The hardest thing we have ever done - Palliative Care Australia

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• Julie Murphy (health professional) • Julie’s story • Kay Kennedy • Lee Furlong • Linda Hine • Michael’s story • Ron’s story • Roy’s story • Ted’s story • Volunteer at Sacred Heart Hospice • Volunteer at Very Special Kids House • Volunteer from Caritas Christi Hospice • Volunteer in Cittamani Home Hospice Palmwoods • Volunteer, Bert Voskulen • Volunteer’s view on palliative care • Wendy Dunston Newsletters and other printed material • Australian Doctor • Australian Health Consumer • Brain Tumour Australia • Carers NSW • FACS • Family Caregiver Alliance • Ipswich Hospice Care • Media releases on Commonwealth Funding • Motor Neurone Disease Association of NSW • NT Carers Association (in Regional Health Check) • Published articles • Thesis 70 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
Glossary of Terms CALD CALD stands for Culturally and Linguistically Diverse and is used to describe Australians from such backgrounds. Caregiver/carer/caring Carers are people who regularly provide the most assistance with one or more of the core activities of communication, mobility, transport, housework and self-care. Also a carer is defined as someone who, without payment, provides help and support to a friend, neighbour or relative who could not manage otherwise because of frailty, illness or disability. Carer Allowance The Carer Allowance (Adult) helps parents or carers to care for adults with a disability at home. It replaces the former Domiciliary Nursing Care Benefit. Carer Allowance (Adult) may be paid on top of the Carer Payment or other payments, such as the Age Pension. Carer Payment The Carer Payment is available to those who provide constant care, in the home of the person under care, to a person aged 16 or over with a severe disability or medical condition, or an adult with moderate care needs and supervision of their dependent child if this child is: under six years of age, or between six and 16 years of age and attracts payment of Carer Allowance, or a child under the age of 16 with a profound disability or medical condition, or two or more children under the age of 16 with severe disabilities or medical conditions, and the applicant meets the income and assets tests, is an Australian resident or allowed to live here permanently (a two year waiting period may apply for recently arrived migrants). Community palliative care Community care settings include the patient’s private home or a community living environment such as a residential aged care facility or supported care facility. Community palliative care services provide care, as much as possible, in the setting of the patient’s choice. End of life End of life refers to that period of life leading up to death, and death itself. Inpatient palliative care Inpatient settings include hospices and hospitals. Some hospitals maintain a distinct palliative care unit, while others designate beds which are reserved for palliative care patients. Neurodegenerative conditions Neurodegenerative conditions are fatal diseases in which the nerve cells that control the muscles that enable us to move, speak, swallow and breathe degenerate and die. As the nerves die the muscles that they supply die. This results in increasing creeping paralysis. Palliative care Palliative care is the specialised health care of dying people which aims to maximise quality of life and assist families, carers and their communities during and after death. THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004 71
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The Social Impact of Caring for Ter
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Acknowledgments Palliative Care Aus
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Table of Contents Acknowledgments 2
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Conclusions based on public submiss
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Executive Summary Palliative Care A
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Literature Review Background Relati
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Carers in Palliative Care Palliativ
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In the USA, according to the Nation
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A common feature of caring for indi
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Table 4: Effects of caring on the p
Page 22 and 23: Impact on Economic Wellbeing It app
Page 24 and 25: Coping with Caregiving Caregivers o
Page 26 and 27: escort may not be considered medica
Page 28 and 29: Carers of children and children as
Page 30 and 31: Needs and Barriers Information and
Page 32 and 33: to conspiracies of silence where bo
Page 34 and 35: • providing information and refer
Page 36 and 37: implicated by the lack of positive
Page 38 and 39: for a terminally ill family member.
Page 40 and 41: • specialised strategies which ad
Page 42 and 43: The Impact of Caring Through the Vo
Page 44 and 45: Carer for husband with Multiple Mye
Page 46 and 47: The financial impact of caring Care
Page 48 and 49: The need for support services Carer
Page 50 and 51: Carer for brother with bowel cancer
Page 52 and 53: Seeking community recognition: sugg
Page 54 and 55: The Needs of Carers through the Voi
Page 56 and 57: • accurate information about the
Page 58 and 59: Recognition Service providers sugge
Page 60 and 61: • for the terminally ill person w
Page 62 and 63: People from culturally and linguist
Page 64 and 65: It is worth noting that the Austral
Page 66 and 67: Dawson, S., & Kristjanson, L. (2003
Page 68 and 69: McGrath, P. (2001b). Returning Home
Page 70 and 71: Schulz, R. & Beach, S. (1999). Care
Page 74: Palliative care services Palliative
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