As human beings, we tend to put off talking about things we don’t like to think about: things like aging, declining health and death. However, at some point in a person’s life, end-of-life care decisions will have to be made. It’s best if you can voice them yourself, but when you can’t, someone else has to do this for you. That’s why it is important to have these vital conversations.
Many people don’t worry about end-of-life discussions. They depend on their family to ‘do the right thing’ for them. But, as many of us have experienced, being placed in the situation where a care decision must be made for a loved one is often much different than what you may picture in your mind. When the time comes to make a care decision on a family member’s behalf, it is a real gift if that person has had a conversation with you. You will better understand what they value and what they prefer in terms of their care. While conversations are the heart, writing is essential in preserving the information; it is a concrete record. That is why it’s even better if your loved one’s wishes are written in a personal directive.
A personal directive is the record of a loved one’s wishes for end-of-life care, written while that person has the capacity to understand the risks and benefits of their choices. These wishes are based on each person’s own values. If we know what that person prefers, we can act as their voice and see that their wishes are carried out, even if we don’t personally agree with the choice.
Sometimes families act on their own wishes, choosing what they want, rather than what the loved one wants. This can lead to unwelcome or uncomfortable treatment or stress. When a person is nearing death, doing ‘everything possible’ may help families deal with the impending death of their loved one, but it may be at the cost of creating a prolonged and uncomfortable death for the family member.
Proclaimed in 2010, the Personal Directives Act allows for a person to outline their values and their wishes for the type of care they would want in the event that they cannot speak for themselves. This includes, not only decisions about health care, but also about home care, food and clothing, leisure and recreational pursuits, and religious observances. It can name a delegate, who is appointed to carry out the wishes, or it can just state values, allowing the delegate to make the best choice based on what they know of your values.
Personal directives come into effect only when the person cannot speak for themselves. They can be changed, as long as the document is signed, dated and witnessed. A personal directive can be created at any time, and it is important to revisit your document any time you experience the following D’s: a change in Decade of life, Divorce, Death of a loved one, Diagnosis of a serious disease, Decline in health.
There are resources online that can help you create a personal directive. These can be found on the Capital Health website. The most important thing to do is to have a conversation with your family or with the person who you would want to speak for you.
As a tip, media can serve as a conversation starter: a news story, a magazine article, something that happened in a movie or TV show, a web page or blog. If it prompts you to think about end-of-life care, you could use it as an opportunity to ask your family members: “what do you think of this?” as the beginning of a real discussion.
Speaking from experience, to be able to say, ‘If (s)he was able to make a decision about these care options, this is what (s)he would say…” helps to lighten the burden of whatever happens as an outcome, as the choice of treatment belonged to that person.
While it may be a tough conversation to have, it’s an important one. As the heart of communication, speaking about your wishes for the future with a loved one, and documenting it in writing soon after, will preserve relationships and reduce stress. When the time comes, family members can get to what matters most: being the heart of a supportive and loving environment for everyone.