Should we be planning for what happens after death, or before?

We carried out a survey recently, amongst people living with a life-limiting disease such as dementia (and carers, on their behalf) on their attitudes, knowledge and any actions they have taken regarding their future care. We were particularly interested to find out about the barriers that many of us experience in moving beyond “thinking about it” to actually specifying and recording how we want things to be done for us when we are no longer able to do them for ourselves.

It is a relief to see that most people living with dementia have at least written a Will. Unsurprisingly, 84% in this cohort is well above the 46% (1) of adults across the UK who have done so, and an indication that people do recognise the importance of putting their affairs in order when they have been diagnosed with a terminal illness.

More worryingly, only 16% reported having a full set of advance care planning documents in place. In other words, we place more importance on leaving our instructions about what is to happen after we die, than planning for the days, weeks, months and even years when we might live in a state where we have lost the ability to communicate our wishes.

The survey also revealed that whilst 70% of people who are living with dementia have a financial lasting power of attorney in place, only 64% have arranged a healthcare lasting power of attorney. This seems to suggest that people find it easier to make provisions around their money than their future care and quality of life.

Why should this be? The fact that 40% of respondents who care for a person with dementia are not familiar with the term “Advance Care Planning” provides a clue. Many people may be unaware of the options available to retain some level of control over their future care.

One of the most startling findings in our survey is that the majority of respondents say that they will either “get around to planning their care at some point”, and/or they will “let their family make the decisions when the time comes”.  We’re obviously all either optimists or fatalists, or even fantasists?

It’s strange how we don’t really believe in our own mortality. Of course we ‘know’ that death is a 100% certainty for us all, it’s only a question of how and when. But we can’t quite bring ourselves to recognise that what we see our grandparents, parents and other relatives go through is actually going to happen to us. Why else would the 79-year-old lady I was chatting to recently be so relaxed about not yet having a lasting power of attorney in place? “After all”, she said, “I’m perfectly fit and well at the moment.” And long may she continue to be so. I felt it was not my place to point out to a complete stranger that the risk is obviously increasing with each year of an event taking place that will make her – or more likely her family – regret not having a lasting power of attorney and other documents in place.

Michael Hebb, author of ‘Let’s Talk About Death Over Dinner’, describes western society as ‘death-illiterate’. And in not discussing death, he says, we are not empowered to make decisions. (2)

How then to become ‘death-literate’ and empower ourselves to make those decisions that can considerably improve our experience of later life and eventually our end of life? Perhaps one solution is to have those conversations much earlier. NHS guidance calls for advance care planning to be done in the last year of a person’s life. This may already be far too late to do anything other than crisis management, particularly where a person has lost the capacity to make decisions for themselves. More to the point, it can also be a very awkward topic to raise when you may be focused on doing everything possible to stay alive.

Raising the subject when we’re feeling hale and hearty on the other hand, makes it much more likely that we’ll have a more relaxed and open conversation, because it feels so much more hypothetical. But even then there is uncertainty, our survey confirmed, around the decisions to be made and the various documents to be prepared. Whilst the conversation itself may hold a certain merit, its real value will only be realised when decisions are recorded and then stored in such a way as to be accessible when required by those providing care and support.

We’re taking the learning from our survey and other research to produce the My Future Care Handbook, an interactive document designed to help people make informed decisions around their future care, and then record, store and share those decisions as appropriate. Creating a Mycarematters profile will become one part of that process. We are grateful to everyone who completed the survey for helping us create something that is helpful, valid and relevant.

We look forward to consulting further with people living with dementia, their care partners and health and care professionals when we have the first draft of the document available. If you would like to share a comment or idea about the survey, or you’d like to be involved with the project, please get in touch: info@mycarematters.org. In the meantime, there is something you can do straightaway to start taking control of your future care: create a Mycarematters profile. You never know when you might need a stay in hospital and be unable to communicate your needs. It’s quick and easy to do, and it’s free! Go to https://www.mycarematters.org/register.

Posted by Zoe Harris

(1) https://levisolicitors.co.uk/news/new-statistics-about-wills-in-the-uk/
(2) https://www.theguardian.com/lifeandstyle/2018/oct/30/remember-you-will-die-tips-for-better-death-michael-hebb

Should personal information be on view?

