Personal story 1

Prior to the workshop, participants were asked to think of a time when, as staff, they wanted to show compassion but felt unable to do so or when they felt that they or someone close to them had been treated compassionately – or the opposite. The following are excerpts from the accounts participants supplied:

I went to work on an elderly ward where patients died daily and there was great pressure on beds. At first I did all I could to make the lead up to a death have some meaning and to feel something when one of them died. But gradually the number of deaths and the need to strip down beds and get another patient in as fast as you can got to me and I became numb to the patients; it became just about the rate of turnover, nothing else.

Personal story 2

I was 10 weeks pregnant when I began to bleed a little. I went up to the hospital, by then doubled up with pain. Three young doctors came into the cubicle, two men and a woman. When they saw I was unmarried one asked me what I had done to get rid of the baby. I told them I wanted the baby, was living happily with the father and planned to marry next month. Two of them ignored this, gave me an internal, and then, despite my screams, pushed a tube through into my abdomen apparently to see if I’d used some substance to produce an abortion. They never looked at me, just at my abdomen, and talked to each other and just shrugged when everything was clear. The third doctor, from Africa, held my eyes and held my hand. He called me by my name and looked ashamed. When the two had gone, chatting away between themselves, he explained what they’d been doing. Later, when I lost the baby, he came to the ward to say he was sorry. I won’t forget them ever, but even more I won’t forget his kindness. It was a long time ago and I hope things have changed.

Personal story 3

We were looking after an elderly female patient who was due to go home. We were all intimidated by the consultant – academia came before compassion or care with him. I had presented the patient to him, along with our plan. He approached her and, without introducing himself, taking much history or examining her, he told her that she would not go home and needed further tests. He walked away at this, instructing me as he went on the tests to be arranged, and leaving the patient in tears. I had to follow him to listen to my instruction and so was unable to stay and explain things to her. At no time could I do as I would have chosen.

Personal story 4

The afternoon that we arrived at the hospice a doctor and nurse came to talk to us. My husband was terminally ill and had just been discharged from three dreadful weeks in hospital where he’d been given procedures without us quite understanding why, had been left for an hour in excruciating pain, and had been starved for days on end because he dropped off the list day after day. He was so much worse now so a hospice was suggested and we’d gone there reluctantly just to get his medication right. I could see he wasn’t going to be very welcoming to another doctor at this stage. But she asked about him, not about his illness: what had he done for work, what did he enjoy now, what did we do together. Gradually he seemed to grow back into the large, active, witty man he’d been. She spent all the time he needed, she answered his questions honestly, she allowed silence, and she addressed the whole man – the one he was as well as the one he had become. It was a generous, kind and honest conversation with lots of laughter as he entertained her. He stayed in the hospice till he died.

Personal story 5

…[I]t was on a still, sun silked autumn afternoon that I was infused with the recklessly fearing knowing, from my chest x-ray, that I had a pleural effusion on my right lung. Probably infectious, said my general practitioner, though I could sense his unarticulated concern. There are many causes, said the earnest young consultant, whom I saw the next day, referring to some “rare aetiologies”. It really was only those rare causes that interested me: can we please exclude them, and then I can get back to normal? The pleural tap showed nothing (good!), and a pleural biopsy was planned for the next week.

The biopsy was carried out competently, by a surgical team who all looked disturbingly downcast after the procedure. None could address my increasing anxiety, except perhaps the most junior member of the team, who, I sense in retrospect, did not feel he had either the authority or life experience to discuss the diagnosis. I was told that while chronic infection could not be excluded entirely, tuberculosis was extremely unlikely, and yes, mesothelioma could not be excluded. Prepare myself for the possibility of something serious, I was advised. The specialist nurse, known to everyone as the cancer nurse, came to show my wife and me how to drain the pleural catheter, which was left in to promote a pleuradhesis. If there was anything I wanted to know about mesothelioma, he said, in that tone of voice which conveys expertise rather than compassion, he had lots of information available. The physical shock of his throwaway remark fractionally preceded its violent emotional impact, but smiling blandly, I went down for a check X-ray having been so invited by the nurse on duty thus: ‘Could you get this young man to go down for a chest film when you’re finished?’ My guess is that the nurse was about 22 years old. While having this check film, my wife asked the specialist cancer nurse why everyone was so downcast. At that point, everyone around me knew I had a mesothelioma, except me. I learned about it by reading the discharge summary over a glass of sauvignon blanc with lunch at home. Malignant mesothelioma stage 2.

Thus am I dispatched to the kingdom of the sick permanently and irretrievably. This can never be a pleasant journey, but it can be made, at the least, tolerable, dignified, even. One’s guides in this world have a dual role: to read the map, and direct you accordingly, but also to be with you on the terrain, a place of great uncertainty. Where one meets the most senior clinical staff, one is left with a sense of technical competence, undermined, with some notable exceptions, by a lack of courage. Eye contact is avoided when one strays off the clinical map on to the metaphysical territory – I am a man devoid of hope – and circumlocution displaces a compassionate exploration of my worst fears. It may be that, as a doctor, I present an unusually severe challenge to fellow clinicians – I am too much like them – and the horror of what lies before me deflects clinical carers from straying on to that territory. No one can imagine the unimaginable except those, like me, who are experiencing it.

But one’s journey to this bleak place can be rendered more bearable if everyone who shares a professional role at the various staging posts bears the bleakness of terminus in mind. Some simple ground rules could improve the nature of the professional patient interaction, if not actually displace its underlying, transactional mindset. Please, can all health care professionals stop asking patients to, “Do this for me?” – they are doing it for me. Please, can we avoid crass attempts at humour? There is nothing funny about clutching a plastic bag with all your clothes in, except your pants, socks and shoes – just stop and think what that must be like – while trying to secure a hospital gown around you, and following, like some faithful gun dog, a radiology attendant who without introduction commands you, with a smug grin, acknowledging his witty lack of grammar, to ‘Follow I!’… In the care which I have received, the transactions have been timely and technically impeccable. But the relational aspects of care lacked bravery and dignity. In their absence, one is left alone, here, in the kingdom of the sick.