Implementing and sustaining evidence-based practices in long-term care.

End-of-Life Care

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    This guideline focuses on recommendations for adults, aged 18 years and older, who have reached the part of the illness trajectory that includes the last days and hours of life. This guideline will provide evidence- based recommendations for Registered Nurses and Registered Practical Nurses on best nursing practices for end-of-life care during the last days and hours.

    Registered Nurses’ Association of Ontario (2011). End-of-life care during the last days and hours. Toronto, ON: Author. Retrieved from https://rnao.ca/sites/rnao-ca/files/End-of-Life_Care_During_the_Last_Days_and_Hours_0.pdf

     

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    This Guide summarizes the main points of The Substitute Decisions Act. It should not be used as a substitute for the legislation, and it is not a substitute for legal advice. To make the legislation easier to understand, the Guide avoids legal terminology wherever possible.

    Canadian Hospice Palliative Care Association. (2004). A Guide to Substitute Decisions Act. Retrieved from http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/pgtsda.pdf.


     

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    This model guides all activities related to hospice palliative care, and develop local standards of practice.  The model is built on an understanding of health, the illness and bereavement experiences, and the role hospice palliative care plays in relieving suffering and improving quality of life. 

    Canadian Hospice Palliative Care Association. (March 2002). A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice.  Ottawa, ON: Author.  Retrieved from https://www.chpca.ca/wp-content/uploads/2019/12/norms-of-practice-eng-web.pdf
     

    Copyright © 2002, Canadian Hospice Palliative Care Association. All Rights Reserved.

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    Abbey Pain Scale is an assessment tool for the measurement of pain in people with dementia who cannot verbalize

    Abbey, J; De Bellis, A; Piller, N; Esterman, A; Giles, L; Parker, D and Lowcay, B. Funded by the JH & JD Gunn Medical Research Foundation 1998 – 2002 (This document may be reproduced with this acknowledgment retained). Retrieved from: http://www.wales.nhs.uk/sitesplus/documents/862/FOI-286f-13.pdf

    Source: Dementia Care Australia Pty Ltd. Website: www.dementiacareaustralia.com

     

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    Learn how to participate in advance care planning process in Ontario. The Speak Up Ontario website provides in formation on Advance Care Planning as a process of thinking about and sharing your wishes for future health and personal care. It can help you tell others what would be important if you were ill and unable to communicate.

    Speak Up. (n.d.). homepage. Retrieved from https://www.speakupontario.ca/
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    This advanced planning framework is seen through a health lens recognizing and building on interaction with the legal and ethical framework across the country and professions. The new Framework builds on the 2012 National Framework with a focus partnerships, and promoting collaboration among different system levels: local, provincial/territorial and national.

    Canadian Hospice Palliative Care Association.  (2020). Advance Care Planning in Canada: A Pan-Canadian Framework. Retrieved from https://www.advancecareplanning.ca/news/2019-updated-national-framework-acp-now-released/

     

    © 2020 Advance Care Planning Canada. All rights Reserved.

    ACP in Canada is a national collaborative project led by CHPCA

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    Advance care planning is a process of reflection and communication, a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that you become incapable of consenting to or refusing treatment or other care. Speak Up helps to get this conversation started with those in our care.

    For Ontario specific information please visit the website www.speakupontario.ca

    Retrieved from: http://www.advancecareplanning.ca/health-care-professionals.aspx

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    Purpose of the BPI tool is to assess the severity of pain and the impact of pain on daily functions. The tool can be used for patients with pain from chronic diseases or conditions such as cancer, osteoarthritis and low back pain, or with pain from acute conditions such as postoperative pain.

    Assessment areas included are severity of pain, impact of pain on daily function, location of pain, pain medications and amount of pain relief in the past 24 hours or the past week.

    The BPI copyright is held by Dr Charles S. Cleeland (1991). The copyright applies to the BPI and all it's derivatives in any language.

    Retrieved from http://www.mdanderson.org/

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    The CANHELP caregiver questionnaire was designed to evaluate satisfaction with care for older patients with life threatening illnesses, and the family members. A straight forward satisfaction instrument that you can use t rate the quality of care at the programs or organization level.

