Advance Care Planning – why it matters to me by Bo Mandeville
Introduction
One of the great joys of Twitter (and no, I still can’t call it X), is the wonderful connections made. I have had the joy of talking with healthcare professionals in this country and further afield, many if which have led to incredible podcasts. I have also had the opportunity to meet many people who have been generous enough to gift me with their stories, some will remain simply in my heart and mind and others can be shared with permission.
One story to be shared is from Bo, we connected first through a Twitter and had follow up correspondence. Bo responded to a Tweet I posted about Advance Care Planning in the summer of 2023, since then we have explored options to share Bo’s story more widely with the aim of raising awareness about Advance Care Planning – the importance of doing it and challenges involved.
Due to Bo’s health, our initial idea of creating a podcast wasn’t feasible, following discussion we came up with the idea of a blog in the style of a podcast. What you can read below has been created from our conversation via email.
Bo begins by describing who he is and the neurodegenerative condition he has been diagnosed with. Bo then shares why Advance Care Planning is important to him and the challenges he has faced in seeking appropriate care. Bo closes the blog with a call to arms for us all to recognise the importance of planning ahead and for the availability of support to do so.
Thank you, Bo, for your reflections and insight.
Image shared by Bo
Clare: Hi Bo, thank you for creating this blog, can we start by you telling me a little about yourself?
Bo: Here is my bio to tell you a little about me
In 2013 Bo Mandeville moved from Ireland to North Wales’s Llŷn Peninsula to become Head of the National Writers’ Centre. After less than two years in post, due to a neurodegenerative disorder he had to retire.
He still lives, reclusively, in the area with his wife.
For years, true to his ethos and modus operandi, his land art pieces and installations were left anonymously, displaced in various landscapes and locations — forests and beaches — to decay and become one with the environment, the stories and interpretations fading with them. Similarly, he occasionally would include poems and short fiction pieces without signature or name.
Intermittently, from the late 80s to 2013, he managed several multidisciplinary arts’ events, was programme director for international film festivals and curator for cultural institutions in Ireland, Belgium, France and the US.
He wrote and produced films, was commissioned script editor, production development advisor and member of the Board of Directors representing Ireland with the European Coordination of International Film Festivals.
Film, literature and art remain his true passions.
After completing an MA in cultural anthropology, he first worked as a freelance journalist and researcher for a wide variety of international publications, specialising in film and contemporary music (including the rock scene of the late 80s), was briefly a radio producer and later concept and script developer for TV in Belgium, France and Ireland.
Clare: can you tell me some more about your neurodegenerative disorder and how it impacts you?
Bo: While clinicians have been unable to affirm a conclusive diagnosis, the consensus seems to be: it’s a neurodegenerative disorder very similar to or on the spectrum of Corticobasal Degenerative Syndrome (CBS/CBD). You can find out more about the condition here
Part of the neurodegenerative disorder with me is loss of cognitive ability, which most likely will mean that at some stage I won’t be able to clearly express my thoughts and wishes.
This is an excerpt from some of my creative writing to describe what living with CBD feels like for me:
“My days are very short now. About eight hours on a good day. Which means I am in bed for sixteen, asleep or resting, but regardless, insentient, semi-conscious at best. Unaware of the world around me, existing in a haze. Like mountains in cinematic shots, when the director wants to evoke mystery, the peaks blurred by a constant haze. Life eludes me in those hours. I usually wake up before 5:00. Often, my rest is interrupted by sudden severe spasms causing extreme pain which can last for an hour or two. I map out these intense agony moments, spikes and dips revealing a new topography, plot them as a cartographer.”
Clare: We first connected in discussions around Advance Care Planning – can you explain why Advance care Planning is so important to you?
Bo: Knowing I won’t always be able to clearly express my thoughts and wishes, it seems best to carefully plan. For instance, I don’t want feeding tubes (PEG) inserted, when reached that point where I can no longer feed myself, have some conscious independent life.
