Advance Care Planning stories
Caroline's story...
“Post serious illness recovery I read my acute hospital discharge letter and learnt that during my 3 and a half month hospital admission I was deemed to lack full mental capacity. As a registered nurse this greatly informed my decision to pursue Lasting Power of Attorney for myself and with encouragement my husband to do his too. I feel more reassured that if the time comes and I loose my mental capacity it will be my daughters and husband that are approached to support my health choices. Now working in Palliative Care I aim to complete an advanced care plan to sit alongside my LPA. It took me to be seriously ill, close to my own death and reading my discharge letter to prompt me to ensure I had facilitated what I would want in the event I can no longer make my own decisions.
There are also the stories I have heard of what happens when conversations or end of life care planning has not taken place. The trauma it can leave for a loved one to have to administer CPR on a very ill person, and fail to sustain their life (which would be an unrealistic possibility anyway) is heartbreaking to see.
Having a plan in place and conversations with those dear to us can, in many cases, truly support in us reaching the end of our life, allowing and accepting it to be the natural process it can actually be.
In years gone by we would be present when our elders died and it would mostly be in the home and not a clinical experience. that said, it is a personal choice on whether a hospital situation is preferred or whether one would wish to be at home.”
– Caroline Margaret Howell
Beverley's story...
When I started working as a Funeral Celebrant back in 2015, it soon became clear to me that not talking to your family about your end of life and after death wishes leaves the potential for a lot of anxiety and even upset amongst your family and those dear to you. Many of us have heard the throw away comment ‘just put me in a box and throw me on the muck heap’ OR do ‘what you like I wont be here’ – whilst these comments may be familiar they are extremely unhelpful for anyone that has to arrange a funeral. It also leaves the stage set for families to disagree about what to do for the best.
There are also the stories I have heard of what happens when conversations or end of life care planning has not taken place. The trauma it can leave for a loved one to have to administer CPR on a very ill person, and fail to sustain their life (which would be an unrealistic possibility anyway) is heartbreaking to see.
Having a plan in place and conversations with those dear to us can, in many cases, truly support in us reaching the end of our life, allowing and accepting it to be the natural process it can actually be.
In years gone by we would be present when our elders died and it would mostly be in the home and not a clinical experience. that said, it is a personal choice on whether a hospital situation is preferred or whether one would wish to be at home.
– Beverley Bulmer
Matthew's story...
My late Mother Danthe who died on 14 May 2010 was fortunate enough to slip away in her own home. I am glad to say that she had her affairs well in order, with a recently considered Will and pretty precise funeral arrangements, along with some useful Inheritance Tax saving steps taken in the years before.
One thing she hadn’t done – with the benefit of hindsight – was Lasting Powers of Attorney, though happily in the event not needed, given good relationships between the Family and those caring for her.
– Matthew Charles Arthur Hutton
Rebecca's story...
As Wales 1st advance care planning CNS, I had the privilege of supporting people and those important to them to initiate document and share their plans for future care and treatment. I supported other professionals to learn the skills to have these conversations and still do every day, though now I work in Bath. However my professional role enabled me to have these important sensitive empowering conversations with my parents.
When 2 years ago my mum died suddenly and unexpectedly, I could confidently support my dad and family to ensure mums after death wishes and preferences were known and respected. This had a positive impact in the short term on us, helping us decide and navigate those early difficult days and weeks and longer term on our grieving, as we knew mum wouldn’t have wanted things any other way really which comforts dad still.
I will forever be glad I do what I do, for the impact it had on my family and hopefully many others now and in the future.
I’m #ACP all the way
-Rebecca ST
Anonymous' story...
“We had a 44 year old lady with ESRD who had been homeless and a drug user for 15 years.
I am writing this with very damp eyes and can only share through the emotional protection of anonymity, somehow not sharing my name makes it less real to me.
I am a palliative care nurse and have many, many years of experience in multiple palliative care settings; I am also a daughter, sister, wife and Mum.
Nearly two years ago my Dad, my wonderful Dad, had a stroke. One second we were a normal family, the next we plunged into a nightmare world. The stroke was serious, a big bleed. Dad was admitted to our local hospital and one in which I had worked as a Palliative Care CNS for may years. In every corridor I walked I saw ghosts of past patients and families and felt assaulted by memories.
Dad was unconscious mostly, periods of rousing were accompanied by excruciating head pain, witnessing it was unbearably painful.