    Reference: CARENET Canadian Researchers at the End of Life Network. (n.d.). CANHELP Tool.  Retrieved from www.thecarenet.ca/index.php?option=com_content&view=article&id=115&Itemid=57.

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    The CHPCA is the national voice for hospice palliative care in Canada. Advancing and advocating for quality end-of-life/hospice palliative care, its work includes public policy, public education and awareneness.  Website www.chpca.net.

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    A comprehensive, holistic assessment of individuals and their families at end-of-life.

    Reprinted with Permission from Canadian Hospice Palliative Care Association.  Registered Nurses' Association of Ontario.  (2011). Appendix K of End-of-Life Care During the Last Days and Hours. Toronto, ON: Author.  pp. 114-115. 

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    This link provides information and support for professionals on palliative and end-of-life care, loss and grief.  There is a list of clinical tools and useful resources to enhance palliative and end life care. Website www.virtualhospice.ca.

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    This information fact sheet is developed as a supplement to the RNAO Nursing Best Practice Guideline document for nurses. The nursing best practice guideline End-of-life Care During the Last Days and Hours is available for public viewing and free to download at www.rnao.ca/bestpractices.

    Registered Nurses’ Association of Ontario. (2011).  Care In The Last Days And Hours Of Life.  Toronto, Canada: Author.  Retrieved from https://rnao.ca/sites/rnao-ca/files/Care_in_the_Last_Days_and_Hours_of_Life.pdf

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    Guide and Algorithm to guide assessment and management of cancer related anxiety.

    Cancer Care Ontario. (2013). Palliative Care Toolkit for Indigenous Communities. Retrieved from https://www.cancercareontario.ca/en/guidelines-advice/treatment-modality/palliative-care/toolkit-aboriginal-communities

     

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    Diseases such as chronic obstructive pulmonary disease or congestive heart failure run a more fluctuating course and result in death in a less predictable timeframe than diseases such as renal disease or dementia. Each exacerbation can lead to remission (and future exacerbation) or death; knowing which will occur on any given admission is extremely challenging. General indicators of poorer prognosis (life expectancy of only weeks to many weeks) include poor performance status, impaired nutritional status and a low albumin level.

    Registered Nurses’ Association of Ontario. (2011). Appendix E of End-of-Life Care During the Last Days and Hours. Toronto, Canada: Author. pp103-105 .

    References:

    1 Minnesota Hospice Organization. National hospice organization medical guidelines for determining prognosis in selected non-cancer diseases: a physician’s guideline. St. Paul: Hospice Minnetsota; 1996. 2 Pfeifer, M. End of life decision making: special considerations in the COPD patient. Medscape G Med. 1999; 1(3). Available from: www.medscape.com/viewarticle/408735 3 Derfler, M., Jacob, M., Wolf, RE., Bleyer, F. & Hauetman, PJ. Mode of death from congestive heart failure: implications for clinical management. Am J Geriatr Cardiol. 2004; 13(6): 299-304. Source: Pereira, J. L., Associates. Pallium palliative pocketbook: A peer-reviewed, referenced resource. 1st Cdn, Canada: The Pallium Project; 2008. Reprinted by permission of The Pallium Project 4 Sachs, GA, Shega, JW, Cox-Hayley, D. Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med. 2004; 19: 1057-63. 5 Allen, RS., Kwak, J., Lokken, KL., Haley, W. End of life issues in the context of Alzheimer’s Disease. Alz Care Quart. 2003; 4(4): 312-30.

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    Residents with severe dementia or other end stage diseases eat less as part of the natural progression of their disease. Research at end of life suggests that as residents eat and drink less they do not suffer from hunger or thirst. This session will focus on “Comfort Feeding Only” (CFO), when oral intake is not sufficient to sustain life, and if prolonging life with artificial hydration is not consistent with the residents' wishes (as expressed by the resident or their substitute decision maker (SDM)).

