The Art of Not Running Away
Inspired by Labours of Love by Madeleine Bunting
Social hierarchy in medicine dictates that doctors diagnose and treat while caring is delegated downwards as far as possible, from nurses to healthcare assistants, home carers and millions of unpaid family, friends and volunteers. Caring is low status work, no matter how high its moral status or how earnestly it is invoked in political rhetoric. We want to be seen as caring without having to do the actual work of caring, because actual, physical caring involves getting your hands dirty, and being exposed to things we would far rather avoid.
Madeleine Bunting quotes B.J.Miller a Californian Palliative care doctor, “Palliative care is that art of not running away” but in my experience, remaining present at the end of life is often easier than handling incontinence, or infected wounds, or caring for older people with severe dementia, or children with serious disabilities , caring for addicts or people affected by suicide and the aftermath of abuse, psychosis and more. Faced with foul smells, hostile behaviour and intolerable suffering the natural impulse is to run away and yet there are people who remain present and provide care.
The social determinants of suffering mean that the more you are deprived of money, social networks, education and/or a nurturing environment at the start of life, the more likely you are to need care. The Inverse Care Law – first described by GP Dr Julian Tudor Hart in 1971 – shows that the provision of healthcare is inversely proportionate to the ned for it and these disparities are wider the more that market mechanisms are used to drive distribution. As we move from a recession bought on by the financial crash in 2008 to another bought on by Coronavirus in 2020 – we are experiencing ever-tightening public funding for care and even wider inequalities in the need for and receipt of care.
Labours of Love is a call to action. The Philosopher Michael Sandel argued that we have moved from a free-marked economy to a free-market society, bringing in the incentives and morals of free markets into the social world where they do not belong. We need to bring the incentives and morals of care and caregiving into society. To do this we need to learn the Art of Not Running Away.
When we have been able to afford it, we have paid for others to deal with work which bores, frightens or disgusts us. Different kinds of caring are more tolerable than others. In popular culture there are no shortages of images of healthcare professionals and others caring for people who are wounded or dying, but very few involving the care for people with skin diseases, neurological diseases, mental illnesses, or learning disabilities. There are few images that depict the horror. Care is depicted as something calm and kind. What is missing is the emotional labour, the moral agony of having to do too much for too many in too little time, without support while repeatedly suffering the guilt of having done too little in too much of a hurry.
The people who provide care and the people they care for are out of sight and out of mind. Many carers are so preoccupied with caring that they barely have time to spend with their colleagues. As Bunting shows, this isolation makes it almost impossible for them to associate and organise to do anything about the rights of carers. They are frequently exploited by employers and the state and right now are among those at highest risk of infection from coronavirus.
A lot of a general practitioner (GP) work involves caring. The motto of the Royal College of General Practitioners is ‘Cum Scientia Caritas’, which can be translated, ‘With science, caring’. Very little is written about the caring aspect of the job, compared to the science. I would estimate that over 50% of my consultations involve little more than caring. Over the course of the last 20 years as a GP I am confident in saying that caring is far from simple, ‘unskilled’ work. A friend (another GP) has recently given up his third partnership and admitted that for the first time in years he can sleep without worrying about patients at night. For years he had argued that GPs needed longer training to learn the breath of medical conditions they needed to manage, but in the end I think it is not the knowledge that GPs struggle with, but the relationships. The GP and author Ian Williams said that he had to move on every 5 years to escape the complex relationships with patients that inevitably developed and his graphic novels are creative, sometimes cathartic attempts to work through some of these relationships. In workshops that I have been running for GPs and GP trainees about Trauma Informed Care I say that without continuity of care it is impossible to provide effective care for patients who have experienced trauma – at which point, usually one or more GPs says that continuity is impossible where they work – and I can see, by the way they say this, that they are suffering. In 1959 Isabel Menzies Lyth was asked to carry out an investigation into an NHS teaching hospital in crisis. Senior nurses felt the service was at the point of breakdown and one third of nursing students were giving up their studies. She noted,
Nurses face the reality of suffering and death as few lay people do. Their work involves carrying out tasks, which, by ordinary standards, are distasteful, disgusting and frightening. The work arouses strong and conflicting feelings: pity, compassion and love; guilt and anxiety; hatred and resentment of the patients who arouse these feelings; envy of the care they receive. The intensity and complexity of the nurse’s anxieties are to be attributed primarily to the peculiar capacity of the objective features of the work to stimulate afresh these early situations and their accompanying emotions.
Recognising the fact that the emotional labour of care was so hard for the students, senior nurses and management decided to break apart possibilities for continuity of care. The consequence was that the students became more distressed. People who want to care, need to be given the opportunity to develop caring relationships and the resources to do their work properly.
