Advance care planning (ACP) is a well-considered plan expressing a person’s wishes in the event of an accident or illness that leaves them unable to guide or direct what happens to them next. Many people have told their partners or children what they’d like to see, but an ACP makes their wishes enforceable. As we discussed in our April post, the wishes of 2SLGBTQI+ seniors or people with critical illness are often overridden by biological family members who may have their own agendas or ideas of “what’s proper.” Insensitive or uninformed institutions may also create more trauma than comfort during critical or end-of-life care.
These tips for creating an ACP will ensure that 2SLGBTQI+ people will receive services and treatment with respect and dignity.
What is an Advance Care Plan?
Advance care planning begins with conversations with one’s partner, close friends and family about the individual’s wishes for personal care and end-of-life affairs.
The next step is to record those wishes, ensuring care teams and decision-makers have copies. This constitutes an advance care plan and sets out caring and final wishes for the eventuality of a person becoming incapable. An ACP generally consists of:
- A Representation Agreement: Contains written instructions and names the person who will make health and personal care decisions.
- An Advance Directive: Instructions for care given to the health care provider must be followed directly when it speaks to the care needed when the person becomes incapable.
- An Enduring Power of Attorney: Names someone who will make decisions about the incapacitated person’s financial affairs, business and property.
Considerations in Advance Care Planning for 2SLGBTQI+ People
A largely invisible minority, many of the physical and mental health conditions of 2SLGBTQI+ people’s needs are different from those of their straight peers. They are more likely to live alone and fewer have developed advance care plans than their peers. These are some specific suggestions for 2SLGBTQI+ people when creating an ACP:
- Accessing timely services: 2SLGBTQI+ people with a history of intense oppression, including newcomers and seniors, may delay or not access various services. They may fear stigma or rejection from both health care providers and others receiving care. Those fears may be rooted in direct experience of hate crimes, past experiences with similar services, or the belief that various services are not suitable.
- Finding competent care providers: Decision-makers must select culturally and medically competent care providers. Generally, care providers are less likely to have cultural competence to serve 2SLGBTQI+ persons. People continue to experience privacy breaches, being misgendered and being treated by care providers who lack the knowledge, skills, or attitudes necessary to provide appropriate and affirming services.
- Acknowledging and including varied support: Support of 2SLGBTQI+ people may include biological families, but often do not as fewer 2SLGBTQI+ people have children and spouses than their cis-gender, straight peers. 2SLGBTQI+ people need to stay connected to what are often varied support networks, such as those found in friendship networks (chosen family). In situations where several people may love a person, they may not be included in times of difficulty.
- Avoiding unsupported grief and bereavement of those left behind: It is important to encourage discussions about who is important to the person, identify who will be able to carry out their wishes and who may need support in bereavement. Some 2SLGBTQI+ people feel they need to hide their grief; others are ignored by family. Yet like any other bereaved person, the death of a loved one may result in loss of identity. Former or estranged spouses and children who have not accepted their former spouses’ or parents’ life decisions may also experience guilt with bereavement.
- Ensuring memorials and disposition of remains respect a person’s wishes: State in the plan how the person wants their gender recognized, for example during memorial ceremonies or on burial plaques. List the relationships to be recognized after death and the loved ones to be included in announcements and at memorial events.
- Assisting with cultural safety: Multicultural 2SLGBTQI+ clients may require extra support. Not only may they have faced stigma or even death threats about their sexual orientation or gender expression, but discussing death or end-of-life planning may be taboo or considered bad luck in their culture. Help and support them with approaching advance care planning with their families.
What Constitutes a Family?
The preferences and decisions of the biological family and the “family of choice” may clash. A family of choice is the group of people the person has chosen to spend their lives with, such as a common-law partner or partners, children of those relationships (whether the person’s own biological child or not), their partner(s)’s families or other people within their chosen community who act as family members. The potential ambiguity is reason enough to formalize the person’s wishes in an advance care plan and will.
Sometimes the needs of biological family members who have not accepted their child’s, parent’s, former husband’s or wife’s life choices result in the exclusion of “families of choice.”
Older 2SLGBTQI+ people fear their partners or persons they provide care for will be disregarded or disrespected. The decisions and actions of non-supportive family, friends and care providers may go against the wishes of 2SLGBTQI+ people.
Without an Advance Directive or Representation Agreement, the law prioritizes people who are able to make a person’s healthcare decisions. B.C. Law prioritizes a spouse, then other biological family members as temporary substitute decision-makers when the person is incapable of making their own decision. This includes former opposite-sex spouses if the relationship hasn’t been formally ended.
In the absence of documentation to the contrary, health care providers must choose the first in listed order:
- the adult’s legal spouse, as defined by B.C. family law
- the adult’s child
- the adult’s parent
- the adult’s brother or sister
- the adult’s grandparent
- the adult’s grandchild
- anyone else related by birth or adoption to the adult
- a close friend of the adult
- a person immediately related to the adult by marriage
This emphasizes the importance of an Advance Care Plan. People with chronic health conditions, who engage in high-risk activities, or are marking a significant birthday should have an ACP. Make sure the people who need it can find it, quickly. The document can be changed at any time as long as the person remains capable.
Resources to Create an ACP
While there are many resources explaining how to create an advance care plan, there are two developed specifically with 2SLGBTQI+ people in mind. The LOVE (Living Out, Visibly and Engaged) CRN on Vancouver Island has presentations and materials to use with 2SLGBTQI+ clients and groups to guide them through the planning process.
Simon Fraser University’s Gerontology Research Centre has resources including three booklets – My Wishes, My Care and the Conversation Starter Kit – creating a great package to start conversations with clients or for them to use with their loved ones. These are available in English, Punjabi, Hindi and Chinese.
More generalized but also useful are ACP templates created by the Government of BC and downloadable in 11 languages.
Celebrate PRIDE by Demanding 2SLGBTQI+ Rights at End of Life
According to QueerEvents.ca, “On August 28, 1971, roughly 100 people from Ottawa, Montreal, Toronto and the surrounding areas gathered in the pouring rain at Parliament Hill for Canada’s First Gay Liberation Protest and March. They presented a petition to the government with a list of ten demands for equal rights and protections. Simultaneously, another much smaller group of roughly twenty gay activists demonstrated at Robson Square in Vancouver.”
Two years later, this evolved into an annual event that celebrated gay community pride and continued the demand for equal rights.
2SLGBTQI+ people can continue to exert their demands for rights by completing advance care plans to ensure they and their loved ones are treated with respect during critical illness and end-of-life care. It is the ultimate act of love and pride for themselves and their chosen families.
Acknowledgment: This blog couldn’t have been written without the generous support of Horst Backé, Vancouver Island LOVE CRN, and Dr. Gloria Gutman, Professor Emerita, Simon Fraser University, Gerontology Research Centre.
Explore our website to learn more about BC CRN or connect with your local CRN for more information or resources.
