Table of Contents Acknowledgements, Preface, Table of Contents, Background, Introduction I - The Understanding of Health and Illness Underlying the Model II - Hospice Palliative Care: Definition, Values, Principles and Foundational Concepts III - The Model to Guide Patient and Family Care IV - The Model to Guide Organization Development and Function V - Application of the Model Appendices Square of Care Square of Organization Square of Care and Organization Full Reference List

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Since the discovery of penicillin in the 1940s, the experience of illness has been changing. Modern medicine has been very successful fighting disease, other conditions, and aging. In the 21st century, people are living with illness for much longer than ever before. Today, they must deal with many complex issues: How can they get relief from their symptoms? How can they carry on with life as they have known it? How will the illness affect their roles and relationships? What can be done to change the illness experience? How can they restore or maintain their capacity for meaningful and valuable experiences that give quality to their lives? Each of these issues creates expectations, needs, hopes and fears, which must be addressed in order for the ill person to adapt, continue living, and find opportunities for growth. For many years, the approach used in hospice palliative care has helped patients and their families address these issues while they were dying. Now, all the skills and strengths developed in hospice palliative care can be applied throughout the experience of illness and bereavement to help patients and families improve the quality of their lives, increase their ability to participate in therapy to fight their disease and, potentially, prolong their lives. The practice of hospice palliative care is relatively young. In Canada, it began in the 1970s and has evolved rapidly. The term “hospice palliative care” was coined to recognize the convergence of hospice and palliative care into one movement that has the same principles and norms of practice. In a consensus–building process led by the Standards Committee of the Canadian Hospice Palliative Care Association, providers, organizations and consumers joined to share their experiences and develop a clear vision for hospice palliative care that everyone could use. The resulting model represents more than 10 years of collaboration by individuals, committees, associations and governments across Canada and is

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Table of Contents Background What is A Model to Guide Hospice Palliative Care? How to Use the Model About this Toolkit 1. Getting Started The Model Conceptual Frameworks Square of Care Square of Organization Square of Care and Organization Program or Service Audit Process Models to Assist with Application of the CHPCA Model 2. Using the Model to Guide Policy 2.1 Developing Policy 3. Using the Model to Guide Planning 3.1 Planning a legacy project 3.2 Developing a service delivery model for rural and remote areas 3.4 Planning a Rural Residential Hospice 4. Using the Model to Strengthen Clinical Programs and Services 4.1 Developing and Evaluating a Clinical Tool 4.2 Developing Clinical Guidelines 4.3 Developing Referral Criteria 4.4 Assessing Quality/Checking Current Practices Against the Norms 4.5 Building Partnerships 4.6 Evaluating/Accrediting a Hospice Palliative Care Program 5. Using the Model to Guide Education 5.1 Assessing Competencies and Developing Learning Plans 5.2 Developing Orientation and Education Programs and Identifying Education Priorities 5.3 Developing Best Practices for Volunteer Services 5.4 Developing Education Activities for Courses, Workshops and in-service Training 5.5 Planning a Conference 6. Using the Model to Manage a Hospice Palliative Care Program, Service or Organization 7. Summary

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Table of Contents Introduction History of hospice palliative care nursing in Canada Vision Mission Purpose Philosophical beliefs Framework for hospice palliative nursing Canadian standards of hospice palliative care nursing Standard I – Valuing Standard II – Connecting Making the connection Sustaining the connection Closing the connection Standard III – Empowering Standard IV – Doing for Pain and symptom management Coordination of care Advocacy Standard V – Finding meaning Standard VI – Preserving integrity Self Person and family Glossary References Bibliography

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Table of Contents Background What is pediatric hospice palliative care? How does hospice palliative care for children differ from hospice palliative care for adults? What is the role of pediatric hospice palliative care during illness? Guiding Principles of Pediatric Hospice Palliative Care The Square of Care: a Conceptual Framework I. Child and Family Care 1. Illness/Disease Management 2. Physical Care (including pain and symptom management) 3. Psychosocial Care 4. Social Care 5. Spiritual Care 6. Developmental Care 7. Practical Care 8. End of Life/Preparation for Death Care 9. Loss, Grief, Bereavement Care II. The Process of Providing Care 10. Assessment 11. Information-sharing 12. Decision-making 13. Therapeutic Interventions 14. Care Delivery 15. Evaluation of Care III. Program Support Functions 16. Governance and Administration 17. Planning 18. Marketing and Advocacy 19. Quality Management 20. Research 21. Education 22. Caregiver Support/Worklife IV. Resources 23. Human, Physical, Technology, Clinical Resources 24. Financial Resources Appendix A Glossary of Commonly Used Terms Appendix B Informed Consent Appendix C Cultural Care Appendix D Techniques for Negotiating Issues Influenced by Culture that are Important in End of Life Care Appendix E Bereavement Risk Assessment Appendix F Quality Management Appendix G Research Priorities and Questions References

