need to listen and hear – as well as talk about resuscitation

This week’s BMJ has four linked articles  “squar[ing] up to decisions on ‘Do not attempt cardiopulmonary resuscitation’ (DNACPR)”. It aims “to spark debate about an area of clinical practice often fraught with legal and ethical challenges” and suggests that doctors “are often reluctant to start conversations about resuscitation decision”. The Editorial premise is that we need to talk about resuscitation.

My rapid response suggests that we also need to listen to and hear the diverse views of patients and families. Doing this might suggest several practical ways forward.

Read it at http://www.bmj.com/content/356/bmj.j1216/rr-5

Or in the text below.

[There were 55 ‘likes’ for this in the BMJ! And I got quoted by Michael Stone

Read more…

Some patients and families really appreciate talking about resuscitation 

There is already much good practice around talking about end of life care. However, some  clinicians are unwilling to raise the subject of resuscitation – fearing that patients with get upset or complain. Those clinicians who feel hesitant could usefully hear the quiet voices of patients and families who appreciate it when they can talk about resuscitation.

Read more…

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