When it comes to decisions around our own health and well-being, it can sometimes seem easier or mandatory to turn to the opinions of medical professionals or caregivers, and so we take ourselves out of the equation. Add conditions or situations that make it harder or impossible to communicate our wants and needs—such as dementia or becoming critically ill (1;2)—and feeling empowered to speak up or having the ability to do so is further diminished or no longer an option. But we must remember that we are our own best advocate! Be it in managing chronic or progressive conditions or dealing with end-of-life care, proactively engaging in conversations, action plan development, and decision-making around our health is important. Luckily, there are various strategies—such as personalized care planning, advanced care planning, and person-centred care—that provide us with the opportunity to ensure our voice is heard (2-6).
Here are a few of the research-based benefits to being involved in discussions and decisions about our health. Click on the links below to learn more.
1. Management of chronic conditions
In Canada, 44% of adults aged 20 years old and over live with at least one of the top 10 chronic conditions—which include high blood pressure, diabetes, asthma, heart disease, and cancer (7). In fact, many folks over 50 live with multiple chronic conditions (8). Personalized care planning is a strategy centred on collaboration between patients and health care providers, and in some cases also caregivers. This type of teamwork involves discussions on how to treat and manage the person’s condition, goal setting, and the development of a tailored and actionable management plan to meet these goals. Research shows that this strategy can produce small improvements in health outcomes—such as blood sugar levels and blood pressure in people with diabetes, lung function in people with asthma, and depressive symptoms. It may also increase confidence in disease management (3).
2. Documenting and following through on end-of-life care wishes
Conversations around one’s end-of-life care wishes can be difficult for the individual themselves, as well as their caregivers and health care providers. Caregivers have expressed that often family members do not want to have these talks, while research has also shown that family members do not have the ability to predict the treatment preferences of their loved ones accurately (9). When it comes to health care providers, the evidence indicates that they face difficulties in identifying when older patients are in the last year of their life, do not adequately communicate the person’s prognosis to them during this time, and do not regularly involve them in decision-making about their end-of -life treatment (10). Together, these factors paint a picture for why advanced care planning is important.
Advanced care planning is a way for patients to communicate and document end-of-life wishes and the treatment decisions they would like made in the event they are no longer able to make these decisions themselves. It generally involves communication between patients, health care providers, and caregivers/family members (6;11). Research shows that this form of planning can enhance awareness of advanced-care directives—such as living wills—and life-sustaining treatments. It can also increase documentation of the patient’s wishes and decisions through items such as powers of attorney and living wills, while also increasing the chances that these wishes are followed (6). For example, having an advanced care plan may lower the chances of unnecessary and stressful hospitalizations (6) or unwanted intensive care while in hospital (2). Need help in getting started with advanced care planning? Check out the ‘Speak Up’ website.
3. Empowering caregivers and improving their health outcomes
The benefits of including people in conversations and decisions around their health extends beyond the individual to include their caregivers and family as well. Again, advanced care planning is a good example to refer to. In addition to the abovementioned benefits for the person receiving care, this type of planning may decrease depression, anxiety, and stress in families following the death of their loved one (6).
We can also look to 'person-centred care' for people living with dementia. This form of care takes into consideration the abilities of the individual, as well as what they value, prefer, and need. In patients, it can help reduce agitation (12), while in caregivers, it may reduce stress and burnout (5). Making decisions that impact the health and quality of life of a loved one or even whether they live or die is not an easy task for caregivers. Luckily, it appears that person-centered care may be able to assist family members who make decisions on behalf of loved ones in increasing their confidence in the decisions they are making (4).
Whether it is about a new or current disease management plan or preferences for your end of life care, do not count yourself out of conversations that concern your health and wishes. Speak up and make your values, needs, and wants known, while also seeking a collaborative relationship with caregivers and health care providers.