Dr Robin Youngson, the cofounder of Hearts in Healthcare, is retiring from his fifteen-year role as an activist, speaker and leader.
I have decided to retire from active involvement in Hearts in Healthcare work. I will no longer be speaking, consulting or running workshops. My stepping down is an invitation to new leaders to take up the cause of compassionate healthcare. That task is now much less daunting than the circumstances I faced when I set out on this quest in 2004.
It’s hard to imagine how different the world was then. At that time, the word ‘compassion’ was almost completely absent from medical journals, from medical training, and from the discourse about medical professionalism. Even nursing, with long traditions in the compassionate care of the patient, seemed to have become an academic speciality. It was very hard to find the word compassion in nursing journals.
In those early years of campaigning, I did a Google search for ‘compassion+healthcare’ and found no relevant results at all, except for one mention of compassion in a speech by the UK Minister of Health. In country after country, I systematically examined the national health strategies and frameworks for healthcare quality; the concept of compassion was absent. When I searched the entire website of the Institute of Healthcare Improvement (IHI), the world’s most eminent health quality organisation, I found not a single instance of the word compassion.
Although compassion was an assumed value in healthcare it was neither taught nor advocated. Medical training was still focussed on objectivity and clinical detachment. Nobody was teaching students that the quality of relationship between health professional and patient had a significant impact on clinical outcomes. The neuroscience of compassion was in its infancy. Health systems had suffered a decade of corporate managers, who emphasised efficiency and productivity, not humane care of the vulnerable patient.
I stepped into this compassion void after witnessing the plight of my daughter Chloe, hospitalised for three months with a broken neck and spine. Her clinical care was excellent. The neglect of her emotional and human needs was shocking. At the time, I was a senior health leader but none of my power and influence helped my daughter get the care she needed. Out of deep frustration, I vowed to change the system. I created a website and began recruiting supporters. It seemed that others shared my concerns.
In New Zealand I launched a national campaign to change the national Code of Rights and to add a new right in patient care: the right to be treated with compassion. My proposal caused an uproar. The Code of Rights in NZ is set down in law and the Commissioner is required to consult the public each five years for possible amendments to the Code. In the light of my controversial proposal, all the professional bodies and stakeholders felt bound to make written submissions. About half the submissions were strongly in support of our proposal; half vehemently opposed it.
After debating the issue at a national workshop, the proposal was narrowly defeated. The Commissioner subsequently argued that you cannot regulate for compassion, in a scholarly article published in the Journal of Law and Medicine.
Looking back, I think he was probably right although I was disappointed at the time.
I began to get invitations to speak at conferences. Time after time, I stepped on the stage and spoke about the importance of compassionate care of the person, not just the clinical care of the patient. I spoke about the inhumanity of the health system and my own experience of being brutalised in medical training. I talked about the need to change the medical culture, and reminded people that doctors have feelings too. I was willing to be vulnerable on the stage and I sometimes shed tears. Audiences cried with me.
My earliest speaking invitations were from integrative medicine associations and the nursing professions. While I was internationally renowned as a speaker and leader, the mainstream medical professions ignored my work for a full decade.
When I first began this quest, I was also a national leader in healthcare quality and patient safety, advising the NZ government and the World Health Organisation. However, within those bureaucratic structures, I was completely unable to progress an agenda of humane and compassionate care. Eventually, I quit those roles and instead launched an international social movement supported with a new website and online networks.
What began as an emotional argument for compassionate care began to be supported by science. In 2012 I published my book, ‘TIME TO CARE’, which for the first time drew together a wide range of scientific research into the nature of human connection and the remarkable impact of compassionate caring on objectively measured clinical outcomes. I also shared ideas about positive psychology, self-care, and compassionate leadership so that health professionals might learn to be more resilient. I used the book to launch our international movement, Hearts in Healthcare, which I co-founded with my wife Meredith.
That work to rehumanise healthcare has taken us to fifteen countries. In every country and culture we found the exact same issues: objectified patients, industrialised systems of care, and burnout of health professionals. Over those years we did hundreds of workshops with health professionals and used appreciative inquiry to draw out moving stories of compassion and healing. These stories powerfully reminded participants of the hopes and ideals that brought them into the caring professions and gave them practical examples of compassionate caring.
After many years of struggle, I started to realise that my own attitudes were sabotaging the success of our work. I began my quest feeling angry and judgmental. I was angry with hospital managers who allowed patients to be treated inhumanely within their institutions. I was angry with clinicians who wounded patients with their cold detachment. I was angry with a system that continued to brutalise and dehumanise idealistic young nurses and doctors. I was righteous in my calls for a different kind of a system. These attitudes only created resistance to our message.
