Opinion

Rejected by the BMJ: An essay on “How to up-regulate compassion in healthcare”.

There is no such thing as a compassionate healthcare system separate from the compassion of individuals; when each one of us chooses compassion then healthcare will be transformed: we are the system.

“How to up-regulate compassion in healthcare.”

By Dr Robin Youngson, CoFounder, Hearts in Healthcare

The nature of compassion

Nick told the story with tears in his eyes. A General Practitioner in Australia, he spoke of a professional crisis, not knowing how to respond to a patient who shared her utter despair.

His patient said, “I have no hope, no life and I’m planning to end it.”

How are you intending to do that?” asked Nick.

I’m taking a large packet of Panadol. I know that means liver failure. I know it’s a grim way to go.”

If a slow lingering death by liver failure is better than what you are facing now, you must be in some kind of hellhole.

Yeah, I am.”

Nick shared the story in a “Reawakening Purpose” workshop facilitated by Hearts in Healthcare – an international social movement for compassionate, human-centred healthcare [1]. As fellow practitioners listened with rapt attention, Nick told us that nothing in his professional training had prepared him for this moment. His patient had twice before been sectioned under the mental health act. Should he call the police? Did he have the right to prolong her suffering? Would he end up in Coroner’s Court if he failed to act? What was his professional duty?

Reflecting on his story Nick said, “The abyss for me is standing at the edge of mystery where everything I know doesn’t hold any more. And then… what’s next? When everything in my head doesn’t work any more, that’s when my heart begins.”

In this moment of ‘not knowing’ he acted from an impulse of deep compassion. He left his chair and joined his patient in her darkness and despair.

Nick recalls, “I silently sat with her in her hellhole. I breathed, I felt for her, we had a profound union, we hung in there.” They sat in silence for a long time.

His patient began to stir. “You know, you are the first person who hasn’t called the ambulance, hasn’t written a script, and hasn’t pathologised me or given me a label.”

His willingness to witness and experience her deep suffering created a magical moment of healing. The patient, who had felt utterly worthless, was transformed by her doctor’s unconditional acceptance and love. She chose life again.

For this patient, where years of medical treatment had failed, one act of deep compassion catalysed her healing journey. At Hearts in Healthcare we are hearing the same kind of story over and over: the transformative power of deep compassion.

For burnt-out health professionals, sharing stories of compassionate connection is liberating. It powerfully reconnects health workers to their values, ideals, hopes and aspirations. It draws out their skills and strengths in a collective process that radically changes the energy in the room. The moving stories we hear affirm the importance of compassion and give us clues for strategies we can use to rehumanise healthcare.

The investigation of widespread breakdown in patient care at Mid-Staffordshire and the “failure of compassion” described in the Francis Report has elevated this to a political issue. But compassion is much more than an absence of neglect. Compassion has the power to heal.

Each patient is an abundant source of healing and wellbeing

Compassionate caring perceives each patient, not as a burden of unmet need, but as an abundant source of healing, health and wellbeing. Many of us are unaware of the astonishing power of emotional, psychological and spiritual wellbeing to influence long-term health outcomes. The effect size is more powerful than most of the medicines we use.

For example, a long-term study of heart attack survivors showed that optimists had one quarter the mortality rate of pessimists for cardiac causes of death, and one third the mortality rate for all causes [2]. Anxious patients are much more likely to catch an infection: when volunteer medical students were inoculated with a standardized dose of ‘flu virus, the optimistic students had one third the rate of clinical influenza compared with pessimistic students [3]. Lung cancer patients who were offered compassionate palliative care had better quality of life, chose fewer aggressive medical interventions, and lived substantially longer that patients offered only ‘clinical’ care [4].

A meta-analysis of research studies into “positive health” records an effect size at least as big as the difference between smokers and non-smokers [5].

And these effects are not just determined by innate personality characteristics – physicians can greatly influence outcomes through the quality of their relationship with patients. Diabetic patients with high-empathy primary care doctors (as rated by the patients) had 42% fewer hospital admissions for metabolic crisis, compared with patients belonging to low-empathy doctors [6]. Empathy and compassion matter.

Moreover, we are learning that patient risk-factors – such as genetic inheritance and lifestyle – are highly modifiable. Dean Ornish and colleagues have show in randomized controlled trials that interventions including good diet, moderate exercise, social support, and meditation or yoga, can reverse chronic disease and halt the progression of cancer. One trial showed angiographic proof of reversal of coronary stenosis [7]; another trial of patients with prostate cancer showed 150 cancer-promoting genes were down-regulated and 350 wellness promoting genes were up-regulated [8].

