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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 West End-of-Life Care Network 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?

For more information, consult A Guide to Advance Care Planning (PDF), a document available on-line through the Ontario government. Although the document makes reference to seniors and the provincial Strategy for Alzheimer Disease, the information it provides is relevant to everyone.

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?
A Supportive Care Resource Team case manager at the South West Community Care Access Centre (South West CCAC) can help you explore these questions.

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 West Community Care Access Centre, be sure to inquire about volunteer support and respite care to give you a much needed break.

Where do people receive hospice palliative care services?

Hospitals - Some hospitals, such as London Health Sciences Centre and St. Joseph’s Health Care (Parkwood Hospital) have special palliative care units. Some community hospitals set aside a certain number of beds in different units in the hospital for people needing palliative care.

Ambulatory clinics - South West Ontario has one palliative care clinic located at London Regional Cancer Program. An interdisciplinary team is available to address the physical and psychosocial needs of cancer patients.

Long-term care homes - Palliative care services may also be offered in long-term care homes (also known as nursing homes or homes for the aged). Currently, long-term care homes are less likely than hospitals to have specialized palliative care units.

Residential hospices - Some families do not want the memory of a loved one’s death having occurred in their home or, for various reasons, are unable to provide care at home. In some communities “free-standing,” residential hospices - separate settings where hospice palliative care is provided in a home-like environment - are an option. In this type of setting, family members may relinquish their roles as primary caregivers and concentrate on being loved ones. Residential hospices can also be a resource for people who don’t have other support at the end of their lives.

Sakura House in Woodstock is currently the only residential hospice in South West Ontario.

The Community Care Access Centre (CCAC) is the agency that looks after government-funded home care services in Ontario. It is also responsible for providing information on a wide variety of community services. Services available include:
 
  • General and specialized nursing care
  • Pain and symptom management expertise
  • Assistance with personal care
  • Emotional / psychological support
  • Respite care

Many of these services are covered by government funding or volunteers. Some are available through private agencies. To better understand these services, contact the South West LHIN.

How do I access hospice palliative care?

A good place to start is with the South West Local Health Integration Network with its mandate for providing information and referral for a broad range of health services, not just those in the home. South West CCAC staff can provide you with guidance on accessing services you may require.

View The Lexicon of Commonly Used Terms developed by the Canadian Hospice Palliative Care Association.