Being an Active Patient

This content relates to the following topics:

Part of Time to Think Differently

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.

Comments

Nigel Horwood

Position
Patient,
Comment date
12 April 2013
Apologies for repeating part of a response I made to a previous discussion but it supports the opinions expressed in the above blog.

When I enter a consulting room I expect an equal partnership with my consultant and that decisions affecting my health are made jointly. The consultant brings the medical knowledge, experience and expertise to the partnership and I bring my history from 35 years of living with a chronic condition and the knowledge of my personal circumstances, attitudes and lifestyle which will have a bearing on any decisions that we make.

The ability to contact consultants via email, between appointments, is a very important factor in keeping my stress levels low as I can ensure that treatment is progressing and has not stalled. (It is widely acknowledged that stress can be a major factor in making some conditions worse). The same goes for organising blood tests, scans etc. so as to ensure they are carried out in time for results to be available for appointments. However, having this relationship with my consultants does put a duty on me to act responsibly. When I contact them I need to be sure that it is absolutely necessary. If simple, practical advice is needed there is a dedicated helpline who can escalate a problem if they believe it is necessary.

The above approach has been working well and I believe it can save the NHS money by avoiding abortive or unnecessary consultations. The final piece of the jigsaw would be to have full, electronic access to my medical records. I believe this will be coming soon but would like to know how the reams of hand written notes will be handled.

Having been though a fairly intensive couple of years of operations, tests, cameras stuck "where the sun don't shine" I have developed a very philosophical approach to the whole process. Out of this approach I have learned some simple techniques which help me prepare for, and get better outcomes from, consultations or other interactions with medical teams. No doubt attendance at one of the Expert Patient courses would have got me to this point sooner but I have "enjoyed" the self-learning challenge.

Mick Smith

Position
retired,
Organisation
n/a
Comment date
12 April 2013
I commend the views expressed in this blog as they say an awful lot of what I have been complaining about. It also shows very graphically that we patients are your customers and ought to be treated as such.
That said, I fear that not many patients will have the mental capacity or drive to do what Dr Havi has done. That worries me because it is those more vulnerable people who do not wish to cause a fuss; who feel grateful for what they are receiving; who find it difficult to express themselves to their consultants or doctors will not get this treaqtment because they will not ask for it. It would never cross their minds to do this.
It also worries me that our NHS is being pressured each year to continue saving millions of pounds. This will mean that doctors and consultants will just not have the time to give such fantastic personal service to all of their customers and the NHS will not have the funds to pay for extra either.
If their is a way of being able to provide such fine services strictly within the budgets then yes please, let's go for it!

Mick Smith (patient)

robert bird

Position
Caring Father,
Comment date
12 April 2013
Being listened to and when obvious mistakes made, if you air what you have seen, not to be treated like an enemy would help. I have been treated like scum for 6 years while my son goes through and remains in constant hell, suffered breaches of health acts, been attacked, care plan not adhered to given others medication etc etc no one cares or listens

jonathon tomlinson

Position
GP,
Organisation
NHS
Comment date
12 April 2013
There is not only 'wide gaps between what patients want and what doctors think that patients want’, but between what any one of us wants and what we think we want. Someone going to the doctor as a customer, wishing to have a scan for their headache may be better served with migraine prophylaxis or oxygen therapy or a careful exploration of past experiences. Medicine, especially at the holistic (as opposed to technical) end of the spectrum is dynamic and uncertain, with needs and wants uncovered through dialogue between patient and healthcare professional (something you explore in more detail in your Lancet piece). Through dialogue, in essence a theraputic relationship, both patient and professional learn about themselves, and with relational continuity this becomes an ongoing process. The re-framing of patients as customers is based on an artificial assumption about the way patients and professionals interact (as well described by Annemarie Mol in The Paradox of Patient Choice) and by myself here: http://abetternhs.wordpress.com/2012/04/09/whats-in-a-name/
A way out of this, and one I'd be very interested in your thoughts, is to combine narrative medicine and reflective practice in order to promote compassionate patient-centered practice, professional insight, moral development and resilience.

Verite Reily Collins

Position
Patient,
Organisation
www.after-cancer.com
Comment date
12 April 2013
It would greatly help those of us with chronic conditions if some doctors would only realise that having such a condition doesn't automatically mean one's brain becomes defective. It might even save the NHS money; recently my doctor took no notice of my telling him that I had to have coated tablets and changed some over to uncoated. All to say a quid. End result was a 999 call, Ambulance to A & E - and cost to NHS > £500.
All because he wouldn't listen to the patient.

Carol Munt

Position
Volunteer Patient Partner,
Comment date
12 April 2013
The first step to dialogue between patients and health professionals is that they both speak the same language i.e. no acronyms and no 'NHS speak' Stakeholders are what I used to put in the posts to hold up my fence panels and the pathway takes me through my garden to the kitchen so I can have a coffee break.

