Over the years you have probably planned for many events such as weddings or vacations, but if you are like many others, you have probably not planned for the medical treatment or palliative care you would like to receive if you become critically ill (1). Dr. Michelle Howard conducts research at McMaster University about end-of-life communication in primary care and encourages older adults – in fact, all adults – to start having ‘the talk’ now with their loved ones and caregivers.
Advance care directives or “living wills” are one way to make your personal wishes known about end-of-life care (2). Dr. Howard points out that while writing down specific care decisions is a good idea, it can sometimes be difficult to understand the medical implications of these decisions (use of a feeding tube, for example) and people tend to change their minds in the reality of a new medical situation. The important thing is to clarify your values and general wishes for end-of-life care with those who might speak on your behalf (family, friends or caregivers). This is especially important as you get older because of the increased risk of developing diseases that may affect your ability to make decisions.
You may be counting on your loved ones to make these important decisions for you, but – not only does this put them in a difficult and often stressful position – if you haven’t discussed it, they may not always make the choices you prefer. Research has shown that many family members are not able to accurately predict elderly patients’ treatment preferences (2).
When a patient does not have an advanced care plan and becomes critically ill, they may receive unwanted intensive care treatments in hospital instead of other options such as palliative care. Concerns about this prompted researchers to conduct a systematic review of 22 studies to compare the number and length of ICU stays for critically ill patients with and without advance care plans or palliative care counseling (3).
What the research tells us
When it comes to advance care planning it is true that “a stitch in time saves nine.” When patients planned in advance, they were 37% less likely to enter the ICU. Palliative care counselling for patients already in the ICU also significantly reduced the length of time they stayed there (3).
Procrastination is one of the main reasons people do not have an advance care plan (1). If you live in Canada, Dr. Howard recommends checking out the ‘Speak Up’ campaign for advance care planning (4). Taking time now to plan for the possibility of these events can save you and your family from unwanted stress (3).
“Many people perceive it is going to be difficult”, says Dr. Howard, but the Speak Up resources have tips and tools to help ease the conversation. She encourages everyone to think now about who would speak for you if you couldn’t speak for yourself, to let them know what your values and wishes are and make sure they are comfortable with those decisions. “It’s never too soon to do it – and you can keep revisiting it over your life time”
What a caregiver tells us
Diane is a retiree who provides caregiving support at a distance to her parents who are in their 90s. She herself has a care plan, has chosen a Power of Attorney, discussed her plans with her children and has paid for and planned her funeral arrangements.
Discussing end-of-life decisions with her parents, however “Is not as easy as I thought it would be… they don’t really want to talk about it.” She gives a few reasons why advance care planning can be challenging:
Fear it will change care
“My father doesn’t want to ‘rock the boat’” she tells us. He is concerned that if he or his wife indicate they do not want life saving measures, they will be less likely to receive quality care and necessary treatments now or if they are admitted to hospital.
Family members may not be the best substitute decision-makers
In Diane’s experience, it helped to choose a non-family member as a substitute decision-maker who – in an emergency – is less likely “to be talking with their heart or guilt”.
Geographic distance from family can also make it harder to have conversations about care decisions or facilitate these decisions when necessary.
Concern that care plans won’t be considered in an emergency
“I question whether or not our wishes will be upheld at the hospital” She herself experienced this when her husband was placed on life support against her wishes after a heart attack.
Ultimately, says Diane, the important thing is that “each person’s wishes are respected” during the care planning process and in making end-of-life decisions.
Check out the ‘Speak Up’ website
Resources and tools to help guide your advance care planning www.advancecareplanning.ca
Access the free online Advance Care Planning Workbook www.myspeakupplan.ca
What do you think?
Do you have an advance care plan? Have you discussed your end-of-life wishes with your family or your doctor? Share your thoughts in the comments below.