What Have I Done To Deserve This?

Mark Pedder and Roger Kelly from Keech Hospice Care discuss how end of life care colleagues can better meet the needs of the LGBTQIA+ community living with advanced ill health.

An estimated 5% of the population belong to the LGBTQIA+ community and, despite a common belief that life within the community is easier than it used to be, prejudices – overt and inadvertent – still exist.

In 2019, one in five lesbian, gay, bi and trans people in Britain experienced a hate crime or incident related to their sexual orientation or gender identity, while three quarters of trans people are the target of transphobic abuse every year.

But, when questioned, 57% of health and social care practitioners did not believe someone’s sexual orientation was relevant to their care needs.

The TransActuals 2021 Trans Lives survey showed that trans and gender diverse people feel disadvantaged when accessing health care. 70% of trans people reported having experienced transphobia when accessing healthcare services, while 57% said they did not go to the doctor when unwell to avoid encountering discrimination.

As palliative carers, we are patient-centred. This means we must be fully accepting, and seek to understand the whole person and what matters most to them. Doing so means challenging our own (often unconscious) biases and acknowledging that, even in settings which are fully inclusive, patients may be nervous, anticipating discrimination they may have experienced in other settings.

Some patients may have lived through a time where being LGBTQIA+ was illegal or rarely accepted (it wasn’t until 2014 when same-sex marriage became legal in England, Wales and Scotland).

Others, even those confident with who they are, may return to the closet after diagnosis, due to overwhelming feelings of vulnerability caused by their illness or through fear of receiving inferior care. This was particularly noted during the pandemic.

As end of life carers, how do we recognise the individual needs of LGBTQIA+ patients, and what can we do to support them with any issues or challenges they may face?

Some palliative care professionals have reported being so worried about saying the wrong thing and offending their patients, that they end up saying nothing and, as a result, needs of the patient go unmet.

While someone’s individuality can be private and sensitive, the most important thing for a patient in a care environment is that they feel they can be accepted for who they are, while being treated with respect. The goal of the vast majority of care professionals is to achieve exactly that.

Here are some dos and don’ts and hints and tips, which should help along the way.

1. Ask open questions
No patient should feel forced to share anything they don’t want to. Open questions allow a patient the freedom to choose what they wish to disclose and how much information they want to give.

E.g. Asking ‘What matters most to you?’ or ‘Do you want to tell me a bit about yourself?’ invites the patient to answer frankly and focus on their own needs. The key is knowing that anything could come up in the answer and showing that you accept it unconditionally.

2. Never make assumptions
If a patient comments they are married or have a partner, assuming their partner is a member of the opposite sex does nothing to promote inclusion. Asking a male patient, for example, ‘What’s your wife’s name?’ immediately points to the default assumption that the patient is straight, when this might not be the case.

Similarly, assuming a patient has children can cause awkwardness or upset. It is not uncommon for trans people to have strained relationships with their family or to have to present themselves as their assigned sex when family members visit.

3. Close friends are often of vital importance to LGBTQIA+ people
Coming out to one’s family can sometimes have dramatic results, with some family members unable to accept the news. The phrase ‘next of kin’ can sound biased towards heterosexuality.

Asking instead ‘who is most important to you?’ gives the patient the opportunity to say who they love and whose presence they most value.

4. Be respectful of names and pronouns
To find out how a patient wishes to be addressed, you simply need to ask. Don’t make assumptions – use gender-neutral pronouns (they/them) until you know for sure. It is important to then ensure you respect their wishes by referring to them with their preferred name and pronoun always.

It’s worth noting that changing a name legally isn’t a straightforward process. For this reason, a patient’s legal name may not be their preferred name. Having your own pronouns displayed on your name badge can help engender a feeling of acceptance and show that this is a safe, welcoming space for all.

5. Discuss with the patient their clothing and personal care needs
Where there are gendered options, discuss with the patient what clothing they’d like to wear. And when it comes to aesthetic and personal care needs, such as shaving, makeup and hair, speak to the patient about their preferences and what you can do to help.

How a person is presented is critical to their self-identity and being unaware or unsympathetic to this need could lead to a patient disengaging from the care or feeling that their whole self is not being taken into consideration.

To deliver the best patient experience and meet the needs of every patient, we must consider our own attitudes towards LGBTQIA+ people and be willing to face our own, even micro, prejudices.

Positive individual care planning is key, which means we can’t rely on tick box questions. We only see patients for approximately 1% of their care journey, so let’s make sure we get that 1% right.

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About the authors

Mark Pedder began his career at the age of 16 in a care home for the elderly. He soon realised the importance of compassionate end of life care and progressed on to become a nurse specialising in oncology and palliative care.

30 years later, he is a lecturer practitioner at Keech Hospice Care. He educates and trains a variety of health care professionals and is passionate about inclusion in end of life care, especially among LGBTQIA+ and homeless communities.

Roger Kelly is passionate about helping people find ways to improve their well-being through complementary therapies, mindfulness, self-compassion and relaxation. He has many years’ experience working in cancer and palliative care, and has also lectured on the use of therapies in this
area both in the UK and abroad. Most recently, Roger has been involved in teaching staff self-care in the palliative care sector and delivering awareness training of the palliative and care needs of the LGTBQ+ community.

What Have I Done To Deserve This Workshops
Mark and Roger co-host a ‘What Have I Done To Deserve This?’ online workshop every year in July during pride month, which is designed for professionals, patients and loved ones.

The workshop, which is free to attend, addresses the needs of the LGBTQIA+ community in relation to end of life provision and what can be done to make palliative care more inclusive.

Bespoke sessions are also offered at all times of year. To find out more, visit Keech Hospice Care’s education page Keech Hospice Care’s education page or contact them at clinicaleducation@keech.org.uk.