Its always too early until it’s too late

29 February 2016

Understanding what is really important to a person at the end of their life is the key to Advance Care Planning (ACP). That was the message Helen Mason told the Hauora Tairāwhiti Board and staff members who attended her presentation in February.

Helen Mason is the Chief Executive of Bay of Plenty District Health who is passionate about providing quality end of life care. She came to Tairāwhiti to discuss how ACP can become more prevalent in our communities as a key mechanism for achieving patient centred care and decision-making.

In 2014 she received The Commonwealth Fund’s Harkness Fellowship to work with leading organisations in the United States to study how planning for end of life was being embedded in communities.  Helen used an extensive research-based report from the American Institute of Medicine (IOM) Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life as a starting point.

The well-known Dr Atul Gawande has written a book ‘Being Mortal’ on the subject that has been on best sellers lists. While the IOM report gives the evidence base for ACP, Dr Gwande’s book is changing the public conversation through influencing hearts and minds.

 

Helen Mason and Hauora Tairāwhiti staff

From left Helen is pictured with her sisters Jenny Lydon (Medical Physicist, Melbourne) Liz Walton (Nurse Specialist at Starship Hospital) and her mom Betty Lydon.

Helen’s long standing interest in ACP was confirmed as her mother approached the end of her life. As a nurse in Africa, bringing up three daughters on her own, Helen’s mum was an inspirational woman. As her eyesight failed and dementia set in Helen and her sisters experienced first-hand the ‘prolonged dwindling’ of their mum’s health. 

“As people are living longer, prolonged dwindling is a feature of many peoples’ end of life. This is why having a really good understanding of what really matters to a person and putting that at the centre of their care plan and decision-making is so important. What really matters to people changes over the course of their life.  As one gentleman I spoke with during my study said - if I can eat chocolate, enjoy a glass of wine, sharea hug and say a prayer, please do everything you can to keep me alive,” says Helen.

“To find out what is important we all need to have those ‘hard’ conversations that really count. While it is difficult start such a conversation, people who do say they are powerful conversations and often the most meaningful conversations they have with their loved ones. I have an advance care plan and so does my 20 year old son. We had that hard conversation while lining up in a very long queue to go on the Space Mountain ride at Orlando Florida!”

“Many people say it is too early to have that conversation but the reality is it is always too early until it is too late.”

Her study included qualitative case studies at four hospital organisations.  Through her research Helen found that to embed ACP in organisations and communities an ‘all or nothing’ approach was required. “ACP must be driven from the top,  fit strategically into the organisation’s direction, and be supported at thr grassroots as well. “

“A systems based approach is required with dedicated resources. One of the organisations in America used a system where if someone didn’t have an ACP plan it was recorded in much the same way we record medical incidents.”

“Embedding ACP may require a cultural change in the DHB as well as in the community. While there a lot of resources available to help with doing an ACP plan, approaches work best when they are adapted to fit a local context.“

Helen encouraged everyone to lead by example and start having these conversations themselves.

 

What is Advance Care Planning?

According to http://www.advancecareplanning.org.nz/

Advance care planning gives everyone a chance to say what’s important to them. It helps people understand what the future might hold and to say what treatment they would and would not want. It helps people, their families and their healthcare teams plan for future and end of life care.

This makes it much easier for families and healthcare providers to know what the person would want - particularly if they can no longer speak for themselves.