Your Guide To...BHIVA Standards of Care for People Living with HIV


7. HIV across the life course

This section looks at the impact of HIV at different times in someone’s life. Separate Standards exist for children living with HIV. These are produced by the Children’s HIV Association (CHIVA) and are not included here.

Standard 7 - HIV across the life course


7d. Palliative care

Palliative care helps to relieve distress to the patient and their family and friends. It ensures that the patient and their family are supported and do not experience unnecessary suffering. Access to palliative care is a human right. Palliative care deals with you as a whole person and respects every aspect of your life and health. It includes symptom and pain management. It also should include emotional and spiritual support, together with practical and social support.

Your healthcare team should draw up a care plan with and for you that reflects your wishes. This should be person-centred, and culturally and socially sensitive. You can change things at any time, and your wishes should be reviewed often. This plan should include unexpected or emergency events. You might also want to name somebody to take decisions on your behalf in case there comes a time when you are no longer able to do so yourself.

Thinking about the end of life may not be easy, but it can help you and your family. You should be given the information you need to help make suitable decisions about how you and your family would like to care for each other at the end of life. This should be at a time that suits you, and not cause unnecessary distress.

You will need to let your clinical team know about any confidentiality issues that need to be respected. This may include issues around telling people about your HIV status. Your team is obliged to keep this confidential if you wish it. The exception to this is that HIV may need to be disclosed on your death certificate, but only if your death is related to your HIV.


Key messages

  • A care plan should be made to reflect your wishes. You will be asked if you’ve changed your mind about any aspects of your care. Plans should include unexpected or emergency events too.

  • Your healthcare team will help you manage symptoms like pain, and also take into account your psychological, emotional and spiritual wishes.

  • Making decisions about your end-of-life care is an ongoing process based on your specific needs and preferences. You should be given the information you need to make suitable decisions about how you and your family would like to care for each other at the end of life.

  • Your team is obliged to respect issues around confidentiality. If your death is related to your HIV, this must be disclosed on your death certificate.