Category: Patient narrative

Social media as a new outlet for gratitude

Cards displayed on the sayingthanksward, chocolates in the common room… but there is an increasing trend to use Facebook as a collective noticeboard to proclaim gratitude. Showing Thanks is a recently established webpage for conveying gratitude to healthcare professionals involved in maternity care and childbirth. Mothers have been posting their stories on this Facebook site and then Rachel Ellie Gardner has taken it upon herself to let healthcare trusts know when a member of their staff has been thanked.

Anecdotally, we know that staff involved in obstetrics get a lot of gratitude. Even if a birth has been dramatic (and, let’s face it, most births have elements of trauma), the outcome is usually happy. The thanks logged so far are revealing of what women value as being worthy of gratitude. These tend to be making time in spite of being busy, compassionate touch (like giving a hug or holding someone’s hand), being supportive of choices, and being reassuring. Even when the outcome was tragic, women have still thanked healthcare teams for being kind and supportive.

My reading lately has taken me into the realm of the ethics of gratitude. A conundrum when considering gratitude in healthcare is that patients are not obliged to be grateful. After all, healthcare providers are paid to do a job of work in an institution which is funded by taxpayers. Therefore the care provided is a duty rather than a benefit.  Alan Goldman (1980, The Moral Foundations of Professional Ethics, Totawa, NJ, Rowman and Littlefield), for example, argues that citizens have no debt of gratitude to the state because they collectively pay for public goods through taxes. This suggests the relationship between citizen and state resembles a commercial relationship (one does not feel gratitude to a store for selling you goods). However, it is clear that many patients do not see healthcare in this way. I think this is partly because there is a collective social resistance to political pressures to commercialise the NHS, but also because the benefit of healthcare is psychically distant from the funding of it through tax. Overwhelmingly though, gratitude is a culturally mediated, social action that takes place between people who have a shared emotional connection. Gratitude becomes an instinctive response to what we might generally call ‘humanity’ demonstrated that goes beyond obligatory professionalism.

Walker (1988, Political obligation and the argument from gratitude, Philosophy and Public Affairs 18: 359–64) argues that even if you have ‘paid’ for a service, gratitude may be warranted if the quality of the service is exceptional and the manner in which it is provided is special. This is borne out by the stories being told on sites like Showing Thanks.

Automated feedback texts

friends_and_family_testAn article on the Guardian’s ‘Comment is free’ website is attracting a lot of attention. Within two days of posting, it has been ‘shared’ on social media nearly 27,000 times and attracted 650 comments. The article is a first-person account of experiencing a miscarriage. The couple received excellent, sympathetic care, undermined somewhat by an automated text the next day asking, ‘How likely are you to recommend our A&E department to your friends and family if they needed similar care or treatment?’ The text presented a 5-point Lickert scale and asked respondents to text back 1 to 5 on the basis of how likely there were to recommend that A&E. This also happened with a follow-up scan at a different NHS site.

The couple felt the texts were ‘crass and inappropriate’. They did not want to be part of someone’s piechart being lauded at a meeting for improving ‘customer satisfaction’ (again the economic language that has proved so potently divisive given the debates about privitisation in the NHS). Instead it was the sincere, human interchange which this couple saw as their meaningful feedback: ‘We had thanked the excellent doctor who witnessed our anguished hope, who entered into that space with us at the start of a long night in A&E and held our hands when our nightmare became reality. I can’t speak highly enough of her … That’s the place for feedback: face to face, sincere thoughts and feelings expressed from one human to another.’ It seems the intimacy of the expression of gratitude was violated by the imposition of a faceless, administrative measure by text. But the comment, ‘I cannot speak highly enough of her’, is revealing. It suggests that language is unequal to the task of praise in this instance, thus the negative framing: ‘I cannot speak.’ That the article has been written at all is a way of expressing gratitude, even if it is by way of condemning the feedback system.

The measure, known as the Friends and Family Test (FFT) was announced by the Prime Minister in 2012 and is gradually being rolled out across all NHS services. Various healthcare trusts publish their results on their websites, and NHS England aggregates the results here. Defenders of it see it as a cost-effective way of improving services: the statistical measures are published so that some services are ‘named and shamed’ presumably so they will try harder. The feedback does allow for comments which is presumably what really delivers value in terms of suggestions for improvements or singles out particular individuals or practices for praise. Do these positive comments get fed back to staff? I hope so.

The framing of the ‘would you recommend?’ question is not appropriate for A&E. No one ‘recommends’ a trip to A&E: it should be a place of last resort. One can’t imagine googling the stats before deciding on the A&E at which to turn up, or instructing an ambulance driver to head for a distant A&E department that has a higher FFT score. So how could soliciting feedback be done better?

