Can scenario planning help with discussions about CPR?

scenario planning and CPR

This post is about scenario planning and CPR. The new RESPECT resource purposely, and quite rightly, considers CPR in the context of other advance care planning decisions.  But even with RESPECT, I dont think worries and discussions about CPR and DNACPR orders are going away anytime soon. I’ve already suggested that scenario planning  could help here.

I want to start by making it clear that CPR can be a very good thing.

It’s definitely a very bad thing that, in the UK, only 8% of people who collapse not-in-a-hospital survive CPR.

Better ‘bystander’ CPR could and would improve this overall figure.  My posting on ‘Learn CPR from YouTube’ is for the pupils of a supplementary school in East London, and in August I will be speaking about CPR on a satellite channel aimed at the Bengali community.

Sadly, though, some people are never going to benefit from even the best CPR.

The Resuscitation Council is clear that, when “a person is dying—for example, from organ failure, frailty, or advanced cancer—and his or her heart stops as a final part of a dying process, CPR will not prevent death and may do harm.”

To be more specific, “Cardiopulmonary resuscitation is futile for in-hospital cancer patients with widespread incurable disease and poor performance status.” 

However, there are lots of people for whom the situation around CPR is less clear cut. These individuals might benefit from a discussion of the worst, usual and best possible scenarios.

Let’s start with the best case. We’re concerned here with people who have organ failure, frailty or cancer. So the very best case scenario, in medical terms, is that they get back to how they were before the CPR. Usually the CPR only happens because something has got much worse – so the ‘best case’ may well not be very good.

International meta-analyses have found that that survival after CPR is even lower for older patients, and for those who need help with activities of daily living.

For example, two large meta-analyses, found that survival to hospital discharge decreased especially when the patients were aged over 70., Of course, age can be a ‘marker’ for overall health or functional status, so van de Glind’s 2013 meta-analysis concluded that “older age alone does not seem to be a good criterion for denying patients CPR”.

What about the less good outcomes? There are some very bad scenarios after CPR for people with chronic diseases.

I’ve already shared one of these, with Debbie’s story.  Michael Stone has described another — when paramedics make decisions about individuals they have never previously even spoke to. These stories are not actually the worst case scenario, in my view. I think surviving with one’s heart beating and significant hypoxic brain damage would be even worse.

Other people may, of course, think differently — but I think that everyone making a choice for themselves should surely know of these potential scenarios.

I also think that patients and their families might want to consider another sort of scenario altogether…

When my own father died (of cancer), no-one attempted CPR. Instead, I kissed him, told him I loved him and laid down beside him.

More on more CPR

I already shared a fun, high quality video and great video game, promoting more CPR.

If you want to be more serious, the British Heart Foundation has some new CPR training videos from their Call Push Rescue programme.

Here’s the main (23 minute) video:

And here’s the 3.5 minute video on CPR for children:

The British Heart Foundation know how important more CPR is, and are offering free CPR kits to secondary schools. People in a local community can either purchase a kit or see if there is a local Heartstart scheme nearby.

Heartstart courses take around two hours. They run in the evenings and at weekends. As well as more CPR, trainees can also learn other life saving skills including what to do if someone is choking; bleeding seriously; the recovery position and the signs and the symptoms of a heart attack.

There’s a great British Heart Foundation video ‘Watch your own heart attack’ here:

And dont miss trying the live action movie game Lifesaver. Practising with this means you’ll be better able to help if you ever witness a cardiac arrest in real life. Try it out here (you’ll need to have Flashplayer). 

It takes a few moments for the game to load up: please wait while the circle whizzes round to reach 100. Then you have to Click that you have read and accepted the terms of the Lifesaver website. You don’t have to put your details in unless you want to, but you must press ‘Enter’. Then look down to click on ‘Menu’. Choose ‘Start Now’ for ‘Jake’.

This game is very like real life.

Unlike in real life, though, you can always try againEspecially if you’re as old as me and don’t immediately understand all the fine details of video gaming!

 

What’s are my chances doc? Scenario planning looks better than percentages.

scenario planning

When there’s bad medical news, many people ask: ‘What are my chances, doc?’ But often we develop blind spots for poor outcomes. Margaret Schwarze in the New England Journal of Medicine suggests scenario planning as a great way forward for this.

