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Changes in Breathing in Advanced Illness and at End-of-Life

Wed, 14 Oct 2026 19:02:16 GMT

Breathing changes can be scary to watch, but they are very normal in advanced disease. Often the patient feels no distress, even when family does.

To ease shortness of breath: raise the head of the bed, use a fan to blow cool air across the face, keep the room calm, try pursed lip breathing, do oral care, open a window, loosen clothing, use a cold cloth on the forehead, and check oxygen tubing for kinks. If your loved one can't tell you, watch for restlessness, grimacing, tugging at the collar, or visible pulling of muscles at the neck or ribs.

If oxygen is used: avoid oil or petroleum products near the nose or lips, ask about humidification, never allow smoking nearby, and watch for skin irritation around the ears.

At end of life, breathing may become irregular or shallow with long pauses. A "rattle" sound from pooled secretions is common and usually isn't distressing to the patient. Oral care and repositioning help, and some people benefit from medication, so talk to your health care team.

Palliative Approach to Care vs. Palliative Care Specialist

Wed, 14 Oct 2026 19:01:42 GMT

These two terms get mixed up a lot. Here's the difference.

A palliative care specialist (such as a palliative physician, nurse or social worker) has formal training and certification in symptom control, complex decision making and end-of-life care. They focus on clinical expertise and managing complex cases.

A palliative approach is a broad, team-based way of caring for people with a serious, life-limiting illness, aimed at improving quality of life. It can be provided by any health care provider in any setting, including hospital, hospice, clinic, home, long term care and retirement homes. It offers holistic physical, psychological, social and spiritual support to patient and family.

A palliative approach can run alongside curative or disease modifying treatment. A specialist may be involved at a point in time, sharing care with your core team, or in complex situations act as primary provider. Learn more at ppsmcneo.ca.

Communication in Advanced Illness and End-of-Life

Wed, 14 Oct 2026 19:00:49 GMT

Talking with someone who is very ill can feel hard. This resource shares what changes and what helps.

Illness can affect the brain's ability to process language and the muscles used to speak. You may hear the terms aphasia (trouble speaking, writing or understanding words) and dysarthria (slurred, slow or quiet speech from muscle weakness). Near the end of life, people may sleep more and speak less, and eventually rely on gestures, eye contact and expression.

Tips for caregivers: be patient, avoid interrupting, double-check understanding, reduce distractions, keep eye contact, speak slowly with simple words, offer simple choices, and keep your voice low. Approach slowly and from the front.

People often keep the ability to hear and feel long after they lose speech. Gentle touch, saying who you are, and speaking normally offer comfort. Never underestimate the power of your words and touch.

Palliative Pain and Symptom Management Consultation (PPSMC)

Wed, 14 Oct 2026 19:00:04 GMT

Ontario's PPSMCs are nurses with advanced palliative care knowledge who educate and advise service providers on best practice in palliative care. The program is fully funded by Ontario Health.

Their mandate: consultation, coordination, education and skill development, research and evaluation, and collaboration and facilitation. That includes mentoring providers, connecting them to resources, consulting on specific cases, and supporting system improvement through committees.

Who can be referred: anyone with a progressive, incurable illness whose symptoms aren't well controlled by their core team. Appointments are in person, by phone or virtual. We review symptoms and advance care planning, get to know the person and their goals, may do joint visits, and then work with your health care team afterwards. A referral form is available by QR code in the PDF.

Elimination Changes: Bowel and Bladder

Wed, 14 Oct 2026 18:59:11 GMT

Bladder and bowel changes often happen in advanced disease and near the end of life. This resource covers what to expect and how to help.

Urinary changes can include incontinence, night time urination, urgency and retention. Stool changes include constipation and incontinence. As disease advances, urine becomes less in amount, darker and stronger smelling, and stool less frequent. Regular bowel movements still matter for comfort and dignity.

Tips: set a bathroom routine every 2 to 3 hours, remove trip hazards and add nightlights, use absorbent products and bed protectors, clean gently with alcohol-free products and barrier cream, balance fluids (less before bed, fewer irritants), and keep a care kit for outings.

Treatment may include medication and non-medication options. An indwelling urinary catheter may be considered as mobility declines.

Skin Changes in Progressive Illness and at End-of-Life

Wed, 14 Oct 2026 18:57:06 GMT

Skin changes are common as illness progresses. This resource explains what you might see and how to help.

Skin often gets dry from lower fluid intake, less oil production and fluid losses. It can also thin, leading to bruising and tears. You may see swelling, yellowing of the eyes and skin (jaundice), or flushing. Let your healthcare provider know if you notice these.

What you can do: pat skin dry instead of rubbing, use non-scented moisturizers, move your loved one gently and slowly, and reposition regularly (about every 2 hours is a rule of thumb).

