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.

The palliative care experience maps are a visual representation of the opportunities and gaps in home and community-based palliative care encountered by home care providers, palliative care experts, patients and their caregivers. Although each experience mapping process explored a different aspect of home-based palliative care, the results of the consultations and dialogue identified three shared touchpoints that impacted all experiences:

  • Knowledge: understanding of palliative care
  • Skills: ability, experience and competency in palliative care
  • Processes: procedures, structure and tools that enable home-based palliative care

Advance Care Planning

Gaps in skills, proficiency, and time for home care providers to engage in these important conversations were frequently identified. Understanding of disease trajectory and prognosis and who to involve in initial and ongoing conversations are re-occurring challenges.

Opportunities currently in practice include serious illness conversations, tools for advance care planning, communities of practice and palliative care networks. Download PDF

Assessment and Care Planning

Many evidence-informed assessment tools are available, but lack of knowledge, skills and time to complete them often limit the use of these valuable resources. Although early identification and assessment of palliative needs is critical to a palliative approach to care, this vital step is frequently missing in current operational processes. Family caregivers experience challenges in being recognized and included in the care planning and delivery process.

Opportunities include remote self-monitoring programs, evidence-based assessment tools, enhanced “circle of care” and simplified access to palliative care specialists. Download PDF

Communication

Currently there is limited or no access to technology to support information sharing. Often it is not clear who to communicate with or how. Information is routinely incomplete or inconsistent.

Family caregivers are inundated with paper and pamphlets.

Virtual hospice is a valuable resource for home care providers. Palliative clinical resource nurses and provincial consultation lines support quick access to vital information.. Download PDF

Medication and Supplies

Mistakes and errors occur when supplies are lost or misplaced due to poor inventory management. Disposal processes for medications are not routine or well communicated.

Given the importance of medication, equipment and supplies for home and community-based palliative care, the experiences we heard, the challenges providers shared, and the lack of solutions are alarming. Download PDF

MAPPING THE PALLIATIVE CARE EXPERIENCE

A comprehensive engagement process was used to identifying gaps and opportunities for innovations in operational processes in home and community-based palliative care.

  • Four invitational providers workshops were held across Canada (BC, AB, ON and PEI) with home care providers and palliative care experts.
  • A range of cultural, religious and LGBTQ organizations were invited to participate in one-on-one interviews to provide insights into barriers and considerations for delivering culturally respectful home-based palliative care.
  • Interviews and a survey with patients and caregivers captured the voices of patients with palliative care needs and their caregivers.
  • An e-Delphi process was undertaken with over 90 experts from across Canada to validate the content of the experience maps.

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

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