Home-Based Palliative Care
Building Operational Excellence
INCLUSION OF ADVANCE CARE PLANS INTO CARE DELIVERY
“They listened to me. They understood. I knew what my husband wanted. If they didn’t understand they asked. We all agreed.”
WIFE – Caregiver
“My sister’s advance care plan was simple – she wanted to be at home with her family around her. That was it. Not in hospital, not in a swirl of chaos in an emergency department. What was equally important to her was living comfortably and leaving a legacy of memories, so we worked with her team to make it happen that way.”
SISTER – Caregiver
“Each person who engaged with my Father when he was home did not really understand the end of life stage of his care and tended to interject their own understanding of what he “needs.”
DAUGHTER – Caregiver
“My aunt was freaked out being confronted with end-of-life decisions with no advance preparation.”
NIECE – Caregiver
“More time should be taken at the beginning of the palliative care journey to get to know the patient, his wishes and values, his cultural origin. The person needs to be valued, respected, celebrated at his life’s end just as his entry into the world was celebrated by family and friends.”
HOME CARE NURSE
“It is difficult when a loved one is in and out of lucidity. I represented his wishes most often and felt that my voice was not being listened to by the frontline team. It is a very emotional and confusing time and things happen that are never predicted or expected.”
WIFE – Caregiver
“I think more information needs to be provided around what end of life can look like, what the options for care are, what supports are available. How can people make informed choices without a full picture? More education and understanding of wish planning.”
GRANDDAUGHTER – Caregiver
“A plan needs to be in place long before the patient needs palliative care. Sometimes the care never happens because the patient dies sooner than expected or the needs suddenly increase without notice.”
HOME CARE NURSE
Experiences in Sharing and Responding to Advance Care Plans
The CHCA reached out to caregivers, patients and palliative care providers to learn how individual’s advance care plan wishes are influencing care planning and delivery. We asked what is going well and what needs to be improved. We gathered all the feedback and suggestions and created an Experience Map to visually show where improvement is needed for home-based palliative care, so that everyone has their wishes heard, respected and acted upon.
Advance care planning is an ongoing process of making decisions about the care an individual wants to receive if they become unable to speak for themselves. These are very personal decisions that are based on an individual’s values, preferences, and discussions with their loved ones.
An advance care plan tells an individual’s family, their substitute decision-maker, and their health care team what kinds of treatment and care they do or don’t want to receive. This is why it is so important for family members, substitute decision makers and health care team members to understand individual’s care wishes and make sure they are part of the care plan.