Can we guarantee compassionate care?

Comments: 4

Can we give patients a guarantee of compassionate care? This is a fundamental – and difficult – question for us on The Point of Care programme as we research and test interventions to improve patients' experience in hospital.

I have to confess that my best answer is: 'No. We cannot guarantee compassionate care. But we can and should do more to make it more likely.'

Some of the things that get in the way of delivering compassionate care – care that involves 'a deep awareness of the suffering of another coupled with the wish to relieve it' – are highlighted in a powerful video interview with Dr Kieran Sweeney, recorded shortly before his death from the asbestos-related cancer mesothelioma in December 2009.

I first had the privilege and pleasure of working with Kieran – a GP and fine medical scholar – at the Commission for Health Improvement ten years ago. Over the years, we became friends as well as colleagues; he was one of our first advisers on the Point of Care programme.

Kieran knew from the moment of diagnosis that he was, in his words, 'a man devoid of hope'. But while there was time, he wanted to communicate widely his reflections on compassionate care, as a health professional committed to compassion-based medicine and as a patient.

In his interview on the E-learning for healthcare website, he talks about something I think of as almost an 'existential' problem dividing health professionals and patients.

'The health care professional,' he says, 'does a job, and for many people this job is pretty mundane. They're doing the same kind of thing to the same kind of people pretty well every day. So for them that activity becomes completely routine. And some days rather dull. For the individual patient it's anything but that. Every individual that comes through a hospital is apprehensive. It's a strange place, you lie in a strange bed, you have strange sheets, you have odd tea in a plastic cup. The whole thing is vibrantly different.'

(I love the detail about sensations – the strange sheets and odd tea. It is so accurate and immediate.)

The existential challenge to 'see the person in the patient' is profound. Nowadays there is a host of imaginative ways to remind staff about what it is like for patients: interviews, films, creative writing, work with actors etc. On the whole, these methods probably work, but for how long?

Somehow, we take it for granted that people who work in health, care about patients. But, frankly, it is likely that health workers are as diverse in their motivations as any other group, and in any case, is it right, or reasonable, given the nature of hospital medicine and the number of patients professionals encounter, to expect them to be sensitive to each and every one? Staff are, after all, 'only human'.

It is precisely because they are 'only human' that I think we need to work harder to understand how to develop, sustain and renew compassionate responses and find systemic solutions.

The Point of Care is piloting Schwartz Rounds® in the UK, which we believe are part of the answer. The Rounds are a monthly multidisciplinary forum for care-givers to discuss the emotional and psychological issues arising from care-giving. They aim to strengthen relationships between patients and caregivers by offering staff an opportunity to reflect together, in a non-judgemental forum, on the nature of their work with patients.

But Schwartz Rounds® alone will not deliver reliable care or guarantee respect and kindness to patients, no matter who is looking after them. The solution to reliability lies with teams and with team working. Teams create compassionate care in the same way that teams create patient safety.

I believe that some of Kieran's painful experiences might not have occurred had all the staff caring for him been encouraged to share their aspirations for patient communication and patient care, and to discuss openly and honestly what they would do – in terms of feedback and mutual support – if, as would inevitably happen, the conduct of a team member fell short of the agreed standard.

I urge you to watch the interview. It is unforgettable, deeply affecting and rewards more than one viewing. If you have more time, you can read the educational resources that accompany it on compassionate care, team working and leadership. It is a good resource, it is free, and it helps to refine our understanding of what gets in the way of compassionate care.

Comments

#223 Carol Sinclair
Director, Scottish Patient Experience Programme
Scottish Government

Jocelyn

This article resonates so powerfully with all that we would wish to achieve through the Scottish patient experience programme and how the experiences of patients can tell us so much about these "existential" aspects or qualities of care. I will be sharing this widely with colleagues and look forward to accessing some of the materials via the links that you have provided. We are taking people on a difficult journey to be able to reflect honestly on the variation we know exists in the quality of care we provide for patients and what is actually most important to the person at the centre of that care rather than their immediate clinical need or outcomes.

