‘THERE WOULDN’T BE a day goes by that I don’t think about giving up.’ It’s a cold winter’s morning as we huddle together over an early breakfast. Doctor X speaks rapidly, fidgets incessantly with her spoon, and darts looks over her shoulder occasionally to see if she will be overheard. ‘It is probably not a good week to be interviewing me,’ she says. ‘I have just been doing my financials and it’s not stacking up. I don’t know how I’m going to afford to keep practicing.’
I have agreed to do this interview anonymously and I have the sense that I am about to hear a darker story about the practice of medicine. Sure enough, Dr X begins by telling me about a female colleague who took her own life a decade ago. This catastrophic event led her to review her own stress and a year off. She never went back to the group clinic. ‘I like to spend time with people. I couldn’t negotiate that with the people I was working with; I was getting three hours behind and more and more stressed. I was basically told that I needed a medical certificate from my doctor if I was to have what I wanted, in terms of time to practice longer consults, which I wasn’t prepared to do. I was also forced to work at the local hospital emergency department, even though I didn’t feel I had the skills. That was what really did me in. So I just left and went out on my own.’
Dr X is passionate about the evidence-base with which she works, using nutrition, individual biochemistry and humanism to effect significant changes in the wellbeing of her patients. It is big picture medicine underpinned by additional study, with fantastic patient outcomes. Her methods, however, are unconventional. She has long consultations, prescribes significantly less pharmaceuticals and does significantly more pathology testing. These elements make her a blip on Medicare statistics. ‘I will be investigated, it is only a matter of time,’ she confides. She is sweating and asks me if it is hot in the café. It is not. ‘I don’t know why I haven’t been investigated yet. My total cost to Medicare per patient would be less than the average. I do longer consultations but over the course of twelve months I probably save them hospital admissions. But Medicare works with statistics. They could investigate me and shut me down, just because my statistics are different. They’re not interested in looking at the whole picture. Not even once they investigate. They say you are practicing inappropriately, just because you are different. I know lots of doctors who have been investigated.’
Now I am hot under the collar. I am sitting in this cold café because my husband, also a general practitioner, has, through a painful process of burnout and reclamation of his passion for medicine, felt very alone at times. He too is fed by and sees the healing properties of longer consultations and a broader toolkit of remedies to those he first studied. He too has moments of wondering where he fits, although he connects with it as a calling and would know no other life. His patients love his open-hearted, open-minded approach. Which is why I started interviewing doctors about the ways they work, the ways they make meaning in their work, and the ways they sustain themselves in the job. I wanted to know why doctors who are incorporating more humanist and holistic ways of working were being investigated or challenged by their colleagues. I wanted to know why humanism and compassion weren’t, in practical terms, the highest ideals in medicine. And I wanted to know why doctors were taking their own lives at higher rates than the rest of us.
WHAT STARTED AS a slightly angry investigation on my part has led me around Australia and New Zealand and has, in fact, become an extraordinarily affirming exercise. I have given up trying to have an opinion about the complexities of the Medicare system (or the New Zealand equivalent) and the economics which underpin it, or about ‘preferable’ ways to practice. I do not have any answer about why someone might take their own life. Instead, I have collected an inspiring array of raw and hopeful stories from those doing that most sacred work: doctoring.
We rarely consider the wellbeing and the experiences of the person opposite when we need help. I wish to bow before those in this profession who are expected to be both humane and inhuman – God-like, machine-like, arms-length – at the same time. The weight is heavy, as I have learned from living with it and from listening. And yet, it seems that practicing medicine from an open-hearted place not only feeds the patient, but the practitioner as well. As one interviewee put it: ‘The degree to which the work takes me away from who I really am is the degree to which it is tiring.’
