Why does palliative care need to consider access and care for LGBTQ people?

Inequity in access to high-quality care

Equity in access to healthcare, suggests that individuals who need it most, are able to use healthcare services in a timely manner to achieve the best health outcomes. However, the evidence is clear that for LGTBQ people, this is not the case. The term ‘health equality’ means that everyone has the same opportunities to access healthcare, whilst ‘health equity’ means that people in minority groups with a greater level of need and additional barriers to accessing healthcare are provided with additional help to bring them up to the same level of health as others. Inequity in access to health services for LGBTQ people has been recognised as a concern globally. This is especially the case in many parts of the world where it remains unsafe to be LGBTQ, with homosexuality still criminalised in 70 countries and 42 countries having no legal recognition of transgender people. There is evidence that in these countries people perceived to be LGBTQ ¹ receive worse care, due to discrimination, which may involve treatment being withheld from them. Individuals are therefore forced to make the decision between attempting to conceal their sexual orientation and/or gender or to avoid accessing healthcare completely. Even in countries with anti-discrimination laws in place to protect LGBTQ individuals, discrimination unfortunately persists; with a recent survey of EU member states reporting 47% of respondents had been discriminated against due to their sexuality/gender identity in the preceding year. There continues to be healthcare professionals who perceive an LGBTQ identity to be a mental illness which requires treatment, which may involve so-called conversion therapy. ² This leaves LGBTQ people with the decision of whether it is necessary to hide who they are to feel safe accessing healthcare.

Even in healthcare settings where there is no active discrimination, LGBTQ people may not access health services due to anticipated discrimination from healthcare staff. This is especially the case for older LGBTQ individuals who may have experience of historical discrimination from healthcare professionals, which may have included barbaric treatment such as forced electric shock therapy. Anticipated discrimination is also compounded by passive assumption making, in which all stages of healthcare experience from information resources, to clinical assessment language and forms presume patients and their families are heterosexual and cisgender. Fear of discrimination, means that LGBTQ people are at increased risk of presenting with more advanced disease, either through missing important healthcare screening, which is especially the case for trans men who may avoid attending cervical screening, or through ignoring early symptoms rather than face accessing healthcare. ³

Worse health outcomes and experiences

As outlined above, LGBTQ people are more likely to present with more advanced disease due to delays in accessing healthcare services and/or screening due to discrimination or anticipated discrimination. LGBTQ people also experience disproportionately worse health outcomes and a higher incidence of life limiting illness compared to cisgender heterosexual persons due to increased stress risk behaviour such as smoking and/or alcohol use and being more likely to live in poverty. ⁴ Intersectionality must also be considered for LGBTQ people at the end of life, with their physical and mental health inequalities compounded by other impacting aspects of identity and living situation such as social deprivation and ethnicity. Being an LGBTQ individual is associated with higher rates of mental health problems and worse psychosocial outcomes, including depression, anxiety, substance use disorder, and suicidality. ⁵ This may be related to LGBTQ people also facing additional potential stressors due to their stigmatised identity at a time of increased vulnerability during advanced illness and into bereavement. This includes family estrangement with limited social support, with LGBTQ people being more likely to be single and childless than heterosexual cis individuals; lack of availability of informal family care can have a significant impact on end of life care and the ability of patients to be able to die in their preferred place. This can lead to anxiety in ageing, with fear of accessing residential or nursing homes due to concerns about homophobia and little evidence about the experience of LGBTQ people living openly in care homes. Hospices provide support for many with advanced illness, especially at end of life, however in many countries hospice care had grown from faith-based movements, this can potentially lead to an aversion to hospice care for some people from the LGBTQ community due to previous harmful interactions with faith communities, which further impacts on receiving high-quality end of life care.^6,7 LGBTQ individuals are also at increased risk of disenfranchised grief, fear of disclosing one’s identity and legal and safety concerns. ⁸ Some countries implement policies that provide same-sex couples with decision-making rights. However, as outlined previously, many continue to criminalise homosexuality and offer non-biological families no legal power to be involved in decision-making. This places the LGBTQ person at a disadvantage and creates a challenging environment to provision of palliative and end-of-life care, and to enact surrogate decision-making.