At end of life, blotchy red or purplish skin called mottling can appear when the heart can no longer pump blood well to the hands, arms, legs and feet. It doesn't cause pain. Blankets can add warmth, though they likely won't change the colour. Tell your care team if you see it.

Food for Thought: Support if Your Loved One Is Not Eating

Wed, 14 Oct 2026 18:55:42 GMT

It's heartbreaking when someone you love stops eating. This resource explains what's happening and how you can help.

As illness advances, the body can't digest and absorb nutrients the way it used to, so appetite fades. Eating when you're not hungry can cause nausea, bloating and pain, so let your loved one choose whether to eat or drink. Offer small amounts, pureed foods, nutritional supplements and favourite drinks. Keep the mouth moist and clean for comfort. Thirst can usually be eased with sips of water, ice chips or hard candy.

Near the end of life, only sips of fluid, or nothing at all, is normal. It isn't starvation. The body is preparing itself. Artificial feeding and hydration can help some people, but can also cause or worsen symptoms.

It also acknowledges how caregivers feel: overwhelmed, powerless, even in conflict. Those feelings are natural. Consider whether your loved one has shared wishes about feeding, whether they can make their own decisions, and who holds Power of Attorney for personal care. The Canadian Virtual Hospice has more nutrition resources.

Project Big Life (PBL)

Thu, 16 Oct 2025 17:58:03 GMT

A site fuelled by Canadian researchers, clinicians, data scientists and developers who wanted a way to show how their research and public health policy could affect people, their families and their community. PBL realized the algorithms that they created to predict disease risk in the community are just as accurate, if not more so, than the algorithms that they used in their clinics with patients. They quickly created an online calculator to demonstrate how healthy living affects a person's life expectancy, using the same approach that they used to assess how healthy living affects entire communities. Have a peek at their calculators on their website.

PAIL (Pregnancy and Infant Loss Network)

Thu, 16 Oct 2025 17:56:29 GMT

The PAIL network is an organization that is dedicated the grief and bereavement support of those who have experienced pregnancy loss or death of their baby.

The professionals section has been created to assist health care providers in their work. The resources are free to download and share. You will find links to more information about:

Education and e-learning opportunities (Compassionate Care Workshops, Communication e-learning module)
Resources for professionals (videos, downloads, newsletter, information and practice suggestions) and families (videos and downloads) such as communication with families, memory making, forming bereavement committees, lactation after loss, employment leave after loss, etc.

PAIL also offers a variety of peer-support services (at no cost to families) to parents and family members who have been affected by pregnancy or infant loss. The support services are offered over the phone and online, and are available to residents of Ontario.

Canadian Pediatric Palliative Care Alliance

Thu, 16 Oct 2025 17:56:25 GMT

By establishing an online, evidence-based, bilingual resource hub, Canada's Pediatric Palliative Care Alliance will help empower healthcare professionals, organizations, and communities by providing streamlined access to a one-stop, comprehensive information resource.

Wellspring

Mon, 23 Jun 2025 14:57:51 GMT

Wellspring is a resource for patients and caregivers that provides specialized programs designed to provide connection and belonging; ease pain, fatigue and distress; build strength and mobility; and support financial and workplace challenges for people diagnosed with Cancer. Wellspring programs are available across Canada online, and through locations in Ontario and Alberta, all at no charge, and without referral.

Talking End of Life

Thu, 05 Jun 2025 15:05:17 GMT

Talking End of Life (TEL) ...with people with intellectual disability is a resource that shows you how to teach people with intellectual disability about end of life. It is designed for disability support professionals (DSPs) but is also helpful for families, health professionals, and educators. With assistance, people with intellectual disability might also find the TEL information helpful. TEL reflects 10 years of Australian research on end of life and people with intellectual disability. TEL is an online version of the Dying to Talk project, an Australian Research Council funded partnership between The University of Sydney, Keele University in the UK, and Unisson Disability.

Pediatric Oncology Group of Ontario

Thu, 05 Jun 2025 15:03:02 GMT

Pediatric Palliative Care: Pediatric Oncology Group of Ontario (POGO) is working with the palliative care community to support joint efforts to expand access to pediatric palliative care services and supports for children and youth in Ontario, and their families, including children who are treated in the childhood cancer care system. Below if a link to the POGO Pediatric Palliative Care Resources to support Health Care Providers.

Health Quality Ontario

Thu, 05 Jun 2025 14:58:35 GMT

Health Quality Ontario (HQO) has a legislative mandate established under the Excellent Care for All Act 2010 to evaluate new health care technologies and services for effectiveness; to report on the health care system's quality and provide support for quality improvement. The agency also provides evidence-based recommendations concerning health care funding; public reporting across all health sectors including long-term care, home care and primary care.

