Take control

The right documentation can give you some power over your future medical care and treatment.

ALEX COOMBS

Alex Coombs is Social Worker – Haemophilia & Other Inherited Bleeding Disorders at the Ronald Sawers Haemophilia Treatment Centre, The Alfred hospital, Melbourne
 

THE UNEXPECTED

 
As some of you may recall the 10th March 2011 was a day my life and world changed for me. Until that date I had been living my life fairly carefree, travelling and working as a social worker at the Alfred hospital Infectious Diseases Team and Ronald Sawers Haemophilia Treatment Centre for three years.  I had relocated from Perth, where I had lived all my life to start in a new social work clinical area and enjoy the many great lifestyle options Melbourne had to offer.
 
You never know what is waiting ahead and the changes that can occur in an instant. I still remain unable to explain why I went from planning to head off to work one morning as I stood on my third floor balcony to now being reliant upon an electric wheelchair and personal carers every morning 7 days a week six years later.
 
Like many people I hadn’t given much thought about the 'what if’s'. I had a unit I planned to hold onto, and had dutifully done my will that made provisions for my estate and any remaining extended family in Perth. Being single and away on the other side of Australia from my family, who would be responsible to make medical or financial/lifestyle decisions on my behalf if I wasn’t in a position to do so one day? Even if I was partnered too, it is not as clear-cut as you or even best friends know.
 

ADVANCE CARE PLANNING

 
In attending a workshop on Advance Care Planning, I have learnt that an Advance Care Plan is a way to ensure your thoughts and wishes about your medical care and treatment can be recorded and known by your GP, treating team and hospital and your family/significant others. This can also be known as a 'living will' or 'Advance Care Directive' or 'Advance Personal Plan' or 'Health Direction', depending on the state or territory.

I add that the guidance and input of the medical team is still highly sought and not to be ignored in any aspect of this. As we age our body keeps changing, no matter how healthy we think we are or attempt to be. For those with existing medical conditions this can add more complexity and risk.
 
I am not trying to sound alarmist but to bring to your attention that there are a few ways that we all can ensure that our wishes for medical intervention can be communicated to your medical team, treating hospital or if you find yourself in another hospital not familiar with your medical history.
 

SUBSTITUTE DECISION MAKERS

 
Who should know your wishes regarding your health and medical decision making if you can’t communicate them yourself? Well let’s start with your significant other(s). Whether you are married, de-facto or single it can become essential someone has recollection of what you want regarding treatment or level of intervention to either restore your health or keep you comfortable and pain free.  The person who makes these decisions on your behalf when you cannot is known as a 'substitute decision-maker' or a Medical Decision Maker. I would recommend people appoint a substitute decision-maker and potentially an Advance Care Plan to capture your wishes to their fullest degree and avoid the potential for conflicts to arise between family and significant others.
 
To ensure that your wishes are noted and respected must be held at the time with your chosen confidante(s), in my opinion, would be best when you are at your healthiest and most competent state of mind. There should no question about your capacity to make an informed or rational decision in executing these documents at the time You may have recently had an event that began to make you think ‘what if’. We can all make assumptions about who takes over, even I did as a social worker after almost 20 years in health.
 

WHO WILL DOCTORS TURN TO FOR MEDICAL DECISIONS?

 
When a treatment decision has to be made and you do not have the capacity to make it, the medical team will turn to a specific hierarchy of decision makers based on the level of connection to you as the patient. Whilst all relationships will be respected generally in the health care system, the powers to make decisions about medical treatment for you when you cannot are considered to be very important under the law. In all Australian states and territories except NT, the medical team must use a legislated hierarchy for the substitute decision maker that follows legally recognised relationships and blood family connections. Depending on which state or territory you live in, this person might be known as the 'person responsible' or the '[statutory] health attorney'.
 
Who is this person? The first person the medical team will turn to is someone you have appointed legally. If you have not appointed anyone, then depending on which state or territory you live in, they will be required to turn to your spouse, or if you don’t have one, your nearest relative or unpaid caregiver.
 

WHO WOULD YOU CHOOSE?

 
Usually when we are admitted to hospital, we, or someone on our behalf might fill in a registration form with the words: 'next of kin', 'Emergency Contact', 'person responsible' requiring name and contact details. Whilst helpful, does this person know what we want to happen to us from the medical treatment point of view? What if our personal, religious, spiritual or cultural beliefs influence our thinking? Would the person whom the treating team talk to know how important that is to us?
 
