“I’ve seen the difference an Advance Care Plan can make to someone’s life. It’s like a guide or road map for both your loved ones and healthcare providers. They know what you want and what you don’t want. It removes the guesswork. It allows people to feel secure if they have to implement the decisions that you made. A plan can reduce the anxiety and tension for everyone at a difficult time.”
Whether or not you’re living with advanced illness, it’s a good idea to think about what would be important to you if you weren’t able to communicate your wishes or were no longer able to make decisions about your care. It’s equally important to make other people, including family, friends, and your healthcare team members, aware of your wishes.
An advance care plan provides a written record of your wishes and preferences for your future care.Other terms that you may have heard include a "living will" or a "healthcare directive" or "personal directive."You can ask your healthcare provider or local health facility for details about making an advance care plan. There may also be workshops or information sessions available to you.
For more information about advance care planning, explore:
Healthcare directives
Healthcare decisions: An approach to decision making and advance care planning
For more information about advance care planning where you live:
Advance care planning across Canada
“I really wish we had each made an Advance Care Plan before my partner got suddenly very ill. His family lived 1000 miles away and started interfering from the beginning. They even contacted the hospital’s legal department. Luckily, he had a moment of lucidity and told the doctor and two nurses that I was his partner of many years and had the authority to make medical decisions for him, and to not listen to his family. We each immediately made an ACP once he was well enough.”
If you’re a 2SLGBTQ+ person, and especially if you’re an older adult or someone living with advanced illness, it’s wise for you to create a record of your wishes. Unless you give written instructions that will be understood and followed by healthcare providers, there’s a risk that you won’t receive the care that you would want – or that you may receive care that you don’t want.
Care providers may make incorrect or hurtful assumptions about your values and relationships that don’t accurately reflect who you are or what’s important to you. This can be especially important if there is a conflict between you and a family member because, without your written instructions, this person may be given the power to make care decisions if you’re no longer able to do so.
Ideally, consider naming someone who can “speak for you” and help to ensure that your wishes are known and followed.
For additional information about representatives or substitute decision-makers, see Choosing a healthcare advocate.
“I have certain views about life and death that may be different from others, so I immediately knew to make an Advance Care Plan. I’m not religious and have certain requests that I wish respected. It took time to note things that I wish to have and not have, but I wrote it all up, discussed it with my substitute decision-Maker, and made a copy for my doctor’s office. I also have a copy at home in case I have to go to the emergency department.”
Take time to reflect, gather information, and consider your options. Some example of questions you might ask include:
- How might my health status change and affect my care needs in the future?
- What worries or concerns me the most about relying on others for care?
- What are my choices for 2SLGBTQ+ inclusive care providers (e.g., family, friends, or paid caregivers)?
- What are my choices for where I could live and receive 2SLGBTQ+ inclusive care (e.g., at home or in a care home)?
There’s a lot to think about, but here are a few areas to consider:
Personal care
- If you were unable to dress, bathe, or toilet yourself, would you have concerns about your gender identity, expression, or physical appearance?
- Whom would you want to provide this care?
Personal relationships
- Is there someone whom you would like to visit or be with you during appointments or treatments?
- Is there anyone you would not want to see or hear from?
- Is there anyone whom you would want to be able to stay with you, perhaps overnight?
Safety, privacy, and confidentiality
- What might make you feel safer to be ‘out’ and free from discrimination or poor treatment because of your 2SLGBTQ+ identity?
- What do you need to know about 2SLGBTQ+ inclusive privacy and other policies designed to protect your personal information from being shared without your consent?
Spiritual or religious care
- Would you want certain spiritual care providers to have free access to you?
- Are there practices or faith leaders to which you wouldn’t want to be exposed?
- Would you prefer no religious or spiritual care?
Socialization and community connections
- Are there social or other activities that you would want to continue to attend?
- Do you have connections with 2SLGBTQ+ organizations that you would want to keep?
Levels of care
- Depending on your health and your care needs, would there be treatments or interventions that you would choose to start, continue, stop, or refuse?
- What are your wishes about life-preserving interventions, such as CPR (resuscitation)?
- What are your wishes about DNR (Do Not Resuscitate) or AND (Allow Natural Death) orders?
You may also want to express wishes about the care you would want while dying or after you’ve died. For example, you may like certain people to be present for your death, or there may be people you don’t want to be there. You may want certain rites or rituals performed, or you may want none. Your advance care plan can include instructions about a funeral, memorial, or celebration of life. You may also want to specify the gender that you want to be recorded on your death certificate. These instructions can also be included in your will.
For more information about known and respected wishes read Advance care planning from CINDEA.
