Palliative Care

Care for Adults With a Serious Illness

Resources Quality Statements Working Group About

8

Education for Patients, Substitute Decision-Makers, Families, and Caregivers

People with a progressive, life-limiting illness, their future substitute decision-maker, their family, and their caregivers are offered education about palliative care and information about available resources and supports.

Background

For people with a progressive, life-limiting illness, their substitute decision-makers, and their family and caregivers, education plays a vital role in increasing their knowledge about their care, providing reasonable expectations about illness progression and palliative care, and preparing them for the decisions they will need to make. Education can increase a person’s sense of self-control and well-being. Education about symptom management and coping strategies improves symptom control for patients at the end of life and improves quality of life for caregivers. It is important that the education provided be sensitive to health literacy and linguistic and cultural preferences. The information can be delivered in a variety of formats, from in-person interaction to using written materials, online self-training, or hands-on skills practice and problem-solving.

What This Quality Statement Means

For Patients, Families, and Caregivers

Your care team should give you, your family, your substitute decision-maker, and your caregivers information about palliative care. They should also give you information about resources and supports,such as counselling, hospice volunteers, wellness programs, spiritual care, or support groups. This knowledge can help you understand your treatment and service options, how palliative care can improve your quality of life, and how to connect with available supports.

For Clinicians

Provide education about palliative care to patients, their families, and their caregivers, and offer information about available resources and supports.

For Health Services

Ensure that educational resources and tools about palliative care are available for health care professionals, patients, their families, and their caregivers.

Quality Indicators

Process Indicators

Percentage of people with identified palliative care needs (or their caregivers) who state that health care professionals helped them understand palliative care and provided information about available resources and supports

Denominator: total number of people with identified palliative care needs (or their caregivers)
Numerator: number of people in the denominator who state that health care professionals helped them understand palliative care and provided information about available resources and supports
Data source: local data collection

Percentage of people with identified palliative care needs (or their caregivers) who state that a health care professional helped them understand what to expect and how to prepare for each stage of the journey toward the end of life

Denominator: total number of people with identified palliative care needs (or their caregivers)
Numerator: number of people in the denominator who state that health care professionals helped them understand what to expect and how to prepare for each stage of the journey toward the end of life
Data source: local data collection
Similar question available in the CaregiverVoice Survey: “Did your healthcare providers help you, the caregiver, understand what to expect/how to prepare for his/her death?” (Response options: “Yes; No, I was not aware of these services but I would have liked to use them; No, I was not aware of these services but I was not interested anyway; No, I was aware of these services but I was not interested anyway; Not sure”)

Structural Indicator

Local availability of resources and tools for health care professionals to provide education about palliative care to patients, families, and caregivers

Data source: local data collection

Definitions Used Within This Quality Statement

Education

Education topics may include symptom management, grief and loss, coping strategies, available community resources, system navigation, patient rights, health decision-making, medication, practical and physical care, death and dying, vigil practices, and care after death.

Evidence to Improve Care