Frequently Asked Questions
How can I get involved to improve the system of care?
Do you have a recent experience using palliative care services or supporting a loved one who has? Do you have a story to share? We need your voice to inform our work!
To learn more about roles for patients and caregivers with the South East Regional Palliative Care Network, email us at SouthEastPalliativeCare@lhins.on.ca.
The Kingston Palliative Care Partnership is also seeking Patient and Family Experience Advisors to help shape the future of palliative care services in Kingston and surrounding areas. Learn more about the position and apply here.
What is palliative care?
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
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;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patients illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, 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, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Is hospice palliative care only available at the time of death?
Hospice palliative care is available to the person and family at any time during the course of the illness and during bereavement. Whether the treatment is aimed at cure or maintaining the best possible quality of life, hospice palliative care expertise can help.
Accessing hospice palliative care at the time of diagnosis or when a prognosis is confirmed allows the person and family to plan for future needs. It allows time to think and talk about options and choices, to consult with loved ones and make plans, which will support the person through the course of his or her illness.
Hospice palliative care is never static. It is always changing as the person’s needs and expectations change. The very heart of hospice palliative care is “living richly within the limits of one’s disease.”
Doesn’t hospice palliative care take away hope?
The purpose of hospice palliative care is not to diminish hope but to refocus it. The hope for cure might shift to the hope for the management of symptoms or the presence of family and the health care team. Hope may mean a pain-free day, a sense of security, of love, of not being abandoned, or a wedding or a birth to attend in the near future.
Is there a difference between palliative care, hospice care, and end-of-life care?
In Canada, palliative care and hospice care share the same principles. While palliative care programs developed primarily within larger health care institutions, hospice care developed within the community as free-standing, primarily volunteer programs. The term hospice palliative care was coined to recognize the convergence of hospice palliative care into one movement.
End-of-life care refers specifically to services provided to patients who are dying from an advanced life-threatening illness.
Although the South East Hospice Palliative Care has a focus on end-of-life care, it also promotes the general principles of hospice palliative care including the importance of accessing hospice palliative care services as early as possible for maximum benefit.
What kinds of services are provided by hospice palliative care?
Hospice palliative care services may vary from place to place and are usually flexible in nature but may include:
- Expert medical care to minimize pain and other symptoms
- Planning with loved ones for a team approach to care
- Emotional support with hospice volunteers
- Spiritual support for people of all faiths and beliefs
- Coordination of at-home nursing care
- Arrangement of homemaking and physical support
- Respite care to give at-home caregivers a break
- Sympathetic listeners who are not afraid to hear about dying
- Ongoing bereavement support after the death of a loved one
Does a person have a say in the treatment and care received?
Yes. Regardless of the situation, individuals are able to make choices about the treatment and care they wish to receive. They should discuss these choices with their health care providers and their loved ones. Examples of questions to consider include: What are the side effects of certain treatments? Which ones require hospitalization? What are the probable outcomes? Are there costs involved? Who pays?
What do I need to consider before becoming a primary caregiver?
Living Lessons: A Guide for Caregivers (produced by the Canadian Hospice Palliative Care Association with the support of the GlaxoSmithKline Foundation) suggests that you ask yourself the following questions:
- How will I juggle the day-to-day care of someone I love so much with my other responsibilities (e.g. work, my children)?
- Can I take a leave of absence from work?
- Is it a role I am suited for?
- Will I have the physical and emotional strength or the practical support I need?
- Is it desirable or physically possible for me to care for a dying person in my home?
- Is a hospice palliative care team available – a doctor willing to visit the house, nurses, personal support workers, and hospice volunteers?
How do I care for a loved one facing a progressive, life-threatening illness?
As a caregiver, you play an extremely significant role in ensuring both physical and emotional well-being 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 in your local area. When you contact the South East LHIN Home and Community Care, be sure to inquire about volunteer support and respite care to give you a much needed break.