Health care providers can join Quorum, an online community dedicated to improving the quality of health care across Ontario Quorum supports quality improvement work by allowing providers to:

Find and connect with others working to improve health care quality
Identify opportunities to collaborate
Stay informed with the latest quality improvement news
Give and receive support from the community
Share what works and what doesn’t
See details of completed quality improvement projects
Learn about training opportunities
Join a Community of Practice

To be redirected to HQO’s palliative care quality standards for Ontario click here: https://www.hqontario.ca/evidence-to-improve-care/quality-standards/view-all-quality-standards/palliative-care .

To learn more about Quorum where palliative health care providers seek advice and support on implementing quality improvement projects related to palliative care click this link https://www.hqontario.ca/Quality-Improvement/Quorum

Hospice Palliative Care Ontario

Thu, 05 Jun 2025 14:54:37 GMT

Hospice Palliative Care Ontario: Hospice Palliative Care Ontario is a provincial association for hospices and palliative care providers, professionals, and volunteers throughout Ontario.

Their Mandate:

Encourage, develop, support, and provide leadership and guidance in the field of hospice palliative care in Ontario
Promote the development and expansion of hospice palliative care services in Ontario
Develop Standards for Hospice Services and accredit hospices
Promote research in the field of hospice palliative care
Provide hospice palliative care education for health professionals, volunteers, and the general public

Centres for Learning Research and Innovation in Long Term Care

Thu, 05 Jun 2025 14:51:17 GMT

Ontario Centers for Learning Research and Innovation in Long Term Care: Ontario CLRI is funded by the Government of Ontario and hosted at Baycrest Academy for Research and Education, Bruyère Health Research Institute, and the Schlegel-UW Research Institute for Aging. The collective expertise, resources, and partnerships of the host organizations help advance the Program’s provincially mandated goals. The Ontario CLRI helps the province’s 600+ LTC homes to enhance the quality of life and care for residents. The Program educates and trains the current and future LTC workforce and provides solutions to pressing issues, including an aging population, care complexity and workforce challenges.

Link: https://clri-ltc.ca/ Click on Resources at the top of the page. Once on new page scroll down to drop down menu that says “all audiences”. Click on the drop down button and change to your specific designation/role to find specific resources, education and/or links relevant to your practice.

(French Resources Available)

Canadian Virtual Hospice

Thu, 05 Jun 2025 14:48:19 GMT

The Canadian Virtual Hospice provides support and personalized information about advanced illness, palliative care, loss and grief, to people living with illness, family members, people working in healthcare, educators, and researchers. The Canadian Virtual Hospice is a division of the International Centre for Dignity and Palliative Care Inc., a registered charity. Through this website you can access both information about topics in hospice palliative care; as well as resources and education to support you as a health care professional caring for people living with a progressive life-limiting illness

(French Resources Available)

The Ontario Caregiver Organization

Thu, 05 Jun 2025 14:42:47 GMT

Ontario Caregiver Association: The Ontario Caregiver Organization (OCO) exists to improve the lives of Ontario’s 4 million caregivers. Caregivers are ordinary people who provide physical and emotional support to a family member, partner, friend, or neighbor. The OCO supports caregivers by being their one point of access to information, so they have what they need to be successful in their role.

The OCO works collaboratively with caregivers, healthcare providers and other organizations to improve the caregiving experience. How?

By finding ways to make existing services more broadly available
By ensuring all caregivers, regardless of age, disease, diagnosis, or location within the province can access support
By identifying gaps, and working with partners to find new ways to fill them

Link: https://ontariocaregiver.ca/ for Health Care Provider Resources, education and links see top ribbon on website and click on the 3 horizontal lines next to help Line Chat.

(French Resources Available)

Strengthening a Palliative Approach in Long-term Care

Thu, 05 Jun 2025 14:39:45 GMT

SPA-LTC- Strengthening a Palliative Approach in Long-term Care (SPA-LTC) is about making sure that people with life-limiting illnesses have more opportunities to experience a high quality of life from the moment they enter long-term care to the day of their death. a national team of health researchers developed SPA-LTC as an approach to care that draws together best practices in palliative care within long-term care settings across the globe. These practices were tested in Canadian long-term care settings and adapted to fit our local context. SPA-LTC is a “made in Canada” approach that works. This approach is intended to support the needs of people living with a variety of life-limiting illnesses, including frailty, dementia, end-stage organ disease, and cancer.

(French Resources Available)

Palliative Care Consultants Network

Thu, 05 Jun 2025 14:32:10 GMT

Palliative Care Consultants Network: Palliative Pain and Symptom Management Consultants provide secondary-level hospice palliative care expertise through consultation, coordination, collaboration, facilitation, education, skill development, research and evaluation, at local, regional, provincial and national levels. The PPSMC’s assist service providers in the application of best practice tools in assessments and guidelines for palliative care.

