If you’re a 2SLGBTQ+ person living with advanced illness, you may be feeling uncertain about what lies ahead. You may be wondering about how your health will be affected and about how care providers will treat you if they know you’re 2SLGBTQ+. You may have concerns about having to share personal feelings or details about your body. Perhaps you’ve had experiences that left you feeling distrustful or afraid, causing you to avoid or delay seeking healthcare.
Acknowledging these challenges and the changes you’re now facing is an important step in finding inclusive care.
“When my spouse was in palliative care, a nurse came in with a rainbow flag on her nametag. I felt so reassured when I saw that. I felt like she had a sense of familiarity with us, with who we were. I knew I had an ally, someone who knew something about my life, my world.”
Learning more about inclusive care and palliative care can help you identify what’s important to you and how to find care that works for you.
Inclusive healthcare accepts and welcomes you as you are. Your needs are met because they are yours, not because they’re “special”. Inclusive care should be given at all levels in the healthcare system, some of which follow.
Primary care is typically your first stop in the healthcare system. It usually involves seeing your physician, nurse practitioner, or other general healthcare providers.
Secondary care generally is a referral to a specialist such as a cardiologist or an endocrinologist.
Continuing care is divided into two areas: home care (where someone comes into your home regularly to assist you with personal care, meals, medication, etc.) or moving into a care centre such as long-term care, assisted living, nursing homes, etc.
Palliative care supports patients and their families facing a life-limiting illness by reducing suffering and improving life quality.
Some people mistakenly believe that palliative or hospice care is meant only for someone who has cancer or is very close to death. This type of care can help provide comfort and relief from suffering in the early days of advanced illness, such as cancer, AIDS, kidney, heart disease, or side effects due to illness or medical interventions, such as radiation or surgery. Palliative care can be provided in your home or a healthcare centre.
Inclusive care and palliative care share some values and ways of working:
Whole-person care: The physical, mental, emotional, and spiritual well-being of the patient are parts of the care plan.
Patient-centred care: The patient and their family are considered as the “unit of care”. The patient defines who is and is not “family”.
Shared decision-making: The healthcare team includes the patient and their family, as well as healthcare providers.
Knowing that you’re entitled to this care may help you think about questions you want to ask care providers when looking for inclusive care.
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Inclusivity is about what matters to you. When meeting with a healthcare provider you can ask questions, and you can also watch and listen for signs of inclusivity. Some examples include:
- Does the care provider use or ask about your chosen name, pronoun, and significant relationship(s) without assumptions?
- Do they show respect for your physical and emotional boundaries?
- Do they show respect for your beliefs, values, choices, preferences, and identity?
- What does “whole-person care” mean to them?
- What does “patient-centred care” mean to them?
- How is “shared decision-making” carried out?
- How will your privacy be protected?
- Do they invite your feedback or input about services?
- Are they willing to listen and ask questions rather than make assumptions?
- Do they seem curious to know about you without being intrusive or rude?
- Are they willing to apologize and learn?
- Are staff given orientation and ongoing training about 2SLGBTQ+ issues?
“I have become really sensitive to reactions from people, whether it’s unconscious or not. You can provide training and education for people, but the acceptance has to be really embedded in the providers.”
Inclusive care includes policies and practices that aim to eliminate barriers and discrimination. If you visit a healthcare centre, some of the signs that you might look for include:
- 2SLGBTQ+ signs and symbols on windows, doors, and walls or worn by staff.
- Imagery or photos of 2SLGBTQ+ people in displays or handouts.
- Forms that include space for you to identify as you wish (e.g., pronouns, gender, etc.).
- Privacy policies and practices that include 2SLGBTQ+ concerns.
- Partnerships or collaboration with LGBTQ+ groups to learn about their needs and increase their awareness of services offered.
“There needs to be something visible, whether it’s a poster or a photo. So often, the pictures hanging on the walls are all bland and don’t reflect anybody’s life experience.”
Some other ways that you can determine if a healthcare provider or facility provides inclusive care, and find information and resources include:
- Talking to family and friends about their experiences.
- Contacting local 2SLGBTQ+ organizations, your primary care provider, and local health authority.
- Searching online for reviews or other information.
- Visiting a healthcare website or physical space to understand how welcoming or how safe it seems.
- Looking at policies and practices, such as mission statements, admission forms, or staff training, to see if they expressly affirm 2SLGBTQ+ inclusivity as a core value.
- Asking to speak directly with a healthcare provider and asking about their knowledge of and experience with any 2SLGBTQ+ medical issues might be of concern to you (e.g., HIV/AIDS, hormone replacement therapy).
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