What if we viewed lived experience as an asset? As an asset of professional, economic,…
I have been watching the Coronation Street storyline about Sinead dying from terminal cancer with great focus. Corrie tackling an important topic, not just cervical cancer, but death and dying too. I feel they’ve done well with the storyline, whilst some parts don’t seem wholly realistic I feel they’ve done a sympathetic job of sharing Sinead’s health and her end of life. They’ve shown the devastation, the desperation, the hope, and everything in between.
However, given Sinead had prepared funeral plans, as we saw when Sinead told Billy (the Vicar) where they were so he could take them with him, I feel ITV missed a trick. Why didn’t Corrie show a really good, sensitive advance care planning conversation as Sinead approached her end of life? They discussed treatments, but never a true advance care planning conversation, let alone the filling out of any specific advance care plan documents. Why not show a nurse or consultant working through end of life documents with Sinead, laying out her wishes for the future and what care or treatments she did or did not want? What about doing an advance statement, sharing what mattered most to her, things she wanted people to know about her, what her wishes were more broadly? Where she wanted to be when she died (1st and 2nd choice)? Appointing a Lasting Power of Attorney for health and welfare to make decisions on her behalf if she lacked capacity? Whether, given her short prognosis, the ReSPECT documents would’ve provided an overview of her needs in a more concise way to other plans? Whether she wanted to be resuscitated or to fill out a DNACPR (also known as DNR, DNAR) – Do Not Attempt CardioPulmonary Resuscitation. For people who are dying, resuscitation has an extremely low, negligible success, and can actually prolong suffering, usually with additional needs as a result of both the resuscitation itself, and what caused the cardiac arrest in the first place.
I wish Corrie had highlighted this absolutely vital process for people with life-shortening illness – but some aspects of advance care planning are applicable to all of us – you don’t need to be ill to appoint a Lasting Power of Attorney for health and welfare and another for finances, or do an Advance Decision to Refuse Treatment (aka “Living Will”) for what treatments you would not want in future and in what circumstance, as, let’s face it, we’re all one illness, one accident away from having life-shortening or life-changing illnesses or injuries?
It could’ve been a huge opportunity for some myth-busting and awareness-raising of advance care planning, the conversations and the documents themselves.
If you are new to my blog, I’m Lucy, 26 years old, I have a life-limiting (life-shortening) illness that means I shouldn’t have seen my 18th birthday, yet here I am at 26 with a lot of living yet to do. I’ve been under palliative care for 9 years, under a hospice for 8 and a half years, and I have an advance care plan – in fact, I have survived so long, we keep having to update it! I believe good palliative care is the reason I have far exceeded my prognosis, and been able to live a rich, productive, fulfilling and enjoyable life. So much so, some of the best years of my life have been the years I’ve known I was dying. Advance care planning gives me some control over something I have no control over – I can’t control my death and when I die, but I can put plans in place to ensure my wishes are know, that they will be followed as far as possible, and so I can live a good life, and have a good death. Advance Care Planning has been transformative for me – I wouldn’t be living this life I live now without that very first advance care planning conversation with my hospice nurse, who talked to me at length about my wishes and filled out the documents, and before the end of the visit, asked “So what do you want to do now?”. This led to me starting my voluntary, advocacy, speaking, consultancy, committee and other work, and now, just recently, I’ve been able to begin paid work – despite the fact that I have extremely complex needs, require care from intensive care nurses and carers 24 hours a day, and despite the fact that I am living with an uncertain prognosis, and an inevitably premature death.
For those who do not know, I thought I’d include some information around advance care planning, in case people reading this do not know what advance care is.
Advance Care Planning
Advance care planning is a conversation between an individual and a health (or in some cases a social care) professional, talking about that individuals life, needs and wishes for the future. This is a conversation and a process, not a single event. You may fill out specific Advance Care Plan documents, or it may be an open-ended discussion with the professional(s) caring for you. It is a process, it doesn’t need to take place in only one visit, and it should be a continuous process, being revisited regularly as per need or wishes.
Advance Care Plans & The Different Documents
These outline specific wishes in different ways in formal documents to ensure everyone caring for you knows your wishes and your needs, your priorities, what care or treatment you do and do not want, where you want to be when you die, and so on.
As listed further up this blog post, advance care plan documents can include:
“The ReSPECT process is a new approach to encourage people to have an individual plan to try to ensure that they get the right care and treatment in an anticipated future emergency in which they no longer have the capacity to make or express choices. The ReSPECT process is intended to respect both patient preferences and clinical judgement.”
“A Do Not Attempt Resuscitation form is a document issued and signed by a doctor, which tells your medical team not to attempt cardiopulmonary resuscitation (CPR). The form is designed to be easily recognised and verifiable, allowing healthcare professionals to make decisions quickly about how to treat you.
It’s not a legally binding document. Instead, it helps you to communicate to the healthcare professionals involved in your care that CPR shouldn’t be attempted. These forms exist because without one your healthcare team will always attempt CPR.
The form only covers CPR, so if you have a DNAR form you’ll still be given all other types of treatment for your condition as well as treatment to ensure you’re comfortable and pain-free.”
“A lasting power of attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf.
This gives you more control over what happens to you if you have an accident or an illness and cannot make your own decisions (you ‘lack mental capacity’).
There are 2 types of LPA:
- health and welfare
- property and financial affairs
You can choose to make one type or both.”
(also called a “Living Will” in some circumstances)
“An Advance Decision to Refuse Treatment (ADRT) is a written statement which lets other people know about any specific treatments that you do not want to have in certain situations. It means they will know your wishes if you are ever unable to make decisions yourself.” “It will only be used if you can’t make or communicate a decision for yourself.”
“You can make an advance decision if you are aged 18 or over and able to make decisions for yourself. An ADRT is legally binding as long as it meets the legal requirements of the Mental Capacity Act 2005.
Before making an ADRT, it is important to discuss it with one of your healthcare professionals. You will need to review your ADRT regularly to make sure it is up to date and reflects your current wishes.”
Also see MacMillan’s useful resource – https://www.macmillan.org.uk/information-and-support/organising/planning-for-the-future-with-advanced-cancer/advance-care-planning-england-wales/refuse-treatment.html
“An Advance Statement allows you to record your wishes, feelings, beliefs and values in case you later become unwell and need care or medical treatment.
It provides a space for you to write down anything that’s important to you in relation to your health and wellbeing. For example, you can use it to explain how you’d like to be cared for or to detail any values or beliefs that inform the decisions you make. It gives those around you, such as your family, carers, and healthcare team, a clear idea of what you want if you can’t communicate this yourself.”
Also see MyDecisions which gives you a platform to fill out some Advance Care Plan documents – http://mydecisions.org.uk
It can also include a general care plan of needs, wishes and so on without a formal form.
These act as a guide to professionals treating you, sharing your wishes clearly and concisely, and ensuring, wherever possible, that those wishes will be followed.
For anyone who would like to know more or think about their own wishes for the future, I recommend the following websites:
You can complete some advance care plan documents here on MyDecisions – https://mydecisions.org.uk/
This website is for help with an Advance Decisions to Refuse Treatment (also sometimes called “living wills”) http://adassistance.org.uk