Palliative Care

Care for Adults With a Serious Illness

Resources Quality Statements Working Group About

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.

Background

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.

What This Quality Statement Means

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.

Quality Indicators

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”)

Definitions Used Within This Quality Statement

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.

Evidence to Improve Care