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7.5 HIV and choosing to die Paul van Reyk People with H/V have been encouraged to take con trol of their health and the monitoring and treatment of their illnesses. Many claim the right to choose the time and manner of death. A s people with a terminal illness beco me mo re ill, they inevitabl y thin k about their death. For some, fear, uncertainty and the painful emotions attached to death may lead to denial that th ey are d ying. That is their right and we should respect that. Others will want to talk about the choices they have for some degree of control over th eir dying. It is important for hea lth ca re workers to create an enviro nment in which death can be discusse d, not to suggest tha t th e sub ject is taboo. A person has four broad choices: Co n tin uing w l'th all assailable treatmen t: T here is little de bate that , withi n th e bound s of available resources, ever yone has the right to be treated with ever y available ap propriate th erapy until they di e. Ceas ing active treatment w it h or without palliative care: Few peopl e now would o ppose a patient's desire to ce ase treatment. The law generally views medical tr eatment as an interference with th e patient's body. A ment ally co mpete nt person, as long as th ey are over a cert ain age (whic h varies from State to State in Aus tralia), must give informed consent before treatrnent . A person who treats som eone without co nse nt ma y be liable for assault. Victo ria, South Australia, th e Australian C apital Terr itory and th e Northern Territ ory already have " natural death" legislation. In Ne w South Wales, Dying with digni ty: guidelines for management sets out the conditions un der which a health practitio ner can agree to a pat ient 's req uest to stop or withhold "futile treatments". ' Ce asing treatment is usua lly accompanied by palliative care (see chapter 5.19, HIV and palliative care). For some patien ts, the best palliation available will still not provide adeq uat e pain relief. A time may also come when someone who has been receiving specialist pa lliative care decides to forgo it and to withdraw to th e privacy of ca re by fam ily or friends. Suicide { "s elf-delivery"}: Self-delive ry is a term peopl e with HI V use to m ean taking one 's own life without assistance. In Australia it is not a crime to att empt or to co mm it suicide. E u th a n asia and assisted suicide: In assisted suicide, a doctor provides the means and inform ation needed to allow a patient to com mit suicide; in euthanasia a do cto r or som e other person acts dir ect ly to end anothe r 's life. Eut hanasia is genera lly understood and is here intended to mean voluntary e uth anasia, in whic h the suffering perso n specifically requests death. Euth anasia and assisted suicide is outs ide th e law in Au stra lia, except in the N or th ern Territory, which in May 1995 P O Box 21, Petersham, NSW. Pau l van Reylt, Soci al worker; formerly Policy Officer with the AIDS C ou ncil of N ew So uth Wales. 146 passed specific legislatio n providi ng for euthanasia in lim ited circumstances. The AIDS Co un cil of NSW estimates that th ere are two attempts at eutha na sia per month by people with HI V/AIDS in Sydney alone, of which about half are uns uccessful, most often becaus e of a lack of good inform ation on th e appropr iate mea ns or th e absence of m edical supervision. For doctors who are com fort able with discussing euth anasia and assisted suicide with th eir patient s, th e law offers little guidance. Inciting or counselling someone to suicide is a crime, but the law is not specific about what constitutes inciting or counselling. Wh en discussing a patient's wish to die, it is prudent to make it d ear that the law does not allow you to encourage th is cho ice. You can provide gene ral and m edical information relevant to the pat ient 's decision . You can also refer your patient to oth er sources of information or ad visers . Not everyone who wants to ta lk about euthana sia wants to undertak e the act. D iscussing euth anasia m ay be a way of raising other important issues, such as feelings about quality of life and th e meaning ofl ife and death , conce rns abo ut beco ming a burde n to care rs, doubts about whether carers ar e coping with their illness, dissatisfaction with th e care th ey are receiving , or guilt feelings to do with th eir illness. Fo r many, knowing th at euthanasia is available if want ed is good enough . A practitioner will want to be satisfied that th e request is not being ma de while th e patient is depressed. C linical dep ression m ust be diagnosed and treated if possible (see chapter 5.6, HIV and psychiatric disease). Any doubts here should be settled through referral to someo ne skilled in assessing and trea ting depressio n. The more difficult question is wh eth er you are prepa red to provide th e physical assistance needed . Other th an the legal asp ect , your decision will depend on how you see th e role of th e docto r and th e mo ra l and ethical que stions raised by euth anasia. Some doctors do assist the ir pat ients to die. Surveys suggest that most peop le in the community and most doctors agree with euth anasia at the req uest of a person who is dying slowly and painfully>' In th e Netherlands, where th e law allows euth anasia, a recent study found that 22% of a cohort of people with AIDS died by euthanasia or assisted suicide, but th e doctors involved estim ated th at th is usua lly shorte ned survival by less tha n a month ." References 1 Dying wil h dIgnity: inlenm guidelines on management. Sydney NSWDepartment 01 Health. 1993 2 1994 National sccei Science Survey Canbeaa Auslralian NallOflal University, 1994 3. Kuhse H. Singel P Doctors' p,octlteS and attitudes regard,ng voluntary euthanasia Med J Ausr 1988 : 148, 623-627. 4 Baune PO 'MaIIey E EuthanaSia: attrtudesand practices of medical practittOOers Med JAusr 1994: 161: 137·14 4 5. Blndels PJE. Krol A. van Ameljdeo E, et al. EuthanaSIa and physician·assisted socoe in homosexual men WIth AIDS Lancer 1996: 347 499 -504 Q MJA Vol165 5 August 1996