Definitions | Ageing as an LGBTQ+ Person | Needing Care | Death Planning | Grief and Bereavement | Caring for Yourself and Others | Money Matters | Resources
- Needing Care
- Sharing your end-of-life journey
- What is terminal illness?
- Palliative Care
- Who to involve in your palliative care team?
“I would like to stay at home as much as possible. I've had thousands of hours in hospitals, and they are a great place to be if you are really sick, but I would prefer to be in my own surroundings.” - David Polson
It is normal to feel concerned about the prospect of ageing and needing support as we age and approach the end-of-life. As LGBTQ+ people, we share the same concerns that many non-LGBTQ+ people feel, in addition to concerns about whether the end-of-life care we receive will be inclusive and affirming of our sexuality and/or gender. These concerns may include:
- Fear of stigma, prejudice and discrimination around our sexuality and gender identity.
- The inclusion and respect of our loved ones in our care, including respect for their input in decision making and legal processes.
- For trans people, concerns about misgendering and being treated differently due to their gender identity.
- Social isolation.
- A lack of understanding of our communities’ needs.
- The need for appropriate affirming, sensitive and culturally appropriate care.
- Concerns about our social and spiritual beliefs, particularly when receiving care through organisations whose spiritual beliefs may differ from our own.
- Many of us have experienced discrimination and stigma in healthcare, disability care and aged care settings. Many in our community continue to carry the grief of loss and the trauma of societal and political responses to the AIDS crisis.
Our genders and sexualities are what make our communities unique. Our families often look different to what we find in the broader population; we may have same gender partners, trans partners, be in polyamorous relationships and more. We may have family connections not legally recognised through birth or marriage who we want to include in our care and planning; we might not want our family of origin to be involved.
Not everyone can or wants to be out in a care setting, so it’s important for services to provide an environment that enables LGBTQ+ people to be their authentic self. Some people will be confident in their identity and others may take time to feel they can trust the service to support their journey, as they see it. Services with policy and procedure regarding inclusion of diverse genders and sexualities helps LGBTQ+ people feel welcomed and accepted. Some of us may choose not to be out, and those wishes also need to be respected.
“Many much older people 80 plus have hidden their identity their whole life and they do not want to reveal their identities now, it can be quite traumatic for that to happen.” - Julie
Sharing your end-of-life journey
Even though we all know we are going to die at some stage, it is one of the most challenging journeys we are going to experience in our lives. Sometimes death comes quickly at any age. Other times it may be a drawn-out process with multiple medical interventions along the way. Some of these interventions may be to prolong our lives and others may be to prevent pain and help make our final days more manageable. However you go, having that special someone or several people to walk with you on your journey, can make this easier.
You may have a partner who can be this important person but if not, reach out to friends and families of choice, letting them know you do not want to do this alone. It may be challenging for them as well to be losing someone in their life but at the end of the day, you both get to share this precious time together.
What is Terminal Illness?
Simply put, a terminal illness is an infection or illness which will result in death. Terminal illnesses or infections are considered incurable when there are no therapies or interventions available which will eliminate it from the body.
Receiving a diagnosis for a terminal illness is life changing and can be very tough. When you receive a terminal diagnosis, it is a life changing shock for you. Doctors can also find it difficult to deliver these diagnoses. Some people report doctors not providing relevant information unless you ask specific questions. If possible, it helps if you can have someone you trust by your side at this time. They can listen to the diagnosis in a way that you may not be able to in this critical time.
Palliative care is person and family of choice-centred care provided for a person with an active, progressive, advanced illness, who has little or no prospect of cure and who is expected to die. The primary goal is to optimise their quality of life.
Palliative care can include help with people’s physical, social, emotional and spiritual needs. It can be provided in various places, including at home, in hospital, in a hospice or a residential aged care facility. It can last weeks, months or even longer than a year.
People from LGBTQ+ communities often have special support people in their lives that are important to them for a variety of reasons. They may be partners, friends, family or LGBTQ+ peers. It’s your choice who you want to include in your death journey.
Who to involve in your palliative care team?
You can decide who you wish to include in your palliative care team. Your palliative care team may involve many people – doctors and nurses, allied health professionals such as physiotherapists and chiropractors, Aboriginal health care workers, alternative health practitioners such as a naturopaths, aromatherapists, Chinese Medicine practitioners, and massage therapists, as well as paid carers, providing personal care in your home.
The type of care that is available will depend on your care needs and local services available. This may include pain/symptom management, medication management, counselling services, and providing patients with equipment.
Palliative Care may also provide referrals to other services for personal care and home care services, respite care, and bereavement support.
As well as professionals, your care team may involve your family (family of choice and/or family of origin), partners, friends, volunteers and carers. They may provide personal care, assist you with administering medication, or provide you with emotional or spiritual support, transport, shopping for essential items.
Together, these people make up a Palliative Care Team.
See Resources and Related Content for more information and links.