Dr Schwarze describes a very active 87 year priest, Father Andrew, who goes out for one if his usual drives. But wakes up in the Intensive Care Unit with a tube down his throat, and more tubes in his chest. He has multiple broken ribs and — even worse news — they’ve found cancer spreading through his chest.

The doctor looking after Father Andrew knows that, with his age, this man’s chances of dying just from his many broken ribs are 90%.

Father Andrew’s first question was when he was going to be able to drive again.

This is where doctors often part company from patients and their families.

Sometimes this is because of poor understanding of numbers by patients. The most extreme example of this that I know of was a woman who was counselled that she had a 1 in 2 chance of any children having a rare and always-fatal genetic condition. She wasn’t worried by this — explaining to the doctor (it wasn’t me) that it was just like the lottery, you either won or lost. And she’d never won anything on the lottery, despite doing it for years. So she thought it was all going to be just fine. The doctor realised this lady needed a better explanation

It’s not only patients who don’t always quite understand probabilities. My own work has underlined how many doctors don’t know actual CPR survival rates.

Father Andrew thought he had a 10% chance of getting back to normal. “He’s a fighter”, his sister told the doctors. But all the fighting in the world wasn’t going to get Andrew back to normal.

Instead of percentages,  another approach would be to use scenario planning to think in terms of the possible outcomes. Thinking like this can “help patients look beyond isolated risks to imagine a new potential reality”.

The best case scenario for Father Andrew would mean that he might leave the hospital. Before then, he “would need ventilator support for many days. He would have pain and be unable to talk to his family. He might gain enough strength to be extubated, but given his age and pulmonary function, he would never regain the independence he has enjoyed.” After his discharge, of course, his cancer would continue to grow. With it affecting his breathing, he would “need substantial nursing care; he would never drive again, and he would die.”

The most likely case, was that “he would improve somewhat, but would ultimately struggle to breathe on his own and would die within days.”

The worst case scenario includes lots of fruitless interventions, more pain, less dignity and no communication.

Father Andrew chose to be extubated and talk to his family. Communication with others was, after all, his life’s work. He “died later that day, surrounded by family.”

I think the scenario planning approach could really help in discussions about CPR and DNACPR orders.

Learn CPR from YouTube

Did you know that, in the UK, only 8% of the people who are resuscitated outside a hospital survive to go home? If we all learnt CPR from YouTube, survival rates would improve.

YOU could at least DOUBLE  the person’s chances of survival if you follow the simple instructions here. Outside hospital, most cardiac arrests happen at home, so it is likely to be a member of your family or a friend that you help.

When someone has a cardiac arrest, there’s no time to wait.

Someone has to do something straight away.

Outside a hospital that means whoever gets there first. Whether or not they – that’s YOU, actually! – have had any training with the necessary CPR.

CPR is nothing like it is on the TV. But it’s not as hard as it looks. Even if you’ve not been to a formal training session, you can learn CPR from YouTube. Vinnie Jones has already made a video with a ‘CPR lesson you’ll never forget’ . But the CPR on YouTube video below is even better. Mini Vinnie demonstrates that hands-only CPR is – literally – childsplay:

CPR is all about Call, Push, Rescue:

Call 999 for help.

Push hard and fast on the centre of the chest 30 times.

Give two Rescue breaths, if you are able and willing. It’s still worthwhile to do hands only CPR. So if you don’t want to, just don’t do the Rescue breaths.

And keep going.

Remember, you’ll at least DOUBLE the person’s chances of survival if you keep going with CPR until the ambulance arrives.

In England, we only do this so-called “bystander CPR” for around 40% of out-of-hospital cardiac arrests. In Norway, bystanders do CPR nearly twice as often, and their survival rates are MUCH better than in the UK.

We – you and me – could do much better!

As well as calling 999, the other thing to Call for, if you’re in a public place, is a defibrillator. Some hearts are what is described as ‘shockable’. In these cases, then for every MINUTE defibrillation is delayed, the chances of survival fall by around 10%.

