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Subject Guide - Palliative and Hospice care

Books

The library provides access to a wide range of books and ebooks relating to aged care. Use the links below to explore ebooks relating to that particular topic or search the library catalogue.

Journals

EBM for Palliative & Hospice care

palliAGED
palliAGED is an Australian palliative care evidence and practice resource for the aged care sector. An Evidence Centre and a Practice Centre mean that aged care staff and health professionals can find the evidence easily and know how to use it in providing care. Older Australians, their families and friends are also welcome to use these trustworthy resources.

CareSearch
CareSearch provides evidence based information for the public and for health professionals in an Australian context. 
CareSearch is funded by the Australian government as part of the National Palliative Care Program. 

Support websites for patients and carers

Australia

palliAGED
palliAGED for the community provides information on palliative care and end of life care and on services and resources that can help the person and their families.

Palliative care Australiahttps://palliativecare.org.au/im-a-patient ; https://palliativecare.org.au/im-a-carer
Provides patients and carers with links to resources and services in Australia, both during and after.

Paediatric Palliative care  Childrens Hospice services - for Australian carers
Information in English, Arabic, Vietnamese, Traditional Chinese, simplified Chinese. Children’s hospice services aim to meet the physical, emotional, social and spiritual needs of babies, children, young people and their families. Care is provided by a multi-disciplinary team of specialist staff, working together to ensure seamless support to the entire family which includes siblings and grandparents.

Palliative care services in Australia - Australian Institute of Health and Welfare
Provides an overview of palliative care services in Australia in a web report format.

Advance Care Planning : Advance Care Planning Australia - Advance care planning promotes care that is consistent with a person's goals, values, beliefs and preferences. It prepares the person and others to plan for future health care, for a time when the person may no longer be able to communicate those decisions themselves. Advance Care Planning Australia is a national program that provides information and resources to individuals, care  workers  and healthcare professionals to improve this cooperation. 


Worldwide

Supportive Care Matters - https://www.supportivecarematters.org
Supportive Care Matters is a nonprofit initiative that promotes supportive care as a supplement to medical care. The concept of supportive care encompasses pain management, emotional and spiritual support, self-care, and community support. The info section addresses topics such as coping with symptoms, maintaining your lifestyle, defining your values and having important conversations. The resources section includes a tool that helps the patient to define their priorities for maintaining quality of life. A blog also provides tips for those living with a chronic illness.

MedlinePlus: Palliative Care - https://medlineplus.gov/palliativecare.html
Like most MedlinePlus pages, this page offers basic information as well as links to a variety of other resources. As well as resources related to specific issues like pain and shortness of breath, there are also links for videos, handouts and articles relating to palliative care issues.

MedlinePlus: Hospice Care - https://medlineplus.gov/hospicecare.html
General information about end of life care as well as links to related issues such as nutrition and hydration, choosing a hospice program and information about Medicare hospice benefits.

GetPalliativeCare.org - https://getpalliativecare.org/
Provided by the Center to Advance Palliative Care, this Web site offers a variety of information for patients and families. The basic principles of palliative care are explained and a brief questionnaire is provided to help consumers determine if palliative care is right for them. Information for pediatric palliative care is also available. Additional resources include talking points for physician visits, links to other useful websites, webinars, and a blog.

Palliative Care: Conversations Matter - https://www-ninr-nih-gov.salus.idm.oclc.org/newsandinformation/conversationsmatter/conversationsmatter-patients
The National Institute for Nursing Research, a division of the National Institutes of Health, has developed the Palliative Care: Conversations Matter campaign to increase awareness of pediatric palliative care. They offer a variety of brochures and videos for parents and families of pediatric patients including some in Spanish.

Family Caregiver Alliance - https://www.caregiver.org/
The Family Caregiver Alliance is a community-based, nonprofit organization that focuses on the needs of those providing care to loved ones in the home. The Web site provides basic information about several health conditions as well as a variety of topics relating to caregiving. They have fact sheets, webinars and videos as well as a monthly newsletter and an online caregiver support group.

Caregiver Action Network (CAN) - http://caregiveraction.org/
The Caregiver Action Network is another resource that provides information and advocacy for caregivers. They provide access to a variety of forums for caregivers to discuss specific issues. The Toolbox resource offers tips and other resources, including videos and checklists, to help with planning and coping. The iCAN Tech section spotlights technologies and applications that can assist with communication and tracking things such as medicines and appointments.

American Chronic Pain Association - http://theacpa.org/
All aspects of pain management are addressed. Sections include information on specific conditions, a pain management toolkit, self-management skills, pain awareness toolkits and a communication guide.

Institute for Chronic Pain - https://www.instituteforchronicpain.org/
The Institute for Chronic Pain is a public policy group whose goal is to change the way chronic pain is viewed and treated. They offer a variety of articles relating to pain in specific health conditions as well as discussions about self-managing pain and different types of pain medication.

National Center for Complementary and Integrative Health (NCCIH) - https://nccih-nih-gov.salus.idm.oclc.org/
The National Center for Complementary and Integrative Health is a division of the National Institutes of Health and is responsible for scientific research and education relating to complementary and integrative therapies. Although much of the Web site is focused on clinical research, the Health Information section provides information for consumers and health professionals on health conditions, therapies and herbs. Some information is also provided in Spanish.

Nutrition.govhttps://www.nutrition.gov/nutrition-and-health-issues
Sponsored by the United States Department of Agriculture, the Nutrition.gov Web site offers a wealth of information about healthy eating. A special subject area includes information about nutrition and a variety of health conditions.

Food and Nutrition Information Center - https://www.nal.usda.gov/fnic
The United States Department of Agriculture National Agriculture Library sponsors this nutrition information resource. Sections include information on lifecycle nutrition, dietary guidelines, food composition, food safety, dietary supplements, and food labeling.

Understanding Healthcare Decisions at the End of Life - https://www-nia-nih-gov.salus.idm.oclc.org/health/understanding-healthcare-decisions-end-life
The National Institute on Aging has compiled this Web page to help both patients and caregivers begin to think about some of the decisions that will be faced at the end of life. It includes a discussion of issues that may arise as well as questions to consider and discuss.

Good End of Life - http://www.goodendoflife.com/
In 2013 Judy McDonald Johnston gave a Ted Talk about good end of life planning. Her Web site includes a video of this talk as well as several brief and simple worksheets that help users to clarify their wishes. Worksheets address “The Plan,” “Advocates,” “Hospital Readiness,” “Caregiving,” and “Last Words.” A one-page medical summary sheet is also available.

The Conversation Project - https://theconversationproject.org/
The Conversation Project is an initiative that aims to begin the discussion about end of life planning before a healthcare crisis occurs. A general conversation starter kit is available for download as well as special starter kits for pediatric patients or those with Alzheimer’s disease or dementia. Additional starter kits on choosing or becoming a health care proxy and how to talk to your doctor are also available. Starter kits are available in multiple languages.

What matters now - http://www.whatmattersnow.org/ and Hospice journey - http://www.hospicejourney.org/
Offered by the nonprofit Samvara Project, both What matters now and Hospice journey offer free websites to patients and families coping with serious illness, injury, and terminal illness. Each Web site includes sections for patients or families to share reflections, photos and updates. A guest book is included so that visitors can leave messages. The “Lend a Hand” section suggests ways that others can help or contribute to the care and well-being of the patient.

Societies, associations, organisations and guidelines