International Seminar on Access to Treatment for HIV in Developing Countries  5-6 June 1998 London, UK

Ian Kramer
UK Coalition of People Living with HIV/AIDS
London, UK

End of life is something we must all contemplate regardless of HIV status.

In 1993 the UK Coalition became concerned about the increasing number of HIV-related suicides. Subsequent research in the UK found that existing policy and practices were not adequately addressing end of life issues for people with HIV/AIDS. Obviously these issues are not confined to PLHA in the UK.

The debate was broadened at a meeting organised in London in 1994. Impetus continued with a roundtable discussion on end of life issues at the XI International AIDS Conference in Vancouver. Further progress was made at the International Summit on Promoting Standards of Care for People with HIV/AIDS about End of Life Issues, held in Madrid in June 1997.

The summit aimed to:

• Bring together PLHA, activists, service providers and academics to discuss end of life issues faced by people with HIV/AIDS and their carers.
• Develop tools to promote further dialogue and debate.
• Identify common ground and mutual goals and actions required.
• Advocate for changes in policy and legislation for improved quality of care.

• The notion that decisions regarding the dying process are as important as decisions concerning living - dying is an integral part of living.
• The development and dissemination of information concerning end of life options for those infected and affected by HIV and AIDS.
• Early consideration regarding end of life care and treatment decisions.
• The psycho-social well-being of the dying person.
• Improved management of symptoms, both physical and mental, associated with HIV and dying.
• The right to make deeply personal decisions concerning our bodies, including decisions regarding the manner and timing of death.
• The involvement of PLHA in the discussion and debate concerning end of life decisions.
• Legislative reform and policy development to protect the rights of persons with HIV and AIDS.

1. Information and education

• Identify and share research findings based on the experiences of different countries.
• Define and identify existing services and gaps.
• Identify legal constraints.
• Disseminate information.

• Promote standards of care.
• Promote palliative care.
• Identify issues between institutional and home based care.
• Campaign for access to care.
• Campaign for resources.

• Concretising wishes - living wills, advanced directives, durable powers of attorney.
• Campaign for legislative change.

• Debate moral, ethical and legal issues concerning assisted death.
• Bring in pro and anti choice advocates.
• Explore guidelines.
• Design safeguards.
• Campaign for legislative change.

The western delegates expressed very different motivations for attending the workshop. They wanted to make choices and to learn what those choices are. They talked of their fear of losing control during end of life illness and thoughts of suicide. They expressed a tiredness of fighting the virus and a real fear of dependency, loss of dignity and over-medicalisation.

Let us look at some of the fundamental areas of end of life issues for people with HIV.

Choices: `Where to die' is a question that cannot be answered. People think talking about death is bad luck and that living well is important to ensure a good death. What is a good death? Whose perception of whose reality? In most countries choice is not available and there is a taboo on discussing death.

Spiritual Issue: `Dying with the eyes closed' is a very expressive Thai saying, meaning `a peaceful death'. The Thais expressed a stoicism towards life's problems. `We are born crying, not laughing'. Life is a struggle. There is an importance of ritual and ceremony. Concern about material issues make death harder to accept, so we must look for love and avoid and reduce jealousy and anger.

Children and Families: Who makes decisions for the children? What support is there for children and family survivors? What is the role and responsibility of the extended family group?

Assisted Suicide: This area created a lively discussion. There was a lot of interest in this, particularly from Dutch delegates, but many other delegates had a great deal of cultural opposition to the concept. The view from many delegates was that suicide was simply foolish.

Care of the Dying: Access to pain relief - there is a lot of confusion about administering strong narcotic painkillers, such as morphine and its derivatives. Issues about drug addiction become entangled with the relief of pain and suffering. Doctors are often inadequately trained, nervous and reluctant to treat PLHA, for a number of reasons. Doctors are often overly authoritarian.

Four key problem areas identified are:

• Poverty: Impacts on all areas of end of life.
• Privacy: The right to privacy and confidentiality.
• Refusal to treat PLHA: Lack of training and understanding about HIV means irrational fears are not addressed.
• Funerals: There is a need for respect of proper rites and rituals of different cultures.

• Discussion about end of life issues with PLHA. This regular dialogue is essential for understanding to develop.
• The development of improved systems for collating accurate information and its dissemination.
• The training and certification of doctors.
• The development of spiritual resources which are culturally sensitive.

Discussion (of previous two presentations together):
Spiritual support is important and often underestimated. Priests may have little understanding of issues around HIV/AIDS and training is needed for spiritual supporters. It was pointed out that in Thailand the Buddhist faith believes in reincarnation thus making death easier for people to accept.

In a WHO study in Zambia, people were tested and counselled and later followed-up with several interviews. The study found that people who tested HIV positive valued talking to counsellors about death and dying. Although initially some counsellors found this difficult, after a while they were able to perform the counselling. People had firm views about where they would like to die which, especially for women, was often at their mother's home.  Also people valued the chance to make plans for their children and property and acknowledging that they were likely to die made this possible. Their greatest fear was dying in pain, which underlies the importance of hospice work.

Dr Merriman from Uganda said that AIDS was now at the same stage as cancer was in 1986. But although we know how to control pain, it is not happening. ARVs are far too expensive at the moment and together with the drawbacks already discussed, these drugs will not be available for many generations to come. For now, people should be provided with spiritual support and counselling, pain control as required, and allowed to die in peace. She pointed out that access to pain relief is becoming a human right.

Ian Kramer said that "end of life issues" are important to improve the quality of life starting from the moment of diagnosis of a terminal illness, rather than left until a late stage of a disease. Attention should be given to will-making, planning for a death without pain, hospice facilities etc. in order that people can improve the time remaining to them, whether it is 10 years, two years or six months.

He said we should consider "living well with HIV" and should break down taboos about end of life. He agreed that counsellors often have difficulty talking about death and he personally had found that it is easier talking with others who also have a diagnosis of terminal illness, instinctively one realises that death is not the worst thing that could happen. He stressed the importance of peer-to-peer support.

It was asked whether Uganda Hospice has lobbied the government to reduce the cost of palliative drugs? Dr Merriman said that when she arrived in Uganda in 1993 there was no oral morphine so the Hospice persuaded the Minister of Health to permit its use and supplies were subsequently imported from Hungary with the help of the National Drug Authority. It was sold to patients at the low cost price of $1 per mg, and it was made up in solution at the hospice. Now the Joint Medical Store, a Christian store, is storing oral morphine and the price is still low.

However she is concerned that once the pharmacists in business get involved in the production of oral morphine, the prices will increase greatly. She said that they did discuss drug pricing with the Ministry of Health but at present the cost of palliative drugs is low in Uganda.

A recent PhD anthropological study in Thailand followed up 60 patients with HIV. The study had shown that many Buddhist temples assist PLHA when families cannot cope, which differs from the situation in Africa. It was also found that caregivers, mainly nurses, are terrified of using morphine because of the fear of addiction. For example at Bangkok airport there are signs "Heroin is death to drug traffickers." The narcotics control agency has strict regulations. If midwives are permitted to use morphine, why not extend this to enable nurses to use it for HIV/AIDS and cancer?

Ian Kramer said that hysterical attitudes towards narcotics are evident in the West which has brought considerable pressure on producer countries for their own domestic political goals. He felt that a political agenda should be pursued at the international level to show that anti-drug policies, which are all well and good in themselves, are having a negative effect on the care of patients and preventing good medicine from reaching patients for no good reason.