End-of-Life Care

A tool to assist with comparing your organization’s current practice with evidence-based RNAO best practice recommendations.

Registered Nurses Association of Ontario (2022)Gap Analysis-End-of-Life Care During Last Days and Hours. Toronto. ON

This best practice guideline (BPG) provides evidence-based recommendations to nurses and the interprofessional health team who support adults experiencing the last 12 months of a progressive life-limiting illness, and their families and caregivers. 

Registered Nurses’ Association of Ontario (2020). A Palliative Approach to Care in the Last 12 months of Life. Toronto, ON: Author.

Retrieved from: https://rnao.ca/bpg/guidelines/palliative-approach-care-last-12-months-life

© 2020 RNAO. All rights reserved

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. 

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

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.

The Bereavement Risk Assessment Tool, or BRAT, is a psychosocial assessment tool used by care teams to communicate personal, interpersonal and situational factors that may place a caregiver or family member at greater risk for a significantly negative bereavement experience.

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.

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. 

Goals of Care discussions help a person living with a life-limiting illness understand the serious nature of their illness. If the person is incapable, the discussions are with their substitute decision-maker. Goals of Care discussions also help healthcare providers to understand the patient’s values and goals for their care.

https://www.cancercareontario.ca/en/guidelines-advice/treatment-modality/person-centred-care/goals-of-care-toolkit-oncology

Cancer Care Ontario

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

On Mar. 17, 2021, the federal government passed Bill C-7 to amend the Criminal Code to expand eligibility for Medical Assistance in Dying (MAID). 

Retrieved from: https://www.cno.org/en/trending-topics/medical-assistance-in-dying/ 

© 2022 College of Nurses of Ontario

The recommendations within this BPG focus on quality of life, emphasizing a holistic approach to care that incorporates the person’s individuality and preferences, and that recognizes the person and family as the unit of care. Figure 2 identifies complex issues persons and their families may face when receiving palliative care, which are categorized into eight equally important domains.

https://bpgmobile.rnao.ca/sites/default/files/Figure%202%20Domains%20of%20Issues%20Associated%20with%20Illness%20and%20Bereavement.pdf 

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. 

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

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

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

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/

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

Implementing a Palliative Approach to Care in Long Term Care: An Implementation Guide and Resource Toolkit that aligns with the expanded Palliative Approach to Care requirements within the Fixing Long-Term Care Act, 2021 (FLTCA). The document is divided into 3 sections, each section starts with content related to the section’s theme, followed by a comprehensive list of resources, including hyperlinks. 
1. Key concepts in a palliative approach to care
2. Mentorship, education and support to build competency and capacity
3. Implementing a palliative approach to care

Retrieved from: https://www.palliativecareswo.ca/docs/LTCH_Resource_%20Guide.pdf  

Developed by a Canadian research team who has been funded by the Canadian Institutes for Health Research to explore the ethical, policy, and practice implications of Medical Assistance in Dying for Nurses. As part of our knowledge translation strategy, a Reflective Guide for Nurses that addresses six main areas of nursing practice in relation to Medical Assistance in Dying: nurses’ experiences, making moral sense, best practices, common dilemmas, and self-care. The Reflective Guide includes a video that provides a compelling insight into a few nurses’ experiences with Medical Assistance in Dying. This free guide can be used for individual study or as part of an educational offering.

https://www.maidreflectiveguide.ca/

Author: CIHR IRSC, Funding from CIHR: CIHR Project Grant PJT-148655; CIHR Project Grant PJT-169144

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/

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/

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: https://gerocentral.org/wp-content/uploads/2013/12/Pain-Assessment-Checklist-for-Seniors-with-Limited-Ability-to-Communicate-PASLAC.pdf

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/

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.

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.

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.

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.

Supportive and Palliative Care Indicator Tool SPICT™ helps clinicians identify people with one or more general indicators of poor or deteriorating health and clinical signs of life-limiting conditions for assessment and care planning.
A single page tool that includes general (i.e. weight loss, hospital admissions, etc.) and broad specific disease indicators (i.e. breathlessness at rest for heart and respiratory disease). Also includes an assessment paradigm.

MAID (medical assistance in dying), is an option during end of life that has substantial consequences for nursing practice. The goal of this toolkit is to facilitate how you may think about MAID as it relates to both your life and your nursing practice. This reflective Guide for Nurses examines six areas of nursing practice in conjunction to Medical Assistance in Dying: nurses’ experiences, making moral sense, best practices, common challenges, and self-care. It includes a video capturing nurses' experiences with MAID and this resources can be used in a group setting or independently. 

Please note that this reflective guide was not designed to instruct you about the MAID legislation or the specific policies to guide your practice. To be competent to provide care you will need to familiarize yourself with the MAID legislation, your healthcare region policies, and your professional standards.

Retrieved from: https://www.maidreflectiveguide.ca/

Research Team Credit: Barbara Pesut, Sally Thorne, Michael Banwell, Michael Burgess, Kenneth Chambaere, Madeleine Greig, Margaret Hall, Josette Roussel, Catharine J. Schiller, Janet Storch, Carol Tishelman, David Kenneth Wright

Funding from Canadian Institutes for Health Research: CIHR Project Grant 

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.