Hospital visits: necessity or nice-to-have?

Daughter visiting mother in hospital

Hospital visits are in jeopardy again in certain parts of the country. It is easy to understand why hospitals wish to reduce risk of spreading the virus, but the damage done to confused and scared patients is often irreversible when no-one is on hand to speak on their behalf. A hospital stay for someone living with a condition like dementia is already traumatic enough, and at a time of immense pressure on hospital staff who clearly cannot be expected to find the time to sit with a person and reassure them, odds are a stay in hospital will significantly worsen their condition.

No hospital wishes to send home a patient in a worse state than when they arrived but sadly that is often what happens, even prior to the pandemic. It is the worst place for a person with dementia to be, and the longer they stay the lesser the chance they’ll have the same level of independence on returning home, or even be able to return home. Dementia is rarely the cause of a person going to hospital, but it is often the reason they can’t leave.

Many hospitals have signed up to a code drawn up by Johns Campaign that gives carers the right to stay with their loved one. Covid should not be a reason for withdrawing that right (obviously subject to a negative test) but it appears to be happening. Even where the hospital policy allows for exceptions, the message may not make it down to ward level and primary carers are denied access.

On the other hand, it is not always practical or possible for a carer or family member to be at their loved one’s side 24/7. I fully admit to a sense of relief at the prospect of an uninterrupted night’s sleep when my late husband Geoff was admitted for an operation that required an overnight stay. At the time I had no idea of the potential for disastrous consequences a hospital stay can have for someone with dementia, but I also had other commitments that meant I could not have stayed with him even if it had been offered.

I would always encourage carers to request the right to be with their loved one if their circumstances allow. Hospitals need to recognise the value of a carer’s presence for the wellbeing of the patient.  But there are other things relatives can do to mitigate the effect of a hospital stay, such as sending in with the person photos and familiar items that may give them comfort. Best to avoid irreplaceable items when possible however, given the tendency for things to be misplaced.

There have been some excellent blogs written on this topic, amongst them this one by DementiaWho: https://dementiawho.com/dementia-hospital-emergency-go-bag/

Finding a way to share information about the things that matter to a person can make a big difference. There are a number of resources available to help, including the one I developed in the light of Geoff’s experience, called the Mycarematters profile. I created it online because of the numerous times I heard about paperwork being lost or left behind, plus it makes it easy to update and share. It can be viewed online by anyone with your name, date of birth and Mycarematters code. It can also be printed out and is designed to fit on one side of A4 because staff do not have time to read a long document, and a single sheet of A4 can be displayed by the bed.

Whichever method you use, providing information about a person’s needs and preferences when they are not in a position to communicate those things for themselves can help hospital staff avoid exacerbating what is already a stressful situation.

And of course, this is not just about people with a dementia diagnosis. Any of us can end up in hospital and may temporarily be unable to communicate. Creating a profile of your needs and preferences is one of those tasks we should all complete. We include a paper version of the Mycarematters Profile for those not wishing or able to use the internet in the My Future Care Handbook.

Still procrastinating?

We were ready to start trials of the My Future Care Handbook – we had programmes lined up with a hospice, a hospital and with groups supporting people being cared for at home. It was March 2020 and I’m sure you don’t need a reminder of what happened next. All activity beyond core activities were cancelled at every health and social care organisation and we had to change tack.

We’d had a lot of input from all manner of people at each draft of the Handbook but we now needed to put it through its paces. Over 100 people generously agreed to complete the Handbook and report back on the experience. Some completed questionnaires, some emailed back their thoughts… and a lot went silent.

I started emailing people. Many admitted they’d been meaning to get on to it but hadn’t found the time. Remember, these were all people who had declared a need to make plans for their future, who wanted the peace of mind they knew they’d achieve once their decisions had been written down and shared.

I suggested we find a time for me to get their feedback by Zoom or on the phone. For many, that was the nudge they needed to open up the Handbook and make a start. Some hadn’t managed to get very far when we spoke, we chatted and agreed to speak again a few weeks later. They admitted they needed that date in the diary to galvanise them in to action. It is well understood that asking someone to check up on you is an effective way to beat procrastination. We don’t want to ‘fail’, or as Sally Knocker said, ‘we all like to please teacher’.

The initial outcome from this exercise was incorporating the various improvements that people suggested for the Handbook. The current version is very much stronger as a result – I’d like to say a big thank you to all those who contributed.

