Defining Hospice Palliative Care
As a specialized form of healthcare, hospice palliative care aims to relieve suffering and improve the quality of life for those living with a life limiting illness, as well as their families. Hospice palliative care addresses the specific physical, psychological, social, spiritual, and practical issues, and their associated expectations, needs, hopes and fears on an individual basis.
Benefits of a Palliative Care Approach
- Pain management
People living with a life-limiting illness may experience pain, causing concern among families who seek to relieve it. Health care providers work with patients and their families to find out what may be causing them pain, and the appropriate ways to relieve it.
- Symptom management
People living with a life-limiting illness may also experience a variety of symptoms depending on their illness. A palliative care approach is able to help relieve some of these accompanying symptoms that may be causing distress, through knowledge and an understanding of the causes and treatments.
- Social, psychological, emotional and spiritual support
Palliative care recognizes the importance of a person’s physical and mental health, emphasizing our need to provide various supports to both the individual and their family.
- Caregiver support
A common concern for caregivers and family members is whether or not they will be able to look after their loved one in the best way possible. In palliative care we see the importance of supporting the caregivers and family members, which is demonstrated in the various support systems put in place by palliative care services;
- Advice and assistance from health care providers, and medical professionals who are skilled in providing palliative care.
- Instruction on how to treat and care for the person, for example; how to give different medications, how to prevent skin conditions, how to make sure the person is comfortable, and how to recognize the signs of when the person is close to death, and what to do when you spot those signs.
- Support services that provide assistance with household tasks such as; meal preparation, shopping and transportation.
- Systems that can provide relief for the caregiver including; in house volunteers, day programs, temporary or permanent stays at long term care facilities
Provincial Associations of hospice palliative provides leadership for quality hospice palliative care in their province. Provincial associations work with partners in the health system and community to accelerate best practices and promising innovations in palliative care and supports.
*You can use the map or the adjacent list to find your provincial association
The Canadian Hospice Palliative Care Association (CHPCA) is a national nonprofit association that provides leadership in hospice palliative care throughout Canada. Membership is comprised of individuals and hospice palliative care programs from all ten provinces and three territories.
Individuals and families living with life-limiting illnesses benefit from palliative care. 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’s disease, AIDS, ALS and Multiple Sclerosis.
The majority of people approaching the end-of-life process are cared for by their family and friends. At certain times, they may need some help. In these situations, palliative care is usually provided by members of a palliative care team. When a team is involved, the person and their family are encouraged to make choices about the kind of care they wish to receive, and to take an active part in planning care.
Who is on the team is determined by the needs of the person and their family. The team often includes nurses with specialized palliative care skills, the person’s family physician, a physician specializing in palliative care, a social worker, a spiritual counselor, and a pharmacist.
Volunteers also play an important role in palliative care; providing support services such as companionship, relief for the caregiver and transportation. When the needs of the person and family require it, others may be added to the team, such as nutritionists, physiotherapists, occupational therapists and at home support workers.
Palliative care is offered in a variety of places; at home, in hospitals, in long-term care facilities, and occasionally in hospices. Individuals and their families need to know about the choices they have.
- At Home
Palliative care is often provided in people’s homes through home care programs. These programs offer professional nursing care and a variety of home support services. There may be other services available in some communities to help people to remain at home. These include:
- Volunteer services
- Day programs offered for the ill family member in a variety of places in the community
- Pain and symptom management teams
- 24-hour response teams that help with urgent needs on a short-term basis.
- Being at home may help people remain involved with their families and live as normally as possible.
Some hospitals have special palliative care units. Others set aside a certain number of beds in different units of the hospital for people needing palliative care. Hospitals may also have a palliative care team made up of health professionals who specialize in palliative care.
- Long-Term Care Facilities
Palliative care services may also be offered in long-term care facilities, such as nursing homes. It is sometimes necessary for residents who need more specialized palliative care services to enter a hospital. Long-term care facilities are less likely than hospitals to have specialized palliative care units.
In Canada, there are only a few residential hospices-separate buildings or apartments where palliative care is provided in a home-like setting. Some people move into hospices to receive palliative care on a 24-hour basis.
Palliative care is paid for in different ways across the country. Who pays often depends on whether care is being provided at home or in the hospital. It is important that people requiring palliative care and their families find out as soon as possible who pays for what and what additional financial assistance may be available.
Palliative care at home may be paid for by the provincial health plan as part of a home care program. These plans do not always include the cost of drugs and equipment used at home. Some plans allow only a certain number of paid hours of professional and home support services. After the hours are used up, people need to look for other ways to pay for these services.
People may use private insurance or their own money to pay for palliative care services at home. Some may receive assistance from social agencies, service clubs, local cancer societies and other similar organizations.
Palliative care provided in a hospital is usually paid for by provincial health plans. These plans usually cover most care including drugs, medical supplies and equipment while the person is in the hospital. In long-term care facilities, residents are usually required to pay for some of their care. Costs vary among facilities.
There is usually no charge for bereavement support. It is often provided as part of palliative care services offered in hospitals or by non-profit or volunteer organizations in the community.
The following resources may be helpful:
- your provincial or local palliative care association
- the toll free Hospice Palliative Care Information Line (1-877-203-INFO)
- your family doctor or specialist
- your home care nurses
- your hospital social worker
- your spiritual counselor
You should talk over your wishes with your family and let them know what you want. You can also put your wishes in writing so that, in the event you are unable to say what you want, your family and health care providers will know. Such documents are called advance directives or living wills. You can seek advice within your community about advance directives because the laws concerning them vary from province to province.
For more information on starting the conversation about end-of-life and for downloadable resources please visit Advance Care Planning.
There are several resources available to you:
- You can call the toll free Hospice Palliative Care Information Line; (1-877-203-INFO).
- You can call telephone-help lines. For example, the Cancer Information Service. Call toll-free at 1-888-939-3333 or (905) 387-1153.
- There are a number of support groups we follow through social media that may be able to help, see who we follow.