So don’t wait for the Ambulance to get there. If you’re in a station or a shopping centre, get someone to ask for their defibrillator whilst you’re doing CPR.

Here’s what to look for in the UK:

This is what defibrillators look like in places in the UK. Image: Mirror newspaper

Most defibrillators ‘talk’ to you to tell you what to do when you open them up. If not, there are always easy instructions inside all defibrillator boxes.

To remind you exactly what to do for hands-only CPR, and to check that you are pushing hard enough and fast enough, you can get the free British Heart Foundation PocketCPR app here.

But if you really want to try doing CPR, the nearest you’re going to get to real life without it actually happening is the crisis simulator Lifesaver.

Practicing what to do in this live action movie game means you’ll be better able to help if you ever witness a cardiac arrest in real life. Try it out here (you’ll need to have Flashplayer). 

It takes a few moments for the game to load up: please wait while the circle whizzes round to reach 100. Then you have to Click that you have read and accepted the terms of the Lifesaver website. You don’t have to put your details in unless you want to, but you must press ‘Enter’. Then look down to click on ‘Menu’. Choose ‘Start Now’ for ‘Jake’.

This game is very like real life.

Pay attention! You’re about to try to restart a heart!

Although this video game is very realistic then, unlike in real life, you can always try again. Especially if you’re as old as me and don’t immediately understand all the fine details of video gaming!

Please let me know how it went!

I’m at caroline.mawer@gmail.com

Bad news? Focus on the person

Heres an example of someone who knows how to focus on the person. Social worker with a SAGE client. Image from bwhheartandscience

If we focus on the person, rather than their diagnosis or any specific intervention, this can turn the idea of ‘bad news conversations’ (almost!) upside down.

When so many doctors find talking about bad news so difficult, just saying that we need to be more open doesn’t really help. Especially when many patients and their families simply collude in avoiding talking about bad news.

There’s a big worry that being explicit ‘removes hope’ and so just upsets patient and their families.

So Ariadne Labs asked “Why don’t these [bad news] conversations happen?” and “What can we do to make sure they do?” They identified the things that get in the way. Based on this, they created a systematic, multistep intervention, called SAGE. This even includes practice for the doctors with trained actors standing in as patients.

Usually doctors ask about treatment options: Do you want this?  Or do you want that? Ariadne’s very different approach has a strong focus on the person. It starts with asking patients if it’s OK to ask. This is like the ‘I’ for ‘invitation’ in the SPIKES model I already discussed.

It underlines that while we can hope for the best, we should prepare for the worst.

And is also clear that (because they do all this early!) no decisions are necessary today. The specific questions start with asking and listening. Always, the key is to focus on the person. They ask:

What is your understanding now of where you are with your illness?

Of course, anyone using this method should look through the whole thing. But I wanted to pick out some great questions that follow on from here (even if they are perhaps in American med-speak). With each of them there is a focus on the person:

  • If your health situation worsens, what are your most important goals?

  • What are your biggest fears and worries about the future with your health?

  • What abilities are so critical to your life that you can’t imagine living without them?

  • If you become sicker, how much are you willing to go through for the possibility of gaining more time?

Reaching an understanding about these sorts of things helps doctors to properly understand what patients might want in the uncertain, ever-shifting times ahead.

SAGE launched their program in primary care, because they “guessed that doctors’ long-term and trusting relationships with their patients would ease these conversations.” Following the training, almost three quarters of more than 200 primary care patients identified with serious and complex illness had useful and detailed conversations.

But Ariadne discovered early on that primary care missed out on a lot of people. A review of more than 350 deaths found that half of the most complex of these had been “cycling between the hospital, nursing homes and other care facilities” rather than being seen in primary care. So they decided to look at hospital conversations as well. They recognised that they needed to design a program specifically for inpatient clinicians – the doctors and nurses who manage patients once they arrive at the hospital.

The challenge was that “traditionally, end-of-life conversations within hospitals focus on medical procedures rather than more nuanced discussions about the patients’ goals and wishes.”

