The best videos on palliative care?

When I spoke at St Josephs hospice on home deaths, the lovely audience wanted specific links to what I think are the best videos on palliative care. Here they are below.

Before that though, I wanted to share some more local data. I spoke about the shocking effects on deprivation in Scotland, and said it would be similar elsewhere. I’m not happy to be proved right.

This week’s BMA News Review says that, in Tower Hamlets, “adults can expect to have the disease profile of a 75 year old at the age of just 55”.

So, it’s even more important to look at Martin Wilson on ‘realistic palliative care for an ageing population’. This includes shocking data, and shocking conclusions, on how living and dying if you’re in a deprived area is like being on another planet. As well as how death is a feminist issue:

Then, here’s Kieran Sweeney talking about how, amongst other things “… clinicians inadvertently heap small humiliations on patients”. This is, sadly, true. Please talk a moment to think if you have ever done this. Not on purpose, of course! And how you might never do it again.



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.”

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.

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.