    This webinar is intended for long-term care leaders facilitating practice change and direct care staff that will benefit from understanding CFO process and the goal of the feedings to achieve comfort by employing the least invasive and potentially most satisfying way to provide nutrition. During this webinar, participants will:

    • Understand process followed to identify gap, develop policy and implementation of CFO
    • How to have a conversation with resident, family/SDM for comfort feeding only
    • Learn different implementation strategies to initiate CFO
    • Know strategies focusing on safe positioning and swallowing
    • Recognize symptoms such as dry mouth that can be alleviated with minimal oral intake and/or oral care

    Presented by Dr. Evelyn Williams and Jennifer Wong - Veteran's Centre Sunnybrook Health Sciences Centre in collaboration with Registered Nurses’ Association of Ontario (2017). Comfort Feeding Only(CFO): Managing Feeding at End-of-Life. RNAO You Tube. Retrieved from https://youtu.be/OB_HMSqKcao

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    The Alzheimer Society Canada website contains a number of resources on the unique needs of people with dementia at the end of their lives.

    Reference: Alzheimer Society Canada Dementia and End of Life Care. Retrieved from Website: http://www.alzheimer.ca/en/Living-with-dementia/Caring-for-someone/End-of-life-care

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    Management of diabetes can pose challenges as patients approach death. While there is little clinical research to guide decision-making, this Fast Fact reviews important considerations and practical recommendations about diabetes care in patients thought to be in their final few months of life. Note: all guidelines here are empiric and based on published, expert recommendations, including blood glucose goals, and all clinical decisions need to be individualized.

    Reference: Bradley C, Brasel K. Fast Facts and Concepts # 258. Diabetes Management At the End-of-Life. n.d. Available at:http://www.mypcnow.org/#!fast-facts/c6xb

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    The revised Edmonton Symptom Assessment System (ESAS-r) is available in multiple languages and is designed to assist in the assessment of 10 common symptoms: pain, tiredness, drowsiness, nausea, lack of appetite, shortness of breath, depression, anxiety, well-being and constipation. It conveys the individual’s description of the severity of a symptom based on a scale ranging from 0 to 10. 

    Registered Nurses’ Association of Ontario. (2011). Appendix F of End-of-Life Care During the Last Days and Hours. Toronto, Canada: Author. pp. 106-107. 

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    The brainXchange End of Life Care section contains presentation slides and resources on end of life care, including care related to persons in the final stages of dementia.

    Website: http://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/End-of-Life-Care.aspx

    © 2016 brainXchange

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    This brochure prepared by Alzheimer's Association provides support in preparing for the end of life, especially when families must make choices.

    Reference: Retrieved from Alzheimer's Association http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf

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    Improving End-of-Life Care in First Nations, The Way Forward Integration Initiative, Quality End-of-Life Care Coalition of Canada and Canadian Hospice Palliative Care Association partnered to develop advance care planning educational resources for people living in First Nations Communities.

    Speak Up. (n.d.) Retrieved from http://www.advancecareplanning.ca/community-organizations/download-the-speak-up-campaign-kit/first-nations-acp-resources.aspx

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    This scale's purpose is to determine how nurses feel about certain situations in which they are involved with patients. All statements concern nursing care given to the dying person and/or his/her family. Where there is a reference to a dying patient, assume it refers to a person who is considered to be terminally ill, with six months or fewer to live.

    Source: Folmelt, K. American Journal Hospice Palliative Care (Vol. 8, Issue 5) pp. 37-43 Copyright 1991 By Sage Publication

    Registered Nurses' Association of Ontario. (2011). Appendix G of End-of-Life Care During the last Days and Hours. Toronto, ON: Author pp. 108-109

    Retrieved from http://rnao.ca/sites/rnao-ca/files/End-of-Life_Care_During_the_Last_Days_and_Hours_0.pdf

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    This link takes you to the Geriatric Pain website http://www.geriatricpain.org

    The website was created to provide nurses who work in LTC environments with access to free best practice pain assessment tools and resources to help manage pain in older adults, including quality improvement processes focused on pain management

     

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    The Cancer Care website links to the guidelines for palliative care. The target population is any individual requiring palliative care. All Clinicians and staff involved in the delivery of palliative care can use this guideline.