#226 Andy Bradley
Founder
Frameworks 4 Change

Dear Jocelyn
Thankyou so much for this post. I believe that compassion lies firmly at the heart of the truly caring realtionship so it is inspiring to read your words and to learn directly from the courage and honesty that Kieran shows. His teaching is very precious and authentic. I would very much welcome an opportunity to share some time with you as my own work includes a recent film called 'Knowing You Matter' which calls for dignity, compassion, kindness and respect in care and nursing homes for elders. i believe that honest film making and collaboaration has great potential to impact on the embedded culture (what i call the 'furniture of separation').
My mother is a lifelong nurse to people with dementia - i have been blessed to witness compassion in action and i know what a gift it is to both the patient and care giver - it makes us whole.
Clips from the film and comments can be found at www.knowingyoumatter.com
we are in talks with others about more Knowing You matter films in which we seek to honour the stories of people who know of the humiliation that Kieran describes.
Forgive me for making a small point - on clicking on the final link in the blog there is an email address for Kieran - i felt you may like to address that.
warm regards
Andy Bradley
Founder - Frameworks 4 Change
Exec Producer - Knowing You Matter

#236 Robin Youngson
Founder and Trustee
NZ Compassion in Healthcare Trust

Dear Jocelyn

Congratulations on starting this blog and for providing links to the powerful resources on the e-learning site. It was a privilege to meet Keiran on the occasion of my visit to the King's Fund last year.

One of the reasons that his comments (on the video interview) are so moving is because of the deep compassion and understanding he shows towards the health professionals who inadvertently caused him so much anguish. His honesty, in revealing the "bitter ranting" of the first draft of his BMJ paper, combined with his later understanding and forgiveness, provide a wonderful role model and allows each of us to reflect deeply on our motives and actions.

No, I don't think that we can give patients a guarantee of compassionate care (we are all human and have our failings) but I think there is another way we can positive make a statement of expectations.

Last year, the NZ Compassion in Healthcare Trust (www.compassioninhealthcare.org) campaigned to amend the NZ Code of Health and Disability Comsumers' Rights. We said there should be "A right to be treated with compassion". This does not guarantee that patients receive or experience compassion, only that we as health professional will do our reasonable best to treat every patient with compassion. After all, patients have a right to be informed, and a right to be treated with care and skill. No patient is ever fully informed and no patient receives care to a 100% gold standard. The test is reasonableness.

The failures in compassionate caring that I and my family have witnessed, that are told in the patient stories in the resources you highlight, and that are portrayed in Keiran's moving account, are gross breaches of what should be a duty of compassionate care. Any ordinary person would judge these failings to be uncaring, indefensible or even callous.

To leave a person in the waiting room of a busy emergency department for six hours, suffering untreated severe pain, is callous - but commonplace.

To leave meal trays beyond the reach of disabled patients in hospital, and then take them away untouched an hour later is inhuman - but reported so often as to become unremarkable.

Somehow we have to clarify expectations amd make the judgement that such lapses in human caring are a violation, a breaking of the rules, a failure of duty.

We didn't succeed in change the NZ Code of Rights but the campaign was worthwhile because every professional body was challenged to think deeply and then state their position on this controversial proposal, in written submissions to the Commission.

I am so encourged that in a few, short years, the issue of compassion has gone from "invisible" to being on the national agenda for improving healthcare. Keep up the great work!

I think there are growing opportunities for international collaboration on this work and we look forward to continuing the dialogue.

Warm regards

Robin

#238 claire chambers...

Dear Jocelyn,
As everyone else has said this interview is highly moving and thought provoking. Kieran's courage in recording this interview so soon before his death is also very inspiring and we can learn a great deal from his thoughts.

The instances he describes are clear "emotional touchpoints" as Belinda Dewar et al (2010) clearly describe in theitr article. The actual words and actions that would make people feel the way that Kieran did, might be different for everyone. However, the underlying emotions of powerlessness, not feeling cared about, and of people hiding behind the science and technology, and not engaging with him on an emotional level, would be common distressing factors for anyone. We should be actively seeking feedback from patients and clients about how particular emotional touchpoints have affected them. This can improve our future practice and we all need to be aware that all our actions and interactions are irreversible and mean so much, either negatively or positively, to people we come into contact with, even very briefly.

Thank you for sharing this interview. Like everything from the King's Fund Point of Care programme and the Edinburgh Napier University/ NHS Lothian work this continues to inspire our writing on compassion and caring in nursing and our next book in relation to this on leading the change in relation to compassion.

Andy Bradley's Frameworks4change film Knowing you matter is very inspiring too. The experiences portrayed on the film also highlight the importance of the person and importance of sensitivity and humanity , by focusing on the experiences of people in care homes.

We hope all is well with you and Joanna
All the very best
Claire Chambers and Elaine Ryder

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