Hospital staff needed help “not only in identifying patients with whom they should have these challenging conversations, but in the specifics of the conversation itself. They also needed support to ensure rapid follow up with patients, families and primary care teams after the patient left the hospital.” The SAGE Programme arranged for social workers to share the information from the hospital discussions with primary and community care staff. And to act as a steady contact after discharge. This all allowed the clinicians to focus on the person.

A pilot study found that 100% of patient in the SAGE programme had detailed and clearly documented conversations about goals and priorities compared with just 40% of patients in the usual care group. Other positive data has been presented at scientific conferences.

Perhaps most importantly “having the conversation lowered patients’ anxiety, and patients reported that their hopefulness remained steady, while their sense of control over medical decisions increased.”

The fuller report of this work includes a story about “a patient we’ll call Evelyn”. This elegant 81-year-old lady had advanced dementia, so had been in hospital four times in eight months. “Before Evelyn started with the SAGE program, her devoted daughter had advocated for any treatment that might keep her mother alive longer. After careful discussions between Evelyn’s clinicians and the family that focused on Evelyn’s personality, sources of enjoyment, and known life priorities, as well as the trajectory of her illness, the family shifted the goals of her care from quantity of life to quality. Evelyn was content and comfortable in her final months, spending time with family, listening to music, and eating foods she enjoyed, rather than returning to the unfamiliar and restrictive environment of the hospital. Her daughter later reflected on the pivotal role of these discussions in helping to plan better for what lay ahead – in order to honour the things that were most important to Evelyn in her final months.”

Death doulas in the USA

Emily Dickinson poem: Because I could not stop for Death, He kindly stopped for me. Image from dead maidens.com

Death doulas help people who are facing the end of life alone. Even for people who have family, often no-one wants to talk about death — and that can be very isolating and lonely.

There are increasing numbers of death doulas in the UK, but I thought I would share some of a recent article about death doulas in the USA.

The word “Doula” has often been used to describe those volunteers who offer support and comfort to people during pregnancy. More recently, death doulas — women and men — help those who are dying. The word derives from the Greek for a female servant

Death doulas are volunteers who aren’t medically trained ― they’re there to offer support, to listen, and to develop a relationship with the person they’ve been matched with that goes beyond his or her illness. It’s not so much about being there at the moment of death — though of course that can happen. Instead, it’s more about being present during the final stage of a person’s life and getting to know them on a deeper level than just their illness.

Anybody who has a calling and an open heart can do the work of a death doula.

Unlike most medical professionals, and some birth doulas, there is no national or international body that oversees certification requirements or scope of practice for death doulas.

In New York, The Doula Program to Accompany and Comfort, has about 60 active volunteers, working with people of any age who have been told they are going to die from their illness and who are facing the end of their life alone.

Doulas from the (American) International End of Life Doula Association (INELDA), are also trained to help the family of the dying person plan for and process their death. Since now we’re not used to seeing death, dying can lead to a lot of anxiety. INELDA doulas can help the family put together memory books, videos, audio recordings, and collages ― things to pass down after a person’s death.

Increasing numbers of people are applying for doula training both in the USA and in the UK. Janie Rakow, president of INELDA explained that, although it may seem curious that so many people want to be a companion for those individuals who are dying, it’s not at all morbid. “People always ask how we can do this work. They think it’s depressing,” she said,  “But when you do this work it is the opposite of depressing. It’s profound work.

Deanna Cochran, a hospice nurse and the founder of Quality of Life Care, which trains and certifies death doulas, explains that she isn’t aiming to create another health care profession but to empower individuals everywhere to emotionally support their loved ones as they die.

“I want to get the message out that you can do this too. You can learn to take care of your own dying and dead,” she said.

Cochran encourages death doulas to be advocates for their clients, helping them navigate the medical system and ask their doctors what options might available to them, including palliative care.

“We [all] need to accept that we’re not going to live forever,” Cochran said. “We’re going to die. We just don’t know when, and we don’t know how. Empowerment comes in planning for it and letting your family know what you want.”

But INELDA’s vice president, Jeri Glatter says there’s another way to look at it.

“I see death as an opportunity for change and growth,” he said. “You see awakenings, forgiveness; you see new bonds made and old wounds healed, which I believe send the dying on their final transition peacefully and bring new opportunities for the people who remain.”

