Advance Care Planning is a process of patients deciding what is important to them and writing it down.
Advance Care Planning is defined as a “process of planning for future health and personal care whereby the person’s values, beliefs and preferences are made known so that they can guide decision making at a future time when that person cannot make or communicate his or her decisions” (The Clinical, Technical and Ethical Principal Committee of the Australian Health Ministers’ Advisory Council (CTEPC), September 2011.A National Framework for Advance Care Directives.)
It is a process of patients deciding what is important to them and writing it down. This will help ensure that if patients are too unwell to speak for themselves, their loved ones and health professionals will be able to make the decisions that are right for the patient.
RMH has many Advance Care Planning resources available for patients to help them understand the process of Advance Care Planning as well as information that is available in languages other than English.
There are three aspects to Advance Care Planning:
- Appointment of an Agent/Substitute Decision Maker. In Victoria, this is best done by appointing an Enduring Power of Attorney – Medical Treatment (MEPOA)
- Communication between the person, their agent and family, and their healthcare team, regarding their plans for future care
- Documentation of a person’s wishes for future care, via a letter, a Statement of Choices form and/or a Refusal of Treatment Certificate. Documentation of values, beliefs and preferences can provide clarity to the treating medical team
A = Appoint an Agent, C = Communicate your wishes, P = Put it on Paper
Meet Jo, Advanced Care Program Planning Manager at the Royal Melbourne Hospital, who is spending time on the Carers Couch.
ADVANCED CARE PLANNING VIDEO'S
What is Advanced Care Planning?
Jo defines advanced care planning as a process whereby one plans for their future healthcare or personal care needs.
Values, beliefs and preferences are made known to their healthcare professional and loved one; thus, if there comes a time when preferences and discussions cannot be voiced, there is a guide in place to enable decision making processes.
Advanced Care Planning and Death? How to start a conversation…
In this segment, Jo answers the question of why it is that somebody may consider advanced care planning.
Ensuring these conversations occur will enable patients to voice what it is that is important to them and verbalise what it is that helps them live a good life.
Especially is this area an important discussion point for individuals living with a progressive condition, as they can discuss the transition plan prior to disease advancement.
Jo offers ways of initiating these difficult conversations and how carers can ensure that their loved one’s wishes are met and values upheld, as well as giving them choice in the matter as much as possible.
What are the benefits of Advanced Care Planning…?
Jo speaks about the benefits of advanced care planning, primarily being that of engaging with your clinician about your loved one’s condition.
If your clinician is engaged and aware of your wishes, they will be very likely to comply with these.
Family members can benefit from this engagement as a form of stress relief, knowing the preferred outcomes and express wishes of their loved ones have been met, while avoiding invasive treatments that may not necessarily be of direct benefit to them.
Where to get help with Advanced Care Planning..?
Jo says that ideally, people are doing advanced care planning when their health is well.
Within a hospital setting is not the best place although this initial conversation does commence within this setting.
It is important for patients to ask about advanced care planning as it not merely planning for the future; it helps decision making processes for your health in the present.
It is a conversation which continues to evolve in line with the patient’s life stage.
Advanced Care Planning and other Resources…Here is YOUR Action PLAN!
Jo says that there are a lot of resources available to help with advanced care planning and that people should utilise these to guide them through the process of caring for a loved one.
Resources include methods to prioritise, tips for having difficult decisions and conversations with your loved one, legal concerns, decision making processes, and the “how to” of patient documentation.
In addition, Jo tells of simple methods of enhancing the final months of a loved one’s life, while gaining an understanding of their final wishes in a relaxed, laid-back setting.
Advance Care Planning Australia website
Provides detailed information about how to engage in ACP; as well as access to templates and information on legislative differences in Australian states and territories. A list of ‘frequently asked questions’ is also available.
Advance care plans: Better Health Channel Victoria
Department of Health and Human Services website for consumers, which provides: step-by-step instructions for ACP; a template for writing down your wishes; and links to further information and specific hospital ACP websites.
Alzheimer’s Australia – tools for planning ahead
A range of tools developed for people diagnosed with dementia but equally helpful to anyone wanting to plan ahead. The tools can help you: think about your future; sort out your finances; decide who will speak for you if you can’t speak for yourself; express your health and care wishes and discuss these with your loved ones and with health professionals
Palliative care information for patients, carers and families to help them understand what is happening and make decisions. Printable factsheets available as well as links to other online resources.
Dying to Talk – discussion starter for ACP
82% of Australians think it is important to talk to their family about how they would want to be cared for at the end of their life. However, only 28% have done so.
The Dying to Talk discussion starter is a very useful guide for thinking about what matters to you and discussing this with your family and healthcare professionals. You can type directly into the electronic template and then save a copy and print it.
My Values is an interactive online package that helps you create a profile that explains your values regarding life, death and medical intervention. You can save and print a report and also share your report electronically with your loved ones and medical practitioner.
Office of the Public Advocate
The Office of the Public Advocate provides advocacy services; community education; and advice on a range of matters that affect people with disability. Find information about: making Powers of Attorney; medical consent; and a refusal of treatment.
Phone 1300 309 337
Taboo around discussing death and dying…Why?
There are a lot of reasons why people struggle or why they avoid the topic of advanced care planning.
As a concept is often misunderstood within the community at large.
Further, there is often a silent taboo around these conversations.
It is critical to see advanced care planning as not all about death and dying; it’s about living best with the life you have left.
These conversations are best had when your loved one is well and neither of you are under pressure to make decisions.
This can give you the time to really explore what is available and to make informed decisions based on what your loved one believes is important.
Glioblastoma = Brain Tumor…?! Hospital Jargon – “Ask for more details!”
Jo discusses research that was conducted on interpreters who have participated in end of life conversations within the healthcare setting.
They were speaking of the jargon clinicians often throw into their conversations with patients and their carers, oblivious that other party is lacking understanding.
Jo has a message for patients and carers; challenge clinicians about the condition, and ask all questions that will enable your understanding.
If you cannot comprehend something, don’t be afraid to ask for more detail!
If additional questions come to mind after leaving your appointment, note them and bring them up at the next appointment.
The more you understand, the better prepared you are to make decisions on how to proceed with your loved one.
Communication breakdown in the Hospital – Be Proactive!
Issues often surface when communicating, especially within the hospital setting.
It can be difficult for the patient to gain holistic picture with different pieces of vital information that may be missing.
Therefore, it is of utmost importance to engage in conversations with your clinician and other healthcare professionals; ask questions, and keep asking them until you are satisfied you have the desired level of understanding.
Finally, utilise other patient and carer services on offers such as pastoral care or the social work department.
Other such platforms of communication can really work to simplify these difficult conversations and assist your loved one in verbalising what is especially important to them.
Cancer Journey – The voice of the Consumer!
Resources and Advice HERE!
Jo discusses the issues which may impact an individual’s personal cancer journey.
Be it financial, emotional support or treatment concerns, these are difficult pathways to navigate the healthcare system.
Hearing the voice of the consumer is of utmost importance; patient’s stories help illustrate the many gaps in the health system.
Carers Couch seeks to highlight these gaps and works to make a positive difference.