    Retrieved from: https://www.cancercareontario.ca/guidelines-advice/types-of-cancer/28286

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    The link will take you to the presentation by Judith Whal, hosted by Hospice Palliative Care Ontario https://hpco.adobeconnect.com/_a1122975890/p6js6fkeod3/?launcher=false&fcsContent=true&pbMode=normal

    The PDF version of the presentation is also attached. Retrieved from: http://www.hpco.ca/

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    This section of the brainXchange website focuses on health care consent and advance care planning, with many presentations and resources available to help when caring for persons at the end of life.

    Reference: Title: brainXchange, Health care consent and advance care planning (2016). This section of the brainXchange website focuses on health care consent and advance care planning, with many presentations and resources available to help when caring for persons at the end of life. Website: http://brainxchange.ca/capacity.aspx

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    This guide is intended to help health care/hospice palliative care professionals and volunteers to have a conversation with and/or respond to patients or their families around Medical Assistance in Dying (MAiD).

    Reference: Palliative Care and Medical Assistance in Dying (MAiD) in Canada (2017, June). Retrieved from https://www.chpca.ca/wp-content/uploads/2019/12/chpca-maid-booklet-eng-12page-final-web.pdf

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    The Hospice Palliative Care Ontario offers many educational resources for caregivers including Advance Care Planning and Health Care Consent for Health Service Providers. There is also a Palliative Care Core Course for Interdisciplinary staff which covers pain and symptom management, ethical decisions, communication and end of life in dementia. Materials are freely accessible.

    Reference: Title: Hospice Palliative Care Ontario (2015) Description: The Hospice Palliative Care Ontario offers many educational resources for caregivers including Advance Care Planning and Health Care Consent for Health Service Providers. There is also a Palliative Care Core Course for Interdisciplinary staff which covers pain and symptom management, ethical decisions, communication and end of life in dementia. Materials are freely accessible. Website: http://www.hpco.ca/

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    At the 2017 Ontario Long Term Care Association Together We Care Convention and Trade Show, Primacare Living Solutions shared their experience with the first MAID case in long-term care. This resource highlights a listing of key learnings and implementation strategies that homes can consider to support them to implement MAID. Please note that this is evolving issue, and some resources and strategies may become outdated with time, and as new legislation and clinical direction emerge from government and other regulatory bodies.

    This toolkit, including all associated resources, may be utilized and adapted by long-term care homes free of charge. We ask that Primacare Living Solutions be referenced and acknowledged where appropriate. D) Reference: Implementing the First MAID case in Ontario Long-Term Care: Primacare Living Solutions (2017) Retrieved from http://www.oltca.com/OLTCA/Documents/InnovationExchange/MAID/PrimacareSolutions_MAIDToolkit.pdf 

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    Pallium Canada provides palliative care education to all health providers through workshops, e-learning and more.

    Website: http://pallium.ca/

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    On June 16, 2016, the federal government passed legislation to amend Canada’s Criminal Code and established a federal framework for Medical Assistance in Dying (MAID) for individuals who meet pre-defined eligibility criteria.

    MAID, as defined by the Government of Canada, refers to: The administering by a medical practitioner or nurse practitioner of a substance to a person, at their request, that causes their death. The prescribing or providing by a medical practitioner or nurse practitioner of a substance to a person, at their request so that they may self-administer the substance, and in doing so, cause their own death. As part of its efforts to implement a consistent approach to the MAID process in Ontario, the Ministry of Health and Long-Term Care (MOHLTC) has engaged the Centre for Effective Practice (CEP) to develop a resource to support clinicians (physicians and nurse practitioners) with the provision of MAID. Retrieved from: https://thewellhealth.ca/maid/

    Centre for Effective Practice. (2019). Medical Assistance in Dying (MAID): Ontario (rev). Retrieved from: https://thewellhealth.ca/maid/

     

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    This guide developed by the Ontario government is intended to provide information for those individuals who are considering Medical Assistance in Dying (MAiD). Web Address or Source: http://health.gov.on.ca/en/pro/programs/maid/docs/maid.pdf Reference: Medical Assistance in Dying – Information for Patients. (2017, May). Retrieved from http://health.gov.on.ca/en/pro/programs/maid/docs/maid.pdf
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    The Ministry of Health and Long-term Care (MOHLTC) has provided an update on medical assistance in dying (MAID) implementation pieces. This webpage is to provide the general public, patients and providers with MAID-specific information, guidance and resources.