All these interventions are in the power of patients. We need to comprehend our patients as possessing an abundant source of healing, wellbeing and resilience. Thus our role as physicians changes from authoritarian providers of medicalised care to enablers of the healing response. That’s the art of compassionate medicine.

The commercialisation of genetic screening technologies, and celebrity cases such as Angela Jolie broadcasting her decision to undergo prophylactic mastectomy, fuels the myth that our fate is preprogrammed. But the emerging science of epigenetics paints a dramatically dynamic picture of our biology changing by the hour.

Gene expression is highly regulated and the ‘penetrance’ of genetic risk factors has changed dramatically over time. Had Angela Jolie lived in the 1920’s, she might have made a very different decision. The high lifetime risk of breast cancer in patients with the BRACA2 mutation is a modern phenomenon, four times higher in 2001 than in 1920 [9]. Many lifestyle factors are influencing this change.

One day of intensive mindfulness meditation leads to rapid alterations in gene expression. Richard J. Davidson, founder of the Center for Investigating Healthy Minds, showed a range of genetic and molecular differences, including altered levels of gene-regulating machinery and reduced levels of pro-inflammatory genes [10].

Our patients’ biology is being shaped day by day by their thoughts, feelings, emotions and beliefs.

When physicians develop the capacity to perceive and to validate the innate worth and human capacity of their patients, even in the midst of crisis, a space of healing opens up. Nothing is more affirming for patients than the willingness of health professionals to sit with them in suffering, to witness without anxiety, and to believe in their potential. This is the true nature of compassion: the power to change the life story and biology of our patients.

Unlike the notion of clinical detachment taught in medical school, modern neuroscience says that people in close relationship – such as patient and doctor– are powerfully connected. The feelings and intentions of the doctor are transmitted to the patient’s nervous system through mirror neurons, influencing beliefs, feelings, emotions, neuroendocrine function, immune function, protein synthesis and probably gene expression. A compassionate connection is healing but the coldly detached clinician may wound the patient. While patients soon forget what we have told them, the emotional experiences of care last a lifetime.

Life throws all of us many challenges: pain is mandatory. But suffering is an option. When health professionals develop a capacity to ease their own suffering through mindfulness, appreciation, gratitude, self-compassion, and love, they have a wonderful gift to share with their patients.

Empathy is not enough. Empathetic caregivers feel the pain and suffering of their patients but may feel inadequate or even incompetent when medical science has little to offer. Unless the caregiver has the capacity to tolerate that internal distress, and sit with feelings of ‘not knowing’, the anxiety elicits defensive routines and detachment from the patient’s suffering.

So the capacity for compassionate caring has to be developed; it’s an inner journey from the head to the heart, perhaps the longest journey each one of us will ever undertake.

Health professionals devote a lifetime of services to reducing the suffering caused by disease. But the science of epigenetics, and the powerful relationship between emotional/psychological status and physical disease, gives us the insight that mental suffering is itself a cause of physical diseases. The modern epidemics of ‘lifestyle disease’, such as obesity, diabetes, hypertension, vascular disease, depression and cancer all have their roots in deep dissatisfaction and unhappiness.

But patients who can develop a deep sense of self-worth, equanimity, mindfulness and positivity have the emotional and mental wellbeing to choose healthy lifestyles, eat a good diet, exercise, invest in social support, and manage their suffering. Developing this capacity in every patient should be the ultimate aim of medicine.

Thus the role of the physician changes from doing – as expert dispenser of treatments – to one of being. The quality of presence matters. The enlightened physician becomes their patient’s personal coach, supporter and facilitator of healing, wellbeing and resilience. Our narrow focus on physical disease and bio-medicine is unbalanced. We need to pay much more attention to emotional, psychological and spiritual wellbeing and the huge importance of healing relationships.

How do we bring about this change?

There is no such thing as a compassionate healthcare system separate from the compassion of individuals. When each one of us chooses compassion then healthcare will be transformed; we are the system.

We cannot regulate compassion, nor set targets, nor incentivise caring. And a bullying management culture elicits a threat response in employees, inhibiting the affilliative centres that motivate nurturing, caring and compassion.

