A few years ago, at an international cardiology conference, I attended a presentation celebrating the 50th anniversary of Christiaan Barnard performing the first heart transplant. The speaker took us on a journey through the history of cardiology from the development of open-heart surgery, via the heart-bypass machine and pacemakers to sophisticated contemporary surgical interventions including keyhole techniques. At the end, the mostly medical audience stood giving a standing ovation to the pioneers in their field, the shoulders on which they proudly stood, and rightly so.
I remained seated, paralysed with emotion unable to control the tears streaming down my face. While I felt gratitude, I was overwhelmed by the human stories behind the pioneering advances. They included baby Fae, born with hypoplastic left heart syndrome, the recipient of a baboon heart in 1974 who survived for just 21 days post-surgery and a young mum who was left brain damaged after being a human ‘heart-lung machine’ to provide cross-circulation for her young child who underwent early heart surgery in the 1950s. While the mother spent the rest of her life in an asylum her child died. I thought of the friends I've met through congenital cardiology patient groups; survivors on paper faced with a lifetime of navigating the many additional challenges of living with a complex medical condition from ‘cradle to grave’. Survivors can pay a heavy psychological price, often silent lest they seem ungrateful.
Arguably, as someone who has felt the psychological and emotional impact of being dependant on pioneering medical treatment since birth, I'm not objective. But research suggests I’m far from alone. Medical advances over the last century have been remarkably successful with people living longer and surviving with conditions they would have succumbed to in infancy less than half a century ago. Of course, this should be celebrated. Yet, at times medical treatment pushes the boundaries of what is humanely tolerable while research suggests the psychological impact is not being addressed. Medical interventions can be painful, overwhelming and may cause feelings of hopelessness and life threat. The psychosocial impact of being dependant on lifelong medical care is extensive.
Psychologically Informed Care
Yet, this need not be inevitable, and psychology has much to offer the medical profession. I attended this conference to present my work on improving psychologically informed medical care. Often, when I present attendees note that while they understand, from a patient perspective, why medical care needs to become more psychologically informed medics and particularly surgeons can't do their job if they focus too much on ‘seeing the person’. This attitude seems to be culturally ingrained and widely accepted. I firmly believe it is a myth that needs to be challenged. Of course, professional boundaries are appropriate. There is no need for a surgeon to fully immerse themselves in a child’s (or adults) story as they yield a scalpel to them. But the patient must always be seen, fully as a person, by everyone entrusted with their care. Feeling as safe as possible, respected and validated is fundamental to building resilience, recovery and wellbeing and to prevent medical trauma. Compassionate care and good communication skills are key to this. While this comes naturally to many healthcare professionals, we cannot risk leaving it to their individual ‘bedside manner’. Rather psychologically informed care must be embedded from hospital design, ward routines, practices such as clinical holding, patient clothing, to training all medical staff in communication and the provision of psychological support for patients and healthcare professionals alike.
If you want to change the world , start by making people feel safer - Stephen Porges
As medical care marches forward, psychological understanding must run to catch up lest we risk leaving survivors unable to make the most of lives, often hard won, that so many have invested in.
7/28/2019 09:09:13 am
Like to applaud you work. I would also like to applaud the work of two surgeons, Drs Idriss and Nikaido and a cardiologist Dr. Cole and their entire staff at Children's Hospital in Chicago, Il. Also would like to applaud the research and work of Stephen Porges and his wife Sue Carter. All these people are the heros of the profession. Thanks for teaching me so very much over the years, savieng my child and now saviing our future to carry on with the next generations who can learn from their successes over the years. It takes a world full of heros like these to heal lives of the future.
8/7/2019 11:34:25 am
Thank you for your kind words Marcia.
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Dr Liza Morton