About PaCES

Improving quality of life for Albertans with advanced cancer

Mission: To provide early and ongoing access to coordinated, comprehensive and compassionate palliative care to improve quality of life for Albertans with advanced cancer

The Palliative Care Early and Systematic (PaCES) project is a province-wide team of researchers and knowledge end-users working together to develop and deliver an early and systematic palliative care pathway for advanced colorectal cancer patients and their families in Alberta. We are funded by grants from the Canadian Institutes of Health Research (CIHR) (2017-2021) and Alberta Health (2017-2020). This knowledge translation project is studying methods to adapt and implement evidence-based practices for delivering early and systematic palliative care, at the population level, for patients with advanced colorectal cancer. We aim to improve patient outcomes and health system inefficiencies, by increasing the number of patients receiving earlier palliative care.

What is early palliative care?

Early palliative care may encompass an early palliative approach to care as well as early access to specialist palliative care.

What is a palliative approach to care?

Palliative care is defined by the World Health Organization as "an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patient's illness and in their own bereavement;
  • uses a team approach to address the psychosocial needs of patients and their families, including bereavement counselling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness through symptom management;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications." (World Health Organization, 2007).

When is palliative care defined as "early"?

Early palliative care starts close to the initial diagnosis of advanced cancer; specifically, the "Integration of palliative care into standard oncology care: ASCO clinical practice guideline update" suggests within 8 weeks of diagnosis. Palliative care continues as an added layer of support throughout a disease trajectory, including concurrently with cancer modifying therapy (e.g. chemotherapy), or when patients choose to not have cancer modifying therapy, or when there are no cancer modifying options available. Palliative therapy options may include best supportive care, systemic therapy or radiation therapy.

We define early access to specialist palliative care as comprising at least one of the following: a consultative visit by a specialist palliative care provider, and/or palliative homecare service ≥ 3 months before death. There is strong evidence that early palliative care improves patient quality of life, reduces caregiver distress, and leads to fewer aggressive, costly and inappropriate end of life interventions.

Why is early palliative care important?

Living with worsening cancer creates significant distress for patients and their families, especially when care transitions abruptly from a focus on the life-prolonging therapies delivered by cancer centers to a focus on palliative care at home (supportive care for enhancing quality of life). Patients and their families have told us that to improve these transitions they need: (1) a sense of continuity in their care, (2) opportunities to discuss preferences for future care, and (3) prompt access to specialized palliative care when needed. We know that patients who receive palliative care supports earlier, e.g. while still being treated with chemotherapy, tend to use less aggressive interventions at the end of their lives. This is associated with improved quality of life, reduced family distress and decreased costs for the health system. Currently, our systems struggle to provide early palliative care, with most patients with colorectal cancer only receiving palliative care services two months before death.

What are our specific PaCES program goals?

Objective:

Measure and describe how people living with advanced colorectal cancer currently use palliative care, cancer care, hospital care, and community care services, during the last year of their life.

Why measure healthcare service use?

To develop an evidence-informed palliative care pathway, the PaCES program needs to understand how Alberta’s advanced colorectal cancer patients currently interact with the healthcare system. For example, what are the patterns of use by location, and urban versus rural setting, across the province? This analysis will serve to highlight challenging areas, both geographically and in clinical practice, in meeting the palliative care needs of advanced colorectal cancer patients.

How will we measure healthcare service use?

We will use healthcare administrative databases to determine the percentage of patients who use these four service areas, and how much they use them (i.e. intensity and duration of use).

Who will be studied?

We will study two Alberta-wide patient groups: a) those who died between 2011 and 2015, for one year prior to death, and b) those diagnosed with Stage IV cancer between 2011 and 2015, from the time of presentation until death (or December 2016). The first group will reveal patterns of healthcare use during the last year of life. The second group will additionally focus on those patients with advanced colorectal cancer who have not necessarily died, but have high-risk of complex hospital based care needs.

Objective:

Explore the relationships between family physicians and oncologists who share care for oncology patients.

Why is it important to explore these relationships?

The experiences and relationships between family physicians and oncologists are integral to patient care. It is important to not only identify and understand the barriers faced by these professionals but to also understand and build on their strengths and shared visions of palliative care. The information gathered for this objective will be used to inform the early and systematic palliative care pathway by identifying gaps and building on components that work well.

How will this information be gathered?

Information will be gathered from family physicians and oncologists in the following two ways.

  1. Interviews - Appreciative inquiry focused interviews will be used to explore the current clinical landscape regarding the provision of palliative care in family medicine. The focus will be on gathering the perspectives and hearing the voices of family physicians to inform system improvements and improve patient care. 

  2. Online survey - A survey will be used to determine the nature and frequency of barriers and facilitators amongst oncology clinicians to providing palliative care concurrent with cancer therapies.

Objective:

Understand how to best provide early palliative care to advanced cancer patients and their families living in rural Alberta. 

Why assess the perspectives of patients and caregivers of patients with advanced cancer living in rural Alberta? 

The palliative care needs of rural Albertans are unique, and require special attention. This study aims to get input from advanced cancer patients and their caregivers about early palliative care delivery in rural Alberta. Findings from this study will be used to inform, develop, and deliver a systematic palliative care pathway for advanced cancer patients and their families. 

How will barriers and facilitators for patients and caregivers of patients with advanced cancer living in rural Alberta be identified?

