Definitions | Ageing as an LGBTQ+ Person | Needing Care | Death Planning | Grief and Bereavement | Caring for Yourself and Others | Money Matters | Resources
- Ageing as an LGBTQ+ Person
- Community Views
- Call to Action
- Having difficult conversations
- Why do we find it difficult to talk about dying?
- Why it is important to have these conversations
- Ageing with HIV
Ageing as an LGBTQ+ Person
Whether you are seeking information on palliative care and/or end-of-life planning for yourself, a partner, a friend or a loved one, this toolkit has information and resources to help you make decisions that are right for you. If you are young and healthy, dying may seem a long way off. This toolkit includes information that you can use right now.
LGBTQ+ people are diverse, although we are brought together as a strong human rights movement, each letter representing its own population, with its own unique experiences and needs.
Thinking about death and dying can be complicated and scary. As LGBTQ+ people, we have additional questions and concerns:
- Will my identity be affirmed and respected in health, aged and end of life care?
- Will my chosen family be able to visit and plan my funeral?
- Will my identity be respected after I die?
The things many of us fear most about dying include pain, loss of choice and control, and dying alone. When a person collapses and is rushed to the emergency room, loved ones are suddenly put in a stressful and chaotic situation, at a time when they often do not know the medical staff treating their loved one. Emotions can run high. If no one has considered what a person wants done in this situation, then families must make tough decisions with unknown outcomes under intense pressure. This is why it’s not only important to decide for yourself what you want to happen and to communicate your wishes, but to discuss with your loved ones what they want to happen in the event of their sudden illness or death.
"Most experiences of LGBTQ+ people are the same as the rest of the community; people wanting their identity to be respected" - Julie.
ACON, in partnership with Carers NSW, Palliative Care NSW, Positive Life NSW and Seniors’ Rights Service conducted a community needs analysis in late 2020, to explore Palliative Care and End of Life (PC & EOL) concerns for LGBTQ+ people, including PLHIV and their carers.
The analysis found that many people are unsure of their options for end-of-life planning. It also showed that, whilst 63% of respondents had a will, 45% hadn’t discussed Advanced Care Planning with their partner/s, friends or family (family of choice or family of origin, or both) and 81% haven’t had these discussions with their health care provider.
Participants told us that the major worries we have as a community are:
- Concerns about the inclusion and respect of our chosen family, partners and friends according to the individual.
- If we live alone or are socially isolated, this may impact on the quality of palliative care received or that wishes for end of life will not be met.
- Issues around family of origin and legal rights. Uncertainty that the law will recognise and involve our family of choice in end-of-life decisions and care.
- Fear of discrimination, prejudice, and stigma, including sexuality and gender-based discrimination (for example, homophobia, transphobia, bi+ erasure, and cisgenderism).
- Concerns about being misgendered or treated differently because of their gender were described by several trans people.
- Women (cis and trans) expressed concern about their needs being overlooked or assumed to be the same as for gay cis men.
- Worries about the lack of understanding of our communities’ needs – a desire of culturally appropriate, sensitive, and affirming care.
Call to Action
It can be almost impossible to make decisions when you are stressed, upset, and need to decide what’s best right away. This is much tougher if you wait until you or someone you love is ill or dying.
We often don’t want to think about end-of-life when we’re healthy and living busy lives. Making plans when you do not need them though makes things much easier when you do.
Even though certain rights have improved for some in the LGBTQ+ community, including marriage equality, we should not assume that all our rights will be respected. Being proactive and improving our understanding of end-of-life processes will pay off in the long run.
Older LGBTQ+ people are refusing to be “put back in the closet” as they age, specifically when entering aged care services. Let us be proactive with all our end-of-life processes, regardless of our age or health concerns.
Having difficult conversations
Many of us find it hard to talk about death and dying. The first step in making your wishes known is to talk to your loved ones. Think about the people in your life. Who are the people who are not afraid of speaking up and able to get stuff done? Ask them if they would be willing to be responsible for decisions when you are no longer able to advocate for yourself, including if you are too sick or injured to speak for yourself, and for when after you die, including your funeral and your will.
Why do we find it hard to talk about dying?
