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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.


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.


Palliative care focuses on the person and their family, and on enhancing their quality of life throughout their illness, not just at the end of life. The initiation of palliative care should not be delayed for people with a progressive, life-limiting illness if they have physical, psychological, social, or spiritual needs during treatment.

General considerations for identifying people who would benefit from palliative care include the following: diagnosis of a progressive, life-limiting illness; disease progression; functional decline; presence of pain or other symptoms; or other effects on their full range of needs. A comprehensive, holistic assessment allows health care professionals to determine the physical, psychological, social, linguistic, cultural, legal, ethical, and spiritual needs of people with a progressive, life-limiting illness and their family or caregivers, and the services required to meet those needs. The initiation of palliative care is not determined by prognosis; it can begin as early as the time of diagnosis of a progressive, life-limiting illness, and it can be initiated during treatment.

Assessment can be conducted by any knowledgeable and skilled member of the interdisciplinary health care team (see Quality Statement 4). After the initial assessment, palliative care needs should be reassessed regularly, because they can change over time.

For Patients, Families, and Caregivers

Your care team should assess what palliative care or supports you need:

  • They should ask questions about your physical and mental health, your support system, and any other needs you feel you have, to understand how best to help you

  • They should assess your pain and other health concerns, and manage them quickly and effectively

  • They should assess your mental, emotional, social, cultural, and spiritual well-being

  • They should ask your family members and caregivers about the help they need


For Clinicians

Assess people with a progressive, life-limiting illness to determine whether they would benefit from palliative care. Perform and document a comprehensive, holistic assessment that considers the individual’s diagnosis; disease progression; functional decline; presence of pain or other symptoms; and other effects on their full range of needs. Assessment should be repeated regularly.


For Health Services

Ensure that systems, processes, and resources are in place in all health settings for clinicians to identify and assess people’s palliative care needs. This includes access to screening or assessment tools and timely access to palliative care.

Process Indicators

Percentage of people with identified palliative care needs who have a documented assessment of their palliative care needs including physical, psychological, social, linguistic, cultural, legal, ethical, spiritual, and other needs

  • Denominator: total number of people with identified palliative care needs

  • Numerator: number of people in the denominator who have a documented assessment of their palliative care needs including physical, psychological, social, linguistic, cultural, legal, ethical, spiritual, and other needs

  • Data source: local data collection

  • Note: consider measuring separately by each palliative care need and/or grouping them together as an overall measure


Number of days between receiving first palliative care service and death

  • Calculation: can be measured as mean, median, or distribution

  • Data sources: National Ambulatory Care Reporting System (NACRS), Discharge Abstract Database (DAD), Continuing Care Reporting System (CCRS), Home Care Database (HCD), Ontario Health Insurance Plan (OHIP), Registered Persons Database (RPDB)


Structural Indicator

Evidence of locally adopted tools to:

  • Identify people in need of palliative care

  • Assess their needs

  • Data source: local data collection

Progressive, life-limiting illness

A progressive, life-limiting illness is one that affects a person’s health and quality of life, that gets worse over time, and that can lead to death in the near future. Examples of illnesses that require a palliative approach to care include cancer, Alzheimer disease and other types of dementia, heart failure, chronic obstructive pulmonary disease, kidney disease, and cirrhosis of the liver. The frail elderly can also benefit from a palliative approach to care.


Palliative care needs

Palliative care needs can stem from any part of a person’s full range of needs (physical, psychological, social, linguistic, cultural, legal, ethical, or spiritual) at any stage of illness. The goal of palliative care is to help people achieve their best possible quality of life in the face of a progressive, life-limiting illness.


Identified early

Identifying the need for palliative care can occur as early as the time of diagnosis of a progressive, life-limiting illness. Palliative care is not limited to the end-of-life phase, and it is not restricted to specific diseases or conditions.


Comprehensive and holistic assessment

This includes a full examination of the domains of care associated with illness and bereavement, including:

  • Disease management

  • Physical

  • Psychological

  • Social

  • Cultural

  • Legal

  • Ethical

  • Spiritual

  • Practical

  • End-of-life

  • Loss, grief

Examples of validated tools used for assessment may include the Edmonton Symptom Assessment System, and the Palliative Performance Scale. The comprehensive and holistic assessment considers a person’s socio-cultural context and initial assessments should include inquiry about a person’s mother tongue and language of preference.

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