These core values of health care must be safeguarded in our time-pressured world. Dignity in Care provides practical ideas and tools to support a culture of compassion and respect throughout the health care system. People working in health care can have a huge influence on the dignity of those who use health care services, which in turn can improve the patient experience and increase satisfaction with health care. Good communication is an essential ingredient for providing the best quality of health care and patient safety. 

This edition of Contemporary Family Trends is about the experiences of dying people and their families in Canada. This report is meant to act as a conversation catalyst, helping to expand the dialogue surrounding death beyond right-to-die debates in order to form a foundation for future discussions about how we live our lives and face our deaths. To this end, Death, Dying and Canadian Families examines the historical experiences of death and dying, the changing role of families in end-of-life care and the “medicalization” of death and dying in Canada. 60 pages.

This handout outlines some of the services a home may wish to implement in order to provide palliative care to those who are deaf and blind. Some may find this resource applicable especially for the contact information contained within. 1 page.

The Quality End-of-Life Care Coalition believes that all Canadians have the right to quality end-of-life care that allows them to die with dignity, free of pain, surrounded by their loved ones, in a setting of their choice. The Coalition believes that to achieve quality end-of-life care for all Canadians there must be a well funded, sustainable national strategy for hospice palliative and end-of-life care.  It is the mission of the Quality End-of-Life Care Coalition to work together in partnership to achieve this goal.

This website managed by Canadian Hospice Palliative Care Association and the Quality End-of-Life Care Coalition of Canada and is a roadmap for an integrated palliative approach to care.  Changes are already underway in care settings across Canada. It features a blog, informaton for care providers, volunteers and family caregivers. Features are informative and include a service directory.

A Model to Guide Palliative Care based on national principles and norms of practice was first released in 2002: this is a revised version. This steamlined version focuses on principles and norms and provides only the most used information. Contained within are topics such as the illness experience, the role Hospice Palliative care throughout the trajectory of care and a model to guide person and family care.

This comprehensive website, Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators.  The site features an "Ask a Professional", discussion forums and hosts "your stories". They have tools for practice, lists of upcoming courses and conferences and a series of caregving videos.

A Four day education event held October 1-4, 2015 Donald Gordon Centre, Kingston, ON.  Topics covered include: Palliative care community resources & initiatives; Pain management: Nausea, Dyspnea, Bowel care, Malignant bowel obstruction and Palliative care emergencies.   Register now

Palliative care is also referred to as hospice palliative care or end-of-life care.(1)  It is an approach that improves the quality of life of patients and their families who face problems associated with life-threatening illness.   The focus of palliative care is on achieving comfort, ensuring respect for the person facing death and maximizing the quality of life for the patient, family and loved ones.

Palliative care services provide care by:

  • Managing pain and other symptoms through work with a team of experts
  • Planning with a team approach to care for your loved one
  • Helping patients live as actively as possible until death
  • Enhancing quality of life, and may also positively influence the course of illness
  • Affirming life and regards dying as a normal process; intends neither to hasten or postpone death
  • Providing emotional, spiritual and cultural support for all members of the family
  • Providing practical supports such as home care services and/or respite care, to give caregivers some relief
  • Ongoing bereavement support after the death of a loved one
  • Hospice palliative care is offered in a variety of places including hospitals, at home, nursing homes and freestanding hospice facilities. (1) (2)

Why is it important?