Health leaders could do much to create the conditions in which the natural eco-system of compassionate healthcare could flourish: eliminate bullying, love and cherish their employees, ensure adequate staffing levels, and reward acts of caring as much as clinical tasks.

But none of us has to wait for our leaders to ‘get’ compassion. After all, the greatest living embodiment of compassion, His Holiness the Dalai Lama, has suffered persecution and exile. While deploring the acts of the aggressors, he has only compassion for their suffering.

Every one of us has the power to rehumanise the system around us. It’s not a matter of plans and strategies; it’s choosing a personal way of being. Simple daily practices of kindness, caring, appreciation and gratitude can lift us out of burnout and allow us to reconnect to the heart of our practice. Compassion is contagious. It can’t be taught but it can be caught!

For most of my career, I have tried to improve healthcare through formal authority systems: executive teams, medical colleges, universities, national committees and even international bodies, such as the World Health Organization. But love and compassion don’t fit in committee agendas. For many years I felt like a lone voice in the wilderness, proclaiming compassion and love as a fundamental elements of medical practice.

We have found better strategies. I’ve become a fan of Margaret Wheatley and her theories of whole-system change [11]. She identifies four steps:

1) Isolated pioneers struggle alone;
2) They begin to connect in networks;
3) Where the ground is fertile, communities of practice begin to emerge;
4) Communities of practice link together to create a force-field that tips the whole system to a new mode of behavior.

What Wheatley describes is a social movement. Not only is it the best way to create rapid whole-system change, says Wheatley, it’s the only way.

According to ‘The Tipping Point’ – the bestselling book by Malcolm Gladwell – a surprisingly small number of converts are needed to flip the system, only about fifteen percent of the population.

Hearts in Healthcare is finding success with this strategy. We have deliberately set out to create an international social movement within healthcare. We offer inspiration, help, support, resources, and a compassionate online community of people who share a deep desire for human-centred healthcare.

We launched the movement in 2012 with a book, “TIME TO CARE – How to love your patients and your job.” Those wishing to learn more about the evidence underlying the subject of this essay will find the book extensively referenced [12].

On our website (heartsinhealthcare.com) individuals can find the inspiration, guidance and resources to support their self-directed journey towards wellbeing, resilience and deepening practice. We invite all to become part of the movement and get involved in our campaigns. Our work has taken us to a dozen countries already.

Healthcare is only slowly awakening to the power of social movements and emergent change. Since we began our work, the NHS Change Day (https://changeday.nhs.uk/) has seized upon the same strategy, eliciting more than 400,000 pledges for positive change in frontline healthcare.

We’re hopeful that inspiring millions of individual health professionals, one at a time, to reconnect to the heart of their practice will be the movement that restores compassion and caring as the very foundation of healthcare. Nobody needs permission to choose this way of being.


Author’s note: This article was commissioned by a senior editor at the British Medical Journal (BMJ) with instructions to use the ‘essay’ format: “BMJ essays not only need to cover important topics and embed new ideas. They also need to be a convincing and compelling read.”  My article was rejected by the editorial panel saying, “We thought your article was insufficiently clear, not well marshaled or substantiated by evidence, and attempted to cover too much ground. It lacks a coherent thread as it moves from an overlong case story...” (ouch!)

One reviewer complained that I had not reviewed the “side-effects of compassion” and “the negative effects compassion can have on mental health patients“. Another reviewer could not understand that there was any link between patients’ success in life-style change and the empathy and support of the practitioner; and my assertions were inadequately backed up by the quoted evidence. The use of the word “healing” also raised objections, since this can have a “negative connotation“.

The third reviewer recommended publication and commented, “I found this a thoroughly compelling read.  The opening story of Nick in relation to his suicidal patient felt completely authentic, utterly absorbing and, in a remarkable way, connected with what everyone knows but nobody says“.

I leave you to form your own opinions as to the merit of my article. I’d welcome comments and constructive criticisms.