American doctor and author Rachel Naomi Remen calls this ‘falling away from wholeness’ and suggests that the professional training often wounds doctors. ‘It encourages us to repress certain parts of our human wholeness and focus ourselves more narrowly and cognitively on the grounds that this will make us more useful and effective... Often parts we have repressed...are human strengths – the heart, the soul, the intuition, aspects of ourselves that are our resources in times of stress and crisis and enable us to understand and strengthen others. Few people realise how repressive medical training can be...every doctor can give you examples of falling away from wholeness.’
My husband’s realisation that he had fallen away from wholeness was a slow dawning. I remember one conversation which served as a turning point. It was the end of another long day and he was in the mood for talking. ‘I felt sold out by my profession today,’ he told me, propping himself up on the bench seat next to where I was chopping vegetables. ‘I had this lady who came in with menopausal symptoms and was wondering about having hormone replacement therapy. I looked at her list of problems. She had high cholesterol so was on medication for that, which probably explained the increased difficulties with menopause. She was also on antidepressants and, just before we ended the consult, she said she needed her script for thyroid – another hormone area. When we look at the whole system, there is probably a chance she started with high cholesterol and if we’d looked at lifestyle choices instead of medicating… There’s such pressure to medicate people but then we end up killing them slowly by effectively upsetting the whole system, putting her on one drug which leads to another drug and she probably ends up feeling sicker, not better! It’s ridiculous.’
‘What did you do?’ I asked.
‘Gave her the drugs. I didn’t know what else to do. That’s what I’ve been trained to do. I just felt part of a useless treadmill of irresponsible lack of real care. I’ve had some great connections with patients, but when I do that I’m worried that the practice thinks I spend too long with patients and they’re probably not making enough money out of me. I just feel a bit alone in the way I see it all. I don’t know if I’m being a “real” doctor. I don’t know if I really want to be.’
The conversation continued on and off into the night. It was not the first time we had had these discussions. Richard had left the small town clinic where he started his career and burned out. He was temporarily filling in for other doctors at various clinics and loved, for a time, the limited responsibility of it all. He was free of the accumulating piles of paperwork, free from getting intricately involved in messy small town family webs, free from building relationships, expectations or neediness. It gave him some insights into how different practices manage workloads and a bird’s-eye perspective into how he was practicing and wanted to practice medicine.
Ironically though, the fulfilling element of his work was actually about those human intricacies, the relationships, his own hopes, fears and needs, and those of his patients. I had watched him grow and struggle in his work. I had watched and admired his earnest toil and genuine care for people. I had watched him lose and reclaim his compassion. It seemed cruel to watch him again sinking.
It was a moment of clarity for me: ‘I am so sure you are not alone. I am sure other doctors think this way and practice more heart-based and holistic medicine. That’s where the world is going. That’s what the patients want. You are not alone. I am going to go and find them’.
A COUPLE OF years later those words had taken me to New Zealand, where I met a doctor whose book of poetry about doctoring, Playing God (Steele Roberts, 2002), had been sitting on our bookshelf for years. Dr Glenn Colquhoun is an intense and captivating character. Over lunch, and a string of sentences tied together with swear words, laughter and the odd pause for a mouthful of breath and food, Glenn’s colleague and I barely get a word in. We don’t want to though. I hang on every word, deeply moved by his raw honesty, exquisitely articulated insights and irreverent pragmatism. His colleague, whose home I am staying in, and who is edging towards burnout, leaves the lunch feeling moved and healed by the power of shared experiences.
Glenn shares how he started at medical school with an evangelist, do-good streak and was delighted by the academic challenge. ‘But by the time I finished my studies, I no longer felt the missionary zeal – I had come to recognise what dangers the profession contains and I was full of doubt. I was horrified during my final years of med school and first couple of years of being a house surgeon that I wasn’t prepared to make the sorts of decisions I was being asked to make. I was scared and I thought I was going to kill everybody. That was why I wrote Playing God. But by the time I got to the end of writing the book, I had got over that hump of fear and doubt. It is a steep learning curve but you do learn quite quickly. Plus, I was discovering the very beginning of that process of – wow, I really love these patients and their stories, what else is going to get me into the stories? Medicine to me is like one big poem which I find profoundly moving.’
