End-of-Life Care During the Last Days and Hours

Recommendation 1.1: Nurses identify individuals who are in the last days and hours of life.

Recommendation 1.1.1: Use clinical expertise, disease specific indicators and validated tools to identify these individuals.

Recommendation 1.1.2: Understand the end-of-life trajectories.

Recommendation 1.2: Nurses understand the common signs and symptoms present during the last days and hours of life.

Recommendation 1.2.1: Common signs of imminent death, may include, but are not limited to: 

• progressive weakness; 
• bedbound state; 
• sleeping much of the time; 
• decreased intake of food and fluid; 
• darkened and/or decreased urine output; 
• difficulty swallowing (dysphagia); 
• delirium not related to reversible causes; 
• decreased level of consciousness not related to other causes; 
• noisy respiration/ excessive respiratory tract secretion; 
• change in breathing pattern (Cheyne-Stokes respiration, periods of apnea); and 
• mottling and cooling extremities.

Recommendation 1.3: Nurses complete a comprehensive, holistic assessment of individuals and their families based on the Canadian Hospice Palliative Care Association Domains of Care, which include the following: 

• disease management; 
• physical; 
• psychological; 
• spiritual; 
• social; 
• practical; 
• end-of-life care/ death management; and 
• loss, grief.

Recommendation 1.3.1: Include information from multiple sources to complete an assessment. These may include proxy sources such as the family and other health-care providers.

Recommendation 1.3.2: Use evidence-informed and validated symptom assessment and screening tools when available and relevant.

Recommendation 1.3.3: Reassess individuals and families on a regular basis to identify outcomes of care and changes in care needs.

Recommendation 1.3.4: Communicate assessments to the interprofessional team.

Recommendation 1.3.5: Document assessments and outcomes.

Recommendation 1.4: Nurses: 

• reflect on and are aware of their own attitudes and feelings about death; 
• assess individuals’ preferences for information;
• understand and apply the basic principles of communication in end-of-life care; 
• communicate assessment findings to individuals (if possible and desired) and the family on an ongoing basis; 
• educate the family about the signs and symptoms of the last days and hours of life, with attention to their: faith and spiritual practices; age-specific needs; developmental needs; cultural needs; and 
• evaluate the family’s comprehension of what is occurring during this phase.

Recommendation 2.1: Nurses recognize and respond to factors that influence individuals and their families’ involvement in decision-making.

Recommendation 2.2: Nurses support individuals and families to make informed decisions that are consistent with their beliefs, values and preferences in the last days and hours of life.

Recommendation 3.1: Nurses are knowledgeable about pain and symptom management interventions to enable individualized care planning.

Recommendation 3.2: Nurses advocate for and implement individualized pharmacologic and non-pharmacologic care strategies.

Recommendation 3.3: Nurses educate and share information with individuals and their families regarding: 

• reconciliation of medications to meet the individual’s current needs and goals of care; 
• routes and administration of medications; 
• potential symptoms; 
• physical signs of impending death; 
• vigil practices; 
• self care strategies; 
• identification of a contact plan for family when death has occurred; and 
• care of the body after death.

Recommendation 3.4: Nurses use effective communication to facilitate end of life discussions related to: 

• cultural and spiritual values, beliefs and practices; 
• emotions and fears; 
• past experiences with death and loss; 
• clarifying goals of care; 
• family preference related to direct care involvement; 
• practical needs; 
• informational needs; 
• supportive care needs; 
• loss and grief; and 
• bereavement planning.

Recommendation 4.1: Entry to practice nursing programs and post-registration education incorporate specialized end-of-life care content including: 

• dying as a normal process including the social and cultural context of death and dying, dying trajectories and signs of impending death; 
• care of the family (including caregiver); 
• grief, bereavement and mourning; 
• principles and models of palliative care; 
• assessment and management of pain and other symptoms (including pharmacologic and non-pharmacologic approaches); 
• suffering and spiritual/existential issues and care; 
• decision-making and advance care planning; 
• ethical issues; 
• effective and compassionate communication; 
• advocacy and therapeutic relationship-building ; 
• interprofessional practice and competencies; 
• self-care for nurses, including coping strategies and self-exploration of death and dying; 
• end-of-life issues in mental health, homelessness and the incarcerated; 
• the roles of grief and bereavement educators, clergy, spiritual leaders and funeral directors; and 
• knowledge of relevant legislation.

Recommendation 4.2: Successful education in end-of-life care includes specific attention to the structure and process of learning activities and incorporates: 

• small group learning; 
• dyadic and experiential learning approaches; 
• integration and consolidation of theory and practice; 
• opportunities to practice the skills and competencies acquired; 
• constructive feedback and/or reflection on acquired knowledge, skills and competencies; and 
• contact with knowledgeable and supportive clinical supervisors and mentors.

Recommendation 5.1: Models of care delivery support the nurse, individual and family relationship.

Recommendation 5.2: Organizations recognize that nurses’ well-being is a critical component of quality end-of-life care and adopt responsive strategies.

Recommendation 5.3: Organizations providing end-of-life care demonstrate evidence of a philosophy of palliative care based on the Canadian Hospice Palliative Care Association’s The Model to Guide Hospice Palliative Care.

Recommendation 5.4: Nursing best practice guidelines can be successfully implemented only when there are adequate planning, resources, organizational and administrative supports, as well as appropriate facilitation. Organizations may wish to develop a plan for implementation that includes: 

• An assessment of organizational readiness and barriers to implementation 
• Involvement of all members (whether in a direct or indirect supportive function) who will contribute to the implementation process. 
• Dedication of a qualified individual to provide the support needed for the education and implementation process. 
• Ongoing opportunities for discussion and education to reinforce the importance of best practices. 
• Opportunities for reflection on personal and organizational experience in implementing guidelines.