 

References

1. Hearts in Healthcare: https://heartsinhealthcare.com. (viewed 17th March 2014)
2. Giltay, E.J., et al., Dispositional optimism and all-cause and cardiovascular mortality in a prospective cohort of elderly dutch men and women. Archives of general psychiatry, 2004. 61(11): p. 1126-35.
3. Cohen, S., et al., Positive emotional style predicts resistance to illness after experimental exposure to rhinovirus or influenza a virus. Psychosomatic medicine, 2006. 68(6): p. 809-15.
4. Temel, J.S., et al., Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 2010. 363(8): p. 733-42.
5. Veenhoven, R., Healthy happiness: effects of happiness on physical health and the consequences for preventive health care. Journal of Happiness Studies, 2008. 9(3): p. 449-469.
6. Del Canale, S., et al., The relationship between physician empathy and disease complications: an empirical study of primary care physicians and their diabetic patients in Parma, Italy. Academic Medicine : Journal of the Association of American Medical Colleges, 2012. 87(9): p. 1243-9.
7. Ornish, D., Avoiding revascularization with lifestyle changes: The Multicenter Lifestyle Demonstration Project. The American journal of cardiology, 1998. 82(10B): p. 72T-76T.
8. Ornish, D., et al., Changes in prostate gene expression in men undergoing an intensive nutrition and lifestyle intervention. Proceedings of the National Academy of Sciences of the United States of America, 2008. 105(24): p. 8369-74.
9. Tryggvadottir, L., et al., Population-based study of changing breast cancer risk in Icelandic BRCA2 mutation carriers, 1920-2000. Journal of the National Cancer Institute, 2006. 98(2): p. 116-22.
10. Kaliman, P., et al., Rapid changes in histone deacetylases and inflammatory gene expression in expert meditators. Psychoneuroendocrinology, 2014. 40: p. 96-107.
11. Wheatley, M. and D. Frieze, Using Emergence to Take Social Innovation to Scale, 2008, Berkana Institute: http://margaretwheatley.com/articles/using-emergence.pdf. (viewed 17th March 2014)
12. Youngson, R., Time to Care: How to love your patients and your job, 2012: Rebelheart Publishers, Raglan, New Zealand.

 

 

13 Responses to “Rejected by the BMJ: An essay on “How to up-regulate compassion in healthcare”.”

  1. Erin says:

    Thank you for writing this and gathering the “evidence.” Possibly the same text could be more “dumbed down” (sorry to say that) and reorganized to meet the needs of the reviewer that saw it as “covering too much ground,” but I think it is a matter of people’s training not allowing them to see the forest for the trees. Feels sad to even read “side-effects of compassion” and “the negative effects compassion can have on mental health patients”. The existing model is to distance oneself because to become emotionally close is a danger for a patient, but you are pointing out the doctor-patient relationship is ALREADY emotionally close, regardless of whether one is transmitting compassion or something else. I am glad you published this here nonetheless, and there may indeed be other audiences who would embrace the article.

  2. Julie Barnes says:

    A fabulous essay which inspires hope and action. BMJ may not be ready for this but the world is definitely calling for it and by sharing it we will reach an even larger audience.
    Thank you Robin
    X

  3. Sue Macdonald says:

    It is a shame that this was rejected (possibly too soon!), but it would have been good for students and practitioners to read and think about.
    I have read this three times now, and each time think how important it is to get professionals in touch with not just the assessment and treatments for the patent, but the connection required within compassion. Trouble is I think that this conflicts much of the traditional training.

  4. Claire Chambers says:

    I really enjoyed this Robin and it is full of all the important points about compassion which you are so well known for. You also give really important pointers for how to take this forward in our everyday lives. Of course I think it is absolutely essential for everyone to read, as would everyone who is a member of Hearts in Healthcare. How do we change the hearts and minds of others who do not think like us though? I think that a lot of people who work in health care are tied up with pure evidence base and research, and this article is very much about that. However, it does involve a change of heart and mindset in order to be able to take it on board. That is a step to far for many at the moment. I am enjoying Pamela Wible’s book “Pet goats and Pap smears which I saw and read about on here. She is someone else who is going on the road less traveled and some of the views expressed by other medics have been critical, but she is changing hearts and minds too, and there are so many wonderful comments about her work.

    You know how much you are making such a difference in today’s global health care environment and it is wonderful to see. You can’t convince everyone all at once but think of all the progress you have made. We just all need to work harder with those who can not see the importance of this crucial work. The Journal of Holistic Health Care might be less main stream but I find the articles in there really excellent. I know that you would be preaching to the converted but you would be amongst like minded people and appreciated for the excellent innovator you are. Don’t let the unbelievers get you down! I thought it was a thought provoking and well researched article, it is difficult to see how others could not see that so clearly.