How can PPSMC’s help you as a service provider?

They can:

Offer consultation to service providers in-person, by telephone, by video conference or through email regarding care i.e. assessment and management of pain and other symptoms;
Provide case-based education and mentoring for service providers;
Help build capacity and competency among front-line service providers in the delivery of palliative care;
Link service providers with specialized hospice and palliative care resources.

To connect directly with a PPSMC outside of North Eastern Ontario please go to this link: https://pccnetwork.ca/ and click on “Where we are” in the top right-hand corner of the page.

For your PPSMCs of North Eastern Ontario click back on home age to find links to make a referral.

World Health Organization

Thu, 05 Jun 2025 14:14:02 GMT

Dedicated to the well-being of all people and guided by science, the World Health Organization leads and champions global efforts to give everyone, everywhere an equal chance to live a healthy life and a comfortable death.

Patient Advisors Network

Thu, 05 Jun 2025 14:09:00 GMT

Patient Advisors Network: The PAN is a c ommunity of practice for patient/caregiver partners both new and involved, that is dedicated to improving healthcare for all. The PAN offers Consulting practice services to healthcare organizations and teams based on the expertise of patient/caregiver partners.

Canadian Network of Palliative Care for Children

Thu, 05 Jun 2025 14:06:11 GMT

Canadian Network of Palliative Care for Children: The NCPCC’s purpose is to improve the quality of living and dying for infants, children and youth with life threatening conditions and their families. The Network provides leadership and a common voice for pediatric hospice palliative care across Canada.

Pan-Canadian Palliative Care Research Collaborative

Thu, 05 Jun 2025 14:04:34 GMT

Pan-Canadian Palliative Care Research Collaborative: The PCPCRC mission is to develop a Pan-Canadian network of practice-focused research groups producing high-quality palliative care research.

Canadian Hospice Palliative Care Association

Thu, 05 Jun 2025 14:01:44 GMT

he Canadian Hospice Palliative Care Association is the national voice for quality hospice palliative care in Canada. We advance hospice palliative care across the country by providing education, raising awareness, influencing public policy, and collaborating with provincial hospice palliative care associations.

Provincial Palliative Care Program

Thu, 05 Jun 2025 13:58:54 GMT

The Ontario Palliative Care Network (OPCN) is a partnership of health service providers, community and social support service organizations, health systems planners, as well as patient and family/care partner advisors formed to develop a coordinated and standardized approach for delivering palliative care services in the province. 

Their Mandate is the following:

To act as a principal advisor to the Ministry of Health and Ministry of Long-Term Care on quality, coordinated palliative care in Ontario
To be accountable for quality improvement initiatives, data and performance measurement, and system-level coordination of palliative across the province
To lead regional and local integration of palliative care services and delivery
We engage sector stakeholders – including but not limited to, Francophones, and First Nations, Inuit, Metis and urban Indigenous communities – to inform recommendations and work on palliative care

At this website you will find landmark documents to support the implementation of both Primary/Core and Secondary/Specialist level Palliative Care teams and the expected competencies the providers who make up those teams are expected to have to provide evidenced base, inclusive and holistic palliative care.

(French Resources Available)

People First of Canada

Wed, 04 Jun 2025 14:15:59 GMT

People First of Canada: People First of Canada is the national organization representing people with intellectual and developmental disabilities. People First of Canada is the national voice of people who have been labeled with an intellectual or developmental disability. PF of Canada are about rights – human rights, citizenship rights, accommodations rights and language rights. The right to freedom, choice and equality for all.

von-ppsmc

Changes in Breathing in Advanced Illness and at End-of-Life

Palliative Approach to Care vs. Palliative Care Specialist

Communication in Advanced Illness and End-of-Life

Palliative Pain and Symptom Management Consultation (PPSMC)

Elimination Changes: Bowel and Bladder

Skin Changes in Progressive Illness and at End-of-Life

Food for Thought: Support if Your Loved One Is Not Eating

Project Big Life (PBL)

PAIL (Pregnancy and Infant Loss Network)

Canadian Pediatric Palliative Care Alliance

Wellspring

Talking End of Life

Pediatric Oncology Group of Ontario

Health Quality Ontario

Hospice Palliative Care Ontario

Centres for Learning Research and Innovation in Long Term Care

Canadian Virtual Hospice

The Ontario Caregiver Organization

Strengthening a Palliative Approach in Long-term Care

Palliative Care Consultants Network

How can PPSMC’s help you as a service provider?

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World Health Organization

Patient Advisors Network

Canadian Network of Palliative Care for Children

Pan-Canadian Palliative Care Research Collaborative

Canadian Hospice Palliative Care Association

Provincial Palliative Care Program

People First of Canada