Another outcome was that at least 60 people are better informed, had conversations and made decisions about their later life and future care, according to their priorities. Some wrote a bucket list and what they’d like to have happen at their funeral. For others it was the more legal documents like powers of attorney and advance directives. Whether they worked their way through the entire Handbook or just tackled one task, we’d helped them move forward in some way.

The Handbook has been very popular and for some its arrival in the post will have been all they need to get on and complete some or all of the various tasks. But as we started to spread the word I couldn’t help thinking that a significant portion of Handbooks would arrive and be put to one side to be dealt with ‘soon’ or ‘when I have a moment’. (I do understand, by the way, that for some people finding the time, perhaps if you are a full time carer, is a real issue and not always a hollow excuse to keep putting something off.)

Having seen the power of those initial phone calls to nudge people into action, it seemed obvious to find a way to to offer that to more people. We did some fundraising and created what was perhaps the most important outcome of working with that large research group: My Future Care Buddy Service.

We are now able invite people to sign up to a one-to-one or small group sessions with a trained Buddy who will support you to identify and meet your priorities in later life and future care planning. Using the My Future Care Handbook as a structure for the conversation, we offer up to 4 sessions of up to an hour each and by the end of each session the Buddy and the person will have agreed an action plan to be completed before the next session.

Whether one-to-one or in a small group you will develop an an action plan with your Buddy and get another date in the diary so they can follow up with you and see how well you are progressing.

As one happy participant said: “Thank you Nancy for your understanding and guidance. After our session today, I got cracking and did a lot more… You are doing a brilliant job and I much appreciate it.” 

We have just announced the dates of the next three group sessions on Zoom and you can reserve a place, or request a one-to-one session, by emailing info@mycarematters.org.

  • 8th October 1 pm
  • 11th October 1 pm
  • 15th October 1 pm

A spectrum of needs

It has become quite fashionable these days to apply the concept of a spectrum – traditionally considered in terms of autism (as in being on the autistic spectrum) – to many aspects of our lives. So whether we’re talking about our sexuality, character traits or intelligence, there is a recognition that we may not conveniently fit into one category or another. Having a strong dislike of boxes and labels, I rather like this loosening of definitions, and I’m not surprised to find it true of people’s position on planning for later life as well.

People’s priorities differ wildly as to what is important when discussing the future, so asking what matters to them regarding later life inevitably throws up a huge variety of responses. They might be discussing appropriate adjustments to their home with an occupational therapist but have never considered what level of treatment they want if they get ill. Someone else may already have gone round the local care homes, picked out their favourite and got an Advance Decision in place but is in no hurry to appoint a power of attorney.

How far, and in which direction

There is also huge divergence in where the boundary lies as to how far people are prepared to take the conversation, and in which direction. “I’m not prepared to think about dying but I know exactly what music I want played at my funeral”, “I know I should… I’ll get round to it one day”, “No thanks, it’s not something I’m prepared to talk about”, “I must get this done now, before I need it”, “I’ve got it all sorted and my family know exactly what I want” and so it goes on.

No surprise then that attempts to increase the numbers of people completing advance care plans meet with limited success, when the forms tend to focus on collecting information the healthcare system would like to know, and may fail altogether to address the issues that are important to the individual.

Our approach with the My Future Care Handbook has essentially been one of: ‘Here is the information you need to make some informed decisions about your future, and the tools to act on those decisions. It is now within your power to choose which decisions and actions you wish to take, and when’.

We have aimed to cover everything, with a clear message that not all sections are relevant to everyone. From feedback received it seems there are a variety of approaches taken in terms of how it is used: some like to start at the beginning and work through to the end, others flick through and use the page markers to identify the sections they want to focus on first, and then there are those who dip in and do a bit at a time.

Keeping the scope as wide as possible makes it potentially relevant for every adult, regardless of age or state of health, and that approach was welcomed by Wendy Mitchell. “The front cover does not say it’s for people with dementia, people with cancer, people that are dying. The front cover is saying it’s for everybody.”

That wide remit called for input from a wide range of experts, both professional and by experience. So we were extremely fortunate to have a large group of people give generously of their time to help shape the content, tone and format of the Handbook, and it is undoubtedly the richer for it.