As a caregiver, you play an extremely significant role in ensuring both physical and emotional well-being through the journey and at the end of your loved one's life. It is important that you, your loved one, and your loved one's health care provider talk about what quality of life means and plan together to achieve this. You will need to consider your loved one's care needs, your own ability to provide care in a home or hospital setting, what support services are available and accessible, and availability of home care, hospital care or hospice facilities. (1) (3)

Who Provides Services

A team of caregivers usually provides palliative and end-of-life care services. The team may include nurses, physicians, social workers, spiritual advisors, bereavement support workers and trained volunteers, Ask your doctor, or other health care professional (Nurse Practitioner or Nurse) for further information.  The hospital discharge planner or local homecare organization can also assist to help find the services that will help you and your loved one. (1) (3)

References

1.  Health Canada. Retrieved March 31, 2014 from:  
     http://www.hc-sc.gc.ca/hcs-sss/palliat/res/index-eng.php

2.  Hospice Palliative Care in Canada. (2014). Canadian Hospice Palliative Care Association (CHPCA) Fact Sheet:
     Hospice Palliative Care in Canada
.  Retrieved March 31, 2014 from:  
     http://www.chpca.net/media/330558/Fact_Sheet_

3.  Hospice Palliative Care in Canada. (2014).  Canadian Hospice Palliative Care Association (CHPCA). 
    
Retrieved March 31, 2014 from: 
     http://www.chpca.net/family-caregivers/living-lessons.aspx

Palliative care is also referred to as hospice palliative care or end-of-life care.   It is an approach that improves the quality of life of patients and their families who face problems associated with life-threatening illness.   The focus of palliative care is the prevention and relief of suffering, by means of early identification, assessment and treatment of pain and other problems (physical, psychosocial and spiritual). (4)

Why is it important?

  • Palliative care provides relief from pain and other distressing symptoms
  • 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
  • Integrates the psychological and spiritual aspects of patient care
  • Offers a support system to help the family cope during the patients illness and in their own bereavement
  • Uses an interprofessional team approach to address the needs of patients and their families, including bereavement counseling, if indicated
  • Will enhance quality of life, and may also positively influence the course of illness
  • Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life
  • Can take place in various settings, such as a hospital, long-term care facility (e.g., nursing home), home or hospice (2)
  • Hospice palliative care programs allow patients to gain more control over their lives, manage pain and symptoms more effectively, and provides support to family caregivers.
  • Hospice palliative care services and treatment can lead to better outcomes such as reduced caregiver burden and other costs (4)

Key Considerations

  • Significant disparities across Canada remain with respect to access to end-of-life care, quality of care and out-of- pocket costs to the patient. Only 16% to 30% of Canadians who die currently have access to or receive hospice palliative and end-of-life care services (3)
  • Depending on the estimate, expanding access to quality palliative care would have saved between $40 and $345.5 million between 2003 and 2011 in the province of Ontario alone (3)
  • 73% of Canadians turn to their family physician for more information on hospice palliative care services (3)
  • Patients with life-limiting advanced chronic disease identify that receiving honest information about their condition and having time to prepare for life’s end are key aspects of quality end-of-life care (3)
  • To provide high quality palliative care and services across care sectors, the use of common validated screening and assessment tools will improve patient care at the clinical and system level (1)
  • Current end-of-life care research increasingly suggests that Canadians prefer to die at home or in their home communities (e.g. in long-term care facilities) instead of in hospital settings (3)
  • One of the key challenges over the next ten years will be persuading Canadians that end-of-life care planning is important for everyone, not just those diagnosed with a life-limiting illness, such as cancer (3)
  • End-of-life discussions and advance care planning can reduce moral distress for healthcare providers; lead to better client outcomes, improve adherence to individual’s wishes and reduce caregiver burden (3)

References

1.  Cancer Care Ontario. Retrieved March 31, 2014 from:
     https://www.cancercare.on.ca/cms

2.  Health Canada. Retrieved March 31, 2014 from: 
     http://www.hc-sc.gc.ca/hcs-sss/palliat/res/index-eng.php

3.  Hospice Palliative Care in Canada. (2014). Canadian Hospice Palliative Care Association (CHPCA) Fact Sheet:
     Hospice Palliative Care in Canada
.  Retrieved March 31, 2014 from:  
     http://www.chpca.net/media/330558/Fact_Sheet_

4.  World Health Organization. (2014). Retrieved March 31, 2014 from:
     http://www.who.int/cancer/palliative

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