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Evidence to Improve Care

Palliative Care

Care for Adults With a Progressive, Life-Limiting Illness

Click below to see a list of brief quality statements and scroll down for more information.


Quality standards are sets of concise statements designed to help health care professionals easily and quickly know what care to provide, based on the best evidence.

See below for the quality statements and click for more detail.

Quality Statement 1: Identification and Assessment of Needs
People with a progressive, life-limiting illness have their palliative care needs identified early through a comprehensive and holistic assessment.


Quality Statement 2: Timely Access to Palliative Care Support
People with identified palliative care needs have access to palliative care support 24 hours a day, 7 days a week.


Quality Statement 3: Advance Care Planning—Substitute Decision-Maker
People with a progressive, life-limiting illness know who their future substitute decision-maker is. They engage in ongoing communication with their substitute decision-maker about their wishes, values, and beliefs, so that the substitute decision-maker is empowered to participate in the health care consent process if required.


Quality Statement 4: Goals of Care Discussions and Consent
People with identified palliative care needs or their substitute decision-makers have discussions with their interdisciplinary health care team about their goals of care to help inform their health care decisions. These values-based discussions focus on ensuring an accurate understanding of both the illness and treatment options so the person or their substitute decision-maker has the information they need to give or refuse consent to treatment.


Quality Statement 5: Individualized, Person-Centred Care Plan
People with identified palliative care needs collaborate with their primary care provider and other health care professionals to develop an individualized, person-centred care plan that is reviewed and updated regularly.


Quality Statement 6: Management of Pain and Other Symptoms
People with identified palliative care needs have their pain and other symptoms managed effectively, in a timely manner.


Quality Statement 7: Psychosocial Aspects of Care
People with identified palliative care needs receive timely psychosocial support to address their mental, emotional, social, cultural, and spiritual needs.


Quality Statement 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.


Quality Statement 9: Caregiver Support
Families and caregivers of people with identified palliative care needs are offered ongoing assessment of their needs, and are given access to resources, respite care, and grief and bereavement support, consistent with their preferences.


Quality Statement 10: Transitions in Care
People with identified palliative care needs experience seamless transitions in care that are coordinated effectively among settings and health care providers.


Quality Statement 11: Setting of Care and Place of Death
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.


Quality Statement 12: Interdisciplinary Team-Based Care
People with identified palliative care needs receive integrated care from an interdisciplinary team, which includes volunteers.


Quality Statement 13: Education for Health Care Providers and Volunteers
People receive palliative care from health care providers and volunteers who possess the appropriate knowledge and skills to deliver high-quality palliative care.


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Caregiver Support

Families and caregivers of people with identified palliative care needs are offered ongoing assessment of their needs, and are given access to resources, respite care, and grief and bereavement support, consistent with their preferences.


Families and caregivers of people with a progressive, life-limiting illness have needs across multiple domains. Families and caregivers benefit from support as they manage medical information, learn how to provide care, and develop coping strategies to deal with medical care, personal care, psychological care, loss, grief, and bereavement. General advice and support, along with education to improve coping and communication skills for caregivers, are associated with decreased distress.

For Patients, Families, and Caregivers

Caregiving can be a rewarding experience, but it can also be stressful. If you are a caregiver, a member of the care team should assess you to see how you are coping and help you get the supports you need. Supports can include training, support groups, home care, and temporary respite care for the person you are caring for. Respite care can give you a break from the caregiving routine and give you time to take care of yourself. 


For Clinicians

Offer assessment and appropriate support to the family and caregivers of people with identified palliative care needs.


For Health Services

Ensure that systems are in place to offer assessment and appropriate support to the family and caregivers of people with identified palliative care needs.

Process Indicators

Percentage of people with identified palliative care needs who have a caregiver needs assessment documented in their medical record

  • Denominator: total number of people with identified palliative care needs who have a caregiver

  • Numerator: number of people in the denominator who have a caregiver needs assessment in their medical record

  • Data source: local data collection

 
Percentage of caregivers of people who receive palliative care who state that they and their family members receive as much help and support as they need

  • Denominator: total number of caregivers of people who receive palliative care

  • Numerator: number of people in the denominator who state that they and their family members receive as much help and support as they need

  • Data source: local data collection

  • Similar question available in the CaregiverVoice Survey: “Overall, do you feel that you and your family got as much help and support from homecare services as you needed?” (Response options: “Yes, we got as much support as we needed; No, we did not get as much support as we needed though we tried to get more; No, we did not get as much support as we needed, but we did not ask for more”)

Percentage of caregivers who state that, after the patient’s death, they talked to someone from health and supportive services or bereavement services about their feelings regarding the illness and death

  • Denominator: total number of caregivers of people who died of a progressive, life-limiting illness.

  • Numerator: number of people in the denominator who state that, after the patient’s death, they talked to someone from health and supportive services or bereavement services about their feelings regarding the illness and death  

  • Data source: local data collection

  • Similar question available in the CaregiverVoice Survey: “Since he/she died, have you talked to anyone from health and supportive services, or from a bereavement service, about your feelings about his/her illness and 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”)

Family

Family consists of those closest to a person in terms of knowledge, care, and affection, and may include biological family, family through marriage, or family of choice and friends. The person with the progressive, life-limiting illness defines their family and who will be involved in their care.

Caregiver

A caregiver is an unpaid person who provides care and support in a nonprofessional capacity, such as a family member, a friend, or anyone else identified by the person with a progressive, life-limiting illness. Other terms commonly used to describe this role include care partner, informal caregiver, family caregiver, carer, or primary caregiver.

Caregiver assessment

A caregiver assessment includes an examination of physical, psychological, social, spiritual, linguistic, cultural, and environmental considerations. The assessment may relate to the caregiver’s needs and preferences, as well as associated treatment, care, and support. Use of validated tools may help clinicians explore the caregiver’s values and preferences, well-being, burden, skills and abilities, and resources.

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