A thousand voices (well, a hundred anyway)

The value of this diversity of input was one of the themes to emerge during a Zoom chat with a group of people living with dementia, who had kindly put the Handbook through its paces.As Agnes Houston put it: “It’s very clear this wasn’t done by a medical professional alone. The carers voices are through it, the voices of the people with long term conditions are through it. That’s what makes it so precious. You usually either get a carer’s view or a professional medical view or you get the view of the person with the long term condition. This is the first time I’ve ever seen anything where it is so, so inclusive.”

Wendy Mitchell agreed: “You can tell the minute you start looking through it that it’s not healthcare professional led and that immediately brings you in because it’s not some official thing that you are being told to read.”

That’s such valuable feedback for us, because we knew it would not be enough to provide a fact-filled resource, it had to be something that was going to get those of us reluctant to consider our future (and that’s, let’s face it, most of us) to make a start.

Alison Barclay, carer of her husband Gordon who lives with dementia, admits she’s a procrastinator and would rather do housework than start planning for later life… and she hates housework! But even she acknowledged that ‘if this book doesn’t get me doing it then nothing will.”

Sarah Reed, founder of REAL Communication Works, found she’d completed five or six pages before she’d even noticed. “It’s just so easy to follow. I’ve been thinking about my own will, my own needs… and what was surprising was how easy it was. Filling in a form on a page where you are being asked straightforward questions just makes it so simple. But if someone had asked me what I want, I wouldn’t have the faintest idea!

I didn’t realise…

This is something we frequently hear about one or more of the topics covered in the Handbook, and often from people who thought they’d covered most things. Alison didn’t realise there are now doulas for dying as well as for birthing. Wendy remembered she had not updated both her daughters about her funeral preferences, Frances found it made her think of things she hadn’t considered before.

Person-centred…

Because the Handbook is designed as an interactive workbook, what you end up with is a set of documents and decisions that are unique to you, reflecting your wishes, needs and aspirations for later life, end of life and beyond.

So, one size fits all? That’s perhaps going too far, but what we can say with confidence is that there’s something for everyone in the My Future Care Handbook, and whether you just fancy creating a bucket list, want to prepare a complete Advance Care Plan or need a prop to take the awkwardness out of the conversation with a loved one, all the feedback tells us it will work for you.

It’s arrived!

Handbook-cover

It’s taken dozens of interviews, conversations and consultations, hundreds of survey responses, umpteen articles, reports and books and numerous conferences… and finally we have something to show for it all! Our all new My Future Care Handbook is now available, a fully comprehensive and interactive workbook to help people think about, make and share decisions around their future care.

Originally we set out to produce a guidance tool for health care professionals to help them initiate conversations around advance care planning. However, a major part of Mycarematters’ mission is to empower and engage individuals so as to enable them to take an active role in their own care. It therefore quickly became clear that we should first and foremost be putting this information into the individual’s hands. It needed to be a jargon-free easy read, taking an unthreatening and straightforward approach to what can, for some people, be a challenging topic. Our reviewers think we have got it right:

“Lovely clear, step by step guidance to follow”      “It is user friendly, simple and not intimidating”
 
During our research we learned just how difficult everyone finds it to broach the subject of end-of-life care. Strange, isn’t it, when it’s the one thing that is going to happen to absolutely all of us? And by not discussing how, where and with whom we wish to spend our last days, whether it is quality or quantity of time that is more important to us, we leave our families in an awkward position of not being sure what we’d have wanted, when we may have lost our capacity to make decisions for ourselves. It is said that a good death means a good bereavement, and who would want to make it even harder than it already is for their family?
By providing clear and concise information with practical tasks, action lists and forms to complete, the Handbook offers a gentle and unthreatening way to start a really important conversation. After all, despite some people’s belief to the contrary, talking about it really doesn’t make it more likely to happen!
 
Our research also revealed how much confusion there is about the decisions available to us regarding later life generally. So we set out to cover all the topics that we might want to consider as we approach our later life, with the focus just as much on how we can live well as how we might die well. By making it relevant even to those of us who have yet to face our own mortality, it encourages us to start thinking about these issues much earlier than tends to be the case.
We found a lot of wonderful materials both online and in printed form, but none that put it all together, in an easy-to-use format, so our goal was to provide a resource that covers it all, and here, again, our reviewers are approving:
 
“It is so comprehensive and an absolute mine of useful information.  It will be really helpful to have all of this information in one place…” “There is so much useful information in it!”   “I really like this and the way you have pulled everything together. There’s nothing else out there that does anything like this.”
 
