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Choices for Palliative and End-of-Life Care

Kimberley Fowler
By Kimberley FowlerJanuary 20, 2016
Choices for Palliative and End-of-Life Care

Palliative care and end-of-life care relieve the suffering of patients as the end approaches.

As a patient’s symptoms intensify, more palliation may be necessary, as should the support provided to family during this time. Learn more about what choices there are for palliative and end-of-life care.

What is Palliative Care?

Palliative care is a specialized form of health care for patients and their families who face life-threatening illness. The goal of palliative care is to help patients achieve the best possible quality of life until the end of their life. According to the Canadian Hospice Palliative Care Association, the terms palliative care, hospice care, end-of-life care and comfort care are used interchangeably. However, some people use hospice care to refer to care provided in the community, not in the hospital.

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Medical staff, social workers, spiritual leaders and volunteers work together to provide palliative care to patients and their families across Canada. Palliative, hospice and end-of-life care teams focus on a number of areas, including:

  • Addressing concerns of patients and their families
  • Treating physical symptoms like pain, nausea, loss of appetite and confusion
  • Meeting emotional and spiritual concerns
  • Supporting patient dignity
  • Meeting social and cultural needs
  • Providing bereavement support for families.

Benefits of Palliative Care

Palliative care has been shown to reduce distress, stress and suffering for patients and their families coping with serious illness or disease. The benefits of palliative care are not limited to the end stages of an illness or disease. Patients and their families benefit from this form of care at any stage of their illness.

According to Kindred Healthcare, other benefits of palliative care include:

  • Improved communication between patients, families and health care providers
  • Addressing the needs of family caregivers as they cope with and care for a loved one with a serious illness
  • Offering psychological and spiritual care
  • Developing a support system for patients and their families
  • Allowing patients to remain comfortable, preventing and relieving pain and suffering, and improving quality of life
  • Helping patients maintain contact with family and friends
  • Fostering independence among patients
  • Helping patients and their families navigate the healthcare system

The Importance of Advance Care Planning

An important aspect of providing quality palliative care is ensuring that the needs and wishes of the patient are honored. In order to do this families must have conversations with each other about end-of-life wishes while they are still healthy.

Educating Future Physicians in Palliative and End-of-Life Care (2007) defines advance care planning (ACP) as a “process whereby a capable (mentally competent) adult engages in a plan for making personal health care decisions in the event that they becomes incapable (legally incompetent) to personally direct his or her own health care.” Yet, an Ipsos-Reid poll found that “86% of Canadians have not heard of advance care planning, and that less than half had a discussion with a family member or friend about healthcare treatments if they were ill and unable to communicate. Only 9% had ever spoken to a healthcare provider about their wishes for care.”

Talking to your family about your wishes should you become terminally ill or legally incompetent to make decisions about your own health care is an important step towards ensuring your needs and wishes are met should you ever require palliative or end-of-life care.

Access to Palliative Care is Limited for Canadians

Despite the benefits of palliative care only 16-30% of Canadians who die currently have access to or receive hospice palliative and end-of-life care services and even fewer receive grief and bereavement services. Access to palliative care depends on where in Canada a patient lives, but the Economist Intelligence Unit’sQuality of Death Indexreports that “we are still unable to provide valuable hospice palliative care services to over 70% of those dying within Canada.”

Funding, or lack of it, is one of the barriers for Canadians seeking palliative or end-of-life care. “Residential hospice palliative care programs are still at least 50% funded by charitable donations, and families must bear part of the cost of dying at home or in long-term care” reports the Quality End-of-Life Care Coalition of Canada in their “Blueprint for Action 2010-2020.”

The Canadian Hospice Palliative Care Association reports that “Canadian families frequently shoulder 25% of the total cost of palliative care due to costs associated with home based services such as nursing and personal care services,” and in Ontario, “palliative care clients were cared for primarily by their spouses or partners (57%) or their children or children-in-law (29%).”

More Support Coming for Canadian Caregivers

The Canadian government has recently decided to provide more support for family caregivers. On January 3, 2016 the federal government announced that family caregivers are now eligible for up to 26 weeks of compassionate care benefits, an increase of 20 weeks (before, family caregivers were eligible for only 6 weeks of benefits).

The Quality End-of-Life Care Coalition of Canada’s “Hospice Palliative Home Care in Canada: A Progress Report” found that most “Canadians prefer to die at home or in their home communities (e.g. in long-term care) instead of in hospital settings.”

With more and more Canadians preferring to die at home or in home communities the recent increase in compassionate care benefits is a critical step towards providing Canadian caregivers with the support they need.

Find Palliative Care Services Near You

To find palliative care, hospice or end-of-life services near you speak to your family doctor or visit one of these resources:

  • The Canadian Hospice Palliative Care Association’s service directory allows you to search by province, or by type of service
  • Information about the Federal Government’s programs and support of palliative and end-of-life care.

Other Resources include:

Because most palliative care and hospice programs in Canada are funded by donations and run mostly by volunteers it’s important to get involved if you can. The Hike for Hospice and Handbags for Hospice are two prominent fundraising programs that are run across the country with proceeds going towards local hospice programs. Google “Handbags for Hospice” to find a local event near you.

What questions do you have about choices of palliative and end-of-life? Share them with us in the comments below.

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Kimberley Fowler
Kimberley Fowler

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