“It’s just not culturally in our mindset that we are going to die so we don’t plan, we don’t think about it”. – David Polson
For most of the human experience, death has been accepted as part of life. Until the 20th Century, sick and ageing people were cared for at home. Death usually happened in the home, and families would keep their loved ones at home until the funeral, preparing them for burial themselves.
This changed, in the Western World in particular, in the Twentieth Century, as hospitals became larger, safer and accessible to most people. Along with birth, death shifted from being part of life in the home to a medical event that often took place in hospital. Commonly, people die in hospitals, then their bodies are taken from the hospital to a funeral home, where they are prepared for the funeral by the funeral home staff. We no longer commonly see death; it has become the realm of the professionals, something that is removed from the experience of our daily lives. Consequently, death has become taboo or minimalised in conversations in our society.
For LGBTQ+ people in particular, the HIV epidemic is never far from our minds. Many of us remember losing friends, loved ones, colleagues, chosen family and communities. More than 7,000 Australians have died of HIV related illnesses. These are not just numbers, but people we cared for, loved, and miss every day. We remember the trauma and the stigma of earlier times, and it affects how we view death and dying as we age.
Additionally, many people come from an environment where people aren’t encouraged to openly discuss their emotions. Friends and family of the dying person may be in denial, unfamiliar with medical terms and procedures and willing to put faith in medical professionals without question, fear of their own mortality, a fear of saying the wrong thing and guilt over past events. The culture of toxic positivity has worsened the cultural norm to say you’re fine and doing well when asked how you are.
For the dying person, there can be a lack of privacy in hospitals and nursing homes which makes it difficult to talk. People do not want to be a burden, there can be unresolved past tensions, guilt, and denial that you are dying.
Why is it important to have these conversations?
ACON’s PC & EOL needs analysis found that people aren’t aware of their rights in end-of-life care and death. For example, 62% of people in our survey didn’t know that they could refuse treatment or change their mind about treatment, even if they lacked capacity to decide. The more informed we are, the more likely we are to make better decisions sooner, supporting and improving our end-of-life journey.
Death over Dinner invites you to take part in the most important dinner conversation Australia is not having. It’s time to share your end of life wishes and plan a dinner to help others share theirs.
An online card game to help you work out what’s important to you at the end of life, and start discussions about what you want.
For many LGBTQ+ people, our chosen families can look vastly different to our biological families but are equally if not more important to us. These families of choice are diverse family structures and support networks that include but are not limited to life partners, close friends, and other loved ones not biologically related or legally recognized but who are the source of social and caregiving support. These families of choice may also include some relatives. Some of us also belong to family structures such as kinship groups, connected through land, culture and spirituality.
Ageing with HIV
“One of the things that HIV has taught me is we need to be prepared. In our culture we don’t embrace death as part of life, and we all think we are going to be here forever”. - David Polson
In the early years after the discovery of HIV, for many people the prognosis was poor. With the development of antiretroviral therapies, HIV has gone from being a short term life limiting illness, to a long term condition. People with HIV who can access medications can expect to live to and plan for old age.
People with HIV who begin treatment early and who maintain effective control of their HIV viral load have a life expectancy no different from the general population.
HIV infection can still have an effect on the body, particularly if you have been living with HIV for a long time or were diagnosed with late-stage HIV. HIV potentially causes premature ageing of the immune system, which means there may be at risk of disease at an earlier age or at slightly increased rates compared to the general population.
Potential health issues may include a higher risk of cardiovascular disease, cancer, chronic kidney disease, diabetes, osteoporosis, frailty, and neurocognitive deficits. If you are living with HIV, it might be good to start to think about how you wish to experience your end of life and what you may need.
Living with HIV is now considered a manageable chronic disease and good healthcare will contribute to maximising your health longer while reducing the risk of HIV associated health issues.
People living with HIV, receiving adequate care and managing their health well can now expect a near normal life expectancy.
However, some older people living with HIV may have concerns about their future health and wellbeing. Some concerns include their ongoing medical care and treatments, the legal documents required, inclusive service provision and other resources available to support their care.
If you are living with HIV, it might be a good idea to start to think about how you wish to experience your end of life and what you may need.