Palliative and end of life care researchers at NIHR ARC South London have responded by initiating a project (ACCESSCare-Communication) to identify how LGBT+ people with serious illness want their sexual orientation and gender identity or gender history to be engaged with by health and social care professionals.

In this blog, we speak to Dr Debbie Braybrook, research associate in palliative care at King’s College London, about the research, as well as three public participants involved in the project, Ruth Rose, Paul Clift and Elizabeth Day. 

Interview with Dr Debbie Braybrook

Q: Debbie, what is the health and care problem you've been researching?

Healthcare organisations want to reduce inequity within their services, but LGBT+ people, who are higher risk of some serious illnesses, continue to report discrimination in care. The conversations LGBT+ people have with clinicians are not always inclusive, because assumptions are often made by clinicians about gender, sexual orientation and who their significant others are. This can be damaging to trusting relationships between professionals and patients, and provision of person-centred care. Despite this, the needs and experiences of LGBT+ people are not consistently integrated into healthcare curricula.

When seriously ill LGBT+ people feel unable to share important aspects of their identity this can be deeply distressing, detrimental to appropriate care, and hinder the involvement of significant others. Skilled communication is vital for delivering care that responds to individual needs, values and preferences.

Dr Debbie Braybrook, research associate in palliative care at King’s College London,

Q: What was the aim of the project?

ACCESSCare-Communication investigated the experiences and preferences for communication between health and social care professionals and LGBT+ people with serious illness (and their significant others) about sexual orientation, gender identity and gender history. We also sought to identify best practice to inform the development of evidence-based recommendations for clinicians and educators.

Q: What did the study reveal about communication between LGBT+ people and health professionals?

Clinicians want to provide LGBT+ inclusive care, but they report anxiety surrounding how to talk about sexual orientation and gender identity with patients. Unclear support from the organisations that clinicians work within – including lacking training and inconsistent policies  – contribute to the concerns of professionals and patients. Assumptions about people from some sociocultural and religious background may further discourage communication about sexual orientation, gender identity and gender history. LGBT+ people facing serious illness said that health and social care professionals can be inclusive in their care and support through openness about gender and sexual orientation that avoids assumptions, uses the language they use to describe themselves and their significant others, considers what they might be saying through non-verbal communication, explains the relevance to care of these aspects of identity, and respects and incorporates their choices.

Q: How did you develop the best practice guidelines?

We used evidence gathered from the interviews with LGBT+ people living with serious illness, their significant others, and health and social care professionals from a wide variety of specialities in this study, alongside findings of our previous ACCESSCare study, to develop the best practice guidelines. We tested the guide with several health and social care professionals and it was reviewed by LGBT+ community members. These comments were carefully considered and incorporated to improve the guide.

Interview with Ruth Rose, a public participant in the research  

Q: Ruth, can you tell us why you got involved in this research?

I was invited. I am fairly well known, as I sit on various committees, including one for NHS England. I was delighted to join. As I am unique as an older person who is transgender and not shy about talking about it. Particularly if it is contributing to medical and social care knowledge. My only drawback is that I have never been abused or discriminated against, because of my gender transition. Happily. My knowledge is thus limited.

Q: Can you suggest one thing that clinicians/other healthcare workers could do to improve the inclusiveness of their communication?

Hospital and clinicians have a primary objective to cure and care for patients who are suffering medically or physically. This must always come first. However, difficulties may arise in some circumstances, such as placement of patients who do not identify with their sex assigned at birth (e.g. trans, non-binary, genderqueer). Pre-agreed approaches should help clinicians to respond clearly and appropriately in these situations. Some trans patients may be self-conscious about wherever they are kept as a patient. Nurses, in particular, need to have answers to questions and instruction to help them in their care duties.

I know one or two people who underwent sex reassignment surgery abroad, some 50 years ago. They have been living without anyone knowing their original sex. Special care needs to be taken in such situations. For example, the right questions must be asked in the right way to make sure that surgeons know their sex at birth before undertaking internal operations.

