Palliative care is for people living with a terminal illness where a cure is no longer possible. It’s also about people who have a complex disorder who need to control their symptoms. Although these individuals normally have an advanced, progressive situation, this is not always the case. Palliative care treats pain and other physical symptoms, or handles them. It also helps with any emotional, social or spiritual needs. Palliative care or end-of-life care may assist individuals with terminal conditions, such as cancer, to survive as long as possible and to allow them to die with dignity. But treatment at the end of life is not a simple operation.
Challenges for LGBT community
The process raises a whole host of challenges for patients from the LGBT community that they and their families through face. Not only do many LGBT individuals experience challenges with receiving high-quality end-of-life care, they may also face complications with their care. Often this may be because of ignorance during pre-hospital admission and discrimination against them. It can also be due to inadequate communication about treatment plans between patients and care providers, judgement by staff about the family or relationships of a patient, and a failure to adequately support the patient’s spiritual needs.
Many older LGBT people have significant fears about palliative and end of life care services. They are concerned that service providers and health and social care professionals will be indifferent to their sexuality and gender identity, or, at worst, actively hostile. They worry that palliative and end of life care services are simply ‘not for them’, or that they will receive worse treatment than their straight peers. Many have also experienced victimization; bullying and personal distress in their lives as a result of their sexual orientation, and may believe like it will affect their experiences or standard of treatment to inform a healthcare provider about their sexual identity.
What are the issues?
There are number of key issues experienced by LGBT people at the end of life:
Anticipating discrimination: Palliative care services are accessed late or not at all by individuals, are either because they have stigma or prejudice is expected or they believe the service not for them. Stonewall estimates that three in five older gay individuals are not sure that they will be able to recognize and fulfil their needs with social care and support services.
Complexities of religion and LGBT end of life care: Anecdotal evidence indicates that palliative and end-of-life care programmes do not always guarantee that LGBT patients and their families are treated at the end of life with the same spiritual needs as every other patient.
Assumptions about identity and family structure: Personnel in health and social care often make assumptions about the sexuality or gender identity of patients that have an effect on their palliative and end-of-life care experience. Evidence shows that on the basis of sexual identity, certain physicians do discriminate.
Varied support networks: At the end of life, LGBT individuals can choose to be surrounded by close friends and support groups that, alongside biological ones, represent constructed support networks. LGBT individuals may also feel concerned that they will not honor and accept their loved ones as next of kin.
Increased pressure on LGBT cares: There is increased pressure on informal treatment, since people are late or not at all to receive palliative and end-of-life care services. LGBT individuals can also face palliative care barriers because they are:
- Three times greater probability of being single
- Less likely to have babies
- Even more likely to be separated from their families at birth (though many LGBT people will have alternative family structures in place)
- A substantially higher chance of having harmful mental health problems
These factors are likely to lower the chances of stable, ongoing informal care for some LGBT people. Informal care, particularly from a partner, plays a vital role in ensuring someone gets access to palliative care.
Cancer and palliative care
It is likely that discrimination, fear and distress prevent patients from presenting for screening, prevention and routine cancer care as well as palliation during terminal illness. While the care needs for both heterosexual and LGBT patients are the same, sensitivity surrounding delivery of care warrants further exploration and should be individualized. When patients have overall negative past experiences with healthcare practitioners, patients are less likely to form trusting bonds and more likely to withhold personal information, eliminating the practitioners’ ability to explore symptoms and preferences to provide palliative care. Inclusion of appropriate decision‐makers, provision of accurate and relevant information and LGBT disparities trained healthcare professionals may decrease discrimination, fear, social isolation and distress.
Sexual orientation and gender identity
Sexual orientation and gender identity are also both key areas where inequality and discrimination can occur in end of life care. Poor training has been highlighted as one cause. But many of the shortfalls faced by the LGBT community during palliative care are prohibited and protected by the Human Rights Act 1998. Article three states that no one shall be subject to torture or to inhuman or degrading treatment or punishment, while article eight protects a person’s right to privacy, respect for their sexual identity and the right to control information about their private life.