People living with HIV should have access to high-quality palliative and end of life care. You can create an inclusive environment by learning about HIV from a medical and a social perspective. This will help you better understand worries that people living with HIV may have about accessing stigma-free care and find ways to make people feel safe and respected.
Key points
- Undetectable = Untransmittable (U=U). People living with HIV who are on treatment and have a fully suppressed viral load cannot pass on the virus to their sexual partners.
- In the UK, people are living longer with HIV because of improved access to effective treatment.
- Everyone will feel differently about talking about their HIV status. It’s best to be guided by the person – if they have not mentioned it, try to only ask about their HIV status if it’s related to their care.
- Treat everyone as an individual – avoid making assumptions because of their HIV status.
- Help people living with HIV plan for their end of life care – for example, by creating an advance care plan.
What is HIV?
Human immunodeficiency virus (HIV) weakens someone’s immune system. If it’s untreated, people living with HIV are more vulnerable to other infections or illnesses. With effective treatment, HIV becomes undetectable and cannot be passed on to other people. Most people on treatment for HIV live a long and healthy life with minimal complications – just like people living with other chronic health conditions.
HIV is defined as a disability under the Equality Act 2010. It’s discrimination and against the law to do any of the following to someone based on their HIV status:
- Refuse to care for them.
- Refuse to give them access to a service.
- Give them a worse quality of care or service than you would usually provide.
- Cause them harm.
- Behave in a way that distresses, offends or intimidates them.
HIV stigma and its impact
Stigma is when a negative label is attached to an aspect of a person that is wrongly seen as disgraceful or unacceptable. Historically, HIV has a lot of stigma towards it, usually because people lack information about it or they make judgements about how someone has got HIV.
People living with HIV may also have internalised stigma or self-stigma. This is when someone has negative thoughts or beliefs about their own HIV status.
Some people living with HIV may also have another characteristic that means they face stigma, such as being LGBTQ+ or from a minoritised ethnic group. Facing these different types of stigma could make someone worry more about being discriminated against.
People living with HIV may worry about:
- telling health and social care professionals about their HIV status
- being told they cannot access certain services
- health and social care professionals not wanting to touch them or wearing gloves when it’s not necessary
- being physically separated from other patients
- being asked inappropriate, upsetting or distressing questions (see Asking about someone’s HIV status below).
Providing emotional care and support
Emotional care and support is a vital part of palliative and end of life care for everyone. For people living with HIV, it can be especially important because of HIV stigma. As well as arranging support from counsellors, faith leaders or spiritual advisors, you could signpost people to support from organisations that specialise in HIV (see Information and support services for people living with HIV below).
Watch: How can HIV stigma affect end of life care?Watch: How can HIV stigma affect end of life care?
Richard, Abigail and Robert discuss experiences of and thoughts on stigma and its impact.
Asking about someone’s HIV status
You may know that someone is living with HIV because they’ve told you, or because their status or their HIV medication is in their health record. Or it might have been shared, with consent from the person, in another way.
There are times you may need to know or understand more about someone’s HIV status. For example, if you need to have a conversation about medication (see HIV medications and end of life medications below).
It can help to ask yourself ‘How much do I need to know about someone’s HIV status?’ If you already have the details you need in their health record and it will not impact their care, you might not need to ask.
Here are some tips for talking with someone about anything related to their HIV status:
- Speak to them in private – they may not feel comfortable talking openly about their HIV status, including around family or friends who do not know.
- Ask whether they’re comfortable having a conversation with you, or if they’d like anyone else to be there. This could be family or friends, their HIV doctor, or another healthcare professional they trust.
- Acknowledge that some of the questions may be sensitive or personal.
- Explain why you’re asking any questions. For example, “We need to review all medication you take regularly, so we can make sure it’s still working as well as possible. This includes your HIV medication.”
- Get consent to record or share any information they give you.
- Check who knows that they’re living with HIV, including their GP. Ask how much they’re happy for you to discuss with other people, if it relates to their care.
Some people may feel caught off-guard or uncomfortable answering questions right away. If it’s possible, give them time and space to process what you’re asking.
There are some questions that it’s inappropriate to ask because it adds nothing to how you would care for the person – like asking how someone got HIV or why they have not told a partner. It’s OK if you say the wrong thing by mistake. If this happens, you can acknowledge the mistake, apologise, correct yourself and move on.