We offer bulk prices for health and social care organisations, hospices, care homes, home care services and community organisations running events like death cafes, with the option of creating copies in your own branding if you wish.
Thanks to the support of Crawley Borough Council and Healthwatch West Sussex, we are able to offer copies to residents of West Sussex for just £4.95 per copy plus P&P (whilst stocks last). Use this discount coupon: WSxHandbook when you check out online. This offer is limited to one Handbook per household. If you wish to order more, please email us on info@mycarematters.org to explain your circumstances.
Buy your copy now, so you can plan for tomorrow and live for today.

Planning for the future matters

Beth Britton, award-winning campaigner, speaker and expert in ageing, health and social care talks about her own experience of future care planning and reviews the soon-to-be-released My Future Care Handbook…

Much like most people who are reading this blog, I don’t like thinking or talking about a time when I or someone I love might be very unwell, lack mental capacity or be approaching the end of life. Yet as my dad always said: “There are only two certainties in life; death and taxes.”

As you might have guessed, my dad was a bit of a pragmatist, which was helpful in terms of dad openly telling us details like where he wanted to be buried long before that time arose. But my dad’s pragmatism didn’t extend to writing down details of his future care wishes, probably because he didn’t expect to spend the last 19 years of his life with vascular dementia.

Dad’s dementia, of course, meant that he eventually lost mental capacity, and like many families, because we neither foresaw this nor had any advice that it would happen, we never instigated any future planning with dad. The result was that dad had no Power of Attorney, no written plans for the type of care he wanted (or didn’t want), and ended up spending the last nine years of his life in three different care homes before he died in April 2012.

Given that my dad was a very private person I don’t think that he would have chosen to become a care home resident, but sadly without documentation those decisions were taken out of our hands by doctors and social workers, and we were left to make the best of the situation. Once dad was in his first care home the trail of paperwork began, and over those nine years countless care plans – including end of life plans – were made, mostly with our input, but often what we contributed amounted to guesswork as we tried to imagine what dad might want. Yes, we knew dad better than anyone, but there is still no substitute for the person’s own voice.

To put this into perspective, the only document from the My Future Care Handbook that we ever had for my dad was a Do Not Attempt Cardiopulmonary Resuscitation (DNR as it was abbreviated to back then), and that was only because the GP at his care home came to speak at one of our Relatives’ meetings and discussed dad’s increasing frailty with us afterwards, recommending that we agree to a DNR which the GP then signed.

In the end did it matter that we didn’t have more documents? As dad’s life ebbed away and in the aftermath of his death http://d4dementia.blogspot.com/2012/06/end-of-life-care-very-personal-story.html in many ways it didn’t, but there is no doubt that having documentation of someone’s personal wishes takes the guesswork out of answering all of the questions you’re asked at what is an absolutely awful time.

These issues feel like they’ve come to greater prominence in the nearly 8 years since my dad died, and I know that the My Future Care Handbook is the culmination of a huge amount of research and work that Zoe, her Mycarematters team and the many professionals who’ve supported it have put into creating what is a fantastically comprehensive resource.

The Handbook is literally a one-stop-shop for anything and everything future care related, and in my feedback I struggled to find much more to recommend for inclusion. What makes this resource particularly useful is how accessible it is. It takes what is a really tough topic and makes it as easy to address as it’s ever going to be.

Of course all the important legal elements are within the Handbook, as well as the guidance multidisciplinary health and care professionals would need to support someone effectively, but it was the less obvious details that I really liked. The ‘Bucket List’ and the ‘Create A Play List’ suggestions were two of my favourites – these are more ‘fun’ activities that make the heavier legal elements easier to approach. And, as you’d expect, the connection with the Mycarematters profile is there, meaning these documents seamlessly link up.

Could I have sat down with my dad and gone through the Handbook without either of us feeling awkward? Yes, I think we could have, and I will probably show the finished product to my mum when it’s available. As for me, having made a Will a few years ago – prompted by my mum updating hers – I guess I’ve begun to think about the future. Our next future care ‘project’ together, for want of a better way of putting it, is for my mum to complete a Power of Attorney. It’s been on our radar for ages, and reading the My Future Care Handbook was another reminder that it will have to be addressed, however hard it is.

To order one or more copies of the My Future Handbook click here.

About the author:

Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care https://www.bethbritton.com.

Photo credit: National Care Forum Managers Conference 2019