Presumably there is some admin involved in which phone numbers need to be transferred to the system which sends out the text. If there is joined-up thinking here, someone would make a judgement call about what method of soliciting feedback would be best, or whether it would be appropriate at all. Might this be open to corruption with Trusts cherry-picking patients to survey whom they think will give positive feedback? Perhaps, but an audited system in which decisions about whom to survey are transparent would be preferable to the one-size-fits-all approach. In this case, it would have been far kinder for someone to ring the couple to ask if there was any further support they needed, and gently asking an open-ended question about their experience of A&E. If the Lickert scale must be brought into play, framing it with an apology for the bureaucratic style might minimise the potential offensiveness. “I apologise for seeming to reduce your experience to a number, but the government requires us to collect this data. Could I ask you, on a scale of 1 to 5…?” And if the couple did single out individuals for praise, my first priority would be to let them know that that his/her efforts had been appreciated and it was fed into their staff feedback.

 

The ‘Thank you’ project

This is a sad story with a heartwarming ending. When Kellie Haddock’s son Eli was a few months old, the family was involved in a card accident that killed her husband and left Eli with serious injuries. A chance meeting at a prayer group led to a film being made of Kellie finding everyone involved in saving Eli’s life, thanking them personally, and inviting them to a concert to celebrate Eli’s recovery. The blog posting about how it came to be made is here.

https://www.youtube.com/watch?v=SwKyauE_l-k

Toasty thank you on ‘Saturday Live’

The programme ‘Saturday Live’ on Radio 4 has a regular slot where listeners say ‘thank you’ for good deeds. Health care professionals are regularly thanked on the show. Today (3 January) there was a lovely item in which a nurse was interviewed about thanks expressed by patients. The story started some months ago when a patient, Rami Seth (sp?), came on to express thanks for a slice of warm toast smuggled in by nurse Rosie Wilson while he was recovering from major surgery. Rosie spoke eloquently about how touched she was to hear the thanks expressed. It brought home how a small gesture, such as delivering a slice of warm toast, can mean a great deal to patients. Rosie said the biggest thanks is when patients come back, restored to health. The item is available on the iplayer here, 48:00 to 53:00.

A creative expression of gratitude

Rina Dave has found a wonderful way to celebrate the healthcare professionals and her friends and family who are supporting her through he treatment for cancer. She has created large-scale photographs of caregivers, each personalised by an ‘accoutrement’ that gives a glimpse of their personalities. Read more about the exhibition, on display from  17 to 30 November 2014 in the main entrance of Imperial College.

rinadave

Gratitude for whatever

Angus D H Ogilvy has written a cycle of poems in response to his diagnosis and treatment for cancer, called Lights in the Constellation of the Crab. He performs his poem, ‘Gratitude for whatever’ here.

Gratitude for Whatever

I can’t be anything other
than grateful.

What’s the point?

Anger?
Hatred?
Jealousy?
Lamentation?

It is too hard work.

Gratitude is the point
of least resistance.

Through the casualness of ‘whatever’ in the title, and spelled out more explicitly in the poem, the poet suggests that gratitude is the default emotion – the one that requires least work to achieve. The tone of the poem is one of resignation. It is not clear at whom the gratitude is addressed: towards other people or even to the cancer itself. The poem is positioned in the cycle between ‘First Screening’ and before ‘How Long?’, both of which draw attention to small acts of nature, such as watching a tree ‘shed a leaf’ or the ‘fall of a feather’. This suggests that the gratitude might be for the diagnosis of cancer throwing into perspective of the hitherto ‘taken for granted’ aspects of daily living.

In an example of how gratitude for care often generates the desire to ‘give back’, Ogilvy has donated all the proceeds from the sale of his anthology to the Maggie’s Centre in Edinburgh.

NHS Scotland has published a video of Ogilvy reading his poems as a ‘Patient Safety Story’ on their Quality Improvement Hub so that, in the words of Fiona Gailey, from NHS Education for Scotland, ‘for use by colleagues to understand better patient experiences and perceptions’ (interview here). This is admirable – Ogilvy’s poems do address aspects of cancer care that are insightful and useful. However, it is unfortunate that patient narratives of this type are being subsumed into an agenda of ‘patient safety’. The semantics have gone awry.

Patients’ stories are seen as an important means of using ’emotive narrative’ to disseminate ‘a human side to patient safety work’ (according to the January 2014 leaflet entitled Making the most of patient safety stories). Ironically, the stories they have in mind are not about patient safety, but about patient danger – cautionary tales that pack an emotional impact. Although the leaflet acknowledges that lessons can be learned from ‘rewarding’ experiences, the overwhelming emphasis is on adverse events.

The use of the term ‘safety’ is a example of the misguided use of what is sometimes called ‘progressive language’: couching something in positive terms to suggest progress. The phrase ‘patient safety stories’, though, doesn’t make any sense: these are not stories by patients about safety. Neither are they stories about ‘patient safety’. They are best described as stories by patients that could be used to improve patient safety. Using ‘safety’ as an adjective in this context may be concise, but it is at the expense of good sense.