Death plans and the law

Cartoon with a bedside family telling a doctor they havent discussed resuscitation preferences

The idea of ‘death plans’ may seem less commonplace than the birth plans produced in so many pregnancies. But at least some aspects of death plans can be legally binding. As always with anything legal, the devil in the detail. And the wording can feel confusing.

I’m shortly going to meet a midwife and I know we will talk about birth plans. Here, then, is a version of something I wrote for Pulse.

Lawyers and doctors don’t talk about death plans – but ‘advance directives’. Advance directives include Advance Statements and Advance Decisions.

Advance Statements are not legally binding, but should always be considered by medical staff

In contrast, Advance Decisions to refuse treatment are legally binding and MUST be followed by medical staff, IF they are valid and applicable. As discussed below, that’s a big IF.

If an Advance Decision refers to potentially life-sustaining treatment, it must must be witnessed, signed and dated.

The details are the big thing here:

  • If the patient didn’t fully understand the consequences of their decision, the clinicians caring for them might conclude the Advance Decision is not valid. There’s lots of room for condescension here!
  • If the patient did or said anything that contradicts the Advance Decision, it might not be considered valid. For example, a patient might have said they wanted comfort measures, rather than trying for a cure, but then accepted antibiotics for a urine infection. This would probably help with symptoms (comfort), but is it really aiming at a cure?
  • If the patient did not anticipate this exact clinical situation within this illness trajectory (how fast or slow the person is getting sick / well) the clinicians might decide the Advance Decision is not applicable. This is another get-out situation: who can anticipate everything?

Advance Decisions are probably most useful for refusing specific interventions like CPR or ventilation and so-called ‘life support’ machines. (I’ve written ‘so-called’ here, as sometimes – just sometimes – all the machines don’t actually support life, but just drag out deaths.)

Even if all the details above are OK, it’s important that Advance Decisions are kept up to date. It’s a good idea to review, re-sign and re-date them whenever clinical and other circumstances change, or every two years if everything is stable. This is so that the doctors treating the patient can be confident that they are following their current wishes.

If you want to set up an Advance Decision, the free My Decisions website https://mydecisions.org.uk will take you through some questions and scenarios to get you thinking about what’s important to you. At the end it will generate a legal document.

A lasting power of attorney (LPA) can be set up by an individual (the ‘donor’) to give an agreed Attorney the legal power to make decisions on behalf of that ‘donor’.

LPA can apply to property and financial affairs; or to health and welfare; or both, if both are set up:

  • In an LPA for health and welfare, a person must specify whether their attorney can make decisions about life-sustaining treatment on their behalf.
  • LPA for health and welfare only come into effect when the patient no longer has capacity to make their own decisions, while financial LPA can start whenever the ‘donor’ chooses.
  • For LPA, there needs to have been full discussion between a patient and their attorney, to truly know what the patient would want.

More details about LPA, including about the £110 fee (unless the donor is on certain benefits or earns less than £12000 a year) is at https://www.gov.uk/power-of-attorney/

Advance Statements are general statements about anything that is important to someone in relation to their future treatment and wellbeing.

They are sometimes called a Statement of Wishes, and are really more Life Plans than Death Plans. They can be used to detail any values or beliefs that inform your decisions or to express preferences for care (for example, hospital or home, male or female carers, specific religious preferences, shower or bath, Aunt Jemima or no Aunt Jemima .. down to Marmite or no Marmite). They are used only when you cant speak for yourself. If you have what’s called ‘capacity’ — the ability to make and communicate decisions — your expressed wishes come first.

None of these instruments gives anyone the right to demand any specific treatments.

Any individual with capacity can set up any or all of these methods of advance care planning. You can have an Advance Directive to refuse something, and an Advance Statement to say you would (or wouldn’t) like something else.

With all these imponderables, for all these ‘instruments’, the discussions may often be even more important than any individual document.

That’s especially true if the process and results are written down. Even if they are initially difficult, explicit discussions mean that families and loved ones know what a patient wants. This is often not what others think, even with close and loving relationships. For example, I have LPA for my mum, and although she said she was sure I knew her well, when I insisted on a discussion, I was really surprised by some of the things she said she didn’t want! These discussions can be much more about Life Plans than Death Plans.

