Huntington's disease is a genetic, neurological disorder characterized by mid-life onset, involuntary movements, cognitive decline, behavioral disturbance, and inexorable progression. The impact of Huntington's disease is devastating for individuals and their families as it is a disease with a long trajectory; many young people are aware that they may develop the illness for years before there are obvious symptoms. There is therefore ample opportunity to plan and choreograph the care and supportive services for people with Huntington's disease and their families. The present study was conducted to explore the needs for palliative (supportive) care service provision of people with Huntington's disease and their families/informal carers. Six people with the disease, 19 informal carers and seven health care workers with specialized knowledge took part in individual, semistructured interviews, which were analyzed thematically. Themes were: (i). adjusting to the impact of the illness; (ii). surviving the search for essential information; (iii). gathering practical support from many sources; (iv). bolstering the spirit; (v). choreographing individual care and; (vi). fearing the future. Our findings demonstrate that palliative care services for people with Huntington's disease and their informal carers need to provide expert psychological and practical support and perhaps most importantly, be flexible, adequately planned and choreographed.

Progress in medical technology and treatment has resulted in more people with neurodegenerative conditions surviving for longer periods of time. This increased lifespan means that these individuals have a longer period of dependency on others, with a heightened need to maintain quality of life for both the individual and the family. Our paper reports on the findings of a study involving in-depth interviews with 16 carers to determine their perceived needs during the final stage of caring for someone with muscular dystrophy (MD) or motor neurone disease. Results suggest that the palliative care model has much to offer individuals with degenerative neuromuscular conditions and their families, but it is not yet recognized as an important part of care for young people with MD. Three major themes emerged in the analysis: reactions and responses, health system crossing points, reaching forward.

■ A palliative care approach has much to offer people in the advanced stages of neurodegenerative diseases, as well as elderly people dying from diseases other than cancer.■ Palliative care can be part of the treatment repertoire of any health worker, supported by intermittent consultation or referral to specialist palliative care services (eg, for management of neuropathic pain).■ A palliative care approach encourages a focus on pain and symptom management, and prompts more open communication about end-of-life issues.■ This approach recruits as necessary the expertise of specialists and multidisciplinary teams to encourage a flexible, responsive service.■ Home carers and healthcare providers require education to ensure a palliative approach that meets the physical, psychological, spiritual and social challenges facing patients MJA 2003; 179: S41-S43and their families, and enhances dignity and quality of life.

This paper describes the use of the Delphi survey method to identify the roles and training needs of occupational therapists working in the field of hospice and palliative care in Australia. The study was conducted in 1993 using a purposive sample of 47 occupational therapists. The survey consisted of three consecutive questionnaires and five in‐depth interviews. The results indicated that there is a role for occupational therapy in this new and expanding field, and that occupational therapists need to promote a higher profile for their profession and their skills through research, education and presentations to maximize this role. The study also highlighted the importance of continuing education for occupational therapists working in this field.

The hospice philosophy plays an important role in the delivery of health services that focus on the biopsychological needs of people with a terminal illness and their environment. Occupational therapy in hospice can provide an environment which will enable people to discover and respond to their own inner needs. The occupational therapy setting creates an environment which provides people with the opportunity to carry out activities which they are interested in, to socialize with others, and to experience the philosophy of hospice. The purpose of this study was to examine the role of groups with occupational therapy in hospice. A literature search, participant observation, interviews and discussion indicate that music, massage, and beauty treatment are important aspects of care for the dying person.