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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.


Summary

As a key partner in the Ontario Palliative Care Network, we have produced a quality standard for palliative care.

This quality standard addresses palliative care for people who are living with a serious, life-limiting illness, and for their family and caregivers. The goal of palliative care is to relieve pain and suffering, and to improve a person’s quality of life. This quality standard focuses on care for people in all settings, including home and community, hospice, hospital, and long-term care.


This quality standard addresses care for adults with a progressive, life-limiting illness, and for their family and caregivers. It focuses on palliative care in all health settings, for all health disciplines, and in all health sectors. It includes information about general palliative care that applies to all health conditions. Palliative care can benefit individuals and their caregivers as early as at the time of diagnosis of a progressive, life-limiting illness through the end of life and bereavement.

Condition-specific palliative care may be addressed in other quality standards. Although this quality standard includes information that could apply to infants, children, and youth, a separate palliative care quality standard is being considered for these populations.

This document does not address medical assistance in dying. People who choose medical assistance in dying should receive or continue to receive high-quality palliative care. Health care professionals are expected to manage all requests for medical assistance in dying in accordance with the expectations set out by their regulatory colleges. Health care professionals should refer to their regulatory colleges for more information and guidance on medical assistance in dying.

In this quality standard, “health care professionals” refers to regulated professionals, such as registered nurses, nurse practitioners, pharmacists, physicians, physiotherapists, psychologists, occupational therapists, social workers, and speech-language pathologists. We use the term “health care providers” when we are also including people in unregulated professions, such as personal support workers, behavioural support workers, and administrative staff. We use the term “interdisciplinary health care team”, when we refer to all individuals who are involved in providing care (including health care professionals and health care providers).

Palliative care (also known as hospice palliative care) refers to the relief of suffering and improvement of the quality of living and dying, using a holistic approach. Palliative care addresses people’s physical, psychological, social, spiritual, and practical needs, as well as their associated expectations, hopes, and fears. It helps people with a progressive, life-limiting illness and their family prepare for and manage end-of-life choices, the process of dying, and coping with loss and grief. Palliative care does not focus just on end-of-life care; a palliative approach to care can begin upon the diagnosis of a life-limiting illness. People can receive palliative care while actively receiving treatment for their disease.

Despite the clear benefits of palliative care, there are many gaps in its delivery in Ontario, including access to palliative care services. Of the about 94,500 people who died in Ontario between April 2015 and March 2016, about 56,000 (59%) received palliative care services on at least one occasion in their last 12 months of life.

Among people who died in Ontario in 2015/2016, about a quarter (24.1%) received physician home visits, and about one-third (27.5%) received palliative-specific home care in their last month of life. Receiving palliative home care has been associated with a 50% reduction in the likelihood of dying in hospital. Furthermore, more than half (54.8%) of people who died in Ontario had unplanned visits to the emergency department in their last month of life.

Whether or not people are able to die in the place they choose also reveals gaps in the provision of palliative care across the province. In surveys of patients and caregivers, most say they would prefer to die at home. And yet, of the about 94,500 people who died in 2015/2016, 53.6% died in hospital. Increased access to palliative-specific home care and home visits from physicians could reduce the number of people who die in hospital.

Equity is also an issue in the delivery of palliative care. In 2015/2016, patients living in poorer neighbourhoods were less likely to receive palliative home care services in their last month of life (22.7%) than patients in the richest neighbourhoods (32.2%).

Income is one equity issue, but there is also a need for culturally sensitive services to meet the diverse needs of all Ontarians. This includes access to culturally appropriate and safe palliative care across urban, rural, and remote communities, and includes various cultural, faith, and linguistic groups, and vulnerable populations.

The 13 quality statements that make up this quality standard are based on the best available evidence and guided by expert consensus from health care providers and people with lived experience. The statements provide guidance for areas identified by the Ontario Palliative Care Network and Health Quality Ontario’s Palliative Care Quality Standard Working Group as having high potential for improvement in the way palliative care is currently provided. Each statement has accompanying indicators to help health care providers and organizations measure the quality of the care they provide, and includes details on how successful delivery can improve palliative care and quality of life for people living with a progressive, life-limiting illness, their family, their caregivers, health care providers, and health services at large.

This quality standard is underpinned by the principles of respect, beneficence, autonomy, justice, and equity.

People should receive palliative care services that are respectful of their rights and dignity. Person-centred care—compassionate care that respects people’s wishes, beliefs, and values by promoting autonomy, dignity, and inclusion in shared decision-making as appropriate—is fundamental to an ethics-based palliative approach to care.

A high-quality health system is one that provides good access, experience, and outcomes for everyone in Ontario, no matter where they live, what they have, or who they are.

