The purpose of mapping the palliative care experience was to understand the patient, caregiver and provider experience when receiving or providing home-based palliative care. This interactive process encouraged participants to reflect on how they think, feel and behave at each stage of the integrated palliative care journey.

Regional Stakeholder Workshops

Four invitational stakeholder workshops were held across the country. A total of 53 experts participated in these sessions, including home care service providers with palliative care experience, palliative care physicians, directors and managers of palliative programs, policymakers with direct responsibility for palliative care, paramedics and family caregivers.

Key Informant Interviews with Cultural Groups

The results of the key informant interviews showed that palliative care experiences can be variable for patients and caregivers who identify with specific cultural groups. Factors that impact these experiences include geography, language and literacy barriers, assumptions about cultural needs and expectations or trauma experiences (e.g., refugee population).

Interviews and Survey with Patients and Caregivers

A flexible approach was used to capture the experiences of patients with palliative care needs and their caregivers. The CHCA engaged patients and caregivers through scheduled telephone interviews and an online survey. A total of 15 caregivers participated in 30-minute one-on-one telephone interviews. The online survey was completed by 61 respondents from seven provinces (BC, AB, MB, ON, PQ, NB, PEI).

e-Delphi Validation Process

An e-Delphi process was undertaken with a group of experts to validate and prioritize the key areas of improvement. A wide range of experts were recruited for the panel, including all participants from the four regional workshops, representatives of leading home care provider organizations, relevant non-governmental organizations, and government agencies. Interested caregivers from the consultation phase were also invited to participate. The goal was to have a panel of experts with a range of experiences with palliative care and home care.

Creating the Experience Maps

Gaining a clear understanding of gaps and opportunities from the provider and patient/caregiver perspective enabled the teams to target specific area and identify leading practices that would have an immediate impact on quality care. The palliative care experience maps provide a guide for future initiatives to focus on identified gaps and challenges in four areas:

ASSESSMENT AND DELIVERY

Experience in early and ongoing identification of the needs and strengths of patients and caregivers and ways to incorporate assessment results into shared care plans. Download PDF

ADVANCE CARE PLANNING

Experience translating advance care plans and health care wishes into the planning and delivery of services in the home. Download PDF

EQUIPMENT AND MEDICATION

Experience in timely access, efficient management and safe disposal of equipment, supplies and medications in the home. Download PDF

COMMUNICATION

Experience in communication with patients, caregivers and the multi-disciplinary care team that support shared decision making and care coordination. Download PDF

TOOLS AND RESOURCES

Setting of Care – Infographic

A profile of the various settings where palliative care is provided. Download Infographic

Caregivers’ Experiences – Infographic

Experiences of caregivers in home-based palliative care. Download Infographic

Caregivers Experiences in Palliative Care

National Caregiver Day 2019 Webinar featuring feedback from caregivers about their experiences of palliative care and introducing a new information brochure “’When Someone Close to You is Dying”.  Presentation PDF   |   Watch Video

This post is also available in: French