We say NO to uncompassionate form filling

DailyMail Do you want us to let you die

A questionnaire being used by NHS District Nurses to gather information and review the care of vulnerable citizens has failed the Mother Test with Roy Lilley and immediately made the front page of the Daily Mail:

The Duchess had a prearranged visit; the nurse turned up 45 minutes late but I suppose the elderly have all the time in the world to sit about waiting… …A chirpy, determined to be cheerful, very pleasant, younger edition of Gracie Fields appeared and ploughed through a form. Every single item (except 2) of information required to fill the form could have been pulled off practice data or social services records… …Huge duplication? Waste of a visit? Not really. Face-to-face you get a feel for how people respond and live their lives. Trip hazards, personal hygiene… to an experienced eye a visit is worthwhile… …Two questions? Oh, yes… here’s one: ‘Where would you like to die…’ It came as a bit of a shock. The Duchess thought ‘at home’. I said Hawaii. Can we get the tickets on an FP10? Here’s cracking question number two: ‘… if you ever need cardiopulmonary resuscitation do you agree to Do Not Resuscitate’. Bang! Right between the eyes! Out of the blue, no warning… do you want to be flat-lined? You can read it for yourself in this document, page 33; the form template. NHS Employers have written this guidance along with the BMA and the Carbuncle. NHS Employers? Yes, that’s what I thought. Here are a few issues that come to mind: Agreeing with the district nurse and signing (yes the form has to be signed) to a DNR has what legal significance? The form is not witnessed, does it matter? How is the elderly person’s competence judged as capable of signing? How are relatives informed? How is this decision transmitted to secondary care and when? Oh, and has anyone got any idea how an unwitnessed, fire-side chat with a district nurse, who is a complete stranger, might fit into the GMC Guidelines para 132 and the responsibilities of the administering clinician at the time. Of course DNR discussions can take place as part of an advanced care plan. A chat with our-Gracie is not advanced care planning. It is a chat with our-Gracie and that’s all; going over everything the practice already knows… …What of the vulnerable patient? Some will think ‘I don’t want to go to hospital they will let me die… they need the beds’. Others might think ‘if I don’t give the answer they want I won’t get taken to hospital’…. …And I’ll bet the farm, when the District Nurse has gone frail elderly, stick-thin, porcelain-skin, house-bound grannies, who survive at the mercy of whoever is sent on that day to give her 15 minutes of attention, who sees her family only on high-days and holidays; will sit in their chair, look at the four walls and in a desperately lonely moment won’t feel the tear splash into their lap; ‘I’m going to die… the district nurse knows I am and I am frightened’… …So, what do we have? A complete stranger turns up nearly an hour late and says; ‘Hello, how would you like to die?’ If this is your NHS it sure as hell ain’t mine. I am incandescent…”

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We Say No to uncompassionate form filling

So how can we make form filling more compassionate?

It’s important we all recognise the enormous value for Patients when we effectively document care but we must all refuse to stand for uncompassionate form filling.

Here’s a few suggestions for ways to make it all a lot more compassionate, if you have any of your own please feel encouraged to share them in the comments below:

> Patients need to be allowed access to the health record information carers are using to make decisions about their care.

> Forms must be accessible anytime anywhere and designed to be easy to use as this helps Patients choose when and where to complete any form filling, who they’ll complete it with (eg. on their own, with their carers and/or loved ones, etc.) and have the ability to make changes (eg. it should be presumed that I might want to independently change my responses at a later time).

> Interaction needs to be built in. As we move beyond printed paper forms we also need to move on from their static design. Branched Q&A’s avoid the need to read/skip questions that are irrelevant and feedback can be easily captured to help Patients/Carers make suggestions about how the data gathering is being done. It’s no longer just about enabling Patients to read what their Doctors write but it’s also critical that Doctors can read what their Patients write.

> Let me have a copy of everything I share with you.

> Make it clear what you’re doing with the information you’re collecting about me and limit it to enhancing and personalising my experience of your care services.

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