    Retrieved from http://www.health.gov.on.ca/en/pro/programs/maid/default.aspx

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    RNAO hosted a two-part webinar to discuss the new law and regulatory requirements surrounding medical assistance in dying (MAID) and what it means for registered nurses, nurse practitioners and nursing students During this educational presentation, following topics are covered: Recent legal developments Legal and regulatory obligations and expectations Have an opportunity to ask questions Retrieved from:http://rnao.ca/events/medical-assistance-dying-what-nurses-need-know
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    The Canadian Nurses' Association's framework on MAID outlines the role of nurses and nurse practitioners (NPs) and supports them in their practice when caring for patients who are considering end-of-life decisions. It also highlights the changes to the Criminal Code and other federal laws through Canada’s new MAID legislation, which permits MAID under certain circumstances.

    Website: https://www.cna-aiic.ca/~/media/cna/page-content/pdf-en/cna-national-nursing-framework-on-maid.pdf?la=en   

    All rights reserved. Permission to reproduce is permitted without changes and for non-commercial use. Refer to www.cna-aiic.ca/en/terms-and-conditions-of-use#

    Copyright for all terms and conditions to reproduce. © Copyright 2017

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    The Ontario Palliative Care Network is a partnership of community stakeholders, health service providers and health systems planners who are developing a coordinated and standardized approach for delivering palliative care services in Ontario. In the website Resources section can be found many useful palliative care tools, guidance and evidence, reports and legislative updates.

    Web Address or Source:www.ontariopalliativecarenetwork.ca/

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    PACSLAC is a tool to observe and assess both common and subtle pain behaviours. Copyright © Shannon Fuchs-Lacelle and Thomas Hadjistavropoulos. The PACSLAC may not be reproduced without permission. For permission to reproduce the PACSLAC, please contact the copyright holders (Thomas.Hadjistavropoulos@uregina.ca).

    Retrieved from http://www.geriatricpain.org/content/Assessment/Impaired/Pages/default.aspx

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    This quality standard addresses palliative care for people who are living with a serious, life-limiting illness, and for their family and caregivers. The goal of palliative care is to relieve pain and suffering, and to improve a person’s quality of life. This quality standard focuses on care for people in all settings, including home and community, hospice, hospital, and long-term care.

    Health Quality Ontario (2018). Palliative Care Guide. Retrieved from: https://www.hqontario.ca/portals/0/documents/evidence/quality-standards/qs-palliative-care-clinical-guide-en.pdf

     

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    Cancer Care Ontario website links to best-practice tools from around the world to support primary care providers in the delivery of palliative care.  Tools are organized according to the 3-step model of best practice: Identify, Assess, and Plan.

    For resources tailored to support First Nations, Métis and Inuit families and communities, please see Tools for the Journey: Palliative Care in First Nations, Inuit and Métis Communities , a Resource Toolkit, developed by the Aboriginal Cancer Control Unit at Cancer Care Ontario.

    Retrieved from: https://www.cancercare.on.ca/toolbox/pallcaretools/

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    The Website contains numerous end-of-life resources for health care professionals.

    Copyright: End of Life Curriculum Project, a joint venture of the US Veterans Administration and SUMMIT, Stanford University Medical School

    Retrieved from http://palliative.stanford.edu/

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    Resource for palliative, pain and symptom management.

    Palliative Pain and Symptom Management Consultation Program: South Western Ontario.  (n.d.). Resources.  Retrieved on September 29, 2013.  Website www.palliativecareswo.ca.  © Copyright 2002-2008.

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    PPS may be used for several purposes. It is an excellent communicatiuon tool for quickly describing a patients current functional level.

    The Victoria Hospice Palliative Performance Scale (PPS, version 2) is an 11-point scale  communication tool for describing the current functional level and appears to have prognostic value.  The PPS provides a framework for measuring progressive decline over the course of illness.  If you wish to print any of these tools for your use, please go to https://victoriahospice.org/wp-content/uploads/2019/12/PPSv2-English-Sample.pdf to download a copy of Victoria Hospice's reprint and use permission request form.

