I am so pleased to welcome a wonderful friend of mine, Ellen[i], as guest writer for the October blog. Ellen and I have had lots of discussions about planning ahead, and supported each other through the circles of life in our respective families.
The blog started in response to my interest in Ellen’s Advance Decision to Refuse Treatment (ADRT)[ii] experience - it’s unusual to hear of someone making their ADRT and I wanted to explore how Ellen found the process.
It's a timely blog too, coming so soon after Parliament rejected the Assisted Dying Bill. Ellen’s voice and message is powerful, her planning ahead exemplifies what can be done in existing legislation.
One of our super walks and some favourite sunflowers
Clare: Hi Ellen, thank you for taking the time to write this blog. Can you share a little about who you are:
Ellen: My name is Ellen I was a physiotherapist for 40 years. I always tried to look at the patient holistically and to include the family in their care wherever possible.
I am married with two children and a grandchild. My family are hugely important to me.
Clare: What was the catalyst for you to start Advance Care Planning?
Ellen: Talking to a very good friend (you!!), highlighted the need for me to put plans in place. In the 40 years of working in the NHS and private sector, several years of volunteering and as the primary care giver to my mother I had never been advised about an ADRT.
Both my parents and my aunts and uncles have had a dementia diagnosis and had to move into full-time care facilities in their 80s. This has been stressful to all concerned and not at all what their wishes were pre diagnosis. They would all have been mortified if they knew the level of care they have needed, the loss of dignity and the personality /behavioural changes that have befallen them. I have seen the effect this has on the caring families who have tried to support them. The effects have been both mental and physical.
I also have seen on many occasions the crumbling of the NHS system. The overwhelming caseloads, pressure on staff, inability to give the quality of care that everyone deserves. I do not want to add to this burden.
Clare: What have you put in place for your future planning?
Ellen: I have a Will, LPA[i]s, an ADRT, and a DNACPR[ii] in place. My family know I would like to go to Dignitas if the need arises.
Clare: I’m specifically interested in your decision to create an Advance Decision to Refuse Treatment – what made you do this?
Ellen: In my professional and in a personal capacity I have seen physical and mental decline in a person with prolonged treatments and ultimately unpleasant end of life and deaths. I volunteer for a dementia charity and am aware of the poor resources and information available to carers and the person living with dementia planning ahead. Conversely I have previously volunteered at a local Hospice and have seen what good End of Life care should look like and a good death experience for the patient and their loved ones. This is what I would like for myself and my family.
Clare: How did you create the Advance Decision to Refuse Treatment?
Ellen: I was signposted towards The Compassion in Dying website by a friend where I downloaded the ADRT from. I then discussed with my family and completed it.
Clare: Once drafted, signed, dated and witnessed, how did you share the document?
Ellen: Having completed the ADRT form I shared and discussed it with my family and my closest friends.
I hand delivered a copy to my GP practice to ensure it arrived. I heard nothing from the GP which surprised me. I haven’t needed to see the GP in the two years since I delivered the form so I just assumed everything was in place.
Clare: What was your GPs reaction?
Ellen: I contacted my GP about a DNACPR form request as I am at the age where I know of peers who have had cardiac arrests. I wanted my wishes clear. The GP was obliging with providing a DNACPR form after listening to my reasoning. He did not discuss a ReSPECT[iii] form with me.
Whilst on the telephone I asked to clarify that my ADRT had been registered with the Local Ambulance Trust and Local hospital. It had not. In fact, nothing had been done since I delivered it nearly 2 years previously. I asked him to action this immediately.
Clare: And the reaction from family and friends?
Ellen: This was mixed. My family were all very supportive and understanding. This could be from witnessing what has happened in our own family. My daughter also works for the NHS.
My medical friends were completely on board. However, some non-medical friends who had lost parents through sudden medical events did not understand. These friends tried to dissuade me and said they would go against my wishes should I be with them at the time of a cardiopulmonary event. It took some reasoning and discussion, but they did come to see my point of view and respect my wishes.
Clare: How do you feel now you have documented and shared your plans?
Ellen: I feel happy now that I have had confirmation that things are on my records and should be implanted as necessary. I am not surprised that there was an issue with the GP. I feel much more needs to be done to educate GPs, care providers and hospital staff collectively. Firstly, in acting on the behalf of all their patients to provide information about advance care planning. Then secondly to action the information when they receive it.
Clare: What key message do you have for anyone reading this?
Ellen: Think about your loved ones. What do you want their memories of you to be? You never know when a serious event can happen to you or them. So, make a plan. It can always be amended. Keep everyone informed.
It is never too early to discuss your wishes, put things in place and plan for how you want your end-of-life care to be.
I believe in Assisted Dying and felt disappointed that legislation wasn’t passed in favour. I want to do all that I can within the law as it currently stands to control my future.
Clare: Thank you for sharing this Ellen, I know how passionately you feel about Assisted Dying. I hope your words will help people who want to feel more in control of the end of their life.
To find out more about the steps you can take to plan ahead and use existing frameworks and legislation, please see an earlier blog Assisted Dying: an open letter to Esther Rantzen
[i] Lasting Power of Attorney
[ii] Do Not Attempt Cardiopulmonary Resuscitation
[iii] Recommended Summary Plan for Emergency Care and Treatment. Find out more at ReSPECT and Advance Care Planning with Dr Zoe Fritz
To find out more about my Lasting Power of Attorney service, Advance Care Planning Education or support for people facing a life changing diagnosis, contact me
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