Reciprocity is a theme that recurs frequently in Labours of love. In caring, carers are constantly attentive to the different ways that the one they are caring for is responding, adjusting what they say, how they present themselves and how they touch. Care is a multi-sensory experience, which is why, even during a pandemic, the majority of my face to face consultations are for mental health. Caring is a creative act, improvising in harmony with those we’re caring for, getting into a caring groove. It’s enormously satisfying to accompany someone back from a panic attack or a psychotic or dissociative episode. Our natural propensity for empathy means we share in the pain and the relief. It feels good to care.
Care can quite frequently involve pain as well as pleasure. It can be the physical pain of dressing leg ulcers, or performing dental surgery, but in my work, it is often psychological or emotional pain. In providing care for people who have experienced trauma relating to abuse, trust is hard-won and consultations, at least to start with, are quite frequently challenging as patients and doctors push one another to work out where our limits lie and how much we can both be trusted and whether our care is genuine. The path of least resistance may be to whatever is necessary to keep consultations short. I have a picture on the wall of my consulting room, above where patients sit, that says, ‘Remain Kind’. I would like another that says, ‘Stay Present’. It is one of the most important things I can do when confronted by someone who is angry, anxious, paranoid, and frightened. Consultations and thank-you cards begin, ‘Thank you for putting up with me … ‘ an acknowledgement that caring relationships are hard at times.
Meaningful care work with patients like this delivers delayed gratification. There is pain before gain. As the possibility for continuity of care gradually fades away, I worry that General Practice will become less caring. For Arthur Frank, medical sociologist and anthropologist, ‘The structured disruption of continuity of relational care is more than an organisational problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other.’
Not long ago I was watching a GP trainee examine a woman to feel for a breast lump. The trainee put on a pair of surgical gloves before examining her. Afterwards I invited the women to give some feedback. I asked her what she thought about whether doctors should wear gloves during a physical examination like this. She said that she worried that the doctor would be less likely to feel a small lump. She said she would have been more reassured without the gloves. Touch can be both instrumental and affective at the same time. The instrumental touch is informed by knowledge of breast lumps and anatomy; the affective touch is confident, kind and reassuring. In another situation I was watching a medical student perform an abdominal examination. The patient took her hand and pressed it down on her abdomen instructing her – “You need to feel deeper than that”. This act of instruction was also instrumental and affective. If we are to find what we are looking for and at the same time reassure patients we need to be firm. I don’t tend to hug my patients and I’m not really comfortable with touching arms, hands or shoulders in acts of comfort. But patients in mental distress present with physical symptoms all the time, inviting a physical examination which is an act of communication. They invite a clinical examination by locating pain in their bodies. Bodies can give away what may be too painful to discuss while hands can provide reassurance that cannot be put into words. A colorectal nurse specialist recently told me that nearly 50% of her adult patients with chronic constipation were abused as children, “They are shut off from the waist down” she said. Many of them also complain of numbness and weakness below the waist. We need to be aware of how trauma affects patients – as one survivor of sexual abuse writes in an open letter to her doctor,
You may be the first person we allow to touch our bodies after they have been desecrated by another’s hands. It is terrifying, shameful, and a very painful experience. In those moments, some of our most vulnerable, we need your patience. We need kind and honest words in a gentle tone, and we need a slow and understanding touch that is safe for us to say no to.
Caring requires disposition and labour. Our dispositions are shaped by our experiences of being cared for. Care is hard labour. Part of the high moral status of caring comes from a recognition that the work, and the conditions are harsh and risky. This hard work requires resources including time and support. People who are disposed to care but lack the resources will burn out because of the repeated experience of not being to care to the standards they have set themselves.
Excellent, caring professionals are giving up caregiving roles every day. Burned out doctors and nurses are withdrawing from work that is tied up in caring relationships. They are moving to organisational, administrative, signposting roles, facilitated by the rapid shift away from face to face consulting. We risk squandering the good will and natural inclination of millions of caring people by expecting them to care with little more than their own kindness to sustain them. If we want to raise the status of care and create a more caring society, we need to acknowledge and materially support the Labour of Love.
Labours of Love by Madeline Bunting https://www.theguardian.com/books/2020/oct/09/labours-of-love-by-madeleine-bunting-review-a-humbling-book-about-care
Emotional Labour of Care https://abetternhs.net/2013/11/23/burden/
Dear Doctor; a letter from a survivor of sexual trauma https://acestoohigh.com/2017/01/05/dear-doctor-a-letter-from-a-survivor-of-sexual-trauma-to-all-medical-professionals/