Making medical treatment decisions for others is hard. It typically involves a sudden medical event, with someone you love becoming critically ill and unable to communicate.
While it's something we don't like to dwell on, it's important that we understand our responsibilities and what's expected of us if we're ever called upon to make medical decisions for others. After all, any of us could suddenly experience a car accident, stroke, or serious illness like COVID.
National Advance Care Planning Week, 21 - 27 March, is the perfect time to have a heart to heart with someone close to you.
Be prepared. You may find yourself dealing with a sudden medical event if you've been legally appointed as a substitute decision-maker (SDM). Or the responsibility may automatically fall to you through your family relationships. In fact, if you have a husband, wife or parent, chances are you're a substitute decision-maker and don't even know it.
Advance Care Planning Australia has compiled their top 7 tips to help people feel better prepared for the role.
1. Start talking
All too frequently, people have expectations that loved ones can make decisions on their behalf without discussion. If someone has appointed you as a substitute decision-maker without the benefit of clarifying their preferences, be sure to raise it with them.
To kick off the conversation you might ask: "I'm worried that if something happened to you, I wouldn't know what you would want. For example, would you accept treatment if it meant you were no longer able to talk or were unable to recognise family members?"
2. Ask if you're right for the role
Before accepting the responsibility of being a substitute decision-maker, ask yourself if you're the right person for the role. Few people are aware that it's okay to say no.
If you're not great at making decisions in pressured, emotional situations or feel uneasy about discussing death or dying, be sure to let your loved one know so that they can choose someone else.
3. Get their preferences in writing
Just like making a will, an advance care directive (ACD) can help clarify a person's preferences, and reduce confusion and family conflict.
Encourage your loved one to write an ACD while they are still fit and healthy. Be aware that ACDs can only be completed by people with decision-making capacity, so if dementia is a factor, early planning is critical.
4. Go to medical appointments
It's easier to make medical decisions for others if you understand their current health status and how it impacts their quality of life. If possible, accompany the person to medical appointments. Ask questions about their illness and treatment options, and how their illness is likely to progress in future.
5. Learn your CPRs and DNRs
While most of us have watched TV medical dramas and know some of the terminology, few of us have a solid understanding of how medical events play out in real life.
From CPR and dialysis to tube feeding and artificial breathing, these interventions come with significant burdens that are not always compatible with how people want to live. Advance Care Planning Australia offers useful information on life-prolonging treatments and how to weigh the pros and cons.
6. Access is everything
Too often, an ACD can't be found quickly in an emergency. Encourage your loved one to upload their ACD to My Health Record, or ask their health professional to do so. This will ensure the document can be accessed when needed most. Ask your loved one for a copy so you can also keep it safe and accessible.
7. Ask for help
As a substitute decision-maker, it's natural to have questions - ranging from how to complete forms and understand the legal aspects - to your ethical concerns. For free, personalised advice, call the National Advance Care Planning Support Service on 1300-208-582 from 9am - 5pm (AEST) Monday to Friday.
For more information click HERE. To access a free email starter pack and other information click HERE. View ACPA's new Questions that Matter Most video by clicking HERE. You can also find face to face and online awareness raising events Australia-wide during National Advance Care Planning Week.
Advance Care Planning Australia is funded by the Australian Government and administered by Austin Health.