LGBTQ+ people can face unique challenges at the end of their lives. The article discusses some of the struggles they face and why they face them. Advance directives are the best way for LGBTQ+ individuals to make their end-of-life wishes known and to counteract discrimination.
Individuals who identify as LGBTQ+ statistically encounter discrimination and this does not stop when they face death and dying.
Biased blood relatives and medical personnel can be sources of end-of-life challenges for LGBTQ+ community members.
Having an advance directive may assist in ensuring a more dignified and respected dying process.
The end of life is a profoundly intimate time for the dying person and their loved ones. The dying process can strongly illicit emotions related to fear of the unknown and anticipatory grief. For lesbian, gay, bisexual, transgender, queer, and non-binary (LGBTQ+) individuals, the challenges can multiply.
What are some possible concerns?
When a dying person is not cisgender (identifying with the gender they were assigned at birth) or heterosexual, the end of life may become complex.
For example, family members who previously rejected their now-terminal LGBTQ+ relative may wish to visit to say their goodbyes. They may still hold biases against the sexual orientation or gender identity (SOGI) of the dying relative. Relationships that are already strained can add undue burden on the dying one and their close caregivers.
Family dysfunctions are not the only issue facing terminal LGBTQ+ folks. They can routinely experience discrimination from their palliative and hospice care providers. The results can be devastating.
Culturally insensitive attitudes held by medical professionals can translate into micro-aggressions, withheld care, or abuse. Even people in legal same-sex marriages that have codified protections at the bedside are sometimes met with contempt.
The result could be that the non-conforming person may be denied the care, dignity, and support at the end of life every human wants.
Further difficulties for transgender individuals
Systemic and social prejudices that harm the transgender community persist and can follow them to the end of life. Again, the withdrawn relative who has not yet embraced the SOGI of their dying family member may arrive at the bedside, still deadnaming (using their birth name and not their chosen one), perpetuating an environment of perceived discord.
Medical workers are sometimes responsible for inequitable care provision when faced with patients and their bedside support system who are not cisgender or don’t fit a heteronormative presentation. Studies that contain evidence of this type of discrimination are now surfacing.
A supportive solution - advance directives
Advance directive creation acts as a vital process for formally stating exactly what a person envisions for their end of life. The term ‘advance directive’ is an umbrella term used for a group of formal documents that include a living will, a document naming one or more health care proxies, and organ/tissue donation documents (if so desired). It is not to be confused with a legal, financial will established with an attorney.
The living will
A living will spell out the detailed choices regarding what medical treatments a person would and would not want at the end of life. It communicates pre-planned decisions to all medical practitioners based on personal values. Also, a living will is what the chosen healthcare proxy will use as a guide in advocating for the dying LGBTQ+ person when they can no longer speak for themselves.
Each state has its own version. However, they all ask the same basic questions regarding medical procedures and interventions typical at the end of life. It guides medical providers in knowing whether or not to administer artificial hydration and nutrition as well as life-sustaining interventions such as a breathing machine or CPR.
Also, there is always space provided on the documents for writing personal statements and unique information to establish autonomy further. These addendums can be the key to receiving more personalized and respectful medical care. Appropriate pronouns, who one wants at the bedside, chosen name use, and more can be highlighted here.
What is a health care proxy?
A proxy is a person carefully chosen ahead of time to be the voice at the bedside when an actively dying person cannot express their wishes. This term is also known as a health care agent, patient advocate, medical power of attorney, or medical proxy (state-dependent). The proxy cannot override medical decisions if a person is conscious and competent at the time decisions are required.
It is recommended that more than one healthcare proxy be named in the advance directive. If one proxy is unavailable at a crucial time, having another designee who can step in can provide assurance.
Advance directives can be downloaded from the internet for free in every state. It may need to be notarized in addition to the necessary witness signatures. An individual’s primary care provider and all proxies must have a copy of the completed and signed documents. Providers can answer any questions to help make these personal medical decisions.
Advance directives are not only for those with a known terminal diagnosis. There is also the scenario of a sudden, catastrophic event that might lead to a critical care unit to consider. This now involves the forethought of younger, healthier individuals as well.
What may happen if no advance directive is available?
When a person is instantly unconscious and possibly dying related to an accident, essential decisions will need to be made immediately. Without a stated proxy, the closest blood relative will be legally elected as “next of kin” to make those choices. If that mother or father, sister or brother, is historically at odds with their dying LGBTQ+ family member, the situation has the potential for further disaster.
With an advance directive in place, wishes are already determined, and the supportive ally in the proxy role can guide the care desired and advocate for respectful treatment at the bedside. Having an advance directive may also prevent the need for guardianship imposed through the state probate court.
Ultimately, if no advance decisions are in writing, the stress of not knowing rests on those that care.
Every person over the age of 18 is encouraged to have advance directives in place, whether legally married, cohabitating, or single. They can provide additional protection of dignity the LGBTQ+ community asks for when it’s needed most. And, until more education is required for medical professionals in providing more culturally sensitive care, advance directives are another ally to add to the circle of support for the dying LGBTQ+ person.'