He is a good example of how attitude influences experience of work. This can’t always override the systems issues though. Glenn doesn’t hold back about these. ‘I don’t know many doctors who work full-time. We’ve grafted this economic model onto community and care, and it doesn’t work. You almost have to do what you’re not taught at med school, just to get through a day. It becomes almost a siege mentality because we’ve lost the joy of medicine, because we’ve stopped seeing, because we haven’t got time to see. It becomes about the waiting room and keeping it ticking. It’s like a teacher in a classroom thinking: I used to love poems and now I’m teaching this poem again for the twentieth year in a row to these kids who don’t care, and all of a sudden I don’t care either anymore.
‘I’ve been at my current clinic for five or six years now and there are some I saw on the day I started and I’m still finding things out about them now, which I didn’t in a million years know about them, and I’m embarrassed. But taking a full social and family history, which can be hugely revealing, is very inefficient and just not economic at all. In the long term it has efficiencies, but in the short term it means you get through a quarter of the patients. But, general practice without that, you’d want to stab yourself in the eye wouldn’t you?
‘Waiting room economics really does drive a lot. It’s a continual deficit model – you’re here on my terms because something’s wrong with you and I’ll fix it. I feel dirty almost sometimes, going to do a home visit. Like somehow I’m letting my colleagues down because it’s not an efficient use of my time. For example, I might go and see an elderly Samoan man who has just been diagnosed with motor neurone disease and I think to myself: Is this an efficient use of resource? Should I be doing this? I think that’s sad. You see so much when you see people on their terms. And you’re humbled – you’re surrounded by their photos, their power, their television, their music, their cup of tea, and you give them mana [the Polynesian word for power] because they’re looking after you. They bake you a biscuit, or make you a cake, and make you take the lot when you leave; and you let them do something for you. Its deeply humbling, and enriching. But its extraordinarily inefficient if you’re counting the beans. Possibly not if you count them in ten years time, but if you count them at the end of this year…yeah.’
THIS ‘TIME TO care’ issue is a recurring theme in the stories doctors tell. I have met and interviewed too many doctors who have either given up, or who work in much compromised (and underpaid) circumstances, because of their yearning for more time to connect with their patients, which includes seeing issues as going deeper than the presenting symptom. Sadly some of them see it as their own personal failing, rather than an empowered and empowering way of practicing.
Another doctor I interviewed in New Zealand, was so passionate about this issue that he wrote a book about it – Time to Care: how to love your patients and your job (Rebelheart, 2012) – and started an online international community called Hearts in Healthcare. It started for Dr Robin Youngson when he was asked to present at a conference of the Australasian Integrative Medical Association about his passion. At the time, his credentials amounted to being part of a redevelopment leadership team at a major hospital serving a very underprivileged, multicultural community. The team was charged with looking at changing the culture to make it more people friendly, caring and compassionate. He was anxious about the invitation because, while he had presented at many medical conferences, he felt out of his depth with this group of people practicing mostly ‘alternative’ and complementary forms of medicine. Ten minutes before he was due to go on stage for a forty-five minute presentation, he threw away his notes. ‘So in a state of fright, I stood up there, and gathered myself and began to speak. Something extraordinary happened – there was an unbelievably profound connection with the audience. Many people cried at some of the stories that I shared, and there was just something really remarkable happening. Many of them had fled from mainstream healthcare – they could not sustain themselves in that system, so they were trying out some kind of different practice in different settings that see people and not just diseases and technology. I think it was very powerful for them to hear a mainstream hospital-based specialist, let alone an anaesthetist, talk about care and compassion and love and vulnerability. I think it blew people away. It was a life changing moment for me. In a mainstream hospital setting it is absolutely taboo to talk about caring and compassion and love and vulnerability.’
