Palliative Care Resources for Patients & Caregivers

What is Palliative Care? 

Palliative care is a holistic approach to care for people with a life-limiting illness, focused on relieving suffering and improving quality of life by addressing physical, emotional, psychological, social, and spiritual wellbeing. A palliative approach to care is not just for people who are in their last days and weeks of life but can improve wellbeing when provided alongside treatment. 

Palliative care might look different for different people at different stages of illness, but it almost always takes a team. Palliative care can be provided by most health care teams but also by palliative care specialists. Learn more about palliative care at these sites:

• Government of Canada
• Canadian Virtual Hospice, plus 10 Myths

Where Do I Start?

Access: Accessing the healthcare system can be confusing. Connecting with Ontario Health atHome (formerly Home and Community Care Support Services) is the first step to help you and your support people get the right care to meet your needs. A care coordinator can be your central contact to help you navigate care and information across settings.

Referrals: Anyone can make a referral, simply call 310-2222 (no area code required) to be connected to your local office. For more information on palliative care services offered, visit the Ontario Health atHome website.

Navigating a serious illness: Consider this resource from The Waiting Room Revolution.

Where Can I Access Palliative Care Services in KFL&A?

Palliative care can be provided in many settings, including at home, in hospitals, hospice residences, long-term care homes, retirement homes, shelters, group homes, and outpatient clinics.

• Speak with your primary care provider. If you do not have a doctor or nurse practitioner, learn more about registering with Health Care Connect.
• Connect with your Ontario Health atHome Care Coordinator to discuss your palliative care needs and any additional services or community referrals that could support you and your caregiver. Call 310-2222 (no area code required).
• If you are a patient of the Cancer Centre of Southeastern Ontario or Belleville General Hospital Cancer Clinic, you can ask your care team for a referral to the outpatient Palliative Care Clinic run by palliative care specialist doctors and nurses. Other supportive care services at the Cancer Centre may include social workers and dietitians.
• If you or a loved one is admitted to hospital, ask about available palliative care services such as a consultation with a palliative care doctor and/or nurse.

As life-limiting illnesses progress, it becomes more difficult to get out to appointments. Speak to your primary care provider or care coordinator about end-of-life care options that may include a physician or nurse practitioner visiting you at home for end-of-life care. Other options for care during the last weeks and days of life include:

Hospitals provide palliative care to patients admitted at end of life

• Providence Care Hospital Palliative Care Unit
  
• Kingston Health Sciences Centre (Kingston General Hospital site)
• Lennox and Addington County General Hospital

Hospice Residences across the Eastern Ontario (admission through Ontario Health atHome):

• Hospice Quinte (Belleville) 
• Heart of Hastings Hospice (Madoc)
• Hospice North Hastings (Bancroft)
• Hospice Renfrew
• Hospice Care Ottawa
• Madawaska Valley Hospice (Barry's Bay)
• Providence Care Hospice - AB Smith Homestead House  

Advance Care Planning – helping people prepare for future health care decisions

• Advance Care Planning Ontario
• Advance Care Planning Canada
  • CPR Decision Aid for Patients and Their Families 
• Ministry of the Attorney General of Ontario - Make a Power of Attorney 

Managing Symptoms

• Cancer Care Ontario Symptom Management Guidelines 
• Canadian Virtual Hospice: Symptoms & Health Concerns and Symptom Diary

Caregiver Supports (alphabetical)

• A Caregiver’s Guide to End-of-Life Care (201 pages, 2019,Saint Lazarus Canada & Canadian Hospice Palliative Care Association)
• Alzheimer Society – KFL&A Counties
• Care Channel by Elizz – free resources for family and community caregivers
• Champlain Hospice Palliative Care Program – Caregivers & Families
• Compassionate Communities Kingston
• Hospice Lennox & Addington
• Ontario Caregiver Organization
• Providence Care Hospice
• Southern Frontenac Community Services
• The Waiting Room Revolution
  

Compassionate Care Benefits from Employment Insurance

• Government of Canada: Learn about EI compassionate care benefits
  

Expected Death at Home

With support from your healthcare team, it is possible to plan for an expected home death. Ask your physician or nurse practitioner if this could be an option in your situation. 

• Contact Ontario Health atHome to have a care coordinator and/or visiting nurse work with you and your caregiver to create a care plan that will allow for natural, expected death to occur if this aligns with your goals.
• A Yellow Folder will be kept in your home that outlines a plan what to expect and what your caregiver needs to do. It is not necessary to call 911 if this plan is in place. 

Medical Assistance in Dying (MAiD) Resources

Palliative Care and MAiD are distinct types of care but can work together depending on your goals regarding end-of-life. Palliative care is there to support you regardless of your end-of-life choices, including MAiD. For more information about MAiD, visit these sites:

• Government of Ontario (includes care coordination contact information)
• Bridge C-14

Final Weeks and Days

• What to Expect (Canadian Virtual Hospice)

What to Do When Someone Dies

• Government of Ontario
• Government of Canada

Grief and Bereavement Supports

• Grief and Bereavement Resources in KFL&A - an extensive list of local, non-profit organizations, online grief supports, including resources for children and indigenous peoples, and more

 

To learn about the FLA OHT Palliative Care Partnerships, visit their Priority Work page.