Richard Harding, of King’s College London, spoke to us at the HIV Endgame conference about palliative care and helping patients prepare for death.
The HIV Endgame logo appears on screen. Text reads: Richard Harding answers questions on end of life care. Richard Harding sits in front of a wood-paneled wall answering questions from off-camera interviewers. The text of each question appears on screen in between clips.
Richard Harding: So, my name’s Dr. Richard Harding. I’m based at the Cicely Saunders Institute, UK. My main research interest is quality of life and living well with incurable disease, whether that’s HIV, heart failure, cancer… And my interest is, from the point of diagnosis, how can we optimize somebody’s quality of life so that not only do we extend life, of course, but we make sure that extended life is life that’s worth living.
Q: Why is it important to talk about and plan for death?
Harding: Preparing people for death is a long-term and complex process. Now, for some people, it’s going to come sooner than later. What the worst thing we can do is not discuss and address death until it arrives. So, if you’re in the last days and hours of somebody’s life, your ability to intervene and do very much for them is greatly diminished. If we plan in advance, we can make sure that what matters to people, how they want to die, can be achieved. If we wait for those last days, actually, we’ve lost an enormous amount of opportunity to make them peaceful, to have their problems maintained, and to plan for them to be in the place that they want, in the way that they want.
So, actually avoiding conversations about death causes enormous amounts of distress that is absolutely unnecessary.
In the world of HIV palliative care, of course, we’re talking about the two biggest taboos, sex and death. But, actually, it behooves every clinician to introduce the topic early. You don’t have to have the full conversation. And what matters to people might change over time. But, if you’ve got somebody with HIV with a comorbidity that’s not reversible — maybe heart failure; some other organ failure, frailty, cognitive decline, — let’s ask, now, if you got to a position whereby you weren’t able to express your own wishes or whereby death may come and it may not be very predictable, how would you like to be cared for? What would you like? And that can give people an enormous sense of peace to know that, when the end does come, maybe soon, maybe later, but when it does come, you’re going to be cared for in a way that you feel comfortable with.
Q: What do people fear when they start palliative care?
Harding: There are two important things. First of all, the primary concern that people have is pain. And pain is cheaply and easily managed. So, people fear pain, and it’s really important that we are clear to patients that we can manage pain.
Another problem that people report, or you can you can find within people, if they don’t easily express it, is a fear of being a burden on others. And this is really important, that palliative care is available. That we don’t offer people other alternatives just because they fear that they’re going to be a burden on their family. So, palliative care is really essential, to make sure that we support the patient and the family and, actually, they don’t have to take any of the more serious options because they fear they don’t want to be that burden.
Q: What role does social isolation play for the LGBT community?
Harding: So, first of all, I’ve been running a study in the UK called Access Care, which is about improving palliative and end-of-life care for LGBT people. And the issue of social isolation in older people, I think, is absolutely key. Because what we do know is, if you’re going to maintain people in the home, and prevent unplanned admissions, you can be more successful at staying in the home if you have an informal carer.
So, LGBT people are more likely to be single in later life, and they’re also more likely to be socially isolated. So, clinical services need to be really clear that they can identify a formal or informal care structures around that person to be able to make sure that they can be maintained in the home. And I think that’s really, really key for older people.
But also, when they do enter formal services, that those formal services can reflect the needs and social history and preferences of a lesbian, gay, bisexual, or trans person. That there are some signs, symbols, meanings, open doors, for somebody who doesn’t identify in a heterosexually modelled service, whether that’s been intentional or not on the part of the service. But you need to think about that.
Q: What impact does LGBT history have on experiences of loss?
Harding: So, we’ve recently published a systematic review of the evidence for bereavement experiences for the LGBT community, and there are two things related to the HIV epidemic. Certainly, the older gay men who lost large members of their social circle definitely have that bereavement resonated in later life when they faced further personal bereavement. It’s a kind of bereavement experience built on previous bereavement, and that may actually exacerbate their experience. S
econd thing is that we know, actually, very little about how some of the pre-existing challenges, such as previous bereavements, but also the fact that we know that LGBT people have worse mental health compared to the heterosexual population, because of discrimination — so how does that pre-existing higher burden of mental health then exacerbate the bereavement experience?
And, third, we actually know that one of the important things we do in palliative care is enable the patient to reflect on their identity and their history and the meaning of their life as they approach the end of life. So, actually, the experience of being gay in different periods of history when it was more or less acceptable socially and legally to be gay, is part of that story.
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Note on content: Interview questions have been edited for brevity.