Language matters

It is important to recognise that although we use the acronym LGBTQ, this is not a homogenous group, but a diverse range of individuals with differing needs. Providing LGBTQ-inclusive care requires understanding of some key concepts that healthcare professionals often lack, ⁹ for example using the term sex and gender interchangeably. It is important that healthcare professionals acknowledge these knowledge deficits and are open to education to improve knowledge of key concepts and inclusive language.

In general, healthcare professionals do not routinely ask about sexual orientation or gender identity. There is evidence that some healthcare professionals do not ask about LGBTQ identity if they feel that this topic conflicts with their own personal or religious beliefs ¹⁰ ; however, the majority do not ask because they do not understand its relevance. This is a fundamental lack of appreciation that sexual orientation and gender are an important aspects of an individual’s identity, and that delivering person-centred holistic care requires healthcare professionals to acknowledge this. Health care professionals may also avoid asking about sexual orientation and gender as they fear causing offence by asking. However, studies suggest that patients appreciate being asked and creating an open and accepting environment. This was seen to be preferable to healthcare professionals making heteronormative assumptions, which created a barrier to patients being able to correct the assumption and disclose their identity. The exception to this being in countries where LGBTQ people are still criminalised.

Need for further research and monitoring

Research with and about LGBTQ people and palliative care has been increasing over the past decade. In countries attempting to improve LGBTQ health, the evidence supports that the key steps would include improving the direct health care professional-patient interaction but that reducing health inequities from a wider public health perspective requires routine data collection on numbers of LGBTQ people within the health system as historically data collection has been inconsistent. The number of LGBTQ people within the health care system is often only an estimate; routinely gathering data on the number of LGBTQ people seeks to improve equity in access to services, facilitates tailoring services to patients’ specific needs, and creating a more inclusive and open environment. For example, in the UK, the addition of sexual orientation to the National Census in 2021 was a significant milestone, also the LGBT Foundation has worked closely with NHS England to champion the introduction of sexual orientation and trans status standard monitoring in healthcare. The need to routinely incorporate sexual orientation and gender identity into palliative and end of life care is well-supported by the research evidence and is something that could be replicated in other countries. However, it is unreasonable to expect changes to practice without ensuring that healthcare professionals receive information on why this is important and are given clear, feasible and acceptable ways to act on it. Further research with LGBTQ patients and healthcare professionals is required to demonstrate exactly how the healthcare professionals can appropriately ask about and respond to, information about patient sexual orientation and gender. In light of the variance in cultural views and legal protections on sexuality and gender history, this guidance and mechanisms to incorporate sexual orientation, trans status and gender identity into palliative care are likely to be country specific. Healthcare professional training is a common method to share and enact information to improve practice. While such programmes are beginning to appear in curricula and be offered to healthcare professionals, evidence is needed on their effectiveness. Evaluative evidence of LGBTQ training programmes is largely from before-after designs with short term follow-up but suggests positive improvements in knowledge and intended practice change. However, it is currently unclear whether that training improves practice and outcomes for LGBTQ patients.

How best to effect change?

A ‘routemap’ towards better access, experience and outcomes of palliative care end-of-life care for LGBTQ patients and their significant others will depend on multiple actions: political and legal protection and promotion of LGBTQ people and their health; routine collection of sexual orientation and trans status within health systems to reduce intersectional disparities; a health workforce that understands the importance of sexuality and trans status to assessment and care; evidence based interventions (e.g. training, assessment tools, communication guidance) to enable them to deliver sensitive and appropriate care. These steps may enable us to truly deliver inclusive person-centred palliative care end-of-life care and to reduce health inequities.