BLOG: In the light of experience - InterRAI and the final 1,000 days of life

In this blog Dr Iain Atherton (co-director for the Scottish Centre for Administrative Data Research) shares his reflections on our recent seminar, and the potential data can hold for improving the final years of life.

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How to enable future health and social care services to provide person centred care often feels an impossible ask. Earlier this month, Professor Matthew Parsons gave hope that the impossible is possible in one of our centre's Autumn seminars.

For me, his description of the InterRAI initiative in New Zealand gave a realistic and achievable image for what might be done in Scotland. This initiative, based on the ideas of Brian Dolan, demonstrates how data can provide information genuinely useful to practitioners, their patients, and so to policy makers. As a nurse, and now as an academic who is one of the co-directors of the Scottish Centre for Administrative Data Research, I think he provided a practical and realistic vision of what can be done in Scotland.

So what has the New Zealand work involved?

• An assessment that is given on anyone aged 65 years or over who has an illness or disability lasting six months or more.
• An algorithm then provides indication if the person involved is almost certainly in their final thousand days of life

Indication that the person is in his or her thousand days of life is highly reliable and robust.

So why is this indication helpful?

Flagging that a person is almost certainly in their final thousand days enables informed conversations between practitioner -  be it a medic, nurse, or other trusted person - and the person involved. That conversation is not the difficult one associated with very late indication of impending death. Matthew highlighted that most will not be surprised other than that they might have so long left!

Decisions on improving those final days can then be so much better informed. Plans can be made so as to avoid treatments that might use much of that remaining time or have unpleasant side effects. Focus can switch from acute care to giving value to those last days.

The extent to which the use of InterRAI in this innovative manner improves lives and reduces unnecessary or even harmful care has yet to be established. Matthew and his colleagues are adding InterRAI data to New Zealand’s impressive Integrated Data Infrastructure. Resulting analysis will be give clear indication as to the impact of the initiative and the resulting informed decisions made by patients themselves.

As a registered nurse, I do look back to those whose care I have been privileged to be involved. I wonder whether they would have decided to go through the surgery or accept the treatment suggested had they realised their proximity to the end of their lives, if the discussions between patients and surgeons, consultants or others would have been very different had we had a resource such as enabled in New Zealand. A resource that could enable those precious final days to be given to quality of life rather than hospitalisation or painful treatments.

The ideas build on what is already happening in Scotland including realistic medicine and anticipatory care planning. It recognises the preciousness of those final days and provides readily understandable information to facilitate informed decision making.

I think it is worth serious consideration.

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This blog was written as part of the work of the Scottish Centre for Administrative Data Research, within the ADR Scotland partnership, funded by UKRI/ESRC.