Though I admit my wishes and advance care planning isn’t set in stone. It’s a dynamic process. And to me, that’s where it may be the most important. To have the ability to make decisions when still able, adjust to the environment and changes, and know that it’s well considered.
Also, in many ways, it’s about those who care (the carer) too. My wife and kids will know I have thought things through and made my wishes clear. They may or may not always agree, but it’s expressed and understood.
Clare: What has been your experience of Advance care Planning?
Bo: Initially I felt very alone with it. Nobody told me much about advance care. GPs only brought it up after I asked how to get my wishes known to them. District nurses, whom I see monthly or more, did talk about it some. They also gave me a leaflet which was a starting point. And I researched online too.
At some point, 18 months ago, one of the senior nurses suggested a review by a palliative care physician. Mainly to discuss pain management. It took a few weeks before she — a young junior doctor training in palliative medicine — visited, but it was worth the wait. She explained the process and pain meds options, but also answered many questions about advance care planning. Again, with more information I was feeling I could clarify my wishes.
But, she was told by a consultant (very dismissive attitude) I didn’t need ongoing palliative care yet… and so it was a one off (two visits and a follow up call)
My neurodegenerative disease has progressed slower than expected. Essentially, I have had more time to adjust. But also, more time to consider what the future with loss of independence and abilities will mean. And advance care planning is an essential piece of this.
Clare: Can I just go back to the comment by the consultant, that you didn’t need palliative care? I feel both surprised and sad to hear that. Palliative care input would seem a great idea to enhance quality of life and plan ahead for someone living with CBD. Have you managed to stay under the care of a palliative care team?
Bo: Sadly not
Sadly, because I could benefit from the pain management and assistance.
I can’t thank that junior doctor enough. She was brilliant. She contacted me when her placement was up and before moving on.
Clare: Can I ask what specifically you have done for your Advance Care Planning, for example:
· A statement of wishes and preferences
· An Advance Decision to Refuse Treatment
· Lasting Power of Attorney
· Legacy work (will, or actions to protect your creative work)
Bo: I filled out a form, asked one of the GPs to review and sign and keep a copy. It’s not perfect (used online template) but I consider it a start, particularly about refusal of specific treatment and some resuscitation etc.
I have not done a Lasting Power of Attorney and need to find out and do more on this.
Legacy work, this is somewhat complicated and needs way more reflection. But consider it action for near future.
Clare: What key message would you like to share?
Bo: Having a neurodegenerative disorder, in my case with slow progression I have had a lot of time to reflect and prepare. To adjust too. Obviously, it’s uncomfortable because my body and my cognition gradually worsen. Even when it plateaus for a few months, it never improves.
So that time and all adjustments have made me very aware of the importance to communicate wishes. Not only talk about them. While that’s important too, not in the least for those close to you, it is key to write them down. And in a way they will be honoured.
It’s a process rather than a one-off recording. I initially thought it was about making sure I was clear and all knew. But things can change and decisions too. It’s good to acknowledge that. So Advance Care Planning needs to be flexible and can grow. And same goes for the discussions with loved ones. And those become less difficult because they know it’s a process.
But for those who suddenly become ill, the time isn’t necessarily there. And I think everyone should think about what they would want. And not want. Both are equally valid. What you wish and what you refuse.
So, I am an advocate for people to have their wishes known and record them in a plan. It’s a plan that can be changed. Many times. But at least there is one.
Clare: What key message would you like to share with healthcare professionals?
Bo: Very much same. Advocate!
But also, I can’t say it enough, how much I feel professionals don’t listen enough and can be quite dismissive. I fully understand the pressures and challenges with under resourcing and time. But it is vital for all to make time to have these discussions.
Clinicians could start with telling patients where information is available and reliable. I had to search myself. A palliative care doctor did help, but some of the first consultants were dismissive. Because my diagnosis wasn’t straightforward nor conclusive at first, they didn’t see a need to discuss. Very frustrating. Because I knew I wanted to have that peace of mind.
It is never too soon nor wrong to record wishes.
But it all starts with information and support.