People’s circumstances vary. However, the Alzheimers Society suggest that individuals and families consider LPA after a dementia diagnosis, and to do sooner whilst the person has capacity. This is something GPs can also encourage.

Want help? Online or downloadable Advance Decision and also Advance Statement forms and guidance are here, and there is a freephone information line at 0800 999 2434.

 

Edencare appeal: Ramadan 2017: Friday 2 Jun 6pm-4am: Sky 814

 

I’m proud to be a volunteer for Edencare. This is a BME-led volunteer group helping needy people and families who are nearing the end of life. It works with the community, rather than providing services ‘for’ or ‘to’ needy people.

The Edencare appeal for Ramadan 2017 will be live on Sky 814 on Friday 2 June from 6pm til 4am. If you want to speak to us in the studio, the number is 0208 523 4111. I’m on air from 6 to 7pm – but other members of the Edencare Family will be there all through the night.

If (surely it’s when!) you want to donate, the number is 0208 523 1666

Here’s the 2017 Ramadan appeal video:

The focus this year is the Muslim Burial Fund (MBF). This community led service helps needy Muslims have culturally appropriate funerals. A poster about MBF was selected for the 2016 Hospice UK conference: read more here. See some videos about the Muslim Burial Fund here.

Please donate whatever you can!

Are you immune to death?

Extreme measures: Book by Jessica Zitter: contains exploration of how she thought of herself as immune to death

Jessica Nutik Zitter is an ICU doctor who’s “around death every day” but thinks she’s immune to death. I wanted to share and discuss part of her renowned book: Extreme Measures. This describes how, at a mindfulness seminar, she realised that she had never thought in any real way about her own death. Dr Levy, running the seminar, asked:

“How can we expect to help our patients plan for their deaths if we haven’t planned for ours?”

This is a really important point that Dr Zitter makes, I think. I’m no longer working as a doctor, so I don’t ‘have’ to do this for myself right now. But I’ve got two life-limiting diagnoses, even though I’m not acutely unwell today. I’m hugely in favour of Advance Care Planning. So when ‘should’ I or other ‘ordinary people’ do something like the exercise Dr Zitter describes, as summarised below?

The seminar Dr Zitter attended included an exercise for the participants to picture their own deaths:

•Who would be there?

•What would they be saying?

•Who would be crying?

•What would you have not gotten done?

•For what would you be grateful?

•Who would be holding your hand?

•Who would be standing at the foot of the bed? In the hall?

Dr Zitter realised that she had never allowed herself to consider her own death: “It was as if I had willed myself immune to death.” 

Dr Zitter is apparently Jewish, which gives her a specific opportunity to consider her own death every year, in the Rosh Hashanah (Jewish New Year) service. This includes the prayer Unetaneh Tokef (Let Us Cede Power), which “attests to our lack of control over our mortality, willing us to repent and mend our ways. Its words are sobering, even grisly”. But as Dr Zitter wrote: “Somehow it never felt real …”

When she let the sadness and the possible uncompleted tasks seep in: “the tears started to fall down my cheeks. One big fat one at first, brimming over and paving a salty track down my dry cheek to come to an embarrassing stop at the corner of my mouth. I wasn’t sure if I should lick it or ignore it.” Dr Zitter “realised I’d been running away from [my own death].”

She “began to think more deeply about how I would help all of those walking that path before me. How could I possibly help my patients accept their deaths if I hadn’t stopped to accept mine?”

As she said: “I am, of course, no different from my patients, no better or worse. Often no wiser. And no more entitled to live another day. I reminded myself that death comes for us all, and sooner or later, I will be the one in that bed, on the other end of the stethoscope. I considered what type of doctor I would want to have with me as I made these final decisions, as I breathed my final breaths.”

Of course, those of us who are not doctors, are no different from other ‘patients’ either.

Just like Dr Zitter, I seem to think I’m immune to death!

