Put end-of-life wishes at the top of your to-do list

Old man lying in hospital bed holding daugher's hand
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John MuscedereThe new year is a good time to put making end-of-life wishes at the top of your to-do list.

It’s a perfect time to tell family and friends your health-care preferences in case one day you’re unable to speak for yourself. This advance care planning is good for your peace of mind and for your loved ones, too.

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Studies show that people who have conversations about their end-of-life preferences are much more likely to be satisfied with the care received. And their caregivers are less likely to suffer from depression or be left wondering if they made the right decisions for their loved ones.

The majority of those nearing end of life are often unable to make decisions for themselves. Yet one poll found that only half of Canadians had discussed their wishes with family or friends – and only 10 per cent had discussed the topic with health-care providers.

So here are four steps to help guide conversations about your advance care plan:

1. Reflect on what makes life meaningful for you

What do you value most about your physical and mental health? For many, this includes independence, interacting with family and friends, and favourite hobbies. Now imagine what might make life unacceptable for you.

Modern medicine can and will prolong life in many cases. But it can also mean prolonging the end of life and may require living with severe limitations, such as reduced mental capacity, loss of ability to control bodily functions, lack of mobility and loss of privacy. This is unacceptable to many people; one study found that over half of seriously-ill patients in hospital would rather not be kept alive on life support when there is little hope for a meaningful recovery.

Advance care planning is typically thought about in the context of advanced age or specific diagnoses such as cancer. However, it’s important for everybody to do, and particularly for those with multiple medical problems and frailty. While frailty increases with age, it can occur at any age and increases the chances of dying. Although catastrophic illness can occur at any time, frailty increases the likelihood that end of life is nearing and when life-prolonging procedures may not be appropriate or effective.

While many people reaching the end of life say they want to die at home, without an advance care plan, they are often trapped in hospital enduring heroic procedures rather than receiving comfort care during the little time they might have leftComfort care includes pain and symptom management to prevent or relieve suffering at the end of life.

2. Find out your care options and choose a substitute decision maker

Learning about care procedures for end of life will help inform your advance care plan. You can find some common medical and legal terms at advancecareplanning.ca. And talk to your doctor.

Many sick or elderly people worry about being a burden to their families. The good news is that patients who have end-of-life conversations place less of a strain on caregivers, and are more likely to receive hospice care or palliative support at home.

Think about and designate a substitute decision maker. This is someone you trust to make health-care decisions based on your wishes in the event you can’t make them.

3. Talk about your wishes

Talk to your substitute decision maker, loved ones and your doctor.

Your loved ones will be grateful that you spoke up. When patients have an advance care plan, their families are much more likely to know that their loved one’s wishes were known and followedLack of planning has been shown to leave families less satisfied during terminal illness or in the months following death.

There are many ways to get the conversation started and it doesn’t have to be grim. The pallimed.org blog recommends humour as a useful strategy. It may take a few tries to be heard but don’t give up.

4. Write it down – just like a will

Once you’ve arrived at a plan, write it down and make sure everyone knows. In particular, make sure that health-care providers and institutions are aware and have noted it in your chart. At present, patient preferences are only known in a minority of cases.

Canadians are living longer and healthier. A little planning can ensure the well-being of you and your loved ones at the end of life as well.

You’ve probably already written a will for your things, so why not write an advance care plan for yourself?

John Muscedere is the scientific director and CEO of the Canadian Frailty Network (CFN), a not-for-profit organization funded in 2012 by the government of Canada’s Networks of Centres of Excellence (NCE) program. He is also a professor in the School of Medicine at Queen’s University, and an intensive care physician at Kingston General Hospital.

John is a Troy Media Thought Leader. Why aren’t you?

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By John Muscedere

John is an accomplished critical care researcher whose primary research interests include nosocomial infections, clinical practice guidelines, knowledge translation and critical care outcomes. He has led or participated in the development of many national and international clinical practice guidelines which have guided critical care practice including guidelines for the prevention, diagnosis and treatment of ventilator associated pneumonia, hypothermia post cardiac arrest, calcium channel blocker poisoning and sepsis. In addition to his clinical and academic posts, John is the Scientific Director and Chief Executive Officer of Canadian Frailty Network (CFN), a not-for-profit funded under Canada’s Networks of Centres of Excellence (NCE) program. CFN is improving care of the frail elderly by: increasing frailty recognition and assessment, increasing evidence for decision-making, mobilizing evidence into policy and practice, and advocating for change in the healthcare system to meet the needs of this vulnerable population.

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