‘Why is it taboo, do you think?’ I ask in the basement of his Auckland home where he is fresh off a flight from the UK and giving me fifteen precious minutes of his time. It is time well spent and his dynamism and passion sing to me; I can’t wait to share with my husband.
‘In a mainstream hospital setting, if you look at all the people who work in the health services, I believe that the most vulnerable are the most senior, especially the specialists. I think it is to do with the nature of our training. We really have a technologically-driven and disease-focused practice. We objectify patients – it is a process of brutalisation and dehumanisation. We’re kind of created to be gods who are supposed to fix and cure everyone and we feel very vulnerable when we can’t fix or cure. I mean, the worst thing for a hospital specialist is to say: Well, I’m very sorry but there’s nothing else I can do. That feels like a devastating failure of professional purpose. Equally, if you make a mistake, if you harm a patient through an error, that’s an awful feeling irreconcilable with your idea of yourself as an expert who is supposed to fix and cure. In our training we don’t have the opportunity to learn or develop any of the skills or attitudes or practices to support people as human beings, to bring compassion and caring and mindfulness to our practice. We are then left completely bereft of any source of self-esteem when things go wrong. Difficult patients are infuriating because you feel so incompetent. The more I see arrogance these days, the more I look for the fear behind it. I think people are extremely vulnerable
and it’s absolutely taboo to discuss anything about personal feelings about vulnerability, about caring for your patients, let alone caring for yourself.
‘To give you an illustration, I’ve worked at the North Shore Hospital here in Auckland for about ten years as a specialist and in that whole time I’ve only heard one specialist, once, talk about things vulnerably with his colleagues. I was anaesthetising an obstetric patient for him and the day before he had been doing a caesarean which had gone horribly wrong and the patient had ended up having a life threatening haemmorhage. They had operated for six hours, she had a huge blood transfusion and everyone thought she was going to bleed to death and die on the table. Somehow they managed to get it under control and she survived. He said to me: Robin, that was such a harrowing experience I really didn’t want to get up and come to work today, because I couldn’t face the possibility that someone might die on my table. That’s the only specialist I’ve ever heard in ten years share this kind of story.’
ANOTHER DOCTOR WHO has had to push against the tide to instill her yearning for more humanism and compassion in her workplace is Dr Catherine Crock. She works in paediatric oncology at a large children’s hospital. We first meet in a café on the busy road directly opposite the hospital where she works. It is stolen time, as it is for many of these doctors I interview. I get the feeling she doesn’t steal time for cafés, or even for food, very often. She is one of those slim, highly active types who speak fast, live fast, achieve an enormous amount, and leave me wondering if they ever sleep. We are literally in the shadow of the shadow which she so passionately challenges almost daily.
‘I’ve always been really shy and never spoken up, never made a fuss or anything,’ she tells me, ‘but when I came back to work after having my own children [she has five], I started doing bone marrow tests and lumbar punctures on children. On my first morning back on the job the nurse said: We’ve soundproofed the treatment room, it’s much better now. I thought, what is going on here? I would not want someone to do this to one of my kids, so how come I’m now complicit with us holding these kids down, week after week, not just once, but fifty times over three years, and they’re screaming in the waiting room because they know what’s going to happen when they come in. It was a turning point for me. I just felt something has to be done about this and this is really urgent.’
Initially she went about making changes quietly, chatting to people and researching different methods of pain relief for these children. ‘The anaesthetists had an enormous amount of knowledge but they were disconnected with what was going on in treatment rooms because they just deal with pain in theatre. They were quite surprised to hear what was happening and within days they’d worked out a solution with me.’