People who have a progressive, life-limiting illness should be offered services that are respectful of their gender, sexual orientation, socioeconomic status, housing, age, background (including self-identified cultural, linguistic, ethnic, and religious backgrounds), and disability. Equitable access in the health system also includes access to culturally safe care. Language, a basic tool for communication, is an essential part of safety of care and needs to be considered throughout a person’s health care journey. For example, in predominantly Anglophone settings, services should be actively offered in French and other languages.

Care providers should be aware of the historical context of the lives of Canada’s Indigenous peoples and be sensitive to the impacts of intergenerational trauma and the physical, mental, emotional, and social harms experienced by Indigenous people, families, and communities. This quality standard uses existing clinical practice guideline sources developed by non-Indigenous groups, which may not include culturally relevant care or acknowledge traditional Indigenous beliefs and practices. Therefore, it is important for care to be adapted to ensure that it is culturally appropriate and safe for First Nations, Inuit, and Métis peoples in Ontario.

Health Quality Ontario has worked with the Ontario Palliative Care Network to ensure that selected measures for this quality standard are aligned with provincial measurement initiatives.

The Palliative Care Quality Standard Working Group identified a small number of overarching goals for this quality standard. These have been mapped to indicators that may be used to assess quality of care provincially and locally.


How Success Can Be Measured Provincially

  • Percentage of people who receive care in their last 12 months, 3 months, and 1 month of life:

    • Home care services (any home care and palliative-specific home care)

    • Health care provider home visits (currently only physician home visits are measurable)

    • Hospice care (currently not measurable)

  • Percentage of people who had 1 or more unplanned emergency department visits in their last 12 months, 3 months, and 1 month of life

  • Percentage of deaths that occurred in:

    • Hospitals

      • In-patient care

      • Emergency department

      • Complex continuing care

      • Palliative care beds (currently not measurable)

    • Long-term care homes

    • The community (may include home, hospice residence, retirement home, or assisted-living home)

  • Percentage of people who receive palliative care (or their caregivers) who rated overall care received in their last 12 months, 3 months, and 1 month of life as excellent

    • Example of a question from the CaregiverVoice Survey: “Overall, and taking all services in all settings into account, how would you rate his/her care in the last 3 months of life?” (Response options: “Excellent, Very good, Fair, Good, Don’t know”)

    • Note: as of 2017, 25 hospice residences in Ontario have adopted the CaregiverVoice Survey, and about 11 of 14 local health integration networks have adopted this survey for patients as end-of-life home care clients.


How Success Can Be Measured Locally

You may want to assess the quality of palliative care you provide to people. You may also want to monitor your own quality improvement efforts. It may be possible to do this using your own clinical records to measure the indicators above, or you might need to collect additional data.

In addition, each quality statement within this standard is accompanied by one or more indicators. These indicators are intended to guide the measurement of quality improvement efforts related to the implementation of the quality statement.

In many ways, I was lucky because my father, who was diagnosed with advanced Congestive Heart Failure, was able to participate in a palliative care pilot program offered in conjunction with a heart function clinic that facilitated early palliative care supports and access to a multidisciplinary team of health care professionals. This helped us greatly in being able to navigate the healthcare system and to find the services we needed in order to help my father stay at home until his last day. From my experience, by virtue of being in the right circumstances, the needed supports can be good – however, I was surprised at how different the care is depending on where one is being followed medically and the disparity in what is available across regions of Ontario. It shouldn’t matter where you live - there should be core services that anyone who could benefit from a palliative approach to care is able to access early to support their quality of life.

It’s daunting when you first start out, you don’t know how to start, what to expect and how to access services. My experience as a caregiver helped me realize that there is more that we can do so that everyone can have a supportive journey using a palliative approach to care. While it is a difficult time, it certainly doesn’t have to be as awful as it currently can be for some people.

The Palliative Care Quality Standard is valuable because it sets a benchmark to what the healthcare system should be striving for and working towards. The standard sets out the expectations around using a palliative approach to care, and also brings some attention to key issues. I think it will also help the healthcare system with long-term planning of services, particularly for a growing aging population. Overall, as we begin to meet the standards, palliative care will become more equitable across the province.

- Brenda Albuquerque-Boutilier, Palliative Care Quality Standard Working Group member

There is a lot of variation in practice, which leads to inequitable access to palliative care services. Geographic barriers also contribute to the variation in accessing palliative care services and supports.

The Palliative Care Quality Standard provides a vision to work towards so that the entire healthcare system is providing excellent care. For a specialized set of services such as the provision of palliative care, standards are valuable and helps to ensure that a high quality standard of care is available overall, while also providing appropriate care at an individualized level. Importantly, the quality standard reflects care based on the whole person model, where the interconnection of spirit-mind-body is recognized. This allows for the individualization of care based on the quality standard, while also meeting the cultural, ethnic, or geographic needs of patients. Healthcare organizations and providers are able to develop tailored regional programming to meet the needs of patients and families.

- Amy Montour, Palliative Care Quality Standard Working Group member

This quality standard was completed in April 2018.

For more information, contact QualityStandards@HQOntario.ca.

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