End-of-life issues

The information here applies to England and Wales. Different laws often apply in Scotland and Northern Ireland.

This chapter provides basic information on:

• Power of attorney – delegating decisions in cases of mental incapacity

• Planning medical care – advance decisions

• Assisted suicide/assisted dying

• Financial and legal planning

• Formalities and procedures after a death

A diagnosis of HIV infection may lead an individual, their partner and their families to consider the possibility of an early death. In addition to the emotional reactions, practical issues may suddenly loom. What will happen and how will everyone cope?

It is worth remembering that the clinical outlook has improved hugely in recent years, thanks to advances in treatment. Mortality rates within the first five years of an HIV diagnosis are approaching those of the general population.¹

However, the course of HIV remains unpredictable and even a person in good health may find some peace of mind by making contingency plans and arranging their affairs. It is also desirable to make important decisions, for example about medical care, at an early stage before the person becomes acutely unwell.²

At the other end of the spectrum, treatment failure, diagnosis at an advanced stage, progression to AIDS, HIV-related dementia or the development of other complications may add urgency to a person’s need to address these issues. 

Points to consider might include:

• What kind of medical care does the person want?  What should happen if they become too ill to speak for themselves?

• Who will make medical, financial and legal decisions if the person loses mental capacity or consciousness?

• What financial and legal provision must be made for a surviving partner, dependants and family members?

• What are the person’s wishes for a funeral and treatment of their body?

• What practical issues will the bereaved face after the death? To what extent can difficulties be eased with some fact-finding and advance planning?

Most of the person’s concerns and the advice to offer will not be different for HIV and AIDS than for other medical conditions.

It’s important to get specialist advice before taking important medical, financial and legal decisions. Each section includes suggestions for referral and at the end of the chapter, sources of additional information are listed.