Interview with Paul Clift, a public participant in the research  

Q: Paul, can you tell us about your experiences of communication while receiving care?

My experience has been highly variable. It is still best in HIV, but we might remember that HIV as clinical speciality and practice developed in the 1980s/90s shaped by close – arguably, symbiotic – relationship between patients and clinicians.

On the other hand, I have found in other specialities that [some] clinicians show discomfort toward the patient, preferring to address the symptom rather than the person. That old cliché ‘the stomach in bed 3’ unfortunately still plays out!

I strongly believe in research as a form of hard-evidenced, disciplined, activism. This project has much potential to affect clinical practice for the better, and to ease patients’ experiences

Paul Clift, public participant

Q: Can you suggest one thing that clinicians/other healthcare workers could do to improve the inclusiveness of their communication?

Be kind and make no assumptions! Allow the patient to be a person, and let them define their selves and their relationships and their significant others. The outcomes of this piece of research should help clinicians to engage with patients sensitively, allowing them to be themselves.

Interview with Elizabeth Day, a public participant in the research  

Q: Elizabeth, can you tell us about your experiences of communication while receiving care?

Most of my experience has been fine. I have worked in both health and social care as a clinician and as a manager. This means I feel confident dealing with staff. I am open about my sexuality and don’t give people an opportunity to be embarrassed or to avoid the issue where it is relevant. When I had a partner, this was easier because she was physically present. Now I am on my own it may prove more difficult. It will be interesting to see.

Photo credit: Penny Morgan

I was seen by a consultant about four years ago who had become enamoured of gender critical feminist ideas. At the time I was more concerned with the treatment he was offering me than to engage in a deeper conversation. The way he spoke about the ideas suggested that he assumed my partner and I (as lesbians and feminists) would agree with him. The academic language he used made it difficult to be sure what position he was taking and it was only afterwards that we realised that it was a Trans Exclusionary Radical Feminist (TERF) position. We didn’t challenge him because we were discussing what medication I needed to take for breast cancer and didn’t want to get into an argument – which is what would have happened, and it would have upset us at a time when we didn’t need this. Being a trans ally is something which is very important to me and I don’t want to be exposed to TERF thinking when I am making decisions about my healthcare.

Q: Why did you get involved in this research?

I first got involved when I saw an invitation asking people to volunteer to test a bereavement questionnaire that was going to be used for ACCESSCare-Bereavement. This was as someone who works professionally in the field of bereavement and as a lesbian whose partner had stage four bowel cancer and did not have long to live. Then I was invited to join the steering groups for ACCESSCare-Bereavement and ACCESSCare-Communication. I teach and supervise on a doctoral programme and wanted to be able to bring those skills to an area of research that was both important to me professionally and which I was living through personally.

Q: Can you suggest one thing that clinicians/other healthcare workers could do to improve the inclusiveness of their communication?  

To make sure there are visible signs that the service welcomes LGBT+ people and to ensure that staff keep an open mind about sexuality and gender and offer more choices than male/female. I know that non-binary and trans people can experience dysphoria when asked questions about their sex when attending GP and hospital appointments. This can mean that people don’t access the medical care they need. Information about gender and pronouns needs to be managed sensitively, but also shared appropriately with agreement from the patient so that, for example, someone non-binary or trans wanting to make a routine appointment doesn’t have to indicate their sex at birth in order to do so; or a trans woman doesn’t get repeatedly asked by different receptionists to book for a cervical smear, when they have made it clear that their sex at birth was not female.

Information about gender and pronouns needs to be managed sensitively, but also shared so that, for example, someone non-binary or trans wanting to make a routine appointment doesn’t get repeatedly asked by different receptionists to book for a cervical smear, when they have made it clear that they don’t identify as female.

Elizabeth Day, public participant

Find out more

Funding

This study is funded by the NIHR under its Research for Patient Benefit programme (Grant Reference Number PB-PG-0816-20001) and is supported by the NIHR ARC South London. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.