Support and Care for Patients with Prolonged and Incurable Cancer
Project Description
New treatments in cancer care can mean more people are now living for years with a prolonged, incurable cancer diagnosis. Living with cancer as an incurable disease can affect many parts of life, including finances, work, managing symptoms, and overall quality of life for patients, their families and their communities.
In ‘Phase 1’ of the project (10/2024-03/2026), we reviewed existing literature to understand how care for people living with prolonged, incurable cancer is organized and how it can be improved. We also engaged directly with patients and caregivers to hear about their most pressing needs and how the Cancer Care Program could serve them better.
What we learned is that there is significant variability in the journeys of people with prolonged, incurable cancer, and many of them ‘cycle in and out’ of different phases:
1) Actively treated (i.e., actively connected and followed by cancer care teams).
2) Between phases of treatments (i.e., loosely connected and intermittently followed by cancer care teams).
3) Primarily managed in community settings, or on oral therapies or watch-and-wait approaches (i.e., not as connected and/or followed by cancer care team).
We also heard that the biggest gap and need in services were two types of information:
- Medical information about their diagnosis, treatment, end of treatment, aftercare, knowing what to expect, what to watch for in terms of drug side effects and late effects.
- Information about available resources and services like the Sunshine Room, exercise programs, support groups, financial help, and support for travel and lodging.
We are now starting Phase 2, which will take about two years.
Phase 2 Goal
The model of care we are developing will be focused on patient navigation and making information easier to access and understand.
It will seek to expand the ‘circle of care’ and make cancer care-specific information accessible to healthcare providers who are not part of the Cancer Care Program, such as family doctors and community pharmacists. Expanding the circle of care means making sure patients and caregivers get the right information at the right time, from the right person, and often enough.
By involving more types of providers, there are more opportunities to share information to improve access and help patients and caregivers better understand their condition, treatment, and available support.
How can you get involved?
- Register to get project updates (Follow project or sign up)
- Join the project team by becoming a Patient Family Advisor (see Volunteer and Paid Roles)
Follow this project page to stay up to date!
If you have questions, please contact:
Julia Kaal, PhD
Phone: 902-483-4261
Email: julia.kaal@nshealth.ca
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Thank you for your interest to join this project as a Patient Family Advisor, sometimes also referred to as patient partners.To learn more about becoming a Patient Family Advisor with this project, you can read this document: Patient Family Advisor Position Description
Our health care system learns from your experience.
Official Project Title: Patient care navigation for people living with prolonged incurable cancer.
Project description: The Nova Scotia Health Cancer Care Program is working on a project focused on people who are living with prolonged, chronic, or advanced, incurable cancer while receiving treatments (often targeted treatments). These patients face unique barriers to care/gaps in care associated with living with an incurable disease, but due to their prolonged survival, they also face issues that may traditionally be related to survivorship.
We are looking to partner with people with lived experience of prolonged incurable cancer to be a patient partner on this project. The role of the patient partner as part of the project team is to ensure that patient-identified priorities are sufficiently considered and addressed in the process of the project.
This is a paid position compensated with an annual honorarium of $400.
Phase 2 of the project started in July 2026 and will take about two years. The requested level of involvement in the project entails participation in team meetings and providing input and feedback on all aspects of the project (total time commitment approx. 1-2 hours a month).
Nova Scotia Health has made a commitment to involve patients and families in this project.
You can fill in this form to express your interest to join the project team.
No special knowledge or skills are needed. The ideal person is someone who can use their experience as a patient or family/caregiver to help shape the care we provide.
You might like this role if:
- You can talk about your experience to help us make improvements.
- You can share honest points of view in a respectful way.
- You are interested to work with a team made of health care providers, researchers and patients and families.
- You have time to attend virtual/online meetings once a month.
Those selected will need to:
- Be a person with personal or family/caregiver experience with a prolonged or incurable cancer.
- Be 18 years of age or older.
- Sign a confidentiality agreement with Nova Scotia Health.
- Declare any potential conflicts of interest.
- Be able to commit to attend meetings typically during business hours.
Once you fill out the form below, someone will reach out to you about next steps!
Please Note: Current NS Health employees, Hospital Foundation members, Community Health Board members, and elected officials are not eligible to apply. NS Health is committed to being a workforce that is free of discrimination, values diversity and is representative, at all job levels, of the people we serve. Those selected to become a Patient Family Advisor on the committee will be paid an annual honorarium.
Please contact Dr. Julia Kaal if you would like to learn more and/or are interested in being part of the project.
Julia Kaal, PhD
Embedded Scientist
Cancer Care Program
Nova Scotia Health
Phone: (902) 483-4261
Email: julia.kaal@nshealth.ca
KJuliaKaal@dal.ca
Pronouns: she/her
