Advance Care Planning with people from LGBT communities: how can we do better?

Planning ahead -Natalie Koussa pic.jpg

Natalie Koussa, Director of Partnerships and Services, Compassion in Dying turns a light one of the key barriers to good, compassionate end of life care facing members of the LGBT communities.

Advance care planning is a fundamental aspect of ensuring that everyone receives
personalised, compassionate care when living with life-changing illness and towards the end
of their life. Research demonstrates the positive impact of advance care planning: in addition
to increased satisfaction with overall care, people receive fewer aggressive medical
interventions, have fewer hospital admissions and benefit from increased use of palliative
care services (Postgrad Med J, 2016).

Successive policy reports and commitments from health and care providers have
emphasised the importance of supporting people to plan ahead for the future, so that they
can receive treatment in line with their needs and preferences, particularly when they no
longer have the capacity to express this for themselves.

And yet we know that people from LGBT communities continue to face significant barriers to
receiving the end-of-life care that’s right for them.  ‘The Last Outing’ (University of Nottingham, 2014) identified that in addition to barriers faced by the general population (such as reluctance to think about end of life, or feeling daunted by the paperwork), distinct barriers continue to be experienced by those in the LGBT community.

The research revealed that a major barrier is the heteronormative understanding of ‘next of
kin’ (usually as a relative or spouse), leading healthcare professionals to make assumptions
about LGBT people’s preferences for care, including who is important to them. This may not
reflect the reality of LGBT people’s personal relationships, with potentially disastrous

Brian had such an experience when caring for his friend Tim, a gay man, at the end of his
life. Brian and Tim had been friends for forty years, and Brian had been Tim’s primary carer
since a diagnosis of dementia ten years earlier. Despite this, Brian was shut out of
conversations about Tim’s end-of-life care and decisions were left up to his estranged family,
meaning that Tim did not get the care and treatment he would have wanted.

“When Tim first moved into a nursing home, he was frequently disorientated,
confused and upset. Over time, his mood improved as I was able to work with his
healthcare team to ensure he could still do the things he enjoyed and make sure that
he was happy and comfortable. Then out of the blue, a representative from his family
suddenly made contact with social services, and from then on, at the family’s
direction, I was excluded from participation in all aspects of Tim’s financial and
medical care. All that remained was for me to visit Tim, which I did on average four
times weekly and, when things were very bad, every day. To the end I remained
Tim’s only regular visitor.”

Tim had unfortunately not recorded his wishes for future treatment before he lost capacity,
so best interest decisions about his care and treatment were left to people he had not had
contact with for years - with devastating results.

Experiences like this prompted Compassion in Dying to produce Your treatment and care:
Planning ahead for the LGBT community a booklet specifically designed to support LGBT
people to plan ahead for their future treatment and care – the first of its kind. Developed in
collaboration with Opening Doors London and Stonewall, the booklet explains in simple,
straightforward language the benefits of planning ahead and how to do so, as well as
specific insights that LGBT people may want to take into account when considering their
future treatment and care.  It outlines the key ways in which people can plan ahead under the Mental Capacity Act (2005):

Advance Decision

This allows individuals to record any medical treatments, including life-sustaining treatments,
which they do not want to be given in the future, in case they later lack capacity to make or
communicate a decision. If a person doesn’t feel that they have someone they trust to make
decisions for them, an Advance Decision is a way to ensure that their wishes are respected.

Lasting Power of Attorney for Health and Welfare

This gives a trusted person(s) the right to make healthcare decisions on the individual’s behalf should they lose capacity. Some LGBT people worry that those traditionally seen as ‘next of kin’ might automatically be given the right to make decisions about their healthcare should they become unable to make them for themselves. In fact, without a LPA, no one has this right. LPAs can be an important way of ensuring that LGBT people are able to choose who is able to make decisions on their behalf.

Advance Statement

This allows individuals to record anything that is important to them regarding their future care
and treatment, such as their sexual orientation and identity, religious or spiritual beliefs or
where they’d like to be cared for. LGBT people often report having to repeatedly ‘come out’
to different healthcare professionals, so an Advance Statement can also be a useful place to
record details about sexuality and gender identity, if they choose.

GPs and members of the public can access personalised support by calling Compassion in
Dying’s free information line on 0800 999 2434, with further information available online. We
also provide resources for healthcare professionals and CPD-accredited training about
advance care planning and the Mental Capacity Act.

General practice is an ideal setting for LGBT people to learn about the advance care
planning opportunities available and discuss their priorities and concerns. Tailored resources
for the LGBT community as well as greater awareness and compassion among healthcare
professionals will help to ensure that more people are supported to plan ahead for the future
- so that everyone can receive the care that’s right for them at the end of life.