There may come a time when your parent's health declines and a palliative care approach is suggested to you or requested by the family. This article provides an overview of this important care option that is often misunderstood. Being well-informed about care options is an essential part of the care journey.
People are often frightened when they hear these two words. Many think that palliative care means no medical care. Others assume that a person is dying and that there is nothing to be done. All hope is lost, leaving the person and his or her family abandoned. These assumptions are inaccurate.
As much as we may not want to think about it, we are all mortal. At some point, our health will change. With medical advances, many of us may live for years with a life-limiting illness. We may reach advanced stages of a disease. What types of care will we need at various points in time, from the time of diagnosis until the end of life? What does
What is palliative care?
Also known in Canada as hospice palliative care, it is a holistic approach to care for adults and children who are living with a life-limiting illness or dying from advanced illness. Their families are also supported. Palliative care began in Canada in the 1970s and has evolved into its own specialty area of medicine. The goal is to relieve suffering and improve the quality of life at any point during life-limiting illnesses.
While many people who receive palliative care have cancer, palliative care also helps those living with other diseases such as advanced heart, respiratory and kidney disease, Alzheimer disease, AIDS, ALS and Multiple Sclerosis.1
Core aspects of palliative care
The World Health Organization (WHO), identifies the following2:
A team approach involves medical and non-medical professionals, and volunteers focused on meeting a range of needs that change over time as a person’s health changes. It can include: doctors, nurses (often nurse practitioners), pharmacists, social workers, occupational therapists, physical therapists, speech and language pathologists, dieticians, personal support workers, religious clergy of a person’s choice, trained volunteers, informal caregivers such as family and friends, and bereavement counsellors.
Where is palliative care provided?
It can be provided in a person’s home, in retirement and long-term-care homes, free-standing hospices (typically for people in their final months of life) and in hospital – whether in designated units or throughout the hospital. Community palliative care teams can help a person remain at home or remain at home for as long as possible. Most Canadians want to die in the comfort of their own home or in a hospice rather than in the noisy, medicalized environment of a hospital. The reality is that most die in hospital due to a shortage of community palliative care services across the country. This needs to change.
Medical assistance in dying
Is palliative care the same as medical assistance in dying? No. Medical assistance in dying (MAID) became legal in Canada in 2016. The Canadian Society of Palliative Care Physicians (CSPCP) has reported that there is confusion amongst the public about the difference between MAID and palliative care. The CSPCP is concerned that this confusion could result in people not seeking palliative care. They recommend the term physician-hastened death to help make a clear distinction between the two. Without timely access to palliative care information and services, patients who are suffering may feel that they do not have options. As a result, they may choose hastened death because their suffering has been inadequately addressed or they think that their families are overburdened.3
Studies have shown that when people with advanced illness have information about and access to quality palliative care services, the request for physician-hastened death significantly drops. The challenge is that there is not equal access across Canada for palliative care services, particularly in rural areas. With an aging population in Canada, the need is only going to increase.3 Palliative care acknowledges the preciousness of time and relationships. When our physical, emotional and spiritual pain is addressed, we can focus on what brings meaning and joy to our lives. In doing so, hope can be reframed. We can have good moments to enjoy and savour.
Advanced Care Planning: Speak Up!
Online workbooks to reflect on and record your thoughts on advance care planning, and start conversations with key people in your life. There are links to resources across Canada.
Canadian Hospice Palliative Care Association
Information about, and answers to, frequently asked questions about palliative care.
Canadian Virtual Hospice:
Information and support on palliative and end-of-life care, loss, and grief.
Debbie Gilbert is a Certified Professional Consultant on Aging in private practice and the Founder of Generations (www.debbiegilbert.ca). With a focus on eldercare, self-care and care for the caregiver, Debbie works with Gen X’ers, Boomers and older seniors across Canada. The following article does not replace medical care or advice, financial and/or legal advice and is not intended to do so. © Debbie Gilbert May 12, 2017