HIV and other health conditions
People are living longer with HIV. Not many people in the UK develop serious HIV-related illnesses because of effective treatment.
People living with HIV are more likely to develop other health conditions, including:
- diabetes
- kidney problems (chronic kidney disease)
- heart problems
- dementia.
If someone has one or more of these conditions, they may already have specific care needs. You could ask whether:
- they have any care plans in place
- they have a named doctor managing a condition, if you are not already in touch with them.
HIV medications and end of life medications
HIV medications are called antiretroviral therapy or ART. There’s no guidance on whether someone should stop or continue taking HIV medication towards the end of life. A decision should be taken on a case-by-case basis, in discussion with someone’s HIV team or alongside specialist HIV advice.
You or another member of their healthcare team should review any medication someone is taking during the last months, weeks and days of their life. This may include HIV medication.
It’s important to assess whether:
- the medication is still helping their overall wellbeing
- the medication is making them uncomfortable
- they are able to take their usual medication – for example, if it’s a tablet, that they can still swallow it
- other ways to take their medication would be better – for example, by injection
- any medication they are taking is interacting with other medications (when taking medication at the same time has a bad effect)
- they have an advance care plan in place that says what their treatment and medication preferences are.
Stopping HIV medication towards the end of life
Towards the end of life, taking HIV medication may not add to someone’s wellbeing or comfort. If they stop taking HIV medicine, the amount of the virus in their blood (viral load) usually takes a few weeks to increase.
Stopping HIV medicine too early might cause them to become more unwell. An increased viral load makes them more likely to get infections or other illnesses. This may mean they need other medications or care to make sure they stay comfortable.
A change to the routine of taking their medication may also be upsetting or unsettling for some people living with HIV. Some people will have taken HIV medication for a long time, and be sensitive to the importance of this so HIV remains undetectable and untransmissible.
The person may have already asked for guidance from their HIV doctor. Ask whether their HIV doctor or a local HIV specialist can speak with you too, or be involved in any team conversations. The person may also want to speak with a partner, family or friends about the decision.
End of life wishes and care
Before effective treatment was available, HIV-related illnesses caused a lot of deaths in the UK. Because of this history, people living with HIV may be more reluctant to think about or plan for death. This may impact questions or worries they have about future care.
You can support the patient with making:
- an advance care plan – including their preferences for care and next of kin
- a Power of Attorney – choosing someone to make decisions if they are not able to
- a Will – making plans for any money, possessions, children or pets
- funeral plans – that respect and celebrate the person’s identity and beliefs.
Watch: Planning for the end of your life while living with HIVWatch: Planning for the end of your life while living with HIV
Abigail, Richard and Robert talk about the importance of planning for the end of life and share their wishes.
Supporting partners, family, and friends
- Ask the person living with HIV who is important to them and who cares for them.
- Involve the people important to them in discussions and updates about care or making decisions, if the person living with HIV has agreed to this.
- Ask them what support they are getting. Signpost them to support while they’re actively caring for or helping someone, as well as bereavement support.
Other people may not know someone’s HIV status
Some people choose not to tell everyone about their HIV status, even if they are close to them. They might tell you who does not know, so that you and other health and social care professionals can respect their wishes around visitors, family or friends.
If they do not speak to you about who knows, avoid mentioning or doing something to reveal their HIV status around visitors, family or friends.
If you witness HIV discrimination in palliative care
You may hear or see someone being treated unfairly or badly because they are living with HIV. This can include disrespectful or inadequate care, abuse or taking extra unnecessary precautions when providing care. It can also include inappropriate or offensive jokes, questions or comments about people’s HIV status.
The discrimination could be intentional or unintentional. It may be from staff, volunteers or other service users. And it may be directed to or about staff, volunteers or service users.
If it’s safe for you to do so, you can:
- make a note of what you heard or saw
- report what has happened to the appropriate person
- follow your organisation’s policies and procedures, including on safeguarding, complaints, discrimination or harassment
- speak to your manager, another senior colleague or a safeguarding lead if you ’re not sure what to do.
Even if the discrimination was not directed at you, you might find that it affects you personally. This might be particularly hard if you’re living with HIV, so it’s important to get support for yourself. It may help to talk about what has happened and how it’s affected you.