If you would choose someone different to the 'person responsible' or 'health attorney' or 'next of kin' or you don’t have anyone who fits the criteria, your next option is to appoint someone you trust as your substitute decision-maker. If no one fits that criteria for you, you can ask for a publically appointed person can be applied for. The person you have appointed will have the powers to make decisions on your behalf when you are unable to do so due to an accident or illness. This is one area that can give power to those who are in a same sex attracted relationship, those without close family ties living or close by or due to family dysfunction.  
 
You may wish to investigate the relevant legislation in your state or territory, but otherwise, consider appointing your substitute decision-maker legally if you are in a de facto relationship of any kind which is relatively recent and/or you don’t live together. It would give a clear indication of your wishes and save your partner having to prove their case at a time when they might already be under stress and need to make decisions quickly.
 

HOW DO YOU DOCUMENT YOUR DECISION-MAKER AND WISHES?

 
Each state and territory has legal documents you can use to appoint someone as your preferred substitute decision-maker and legal documents to record your wishes.
 
See ROLES AND DOCUMENTS for more information.
 
Before you go ahead and document your wishes and sign it off, PLEASE inform the appointed person that you intend to do so and discuss your wishes with them. They don’t need another sudden surprise during a traumatic hospital situation to be told they have a significant level of responsibility on your behalf.
 

ROLES AND DOCUMENTS

• Next Of Kin – the closest living relative such as wife, husband, domestic partner, sibling with whom your medical team will discuss your medical situation with but may not be the person legally deemed to be the substitute decision maker, if that applies in your state or territory – see below.

• Emergency contact – similar to the above but a person who can be nominated to go between you, your medical team and the outside world of family and friends

• Guardian – legally appointed person to make decisions if you have no one else capable or willing to do so

• Person responsible/statutory health attorney/health attorney – is the first person in a legislated list of relationships who is available, willing and able to make decisions about your medical treatment. In all Australian states and territories except NT, the relationships in the list will include the following, although their place in the hierarchy varies from state to state:

• Legally appointed substitute decision-maker – is a person given legal authority by you to make medical decisions when your own capacity is diminished. Depending on which state or territory you live in, this person might be known as:

 You will need to complete an official form provided by your state/territory government to appoint someone as your substitute decision-maker. See www.advancecareplanning.org.au for the appropriate forms in your state/territory.
 
There are other substitute decision-maker roles where you can appoint someone else to manage your financial and lifestyle affairs, such as an Enduring Power of Attorney (Financial matters). If you have any of these forms completed, please ensure your GP, hospital, medical team, case manager, social worker, family and significant friends are aware of their existence. A copy should be noted as a true and sighted copy to be held in your medical records. If you attend other hospitals ensure they each similarly have a copy of your Medical Decision Maker document.
 

• Advance care plan – records your wishes in regard to the types and level of medical intervention you wish to be carried out in emergency and life-threatening events. If you have recorded your wishes in one of these documents, I would recommend that you can arrange for another copy to be held by in any hospital where you already have a medical record and are likely to be admitted.

The name of the advance care plan document varies from state to state. See www.advancecareplanning.org.au for the appropriate forms in your state/territory.
 
The documents for your substitute decision-maker and advance care plan are very important to ensure that your appointed decision-maker is consulted and can work together with your medical team to be guided by your documented wishes. You may wish to consider the advantage of these documents being on file in your medical records.
 
By writing this, as a social worker I hope it will give rise to more careful documentation of our client’s wishes and decision-making. These documents enable us to have conversations with our clients to ensure their health beliefs are recognised and followed by those often left to make hard decisions at difficult times.
 
MORE INFORMATION
 
Advance Care Planning Australia 
Includes information about substitute decision makers and advance care planning documents and forms for each Australian state and territory
 
Australian Government Department of Health – Think about what you want
 
Check with your local Office of the Public Advocate or the Guardian & Administration Office in your home state.

Reprinted and revised with permission from Coombs A. Take Control. National Haemophilia 2017 Sep; 199: 12-14.
Reviewed by Alex Coombs and Suzanne O'Callaghan, Haemophilia Foundation Australia, June 2021.
Thanks to Advance Care Planning Australia for their advice on substitute decision-makers.