Every patient is different. But is there something specific about a patient who is also a doctor or a nurse? This essay is the result of observations, reflections, and discussions between myself, an associate professor of nursing with clinical experience in palliative care, and my GP.
I was diagnosed with grade 2 breast cancer in April 2014. I may have had years of experience working with patients with cancer, but, as far as being an NHS patient was concerned, I was a novice. It soon became clear that taking up the role of patient is a huge challenge for those working in a medical environment. Some aspects of being a patient came as no surprise, but the extent to which they affected me was startling.
There are a number of ways in which the experiences are unique.
MULTIPLE PERSPECTIVES
Healthcare professionals who are patients are likely to experience their immersion in the healthcare system in a number of different ways. They are:
a patient;
a critical analyst, studying themselves being a patient;
an observant healthcare professional, assessing how other healthcare professionals do their work; and
a researcher, processing and analysing the healthcare structures and procedures affecting them as patients.
It can be difficult to switch off any of these multiple, simultaneous perspectives. I found it exhausting.
THE DISTANCING EFFECT OF BEING A HEALTHCARE PROFESSIONAL
Healthcare professionals should know better than anyone else that people get ill, yet it can come as a shock and a surprise when it happens to us. We have learned to protect ourselves from our patients’ distress by separating their experience from our own, resulting in a ‘them and us’ attitude as a way of coping with our patients’ fear and suffering. Such distancing may even lead to healthcare professionals ignoring their own symptoms of ill health. Having to experience life as a patient means breaking down the protective barriers you have had to build around yourself in order to cope with your job. Consultant neurosurgeon Henry Marsh observes in his memoir:
‘Most medical students go through a brief period when they develop all manner of imaginary illnesses — I myself had leukaemia for at least 4 days — until they learn, as a matter of self-preservation, that illnesses happen to patients, not to doctors. It would be impossible to do the work if you felt the patients’ fear and suffering yourself.’’1
Psychiatrist Robert Klitzman, who wrote the book When Doctors Become Patients,2 similarly explains in an interview how physicians learn to distance themselves from patients:
‘Illness happens to them over there, not to us. It starts Day 1 when you go to medical school. The first day you are given a cadaver and told to start opening it up. It immediately distances you. Over there is sickness, illness, patients, disease and death. And you are here.’ 3
LOSS OF CONTROL
The loss of control that comes with illness, and the additional loss of control through being in an unfamiliar environment, is difficult for any patient. It can be a particularly tough challenge for healthcare professionals who suddenly find themselves ‘on the other side’ in a clinical or hospital environment where they not only know the rules, but are also used to being in charge. Kevin Campbell, a cardiac electrophysiologist, observes in his blog:
‘As physicians, we are used to being the person in control in the healthcare setting. When the doctor becomes the patient, all perceived control is surrendered. No longer do we wear the “magic white coat” and wave healing hands over patients. Our daily intake and output is recorded. We are shipped all over the hospital for tests in unflattering, often risque attire. Once the transition to patient is made, there is no going back. Nothing ever seems the same.’ 4
ACCESSIBLE INFORMATION
All patients have a right to healthcare information and support that is suited to their needs. Indeed, one of my professional roles has been to improve access to cancer information for patients with cognitive and communication difficulties.5 Following my own cancer diagnosis, I discovered that most of the standard healthcare information materials are inadequate not only for people with cognitive impairments, but also for people more used to reading academic papers. Most of the booklets I was given sounded patronising and lacked the information I wanted and needed. Some professionals found it hard deviating from their standard and rather basic explanations, leaving me frustrated and even upset. It was unexpectedly wonderful when one consultant oncologist scribbled down the references for the most recent research papers on the debatable benefits of radiotherapy in women with stage 2 breast cancer. It may be that, for some patients, ‘accessible information’ means information written in medical language, or at least booklets with added references for the relevant research evidence. Without it, physicians-turned-patients may well waste hours of precious energy on the internet, doing their own PubMed search.
EMOTIONAL SUPPORT
In the overstretched NHS hospital services, it is easy to feel like a small cog in a large machine. Healthcare professionals are fairly at home with the NHS machine and are used to dealing with life-changing illness without falling apart. When I had to use the NHS myself, this meant that I was a publicly competent and smiling patient. But, privately, I felt just as vulnerable and shaken as any other patient; and unsure where or who to turn to. There is now a plethora of support services available for patients with cancer, but I was extremely reluctant to use them. Initially, I thought that I simply wasn’t ready to be classed as a patient with cancer. However, after a year of surgery, chemotherapy, and radiotherapy, I am a seasoned patient and remain just as reluctant. Patient support groups may benefit many patients, but, within minutes of meeting other patients with cancer, I turn back into being a healthcare professional who listens and cares, and tries to offer appropriate support. I still don’t want to be treated as a patient with cancer, but, rather, as a knowledgeable colleague who now has cancer.
HOW CAN DOCTORS HELP?
Does it matter if patients retain their focus as a healthcare professional? Or do we need to treat such patients differently, acknowledging their usual role within healthcare services and approaching them accordingly?
Kate Granger, a registrar in elderly medicine, wrote about her experience of being newly diagnosed with incurable cancer:
‘[My GP] tells me that I should stop being a doctor and start thinking more like a patient. I listen but his perspective does not change my mind. I might be a patient now but I am also a doctor and that is a huge part of me that no-one can ever take away.’6
Taking away patients’ professional perspective is not only difficult, but also undesirable. For me, as I suspect it is for many others, experiencing life as a patient with cancer from a professional point of view has been an effective coping mechanism.
The support needs of healthcare professionals who become patients are different from those of other patients. There are a number of useful external support services available for doctors experiencing ill health, such as the BMA Doctors for Doctors helpline, the Sick Doctors Trust, the Doctors Support Network, and MedNet.7 However, most of these are focused on problems related to mental ill health or substance misuse.
All healthcare professionals can offer valuable support to their ill colleagues by treating them as intelligent patients, never assuming that they know everything, but being prepared to move swiftly from the standard basic explanations to the specific. It may also be worth noting that most doctors quoted in this article highly appreciated being fast-tracked into scanning rooms or seen out-of-hours by their colleagues when they became ill.
GPs can have an important role to play. It has been argued that in the current fragmentation of secondary health care, the continuity of care provided by general primary care physicians is essential, and that this is particularly important for vulnerable patients with multiple chronic diseases, mental illnesses, and social distress.8 Perhaps healthcare professionals should be added to that list. The support of a doctor with whom patients have built a therapeutic relationship over time, and who understands the challenges healthcare professionals face when they become patients, can be invaluable.
For me, the GP’s consulting room was one of the very few places where I could let my professional mask slip and where my struggles to cope with cancer could be put into perspective. A phone call or meeting with my GP every couple of months, offering a safety net just by being there in the background, made the difference between coping and collapsing.
- © British Journal of General Practice 2015