End of life care: Considerations for the LGBT community

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When it comes to end-of-life care, little research has explored the needs and preferences of lesbian, gay, bisexual, transgender or intersex (LGBTI) people and their families. In this post, Pink Families explores some of the challenges that families and individuals experience at the end of life. We also highlight why some people choose not to come out at the end of life and the impact this decision may have on the care provided to families.

Reasons to not come out

When it comes to end of life care, individuals from the LGBTI community don’t always come out to their health care provider.

There are many reasons why people choose not to come out at such a vulnerable time in their life.

Fear of discrimination

Some individuals from the LGBT community actively choose not to come out because they are scared that they will be discriminated against by health care providers.

They fear that discrimination may result in loved ones being excluded from their care and life during the final stages. This means that LGBTI individuals and families would rather not come out than risk sacrificing precious moments with their loved ones.

Church based discrimination

Also, sometimes LGBTI individuals and families are reluctant to come out because of the need to rely on church based services at the end of life.

In many countries around the world many hospices and care homes are affiliated with churches. This environment is sometimes viewed as hostile or not supportive. A number of churches, but not all, have openly ostracized, criticized and condemned individuals and families from the LGBTI community.

Impact of not coming out

Unfortunately, the impact of LGBTI families not coming out sometimes means that families are unable to receive holistic, patient-centered care when they need it.

This means that the families may miss out on comprehensive family support while their loved one is alive. They may also miss out on adequate bereavement care.

The needs of LGBT families

A systematic review, led by Dr Harding, identified a need for more research into the needs and preferences for LGBT families at the end of life.

These researchers completed a review of all of the research studies involving LGBT families at the end of life. They only found 12 papers.

Most studies involved lesbian women (10 papers) and gay men (6 papers). Only 4 investigated the care of bisexual people. No studies involved transgender individuals or trans families. They did not search for studies that involved intersex people.

The researchers made the following recommendations based on their findings.

  1. Professional education for end of life care staff is required in order to fully support the needs and preferences of LGBT individuals and families.
  2. The wishes and preferences of LGBT individuals should be respected. For example, same-sex partners should be involved in decision-making at the end of life, if this is what the patient prefers.
  3. Supportive groups for LGBT individuals and families are required. These groups need to establish a safe enough environment for LGBT individuals and families. A safe-enough environment is an environment where families feel able to share sensitive information about their sexual and gender orientation.

What next for the LGBT community?

Some choose not to come out at the end of life. This decision sometimes follows a lifetime of silence regarding their sexual or gender orientation. Sometimes however the benefits of coming out outweigh the disadvantages of not coming out and people go back into the closet at the end of their life. Around the world there is a growing recognition of the needs of LGBT individuals and families. This awareness can help support many individuals and families at this vulnerable time.

References

Harding R. Epiphaniou E. Chidgey-Clark J. Needs, Experiences, and Preferences of Sexual Minorities for End-of-Life Care and Palliative Care: A Systematic Review. Journal of Palliative Medicine 2012;15(5): 602-611.

In this video below LGBT families share their experiences of palliative care. The video was produced by Dying Matters to help end of life care professionals work more effectively with LGBT families. It is one example of work that is improving end of life care for LGBT individuals and their families.

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