This was the first of many small changes Cath initiated to make the experiences of the patients and their families less traumatic. These have included staggered admission times so there is less waiting giving patients pagers so they can go for a walk while they are waiting and introducing a music therapist to the team to help enhance a soothing environment for the children. This work led to Cath co-creating the first Hush CD, designed to soothe and minimise trauma for children in hospital waiting rooms and procedures. She and a team of composers, musicians and music therapists have now made thirteen widely acclaimed CD’s, with the most recent making it into the respected Limelight Top Twenty chart for classical music. In the fifteen years since her turning point moment, Cath has also been awarded a Churchill Fellowship to study patient and family centred care around the world and is now considered an Australian leader in the field, having initiated the Australian Institute for Patient and Family Centred Care.
Her crusading (which has gotten louder over the years) has come at a cost and she has been criticised for her lack of boundaries with patients. She has been told she’s providing ‘gold class service’, which is setting the bar too high and that such service takes too long and is unsustainable. ‘But my experience,’ she tells me, ‘has been that if you treat people just like a normal person and talk to them genuinely, I don’t feel like it’s getting too close, or them too dependent on you or anything. I think you just make them feel safer and more secure and you can help them a bit more. These kids have a long term relationship with the hospital. When I spend time with a child and their family, I’m building the trust of the family – it’s an investment for the next time and the next time and the next time; each time it will be quicker because the child will be less traumatised. Sometimes within the hospital machine, it’s like we’re speaking a totally different language – I’m speaking about truth and kindness and trust, they’re speaking about accountability and other management speak. It’s a very strange conversation. It seems so ridiculous to me that patient-centred work is the work of crusaders. It’s sort of embarrassing.’
Another refreshingly ballsy pioneer, psychiatrist, Dr Elizabeth Lewis, believes she would be kicked out these days with the attitude she brought as a young doctor. Again, it is hard to believe that the philosophy underpinning her work: ‘treating people as humans’ could rock the boat. Perhaps it was her ‘rage at seeing people not treated as humans’ which made her stand out.
‘I am totally uncompromising in my ethos that we have a responsibility to ourselves and to every individual in the world. I treat my patients as if they are a member of my family. I have an integrity that is sacred and I can’t deviate from that. I was so appalled as a young doctor by the way in which people are disembodied and treated as a disease, not as a person in a context. For example, the concept of “the liver in bed 9”. I would say: Excuse me, does the liver have a name?’
Liz’s husky laugh fills the space in the small, dilapidated kitchen of her humble clinic in the regional city where she works. Her mind works quickly on my questions and she breaks into laughter often. Her airiness is in stark contrast to her dark looks and the dark room, in a place where she has borne witness to so many stories of human suffering over so many years.
‘How to be so uncompromising is a bit of a minefield sometimes. It took me a long time to do my psych exams because I didn’t want to do it at the expense of anyone I was treating at the time. So that meant avoiding a lot of the requirements, for example all the various placements, because that sort of rotational system provided discontinuity to the patients. When people talk to you about their stories, their lives – that is an extraordinary gift. It is almost a sacred agreement and you can’t trash it by saying: Yep, thanks, that was an interesting story...I’ll be working at X for the next couple of months and so I’ll hand you onto Joe Blogs and you can perhaps deal with this, this and this. If people are going to tell you really weird and scary and dreadful things that are happening to them, it’s as intimate as if you are talking about their sex life. You can’t just bandy that around, like it’s something to mock them with, which is what often happens in an institutional setting. You’ve got to treat their world with some sort of reverence.’
Liz bulk bills all her patients, as part of her belief that there should not be two tiers of health care. ‘I’ve always believed that the disenfranchised and the world’s underclass deserve as good a care as people who can afford the best health care. I can’t offer any kind of treatment that I can’t offer across the board. That’s part of the uncompromising bit in me,’ she tells me.