As I reflected on our struggles, I realised that there was a disconnect between the values we were trying to promote and how we did our work. Self-reflection reminded me that a critical component of compassion is non-judgment. I let go of my anger and began to have compassion for the managers and doctors I had previously judged – they too were suffering and deserved my compassion.
As I softened my stance, I no longer tried to persuade people to change. In our workshops, Meredith and I found ways to draw out the compassion and strengths of the participants, thus our students became our teachers. We also changed our business model and no longer charged a fee for speaking or consulting. People supported us with generous donations.
The story of these new insights and personal changes is shared in my TEDx talk and I develop the themes in my second book, ‘From HERO to HEALER – Awakening the inner activist’.
Through these years, the science changed too. My friend Jim Doty, a renowned Stanford neurosurgeon and philanthropist, founded CCARE, the Centre for Compassion and Altruism Research and Education. The advances in science now fill an entire Oxford Handbook of Compassion Science. Simultaneous research advanced the science of mind-body connection, the way that emotional wellbeing affects physical illness, and the underpinning science of neuroplasticity and epigenetics.
A new, peer-reviewed Journal of Compassionate Health Care was launched by BioMed in 2014. I was honoured to write the very first article, which appeared on Page 1 of Volume 1. (Sadly, BioMed decided to cease publishing this journal in 2018 but all the previous content is available). Other prestigious medical journals began to publish editorials and articles about the importance of compassion and caring.
The concern about burnout of health professionals became widespread. I had long argued that we could not expect our doctors and nurses to show compassionate care to patients if they were bullied and brutalised within their own professions. Pastoral care of the medical trainee is now seen as an important part of professional development
Through all this time, at Hearts in Healthcare we have freely shared our resources and encouraged others to launch compassion projects in their own workplaces. My book, ‘TIME TO CARE’ is translated into several languages and has sparked movements in different countries. I was honoured to give the closing plenary address at the IHI Middle East Quality Improvement Forum, to an audience of 5,000 delegates. Increasingly, the patient’s experience of care is seen as a vital dimension of healthcare quality.
Since 2012, Meredith and I have also worked with the international Charter for Compassion and we have seen the spread of compassionate cities. In the city of Louisville, Kentucky, which we visited many times, there is now a compassionate medical school and many other compassion initiatives within the healthcare system. City leaders gather each year at a prestigious luncheon to celebrate compassionate caregivers.
A landmark event for me was speaking a few weeks ago at the very first ‘Compassion in Health’ conference in New Zealand, at the Auckland Medical School. Happily, I did not organise this conference because other leaders are taking up the cause. It was gratifying to see leading members of the NZ medical establishment in the audience.
In recent years the medical professions have taken much more interest in our work. Several of the medical and surgical colleges have invited me to speak at their conferences and meetings, a great honour. My own College of Anaesthetists (ANZCA) has supported my work. At anaesthetic conferences, the importance of compassionate care is now a common topic.
While writing this article I was curious to repeat my Google search for ‘compassion+healthcare’ and was astonished to now find 45 million pages. The result back in 2006 was only 3,000 pages.
In summary, new leaders in compassionate healthcare can build on secure foundations. The science of compassion is well-established. Multiple studies of compassionate caring have demonstrated a very significant effect on clinical outcomes. We know that the capacity for compassionate care can be enhanced through training. The institutional barriers to compassion have been researched and identified. We also know that encouraging health professionals to adopt compassionate caring helps protects them from burnout. The care and support of medical trainees is a recognised issue. It’s now OK to be labeled a compassionate doctor; not so long ago that was not a term of praise.
However, much needs to change. The science of compassionate caring must be introduced into the curriculum of medical training. Our institutions need to emphasise and reward human connection and compassion as much as hurried care. We need to start treating patients as people, not collections of pathology. Doctors need to acknowledge their own humanity, their feelings and vulnerabilities – this requires a huge shift in medical culture.
However, my work is done. After fifteen years of campaigning, it’s time for me to step down and let new compassion leaders emerge. We have paved the way and now we want you to take up the reins.
Will you take up the challenge?
The Hearts in Healthcare website will remain as a repository of resources and inspiration. My book, ‘TIME TO CARE’ is a primer in every aspect of the science and practice of compassion caring of the patient, and also compassionate self-care. It will soon be published in an expanded and updated second edition.
In the companion article, we lay out the resources freely available to you: a massive collection of slides with speaker notes and scientific references; guides to running your own workshops; many articles to inspire and challenge your followers; and YouTube videos sharing ideas about the science and practice of compassionate caring.
It has been an extraordinary journey. I have been blessed to have my wife Meredith at my side, guiding coaching and encouraging me. We’ve had the privilege of meeting thousands of passionate health workers, in many countries, who inspired us with their dedication and compassion. New leaders in compassionate care will be assured of a devoted following.