  5. I must just add – the Bristol Cancer Help Centre here in UK, which advocated complimentary therapies and vegan diet etc, was damned as ‘anti-establishment’, perhaps seen as a threat, in 1990s – major research organisation published research saying more people who went there died from cancer than those who didn’t. Of course, many who went there were terminal ill and went as last resort. One of those who spent a week there (as I did!) became a researcher and did her own research – was able to demonstrate that the original research was greatly flawed and restore the Centre’s good name. They changed it, however, but Penny Brohn Cancer Care continued helping terminally ill cancer patients to enjoy an enhanced quality of life and provided compassion by the boatload for those of us who survived but had missed out on compassion in our NHS care.

    • Robin says:

      I trained in Bristol in the 1980’s and 1990’s and at the time was extremely skeptical about the treatments offered by the Bristol Cancer Help Centre! I guess with time and experience you become a little more humble as a doctor and realise that mainstream medicine has only a very limited view of what is ‘evidence’ and ‘truth’.

  6. Dear Robin, I just wrote you a long note here, but as I reached the end it all disappeared! Here’s the short version:
    Am hugely sorry to hear about this rejection (especially since I informed the ‘senior bmj ed about you and your org). Can only think your reference to compassion, support, lifestyle changes etc leading to cancer non progression and physical changes was too much for them – seemingly supporting the Alternative Therapies line, =anathema. They would need huge and v robust RCTs before acceptance of any such physical influences. But you, and all of us here, know how much compassion is needed in H/C and what a difference it can/could make. Health activism has been 2 steps forwards and 1 back for me for 25 years now – but it’s surprising how far snails can travel!
    My very best wishes

  7. Dear Robin,
    This is exactly what you have to expect from the Establishment because the proportion of the enlightened is still regrettably small. Reactionary attitudes force inappropriate, defective and unjust criticisms.
    Don’t lose heart. If it were otherwise Hearts in Healthcare would be unnecessary.

    Love.
    Dad.

  8. Maxine Craig says:

    My compassionate response to both you and your reviewers. Your ‘essay’ is outstanding., important and it touched me after an event we ran yesterday in the NHS. Your reviewers are doing their work to fit their mind set and positivistic criteria, that is the world in which they reside. They are good people doing good work in their space. I was accused this week of ‘being involved in the compassion malarky’. My response YES !

    • Robin says:

      Thanks Maxine, I appreciate your comments. As my beloved points out, this blog was posted when I was in the grip of emotion and if I’d taken more time to think it through, I might have posted my comments about reviewers in a more compassionate light, in better accordance with our values.

      Our frustration is with the narrow bio-medical viewpoint of the medical establishment and the reluctance to acknowledge other kinds of truths beyond scientific reductionism – not the attitude of individual reviewers. I’m happy at least that the essay is being widely read and is prompting healthy debate and compassionate contributions like yours.

      • Irene Renzenbrink says:

        Pearls before swine, Robin. If that sounds too harsh, I would just say that you are ahead of your time. All the great pioneers in health care reform have had to struggle. The hospice movement didn’t take off for about 15 years and I remember the people who said there was no need for it, “we’re already doing it” while dying patients and their families were abandoned and neglected. I wonder if JAMA would be more receptive. They published Kearney, Vachon, Mount and Harrison’s article on Self Care for Physicians.Being Connected…A Key to my Survival in 2009 ( March 18, Vol 310, No.11 in Clinician’s Corner.) They wrote about empathy, compassion, burn out and the need for sensitivity etc. Michael Kearney and Radhule Weininger wrote a chapter on Exquisite Empathy in the book I edited for OUP (and to which you contributed a wonderful chapter) Caregiver Stress and Staff Support in Illness, Dying and Bereavement. Kearney says that it’s the connection to patients, not the avoidance and distancing that provides the protection. The hospice/palliative care movement has a lot to offer the compassion movement.Dame Cicely Saunders, founder of St Christopher’s Hospice spoke about the need for staff support in the 60’s, “We in this work are missing an outer layer of skin and must take care to renew ourselves”. The system needs to reward compassion in order to maintain high quality care. Don’t be discouraged, Robin. We know that many of our colleagues including journal editors are much too thick skinned! Take care and take heart from all our ( and your) wonderful achievements!

  9. Stephanie says:

    Thank you, Robin! Planning to share this with our Healthcare Constellation here in Louisville. Will send heart-felt compassion to the editors at BMJ who felt a professional need to reject the article. Somewhere, I’m sure, the message strikes a chord – even with them. Know that this message resounds with all who believe in the healing power of compassion. “Hearts and minds … One atta time”! Love you!

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