I ask her how she, this headstrong, deeply compassionate woman has coped in a system that says that it cares, but where care is so often clearly lacking. ‘In the early years,’ she tells me, ‘it was a very haphazard thing. I just became an activist whenever something provoked me. I nearly went into obstetrics because I really objected to the fact that unmarried women putting their babies up for adoption, would have their babies in absolute silence. There was no talking, no discussion, no excitement. Then the baby was taken away, often without the mother even being told what sex her baby was, and she would be put in a ward with twenty or thirty women, amongst them women who had had stillbirths. These were the things that seemed so obviously wrong to me and so easy to fix. If I had a focus, I could cope with a system that had so much wrong with it. If I could at least dignify anyone that I came into contact with, then I could survive.
‘I guess you make as much difference as you can, hammer away at the edges. Sometimes it’s just the simple things that can make a difference. At one stage when I was working on a long-stay neglected ward, I figured that the best thing I could do was look at the notes and find out who had visited. Sometimes you had to go back a long, long way in the notes to find that anyone had visited. So I tried to get hold of all the people who had visited and tried to encourage them to visit more. I thought: I can’t change any of this, but I need to do something, so maybe if I can encourage visitors I can start to help with breaking down the barriers. The stigma of mental illness is wicked. There were people who just didn’t have visitors at all. They had no one in their lives. All you can ever do is just extend kindness in those situations. So, I may not have changed the world but I have survived and it’s been a good journey. The little changes on an individual level have been important along the way. It is the little changes that keep you kicking.’
FOR MANY OF the doctors I have interviewed, the thing that keeps them ‘kicking’ is the human exchange of medicine. I suspect this keeps their patients going also. Dr Glenn Colqhoun articulates this beautifully: ‘I have come to realise that the bedrock of all consultations is the art of story. Listening to someone’s story gives you a feel for the shape of it – it is almost a tangible shape – almost like palpating an abdomen but it is existential, spiritual. You can feel the ridges and the sorrows, the aches, the things they carry with them – their fears, quite often. Almost everybody is carrying something when they talk to a doctor – even if its just nervousness about talking to a professional. And you can sense that, allay it, and get to the core of what is going on for them. And that connection then guides everything else.’
Glenn is quick to point out that he doesn’t discredit the science of medicine. ‘If I’ve had a pain for two days in my right iliac fossa, I don’t want someone who is kind to me, I want a bloody good surgeon. If I break my leg, or if my daughter falls off the jungle gym, these are times when you want a body mechanic. But in general practice, ninety-nine times out of a hundred that is not what is going on; what is going on is a whole lot of other stuff, and spirituality is much more part of your medicine. I can’t stop you having diabetes. I can’t un-renal fail your renal failure. I can choose to use some medications, which might squeeze an extra per cent out of you, but even then, I might get that wrong and make things worse. I’m much more attuned to the way medicine feels, than to the way it thinks. The arts tell you where and what science to use, rather than the other way around. The art of the doctor is the art of story.’
The art of a meaningful and sustainable work life is that of maintaining ourselves in the narrative, of not ‘falling away from wholeness’. Perhaps the greatest art of all is the art of maintaining compassion in the face of the pain, trauma and neediness of others. And in the context of the economisation of care. The current ‘medical system’ is failing both doctors and patients. Doctors who recognise this and attempt to humanise the process achieve their positive outcomes at considerable risk to their professional standing. The government is struggling to keep up with ever ballooning health costs and the Australian Medical Association continues to worry about the failing health of its own profession. Einstein is famously quoted as saying: ‘We cannot solve our problems with the same level of thinking that created them.’
I would like to humbly suggest that part of the solution may not lie in science, mechanics and economics, but instead in the politically challenging intangibles of faith and investment in the extraordinary healing power of humanism. The art of story sharing is as ancient and healing as the art of medicine. It is my hope that the sharing of these artful and powerful stories honours and feeds the fine art of humanism in medicine.
Level 4, Griffith Graduate Centre
South Bank, Campus – Griffith University
Sidon Street, South Bank 4101 Australia
South Bank Campus, Griffith University
PO Box 3370, South Brisbane 4101, Australia
Phone: +61 7 3735 3071
Fax: +61 7 3735 327