Input from rural-based patients and families will be sought through qualitative interviews or focus groups in order to explore:

  1. How to deliver palliative care services alongside cancer treatments,
  2. Perceptions of palliative care being delivered early in cancer treatment, and
  3. How to transition from cancer treatment to palliative care‐focused care only near the end-of-life.

Objective:

Create an oncology-integrated early palliative care clinical practice guideline and pathway for advanced colorectal cancer patients in Alberta. 

What are we doing?

Starting in Calgary, we are creating an early palliative care clinical practice guideline and pathway for Albertans living with advanced colorectal cancer that will help patients/families and their healthcare teams access appropriate services and resources. This will:

  • Help clinicians routinely identify patients at the right time;
  • Provide effective language to describe what palliative care offers e.g. provider scripts and patient handouts;
  • Improve communication for shared care between oncology, family physicians and palliative care providers e.g. using templated letters;
  • Provide easy to use tips around symptom management and local resources;
  • Provide early access to a palliative care nurse to support patients.

Current state process mapping was conducted to identify areas for improvement and opportunities for change. This exercise, in concert with a systematic review of the literature and review of existing American Society of Clinical Oncology (ASCO) and other guidelines, informed the development of the new clinical practice guideline: "Integrating an Early Palliative Approach into Advanced Colorectal Cancer Care". This guideline and pathway provides a new standard of care for screening, identifying, and managing unmet needs of patients and their families/caregivers who may benefit from an early palliative approach to care. A number of resources and educational materials for patients and professionals have been developed to support the new pathway. The guideline is hosted online by CancerControl Alberta's Guideline Resource Unit (GURU).

Why create a pathway?

Pathways are created with evidence-based best practices and when implemented, educate care providers, create standardization, reduce variation in practice and optimize quality of care. As per the Alberta Palliative and End of Life Care (PEOLC) Provincial Framework, all Albertans should have equitable and timely access to high quality interdisciplinary palliative and end of life care services regardless of life-limiting illness or geography. The PaCES guideline and pathway contain standardized provincial content that can be applied to all areas, across both rural and urban communities. We want all people in Alberta with a life-limiting advanced cancer diagnosis (colorectal cancer to start) to have access to high quality supportive care that can improve quality of life. Our goal is to increase contact with a palliative care provider earlier along the care continuum. We also aim to improve continuity of care between the cancer centres and community care providers.

Who is this pathway for?

Advanced colorectal cancer patients, their families and clinicians will be the first group served by the pathway. Pathway implementation will be piloted in Calgary, beginning January 2019. We will evaluate implementation of the pathway throughout 2019-2020. Learnings from implementation in Calgary will be used to scale and spread pathway implementation across Alberta. Our long-term goal is to have a pathway that will work for all tumour groups across Alberta.

What are our timelines?

2017-18          Pathway development
2019               Pathway implementation in Calgary
2018-2020      Data collection in Calgary as implementation site, with Edmonton as control site 
2021+             Scale and spread across Alberta and to the care of patients with other cancer types

Objective:

Our observational study "Living with Colorectal Cancer: Patient and Caregiver Experience" will gather outcome and experience data of people living with advanced colorectal cancer and their caregivers. The primary objective is to measure how quality of life in this population changes over time (before, during, and after the early palliative care pathway becomes the new standard of care in Alberta). Patient and caregiver data collected continuously over this time will monitor how changes in cancer care delivery impact patients, and will provide periodic feedback to guide further quality improvement.

When will this study take place? 

For three years, all advanced colorectal cancer patients at Cross Cancer Institute (Edmonton), Tom Baker Cancer Centre (Calgary) and Holy Cross Centre (Calgary) will be screened and invited by their oncology healthcare providers to join the patient outcome and experience data collection. We began recruiting and enrolling participants in January 2018. Enrolled advanced colorectal cancer patients and caregivers will complete Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) from enrollment through December 2020. We will then compare measures following system changes in Calgary while observing the same measures over the same time periods in Edmonton.

Who will be recruited?  

We will recruit all advanced colorectal cancer patients who meet inclusion/exclusion criteria:

  • >18 years of age with diagnosis of advanced colorectal cancer* and one or more of the following:
  • Failed first line of chemotherapy (disease progression on imaging);
  • Unable to receive first line chemotherapy;
  • Surprise question: healthcare provider would not be surprised if patient died in the next 12 months;
  • High symptom need (any score on ESAS-r ≥ 7)

*advanced colorectal cancer is defined as primary or metastatic cancer that is unlikely to be cured, controlled, or put into remission with treatment.

Caregivers of patients who meet inclusion/exclusion criteria may be invited by the patient to participate.

For more info e-mail paces@ucalgary.ca or visit clinicaltrials.gov.

Qualitative perspectives on palliative care before and after pathway introduction

Sadia Ahmed, Master of Science candidate in the Department of Community Health Sciences, University of Calgary, has partnered with the PaCES program to conduct a companion study “Living with Colorectal Cancer: Patient and Caregiver Experiences and Perceptions of Palliative Care”. This study involves qualitative interviews with patients and caregivers to gather their perspectives on palliative care before and after implementation of the early palliative care pathway. Aspects of patient-centred care identified by patients and their caregivers will inform the refinement of the pathway for advanced cancer care.