Practice A patient’s journey

Mesothelioma

BMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b2862 (Published 14 August 2009) Cite this as: BMJ 2009;339:b2862
  1. Kieran Sweeney, professor1,
  2. Liz Toy, consultant oncologist2,
  3. Jocelyn Cornwell, director3
  1. 1Peninsula Medical School, Exeter EX2 1PU
  2. 2Royal Devon and Exeter NHS Foundation Trust, Exeter EX2 5DW
  3. 3Point of Care Programme, King’s Fund, London
  1. Correspondence to: K Sweeney kieran.sweeney{at}pms.ac.uk
  • Accepted 5 July 2009

Abstract

Professor Kieran Sweeney was diagnosed with malignant mesothelioma at age 57. He describes here his thoughts on his interactions with the health professionals who care for him

I was nearly fifty seven and a half when I left the kingdom of the well. In a final flurry of Cartesian dualism, of course, my mind didn’t listen to my body, ignoring geriatric jogging times, inexpressible fatigue, and increasing dyspnoea. A patient of mine with similar symptoms (who had an innocent viral infection) prompted me to seek advice from my general practitioner. Thus it was that on a still, sun silked autumn afternoon, I was infused with the recklessly fearful knowing from my chest radiograph 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 respiratory 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 came to show my wife and me how to drain the pleural catheter, which was left in to promote a pleurodesis. If there was anything I wanted to know about mesothelioma, he said, with the best of intentions, 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 radiograph, having been invited to do so 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 I was having the check film, my wife asked the specialist (cancer) nurse why everyone was so downcast. At that point, everyone around knew I had a mesothelioma, except me. I learnt about it by reading the discharge summary over a glass of sauvignon blanc with lunch at home: malignant mesothelioma. “Patient is aware of the diagnosis,” said the discharge summary.

The next 48 hours are spent talking to our four beautiful kids, aged mid-teens to early 20s, whose joyous careers are currently sprinkled through school, part time jobs, and university. I can’t really convey in words the catastrophic hurt my news has inflicted on them, and it is an insult, which at their age they should never have to endure. I will die of this tumour, I say, and we must address that, neither accepting nor comprehending it. This tumour will kill my body, I say, but I will yield my spirit and personhood reluctantly. We embrace. They weep. I weep for them, for fear for myself, and for the unthinkable horror that they will continue to inhabit the world in which I will play no part. Like my wife, they are brave, selfless, and compassionate.

Thus I am dispatched to the kingdom of the sick permanently and irretrievably. This can never be a pleasant journey, but it can be made at 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 hesitation to be brave. 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. Perhaps, 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 the 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 healthcare professionals stop asking patients to “Do this for me?” I’m not doing it for them, I’m doing it for me. The key point here is about locus of control. If I am asked, or more often instructed, to do something “for me”—meaning the health professional— then the locus of control for the transaction lies with that person. But the focus of the transaction should be me, the patient. Structured in that way, the “for me” defines the interaction as transactional—I am cared for—but not relational: one is left with the feeling that the professional does not care about me but does something to 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 broad grin to acknowledge his witty lack of grammar, to “follow I!”

The most insensitive observation I am compelled to make is that the more junior ranks of ancillary health professionals are simply unable to conceal the pleasure of the deployment of their authority.

Among clinicians, what individuals and teams think is being conveyed to their patient can be quite different from what is being received, in hints, intonations, phrases, and speculations. The larger the clinical team, the greater the possibility that clinical messages may not be conveyed consistently and uniformly.

In the care I have received, the transactions have been timely and technically impeccable. But the relational aspects of care lacked strong leadership and at key moments were characterised by a hesitation to be brave. What I have always feared in illness was anonymity, being packaged, losing control, not being able to say “this is who I am.” In the end, one is left alone, here, in the kingdom of the sick.

A clinician’s perspective

Mesothelioma is a cancer of mesothelial cells that affects the pleura, peritoneum, pericardium, and tunica vaginalis. Pleural mesothelioma has been recognised as an industrial disease since 1960, when the strong causative association with asbestos fibres was confirmed. Because of the lag time between exposure and onset of symptoms (often about 40 years) incidence in the UK is predicted to peak between 2015 and 2018, although in other parts of Europe that date may be more distant. Mesothelioma was typically thought to be a disease of dockyard workers and engineers, but in a growing number of patients a definite first hand exposure is difficult to define, although they may have been exposed in childhood or have come into contact with fibres through clothing of family members.

