Being an Active Patient

Having a chronic lung condition is the most exhausting and unrelenting experience I have ever had. I was diagnosed with lymphangioleiomyomatosis (LAM) in my mid-thirties. Realising that I had lost the freedom to live my life as I chose was tough. But this realisation is compulsory if one is to live with a chronic illness. Moreover, I didn’t just want to live; I wanted to live well within the limits of my illness.

This was the most significant challenge I have had to face. And I set about responding to it using everything I had: my training as a philosopher was surprisingly handy; I was lucky to have my family’s unrelenting support; and I sought technological solutions, such as an electric bike. I wanted to live as normally as possible. I wanted to be able to love, work, have a family, participate fully in social and professional life, and live well despite, or rather, with my illness.

How do I express this desire to my nurses and doctors? It can seem a difficult task, especially when time is often short and the setting quite formal. I understand that health professionals mainly focus on the clinical and scientific side of things. They offer excellent insight and interventions pertaining to that aspect of illness. But only we, patients, know the full impact of illness on our everyday life. We undergo the loss that others can only witness. We live our illness and develop a unique sensibility to both its opportunities and demands.

I suggest that these two pieces need to fit together to create a picture of a life lived well despite the limitations of illness. Health professionals do not – and cannot – know every detail of a particular person’s life, needs, and goals. A recent report by The King's Fund on Transforming the delivery of health and social care states that ‘there are wide gaps between what patients want and what doctors think that patients want’. Therefore, we have to involve health professionals, to an extent, in our lives, whilst being mindful of their workload and different interpersonal styles. We also need to be aware of the differences in perception and experience: my illness shapes my life, it is with me constantly. For health professionals this illness is ‘a case of LAM’, and whilst they do their utmost to ensure my physical wellbeing, they cannot buffer the losses I experience.

What has made a difference to me? Being able to contact my doctor and nurse when I need to; being able to seek advice as soon as a worrying symptom appears; having test results interpreted when I receive them, not days or weeks later. The fact that I have my consultant’s email and direct phone line, on the understanding that I won’t abuse this access, makes me feel secure. I know that if something happens, she will be there. I won’t have to leave messages, talk to people who don’t know me or my condition, or be left alone, anxious and in pain. Although the NHS is large, it needn’t be impersonal. The needs and requests of most patients make sense, and that sense needs to be clearly communicated, respectfully listened to, and promptly acted on.

If patients and health professionals are to communicate well, beyond formal protocols, and share a genuine understanding of the patient’s life, then patients themselves must identify their goals and desires and ask the relevant practitioner to help fulfil them. No one can do that for us. We should know how and when to ask for help to ameliorate the losses caused by illness. And we should clearly point to our shared goal: to live well.

This can be achieved mainly through clear, positive communication and mutual respect. It does not demand complex technology or vast amounts of time. All it requires is attention to the world that the patient inhabits and respect for patients’ articulation of that world.

Asking patients what they need becomes an obvious first step. Ensuring that no one is left alone, to fear and doubt their body, follows. Continuing encounters between patients and health professionals become a relationship between two people, as I explored in my article for The Lancet. Empathy must underlie both sides of patient-health professional interactions. None of this is complicated or expensive. It simply means offering support and care to those who need it with the understanding that vulnerability and dependence characterise human life. Caring for one another is the foundation of living well for both carer and cared for, as philosophers like Alasdair MacIntyre tell us. And the need to make this insight the starting point of health care practice is yet another reason to embed philosophy and ethics into health care teaching and training.

Dr Havi Carel is Senior Lecturer in Philosophy at the University of Bristol and also teaches at Bristol Medical School.