Dr Zitter struggled especially with her tears: “my mindfulness exercise ended because I needed all of my focus to suppress my impending sobbing. I had been saved from the mortification of being an ICU physician sobbing uncontrollably as I pondered my own death. And right in front of the nurses, physical therapists, and respiratory therapists that I feel I must stand before confidently, never wavering in my resolve that I can make it right for my patient.”

‘Ordinary’ people like me don’t have this particular status problem. But I felt very concerned about why this was a problem for Dr Zitter. Being confident is great. But “never wavering in [her] resolve that [she] can make it right for my [sic!] patient” … ?!

Dr Zitter is an ICU physician. Surely she can’t make it right for all of the ICU patients she and her colleagues deal with?

Or is that another ‘immunity’ that Dr Zitter might want to think about?

BJ Miller on life and death

bj miller sitting on bed in zen hospice

BJ Miller was the keynote speaker at the RSM conference on the future of palliative care. As a student, he climbed onto a parked train — and the subsequent burns removed both of his legs and an arm. Hear from him directly in his TED talk here.

For months afterwards, he was an inpatient in a no-windows, super-sterile burns unit. All the staff and visitors had to be gowned-up at all times, so it was a very alien, dehumanising experience. BJ had the sweet goal of being closer to nature, and a nurse smuggled in a snowball for him.

Melting in BJ’s hand, this was an amazing sensory /aesthetic experience. It was also hugely symbolic: he saw that it was OK for something to melt and transform — at a time when his own life was melting and transforming in just as dramatic a way.

BJ’s personal encounter with the world of suffering and mortality means he has thought long and hard. Here are some of his ideas — as I understand them. My deep apologies if I haven’t got all of this right!

  • The myth of Western medicine is that all things can be ‘fixed’.

With this idea of omnipotence, the prolongation of life / avoidance of death ends up in direct contradiction to the alleviation of suffering.

The education of clinicians focuses on acute ‘curative’ interventions.

  • In medical school, medical students learn a dichotomy of normality / illness, within a pathologising convention of contrasts.

This is not ‘the truth’ .

  • Variation on the ‘normal’ is itself NORMAL

  • Even though many more people need long-term support, than are ever going to be cured by doctors, the support of people with long-term conditions is seen as much less important or interesting than ‘cures’.
  • All this means that western healthcare systems are much more about ‘doing something’ to someone, than ‘being with’ a person or their family.

In this way, western medicine acts as a poor substitute for a bigger reality.

  • This is brought into especially sharp focus for people with a disability.

The disability population / disability activists, understandably, have a deep distrust of the pathologising convention of a ‘split’ between normality / illness.

They also feel often repugnance about the ‘special’ (NOT so special!) treatment afforded to people with disabilities.

BJ questioned — in a positive way — what it is to be human. He discussed how an individual may not be able to literally overcome their disability, but will have to ‘lean into’ their daily reality.

BJ then raised questions / made suggestions about palliative care.

  • Traditionally, palliative care is about helping people live until they die, not fearing death, but welcoming inevitable transformations.

The value-laden dichotomy between trying to ‘fix’ individuals / and alleviating their suffering underlies many problems, including:

  • the (often difficult) transition for individuals (and families) between curative and palliative care;
  • how medical professionals view palliative care clinicians (poorly — as flaky non-scientists);
  • and, maybe, how some palliative care professionals are taking the specialty forward (strengthening the ‘evidence base’ so they are no longer seen as flaky non-scientists).

Ideally, moving beyond a dichotomy between ‘curing’ and ‘caring’, would have ALL medicine smelling and feeling like the best bits of palliative care.

But what is the way to move forward? What is the switch?

It’s not going to be sorted by anything in current medical schools, or current postgraduate education.

We need to move from a disease orientation towards a human orientation.

After all, humans are not incidental to medicine.

This means:

  • More love;
  • More awe and wonder. This is usually absent in clinical encounters — but is transformative. And it is all around us;
  • More on being comfortable with not knowing what to do.

This is not to throw away or ignore science or medicine.

  • Science is necessary, but not the slightest bit sufficient.

Evidence-based symptom management can act well as a first step. After that, individuals and their families can move on to:

  • daring to live life;
  • revealing themselves;
  • recognising fear, pain, and hope.

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