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Table of Contents Background What is pediatric hospice palliative care? How does hospice palliative care for children differ from hospice palliative care for adults? What is the role of pediatric hospice palliative care during illness? Guiding Principles of Pediatric Hospice Palliative Care The Square of Care: a Conceptual Framework I. Child and Family Care 1. Illness/Disease Management 2. Physical Care (including pain and symptom management) 3. Psychosocial Care 4. Social Care 5. Spiritual Care 6. Developmental Care 7. Practical Care 8. End of Life/Preparation for Death Care 9. Loss, Grief, Bereavement Care II. The Process of Providing Care 10. Assessment 11. Information-sharing 12. Decision-making 13. Therapeutic Interventions 14. Care Delivery 15. Evaluation of Care III. Program Support Functions 16. Governance and Administration 17. Planning 18. Marketing and Advocacy 19. Quality Management 20. Research 21. Education 22. Caregiver Support/Worklife IV. Resources 23. Human, Physical, Technology, Clinical Resources 24. Financial Resources Appendix A Glossary of Commonly Used Terms Appendix B Informed Consent Appendix C Cultural Care Appendix D Techniques for Negotiating Issues Influenced by Culture that are Important in End of Life Care Appendix E Bereavement Risk Assessment Appendix F Quality Management Appendix G Research Priorities and Questions References

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Table of Contents Background What is pediatric hospice palliative care? How does hospice palliative care for children differ from hospice palliative care for adults? What is the role of pediatric hospice palliative care during illness? Guiding Principles of Pediatric Hospice Palliative Care The Square of Care: a Conceptual Framework I. Child and Family Care 1. Illness/Disease Management 2. Physical Care (including pain and symptom management) 3. Psychosocial Care 4. Social Care 5. Spiritual Care 6. Developmental Care 7. Practical Care 8. End of Life/Preparation for Death Care 9. Loss, Grief, Bereavement Care II. The Process of Providing Care 10. Assessment 11. Information-sharing 12. Decision-making 13. Therapeutic Interventions 14. Care Delivery 15. Evaluation of Care III. Program Support Functions 16. Governance and Administration 17. Planning 18. Marketing and Advocacy 19. Quality Management 20. Research 21. Education 22. Caregiver Support/Worklife IV. Resources 23. Human, Physical, Technology, Clinical Resources 24. Financial Resources Appendix A Glossary of Commonly Used Terms Appendix B Informed Consent Appendix C Cultural Care Appendix D Techniques for Negotiating Issues Influenced by Culture that are Important in End of Life Care Appendix E Bereavement Risk Assessment Appendix F Quality Management Appendix G Research Priorities and Questions References

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The Need Most Canadians with life-threatening illnesses would prefer to die at home surrounded by family and friends, yet about 75% of deaths in Canada still occur in hospital or long-term facilities.i The gap between Canadians’ preference and current practice in the health care system is due to a number of factors, including lack of awareness of hospice palliative care servicesii available to people in their homes and the wide variation in the type of hospice palliative care services provided by home care organizations in different jurisdictions. The Commitment In 2004, in the 10-Year Plan to Strengthen Health Care, governments recognized the need for hospice palliative care services in the home. In that plan, the federal, provincial and territorial First Ministers made a commitment to “provide first dollar coverage by 2006 for certain home care services … including case management, nursing, palliative-specific pharmaceuticals and personal care at the end of life.” Why a Gold Standard? To support provincial and territorial government efforts to fulfill their commitment, the Canadian Hospice Palliative Care Association in partnership with the Canadian Home Care Association has defined the “gold standard” for each of the four home care services to be funded by government: case management, nursing, palliative-specific pharmaceuticals and personal care at the end of life. Our goal is to ensure all Canadians have equitable access to high quality end-of-life care at home. To develop the gold standards, the two associations consulted with experts in hospice palliative care, experts in home care, and a wide range of professionals who would be part of hospice palliative care teams, including physicians, nurses, pharmacists, personal care workers, social workers, case managers and home care administrators. Draft standards were reviewed by individuals across Canada with appropriate knowledge and expertise, and revised based on their feedback. The gold standards provi

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Criteria have been developed for each standard so that they can translate into specific measures and concrete actions. Using these criteria, healthcare teams and institutions can assess their performance, focus on areas in need of improvement and find solutions to problems they have identified. The standards were divided into four areas of focus: 1) child- and family-centered care; 2) interdisciplinary; 3) continuous quality improvement; 4) clinical governance

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