Despite the availability of several treatment options randomised trials show little evidence of survival or quality of life benefits. Several trials are ongoing, ranging from the MARS study examining radical trimodality treatment (induction chemotherapy, extrapleural pneumonectomy, and adjuvant hemithoracic radiotherapy) to the use of new targeted agents and viral vectors.

The requirement for an integrated multiprofessional approach to management cannot be overstated. As active treatment options are limited in both choice and efficacy and are associated with considerable morbidity, the role of active supportive care is paramount. Such care may include interventions to manage pain and dyspnoea and to address psychosocial problems. Pain control with conventional agents is adequate for most patients, although some may benefit from cordotomy for intractable pain. Most patients will die within a year of diagnosis.

Treating a colleague can be particularly challenging for several reasons. Often, as in this case, they will have researched their condition thoroughly and may have more theoretical knowledge about it than the clinician they are consulting. Subconsciously this may take us back to a viva situation when our natural response is defensive—we don’t want to say the wrong thing for fear of making a mistake, and hence say little.

It is not, however, simply knowledge that we are being asked to bring to the consultation but our experience and humanity. For patients, the realisation of their diagnosis and imminent mortality may undermine their dignity and leave them feeling vulnerable. As healthcare professionals we must shore up their dignity and bolster their self confidence. Thus we might facilitate acceptance of their illness and accompany them on their uncertain journey.

Liz Toy, consultant oncologist liztoy{at}sylvan.eclipse.co.uk

Seeing the person in the patient

Patients’ stories are typically rich in detail, complex, and open to multiple interpretations. They are crafted for listeners: this one for a medical audience. Every story tells a truth, but not the only truth. The doctors in the surgical team, the specialist nurse, and the radiology attendant would all have their own stories about this particular patient. Stories are rhetorical (told to persuade): what is it that this storyteller wants his listeners to understand?

The central act takes place on the morning of the biopsy, the instruction in management of the pleural catheter, and the radiograph. The story persuades us that the professionals are not able to walk in the patient’s shoes, but we do not know if it is because the patient is a doctor. Dr Toy says caring for a renowned colleague is a particular challenge, provoking a natural defensiveness and fear of mistakes that make colleagues reticent. The patient himself believes that treating a fellow doctor puts his colleagues in touch with their own vulnerability. The difficulty is that he is “too much like them”; “the horror of what lies before [him] deflects clinical carers from straying on to that territory.”

My hunch is that it is more difficult because some people in the room know him personally and because he is a doctor. But my expectation is that other patients would have broadly similar experiences because everyone dealing with them has been left to invent for themselves how to talk and how to behave towards patients and relatives.

Cumulatively, subtly, the unexamined routines and ordinary behaviours inflict grievous emotional harm. Casually but firmly the patient learns that he is completely alone. The professionals can apply their knowledge and expertise; they are efficient and technically competent. But if they ever learnt that, “The treatment of a disease may be entirely impersonal, [while] the care of a patient must be completely personal,” they seem to have forgotten. They are unable to make eye contact and they turn a blind eye to patients being stripped of their own clothes, embarrassingly gowned, addressed in derogatory terms, and ordered around.

All of which leads me to question the nature of the multidisciplinary team caring for the patient. What is it? Who does, and does not, belong to it? What do the team members think and talk about together? Do they share the same values? Do they have a common perspective? Have they articulated what they want to achieve for their patients? If their intention is to provide completely personal care, have they worked out the arrangements and processes that could make it a reality? And who is in charge of making it happen?

Providing personal care for patients is phenomenally hard work for individuals and teams. Professor Sweeney’s ground rules will improve interactions with patients, but they do not go far enough. The intention to deliver personal care needs to be matched by investment: in practical support for care givers to help them to keep in touch with their own humanity; in training in multidisciplinary team working; and in clinical leadership.

My ground rules to prevent teams from abandoning patients when they most need human warmth and empathy start with:

  • Promoting a sense of shared work through a commitment to regular planned communication

  • Acknowledging the possibility of miscommunication, investigating how it occurs, and building the processes to prevent it

  • Striving to be transparent with one another and allowing members of the team to explore their own questions and vulnerabilities

  • Inviting members of the team who know something of the personal life of the patient to share what they know in team meetings

  • Reminding team members always to refer to patients by name rather than by diagnosis.

Jocelyn Cornwell, director, Point of Care Programme, The King’s Fund (www.kingsfund.org.uk) pointofcare{at}kingsfund.org.uk

Notes

Cite this as: BMJ 2009;339:b2862

Footnotes

  • Competing interests: None declared.

  • Provenance and peer review: Not commissioned, not externally peer reviewed.

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