As a carer, there may come a time when you’ll need to make decisions for a loved one who can no longer do so themselves. It can be incredibly overwhelming.
With Palliative Care Victoria’s “Dignified and Respectful Decisions (DARD)” initiative, you can navigate this challenging time with confidence and empathy, all the while ensuring you don’t forget to care for yourself.
DARD offers free and vital resources to help you make truly informed decisions, while honouring and respecting your loved one’s preferences.
Types of treatment and care decisions
There might be times that you need to make important decisions with very little notice. These decisions could involve ongoing care, lifestyle choices, or medical treatments. They could even impact your loved one’s quality of life, especially as their health declines.
DARD’s free resources can support and guide you through these complex and often emotionally-charged decisions, ensuring your loved one’s wishes and dignity are maintained at all times.
The types of decision you might need to make
Lifestyle and social decisions
Such decisions include understanding and sharing your loved one’s social interests and guiding their lifestyle team on how best to support your loved one as the decision is implemented. You’ll also likely make decisions about how their living space is arranged, ensuring it feels like home, filled with items of personal value and significance.
As the substitute decision-maker, you’ll communicate with aged care staff, family and friends about who your loved one would want to spend time with, what activities they would like to participate in and any that they prefer not to. These kinds of decisions ensure their social needs are met in a healthy and satisfying manner.
Medical treatment decisions
Some medical decisions will be very straightforward, while others are going to require a lot of thought and respectful discussion. When the latter arises, you will need to collaborate with your loved one’s nursing team, doctor, or both, to ensure you’re all aligned on your family member’s current and future care goals.
You’ll need to consider three essential factors: your loved one’s current health, their values and preferences and how appropriate the medical treatments are.
These can be really tough conversations, but the free DARD resources help you to be prepared by thinking through the types of decisions that may need to be made. They encourage collaboration with your loved one’s medical and nursing teams so you are more able to make decisions that truly reflect your loved one’s wishes when the time comes.
Becoming the source of truth for your loved one
If your loved one is no longer able to make decisions, you become the voice they trust. You also become the source of truth for their medical and lifestyle teams, who will seek guidance from you. This is particularly true regarding your family member’s medical treatment preferences, and never more than when end-of-life care is required. Having clear knowledge of their wishes, whether from an advance care plan or past conversations, is essential and important when making these decisions.
If you don’t have a care plan set in place, decision making becomes quite challenging. You might wish to speak with other family members, cultural or spiritual leaders and/or the aged care team, all of whom can help you and contribute to developing a plan that best honours your loved one’s values and wishes.
Keeping track of health
As a carer, it can be helpful to regularly monitor your family member’s health. This will keep you informed about any health changes that may impact on your decision-making. Staying in regular touch with the nursing team and your loved one’s doctor so you can review their health and treatment plan regularly is recommended. This will ensure that your decision making is empowered, informed and empathetic.
Staying connected with family and community
Keeping the rest of the family informed is important, but at times you may feel like you’re dancing a very delicate dance. All families are different, but in every case, the way you share information with your family will ultimately depend on your loved one’s preferences, as well of course, family dynamics.
Some families benefit from early discussions about care goals, while others may only need updates about significant changes. Either way, staying connected with family and the wider community is a vital part of your role as the substitute decision maker. DARD’s free resources can support you in finding the right balance for you.
For more information on how Dignified & Respectful Decisions (DARD) can help you or someone you know, visit www.dard.org.au.
Palliative Care Victoria (PCV) is the Victorian peak body for palliative care and end of life care. Our Vision is that all people with a life limiting illness and their families are supported to live, die and grieve well.