    Victoria Hospice Society. (2001) Clinical Tools. Retrieved from hhttps://victoriahospice.org/wp-content/uploads/2019/12/PPSv2-English-Sample.pdf.

     © Victoria Hospice Society, 2006.

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    PPI relies on the assessment of performance status using PPS, oral intake, and the presence or absence of dyspnea, edema or delirium.

    Registered Nurses’ Association of Ontario. (2011). Appendix D of End-of-Life Care During the Last Days and Hours.  Toronto, Canada: Author. p 101.  Copyright (2008), with permission from Elsevier.

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    PaP uses the Karnofsky Performance Scale (KPS) and 5 other criteria to generate a numerical score from 0 to 17.5 to predict 30 day survival (higher scores predict shorter survival).

    Registered Nurses’ Association of Ontario. (2011).  Appendix D of End-of-Life Care During the Last Days and Hours. Toronto, Canada: Author. pp. 102-103.  Copyright (1999), with permission from Elsevier.

    Reprinted from Journal of Pain and Symptom Management, Vol. 17, No. 4, Maltoni, M, Nanni, O, Pirovano, M., Scarpi, E., Indelli, M, Martini, C, et al., Successful Validation of he Palliative Prognostic Score in Terminally ill Cancer Patient, 240-247

     

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    Judith Wahl outlines that the communication of the Health Care Consent Act to the resident by the health provider is required and is part of the responsibility to obtain an informed consent from the resident before treatment is delivered. Health Care Providers need to understand the basic requirements of the Health Care Consent Act.

    Advocacy Centre for the Elderly. (2016). Patient Centred Care: “Wishes” are not Consent. Retrieved from: http://www.advocacycentreelderly.org/appimages/file/Wishes-not-consent.pdf

     

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    To facilitate sharing information about prognosis with the patient during end-of-life care discussions, clinicians can use the "SPIKES" process (Setting up, Perception, Invitation, Knowledge, Emotions, and Strategy and Summary).

    Registered Nurses’ Association of Ontario. (2011). SPIKES: A Six Step Strategy for Delivering Bad News (Baile et al., 2000, p. 305-307) of End-of-Life Care During the Last Days and Hours.Toronto, Canada: Author. p 30.

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    This tool is utilized when exploring the spiritual aspects of end-of-life.  ©1999 Christina Puchalski, M.D.

    Retrieved from  The George Washington Institute for Spirituality & Health https://smhs.gwu.edu/gwish/clinical/fica/spiritual-history-tool 

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    Individuals have a right t know their options and to have their preferences considered. Supporting individuals who are nearing the end of life requires interprofessional collaboration and problem-solving. Shared decision-maing can help individuals participate in the decision-making process in the ways the prefer and can help to meet their needs.

    Strategies for health-care providers to help families and individuals with decision making on end-of-care.

    Registered Nurses’ Association of Ontario (2011). Appendix J of End-of-Life Care During the Last Days and Hours. Toronto, ON: Author. pp. 112-113.

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    The National GSF Centre’s guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care.  This updated 6th edition of the GSF PIG, renamed as Proactive Identification Guidance and formally known as Prognostic Indicator Guidance, aims to enable the earlier identification of people nearing the end of their life who may need additional supportive care. This includes people who are nearing the end of their life following the three main trajectories of illness for expected deaths – rapid predictable decline e.g. cancer, erratic decline e.g. organ failure and gradual decline e.g. frailty and dementia

    The Gold Star Framework. (2018). The Gold Standards Framework Proactive Identification Guidance (PIG). Retrieved from: https://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

     

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    Ideas to conduct a conference with individuals and families to assist with decision making at end-of-life.

    Registered Nurses’ Association of Ontario (2011). Appendix H of End-of-Life Care During the Last Days and Hours. Toronto, ON: Author. pp. 109-110.

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    This pamphlet is helpful in preparing families and caregivers for understanding the final stage of life.  

    Prepared by Ida Tigchelaar, RN, Palliative Care Pain & Symptom Management/Education Consultant, Oxford & Elgin Counties of Ontario.