Many people I talk to about Advance Care Planning have been putting it off for months or years, until they finally get round to it or are forced by life’s circumstances… It’s human nature, isn’t it? We get caught up in the busy-ness of day to day life and put off making time for thinking or talking about the biggest issues of all, such as what’s most important to us at the end of our life.
Talking about death and dying, let alone writing a plan is not easy and is not something we generally like to do. And yet, death is one of the few things in life we can be absolutely sure of. Making time while you can to plan how you would like to be treated and cared for when you are dying is not only sensible but also a very empowering action to take.
What is an Advance Care Plan?
An Advance Care Plan (ACP) is a written document that is referred to by healthcare providers when you are facing the end of your life and are not able to communicate your wishes or instructions in person. It is your plan for your future care; for how you would like to be treated in the event of a life-limiting illness or injury, a statement about what level of intervention you would like to receive and guidance for where you would like to be cared for when you are dying. It captures what is most important to you with regard to your future; your personal wishes, values and desires and even your worries or concerns. The ACP ensures that these are observed when decisions are being made about your care when you are no longer able to communicate for yourself.
Why have an ACP?
With the advancement of medical care so many treatment options are potentially available, but sometimes treatments can be both helpful and harmful. They may keep you alive, but not conscious, or make you a bit better for a short time, but cause you pain. Thinking about what is important to you regarding quality of life and quantity of life is part of the ACP process.
You never know what is around the corner when it comes to your health. You could experience a major medical event, a serious accident or an unexpected event following a routine health procedure. So, having a plan to guide your health providers is advisable, especially if you are at greater risk of any of these scenarios.
An ACP provides you and your whanau with peace of mind that nothing will be done to you or for you that does not align with your personal values, wishes and beliefs about your dying and death.
How does Thrive do Advance Care Planning?
I completed the ACP training in 2016 and have since worked with about 50 clients and their whanau, facilitating the ACP process. This process involves seeing people in their homes and having usually 2, sometimes more, conversations about how they would like things to go when they are at the end of their life. Together a plan is written and revised as required until the wording and content is just right. Sometimes people need lots of time between sessions to think about what is most important to them, to talk with family or to attend to business such as setting up Enduring Power of Attorney or writing a will. For people who are living with a terminal illness, sometimes this also means discussing details of their future care with their health care providers or finding out about their options for palliative care. Once the plan is complete it gets uploaded into the patient information system at the DHB and can be viewed by a wide range of health professionals when required.
Why an Occupational Therapist doing Advance Care Planning?
While the process of discussing and documenting advance care plans may sound morbid and depressing, I have found that most clients really appreciate the opportunity to have this discussion. Being able to talk about what matters most in life and death usually becomes literally a “deep and meaningful” chat with a profound focus.
As an occupational therapist, I find Advance Care Planning fits really well with my work in the positive ageing space. With the elderly clients I have worked with, it has facilitated thinking around future proofing; not just of the physical environment but also for emotional, physical and social support in the last chapters of life. It enables thinking around what it means to live well as well as to die well. Defining and honouring an individual’s unique identity, values, roles, meaningful occupations, cultural influences and spiritual beliefs is a common outcome of the ACP process.
When I am in the client’s home, I also consider their other needs from a more traditional occupational therapy perspective. From this I can make recommendations to either the client, their whanau or their referring GP regarding need for further occupational therapy input, health, safety or functional concerns, and other referrals or services that may be of benefit.
In addition to providing a valued service to clients, I am also finding that GPs appreciate me helping their patients with their ACPs. Many GPs are too busy to be able to spend the time it takes to write an ACP so being able to refer these patients to me helps reduce their workload.
Advance Care Planning gets you thinking about life…
I have found my journey into the realm of Advance Care Planning very rewarding. It is an immense privilege to be able to facilitate peoples’ thinking and planning related to their end of life wishes and care. I enjoy hearing about people’s individual ideas regarding living and dying well. In addition, my work in this area has inspired me to do some reading about the concept of death and human mortality. I recommend the following books:
Being Mortal. Atul Gawande, 2014.
When Breath Becomes Air, Paul Kalanithi, 2016.
The Five Invitations – What Death Can Teach Us About Living Fully. Frank Ostaseski, 2017
With the End in Mind: Dying, Death and Wisdom in an Age of Denial. Kathryn Mannix, 2017
If you would like more information about your own Advance Care Plan, please get in touch with me at Thrive or talk to your GP. You may be eligible for the funded ACP service for which your GP can refer. See www.healthinfo.org.nz/advancecare planning for more information.
If you are an Occupational Therapist and would like to develop your skills in this area I recommend the eLearning modules at www.advancecareplanning.org.nz