#7 Advance Decision to Refuse Treatment with Celia Kitzinger

In episode 7 I talk with Celia Kitzinger about Advance Decisions to Refuse Treatment and the Mental Capacity Act. Celia shares how a devastating family experience provided the catalyst for her work and provides clarity and insight into ADRTs and the MCA. Celia talks through the process of making an ADRT and why an Advance Statement of wishes and preferences is so very important.

Key messages from Celia

• The frustrations of being unable to be a voice for her sister Polly following Polly’s catastrophic brain injury and how this provided a catalyst for Celia’s work.

• Despite knowing her sister Polly’s wishes, values and beliefs, without a legal document Celia and her family were unable to make the decisions they knew Polly would want.

• It is really important that, if you have views about what you would want when you lose capacity to write them down, or appoint someone to make them for you through an LPA..

• An ADRT is a legal document brought into statute in 2005 with the MCA. & applies to adults over the age of 18.

• You don't need a solicitor to make an ADRT. 

• All treatment requires informed consent, a loss of capacity means you lose the ability to consent.

• Drs cannot lawfully give a treatment you have refused in a valid ADRT.

• Situations in which you would not want to be kept alive can be diagnosis related but can also include situations that you would find intolerable.

• An Advance Statement should be taken into account if Best Interests decisions are made. 

• An Advance Statement is about the essence of who you are, what matters most to you in life.

• How plans can be made and then changed or updated, documents are not fixed in stone.

• Recognising the complexities of what your potentially incapacitous future self may want. 

• Think about what life might be like if you were to lose capacity and to put things in place.

• How Advance Statements can include information to support your family and those you love.

• Don’t delay, don't put this off.
  

Resource

• To make an ADRT and find out more Compassion in Dying, Advance Decision to Refuse Treatment Pack 

• For information on Clinically Assisted Nutrition and Hydration CANH for patients and families 

• Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent 

• Jenny Kitzinger talking to Eddi Mair How to make sure your last wishes are respected

• Establisingthat medical teams can withdraw CANH without court involvement An NHS Trust and others (Respondents) v Y (by his litigation friend, the Official Solicitor) and another (Appellants)

• Prolonged disorders of consciousness following sudden onset brain injury: national clinical guidelines

• The Alzheimers Society Advance decisions and Lasting power of attorney

• Coma and Disorders of Consciousness research centre

• Prolonged disorders of consciousness following sudden onset brain injury: national clinical guidelines

• Celia and Jenny Kitziner describe in the Guardian how they supported their Mother, Sheila Kitzinger, ensuring a good death How to plan for a good death

Find out more about my Bespoke Consultancy

• Service analysis for teams seeking to improve EoLC or prepare for CQC

• End of Life Care Education

• Lasting Power of Attorney Consultancy

• Talks and presentations

If you’d like to find out more about my work contact me.

What one thing will you do?

It would be great to share what resonated with you from this episode, what is the one thing you will do differently? Head to Twitter, Facebook or LinkedIn to continue these important conversations.

Thanks to all my guests for working with me to share their knowledge, experience and stories about Advance Care Planning. I hope you enjoyed listening and have insights to take away; I love hearing your reflections on the series and look forward to reviews on Spotify where you can also subscribe to the series.

Clare

Important Conversations about Important Conversations.

Podcast edited by Martin Whiskin.