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People with identified palliative care needs, their substitute decision-maker, their family, and their caregivers have ongoing discussions with their health care professionals about their preferred setting of care and place of death.
A person’s preferences for where to receive palliative care and where to die depend on an interplay of factors associated with the illness, the individual, and the environment. A person’s preferred setting of care and place of death should be part of a care plan (see Quality Statement 5) that reflects the person’s wishes, goals, and needs. Different care settings and places of death are considered, including the person’s home (usual place of residence), a long-term care home, a hospice residence, or an in-patient palliative care unit. Safety is a key consideration when discussing the setting of care and place of death. A number of factors increase the feasibility and likelihood of a home death, including the availability of interdisciplinary home palliative care, early referral to palliative care, patient preferences, having a caregiver, and the caregiver’s ability to cope. Discussions about the setting of care and place of death should be ongoing; a person’s choice may change depending on their status.
Your care team should talk with you about where you would like to be cared for throughout your illness and at end of life (for example, at home, in a home-like environment called a hospice residence, in a hospital, or in a long-term care home). They should give you information about the care available in different locations to help you make the best choices for you, your family, and your caregivers. Your wishes may change over time, so you should have regular opportunities to discuss them. You may want to talk about:
Your preferences
How your disease affects your ability to perform normal daily activities
Whether you are living with someone who can help you
Whether other help you may need is available
Provide information about options for the setting of care and place of death to people with identified palliative care needs, their family, and their caregivers. This information should include all of the factors outlined in the definitions.
Ensure that resources and tools are available to support discussions between health care professionals and people with identified palliative care needs about their preferred setting of care and place of death.
Percentage of people with identified palliative care needs who have documentation of their preferred setting of care and place of death in their medical record
Denominator: total number of people with identified palliative care needs
Numerator: number of people in the denominator who have documentation of their preferred setting of care and place of death in their medical record
Data source: local data collection
Similar questions available in the CaregiverVoice survey:
“What was his/her last known preferred place to die?” (Response options: “At home; In a hospice; In a hospital; In a long-term care home; In a retirement home; He/she said that he/she did not mind where he/she died; Anywhere except at home; Anywhere except in hospital; Don’t know”)
“Did the health care providers have a record of this preference of where he/she wanted to die?” (Response options: “Yes; No; Not sure”)
Note: consider measuring the preferred setting of care and preferred place of death separately
Availability of a survey to capture caregiver experience in all care settings (e.g., CaregiverVoice Survey)
Percentage of people with identified palliative care needs whose medical records indicate that they died in their preferred place of death
Denominator: total number of people with identified palliative care needs who had their preferred place of death recorded in their care plan
Numerator: number of people in the denominator who died in their preferred place of death
Data source: local data collection (similar indicator is currently measured in the Client Health and Related Information System for palliative home care clients)
Percentage of caregivers of people who died of a progressive, life-limiting illness who think that the person they cared for died in the right place
Denominator: total number of caregivers of people who died of a progressive, life-limiting illness
Numerator: number of people in the denominator who think that the person they cared for died in the right place
Similar question available in the CaregiverVoice Survey: “Do you think that he/she died in the right place?” (Response options: “Yes; No; Not sure”)
The setting of care is the place where palliative care is provided. Care settings may include the person’s home, a hospice residence or in-patient palliative care unit, a long-term care home, a correctional facility, or for a person who is homeless or vulnerably housed, a shelter or the street.
Discussions with health care professionals about the setting of care and place of death should include the following:
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