The carer’s eyes lit up with delight as he spotted that Geoff had been an RAF fighter pilot in his early career. John was obsessed with planes and he chatted away to Geoff about things that meant nothing to me but clearly sparked a response in Geoff because he was beaming and nodding his head.

I’d always felt that Geoff, despite his dementia by now being quite far advanced, was able to understand more than people thought. Because he was generally non-responsive people stopped trying to engage him in any meaningful way, but here he was, becoming quite animated, lifting his head up and making eye contact.

John only knew about Geoff’s flying career because I’d made a note of it on the Care Chart on his bedroom wall. Until I’d put the chart up that kind of information would have remained buried deep in his 100 pages plus care plan in a file on the shelf in the manager’s office. I’m sure John would have searched for a way to engage with Geoff because he was that kind of carer, but this give him an instant way in, and I suspect both of them will have experienced a feeling of wellbeing that lasted long after the brief conversation ended.

It is experiences like those that lie behind our insistence that a person’s Mycarematters profile is visible to all those interacting with them, whether in hospital, in a care home or in their own home. Geoff was in a care home and his care chart was on view to all staff members and visiting professionals. It was particularly helpful to bank or agency staff who had little opportunity to get to know the people they were caring for.

It is even more important during a hospital stay, which can be a highly stressful and confusing experience for someone living with dementia, to provide staff with a way to meaningfully engage with the person they are caring for. Mycarematters enables staff to see the person beyond the dementia, but if that information is hidden away in the file from the people that really need it: the housekeeping staff and volunteers as well as health care assistants, nurses and doctors, those opportunities for meaningful engagement that result in a release of healthy endorphins aiding a quicker recovery, will be missed.

This approach has recently been endorsed by NHS Improvement in their Dementia Assessment and Improvement Framework which recommends that key at a glance information is displayed above the bed (with person’s or carer’s agreement): preferred name, likes, dislikes and enhanced care needs (without breaching confidentiality).

That last point about confidentiality seems to be a bit of a challenge: can one display this information and not breach confidentiality? We believe we do achieve that with Mycarematters. When displayed with something like our Display Board, a person’s Mycarematters profile is legible only to those standing reasonably close. In a ward environment it cannot therefore be read by people just passing by.

For those who want still further confidentiality we offer the Twist-N-View hanger which displays an attractive picture on the front with a pocket for a person’s Mycarematters profile on the reverse. So the information is readily to hand but can be turned to the wall when not needed.

We heard a lovely story from one of the first hospitals using Mycarematters, where a member of housekeeping staff serving tea to an elderly lady living with dementia noticed on her Mycarematters profile – on display behind her bed – that she had been brought up on a farm. The member of staff had also been brought up on a farm and spent a delightful few minutes reminiscing with the lady about old times. The details of that conversation may have slipped from the patient’s memory within minutes, but the sense of wellbeing will have remained with her for a lot longer. Those precious moments don’t happen when information is buried away in the file.

Link / back to Mycarematters website.

Zoe Harris cared for her late husband Geoff at home for about five years before he moved to a care home for what turned out to be the final 13 months of his life. It was his experience of hospital stays, respite care and his final months living in a care home that led Zoe to develop the Remember-I’m-Me Care Charts and then the online service Mycarematters.

Mycarematters is shortlisted for Innovating for Ageing competition

Mycarematters has been shortlisted as one of 5 finalists in a ground-breaking national competition run by retirement income provider Just Group and the International Longevity Centre (ILC).

The Innovating for Ageing competition was established in January 2018 by Just Group, with support from ILC, to identify innovative solutions to the most common, intractable problems faced by vulnerable people in later life.

From the 77 submissions entered by policy experts, tech innovators and academic institutions, Mycarematters was chosen as one of the 12 strongest entries by the competition’s independent Advisory Board. We then pitched to an expert judging panel and were one of the five finalists invited to attend the Awards ceremony, hosted by the comedian and broadcaster David Baddiel in London on January 31st.

We were delighted to hear the judges’ endorsement of Mycarematters as a great and simple solution to the important issue of digital and advance care planning. They also commended the different formats available (ie online and offline), meaning there are no technical barriers to people using the solution.

To return to Mycarematters home page click here.