On day two or three Mum was briefly out of the hospital and the consultant approached my brother and me. We were told Dad had a 75% chance of dying in the next 30 days. At this point I asked if we could refer Dad to the hospital palliative care team to step in and support with pain control – the swings created with IV morphine not effective in helping Dad. The consultant told me “we are not at that stage yet”. What stage? How much more poorly do you have to be to have help? Why is palliative care associated with dying and not good symptom control? It beggars belief that someone can be that poorly but yet not “ready” for palliative care. The consultant thought I was writing my Dad off and I was frustrated by the ineffective symptom control. Advance Care Planning and Palliative Care were not options for discussion according to the consultant.
My Dad is amazing, he has inner strength and reserve that make him the man he is. Six weeks later he was discharged home to start a re-hab that continues to this day.
My plea is that palliative care and Advance Care Planning are better understood. It is possible to walk parallel paths of hoping things will improve but preparing for if they don’t. Controlling symptoms, whatever path you are on, is essential..”
– Person requested to remain Anonymous
Neave's story...
“We had a 44 year old lady with ESRD who had been homeless and a drug user for 15 years.
She had recurrent line infections, had to have an increasing amount of dialysis sessions and was becoming more frail. She had been given a prognosis of likely 2 years when she had started dialysis. She was intermittent with her engagement of her treatment, spent a lot of time in hospital where she struggled with the routine and the loss of control
Our palliative care team got involved to help with symptom management but also start to have ACP conversations about what she did and did not want. It took a long time for us to build up her trust, but eventually she started to think about her death and what she would want. She wanted to be moved to the hospice for symptom control and acp conversations. She was not the usual patient demogrpahic that the hospice saw and discussions about getting her there were long and needed an MDT approach.
A trial at the hospice so she could get used to the setting was done and so that she could have a better setting to continue these discussions around her ACP. Originally she wanted to continue taking drugs and also wanted to continue to be admitted to hospital for treatment. She became unwell after taking drugs in the hospice and ended up on ITU.
The second time she was at the hospice she was able to take more control of her life and felt empowered. She decided she did not want to go back to hospital if she became unwell again. At the hospice she reached mobility goals, reestablished contact with her family, was able to meet her nephew and niece for the first time and for the first time in 15 years decided she wanted to stop taking drugs. After this improvement in her quality of life she was able to make the decision that if she became more unwell again she did not want to go back to the hospital and instead wanted to die in the hospice. She was being geared up for discharge from the hospice when she became unwell and decided she wanted to stay in the hospice to die. She died surrounded by her family, on her own terms which is something she admitted never thought was possible.
The above story would not have been possible without early ACP conversations and revisiting the issues on the patients terms. She was only young at 44 and I think the hospital staff did not realise they could start to have these discussions and plan.”
– Neave Dent
Zoe's story...
“Mum knew she only had a matter of months to live, as she was already on oxygen 24/7 and her COPD was worsening. So she started planning her funeral, but didn’t mention anything to me other than to say she’d prepared a complete plan of who to contact, what kind of service she wanted, even which hymns and readings.
She died even sooner than expected, so perhaps she hadn’t got her affairs in order as well as she had planned to, and I had to hunt high and low for her funeral wishes. Only because she had been so clear that she had prepared it all did I persevere, going through all her paperwork until I finally came across a scrappy piece of paper in the back of her previous year’s diary with it all written down.
Mum got the funeral she wanted and had removed a load of work my brothers and I would otherwise have had to have done, but it would have been much easier if she’d left her instructions in a more obvious place!“
– Zoe Harris
Gary's story...
“I looked at my grandchildren with love and affection and wondered what would have happened if I had died during a recent emergency operation for cancer. Indeed what would my own children know of my life and those of my parents and grandparents? What little memory my grandchildren would have of me or their ancestors.
I regret that I asked too few questions of my grandparents when I had the chance but have been lucky enough to collate many facts through my Father. ”
– Gary Powell
Suzie's story...
“Advance Care Planning has given me peace of mind. I now know that when I need more support, my family and my healthcare team know my wishes and will to the best of their ability fulfill them. From the little things like having my favourite hand cream and a pile of crime fiction near me to everyone knowing my final wishes, it means I can put it aside and get on with my life until I need it.”
– Suzie Taylor
Bo's story...
“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.”
– Bo Mandiville.
To read the full article click here
Share your Advance Care Planning story...
If you would like to tell us about your own Advance Care Planning story (good or bad) we would love to read it. We welcome contributions from the general public, health and social care professionals alike.
A number of selected stories will be shared on this page in the days leading up to this year’s Advance Care Plan Day.
Stories are an important way to highlight people’s personal journey’s and the impact planning (or not planning) had on themselves and their loved one’s.
This website was made with love and care by MyWishes, Michael Sobell Hospice, Gate 3, Mount Vernon hospital, Northwood HA6 2RN, United Kingdom