Mike Stone

Position
retired,
Organisation
none
Comment date
12 April 2013
One of the things I'm fascinated by, for my EoL 'campaign', is whether when clinicians become involved as patients or 'relatives', the guidance they used as clinicians, still seems to make sense from this new perspective ?

Often the answer (answers are hard to harvest) seems to be 'no - it all looks very different, when you turn into the patient or relative'. But this seems to be something, that only really becomes obvious when you yourself have made the transition - too many professionals, seem to assume that because they are professionals, they can 'understand' their patients ?

jonathon tomlinson

I definitely think much of the answer, is to get people to talk to each other more: and the more different the roles, the more talking is necessary (for example, a GP and a district nurse might tend to already understand each other quite well - but a GP and police officer, much less so, etc).

I also have a problem with 'following process' in a sort of tick-box manner, because that in itself seems to impede genuine understanding.

jonathon tomlinson

Position
GP,
Organisation
NHS
Comment date
12 April 2013
There are 'good' and 'bad' patients: http://well.blogs.nytimes.com/2013/04/11/good-patients-bad-patients/#postComment
And there are patients that doctors love and hate: http://abetternhs.wordpress.com/2012/12/05/love/
Like many doctors, I would enjoy looking after a thoughtful, articulate philosopher, sensitive to my workload, prepared to work hard to care for herself and research different therapeutic options before engaging.
And yet patients like her are vanishingly rare among those anxious, illiterate, non-English speaking, congnitively impaired, very old (or very young), learning disabled, mentally unwell, lonely and confused, intoxicated and angry patients I spend most of my time with.
Would they have as much of my time if I started sharing my phone and email details with my friendly philosopher patients? Would I be sharing my personal contact details more for my benefit than my patients?

Jocelyn Cornwell

Position
Director of the Point of Care programme,
Organisation
The King's Fund
Comment date
12 April 2013
Havi - you concentrate here on the relationships between patients and their doctors, and I'm also struck by the detail in what has made a difference to you: having direct access to a named person; not having to wait days or weeks for test results and so on.

Some of this is of course down to individual doctors and the way they manage their relationships with their patients. But healthcare organisations could do so much to improve patients' experience of care if they also paid attention to sorting out the basic admin and organisational problems that make life hell for people who are frequent users of services. So managers and administrators roles in creating the structures and processes that support empathetic care are important.

You call for 'clear, positive communication and mutual respect". If these were held up as fundamental principles and care processes were designed with the end user in mind (as it is in experience based co-design) it would make an enormous difference.

Tess

Position
Reluctant Patient,
Organisation
PKD Charity
Comment date
13 April 2013
I have polycystic kidney disease, diagnosed in 1980, chronic, incurable, inevitable decline. The care process has barely altered in 3 decades, and while sitting in resigned frustration in many out-patients clinics, I've pondered on how the system could be improved and how patients like me could help, but no-one has ever 'really' asked. Some initiatives are trumpeted as patient-driven, but I know they are actually NHS-driven, with a few patients brought in to tick that box. And now, post 1 April, every 'initiative' is cost-driven.

I was recently inspired, however, after reading a case study on the re-design, together with patients, of the gastroenterology unit in Highland Hospital, Sweden. Objective wasn't to save money but ultimately it did, as observed by comparison over the years with other Swedish units. Importantly they adapted the care process to suit the patient's needs and values. The process was also applied to in-patients.

What they learned "was that patients do not cause the healthcare system to «overflow», when they are put in charge. On the contrary, patients are rational people, so they don’t seek health care when their needs have been met. They use the system responsibly to improve their own health, and in so doing they decrease the unnecessary calls on the time of physicians and nurses. " Moreover, "the results seem to be better when the patients are in charge than when we in the healthcare system try to force patients to do what we think they should."

I am now in a renal outpatients waiting area, pondering who to talk to about trying this out in kidney care. I know many nephrologists, but which one is brave enough to put me/us in charge...

The case is called:
'Empowering patients to need less care and do better in Highland Hospital, South Sweden'

Here's a link:
https://www.dropbox.com/s/vfwerexws47xpk0/Re-designing-CarePathway-Sweden.pdf

Malcolm Rigler

Position
NHS GP,
Organisation
NHS
Comment date
13 April 2013
Havi has set so many "horses running" in my mind that it is hard to know where to start. My experience of being a GP over many years now has made me realize just how impossible it is to "get to the heart of the matter" with patients who have long term conditions in the "ten minute consultation" when the doctor is already 30 minutes or more "running late" and they "do not want to cause any bother" . We absolutely must explore new ways of developing the "dr-patient" relationship . The use of e-mails and finding other ways of "being available" can help but I have learnt to my cost that this way of working does not always work well. In addition many of us GPs are now working part time trying in the time away from direct patient contact to develop better preventative medicine services or attempting to secure a reasonable "work life" balance. My greatest hope these days is that the "Libraries and Health" partnership work will lead to more and better support of all kinds for patients and carers drawing in many more people of good will who will be willing and able to "help with healing" and share with us the modern Hippocratic Oath as:

Hippocratic Oath: Modern Version

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

—Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.

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