FAQs

Hospice palliative care is aimed at relieving suffering and improving the quality of life for persons who are living with, or dying from, advanced illness or are bereaved.

Palliative care is a special kind of health care for individuals and families who are living with a life-limiting illness that is usually at an advanced stage. The goal of palliative care is to provide comfort and dignity for the person living with the illness as well as the best quality of life for both this person and his or her family. A "family" is whoever the person says his or her family is. It may include relatives, partners and friends.

An important objective of palliative care is relief of pain and other symptoms. Palliative care meets not only physical needs, but also psychological, social, cultural, emotional and spiritual needs of each person and family. Palliative care may be the main focus of care when a cure for the illness is no longer possible. Palliative care services help people in later life who are ill to live out their remaining time in comfort and dignity.

Palliative care services are helpful not only when a person is approaching death but also during the earlier stages of an illness. Palliative care may be combined with other treatments aimed at reducing or curing the illness, such as chemotherapy. Families also benefit from support when their loved one is dying and after his or her death.

Hospice palliative care is aimed at relief of suffering and improving the quality of life for persons who are living with or dying from advanced illness or are bereaved.

The Canadian hospice Palliative Care Association (CHPCA) is a non-profit association whose membership is comprised of individuals and hospice/palliative care programs from all ten provinces and three territories. Funding comes from membership fees, corporate and individual donations, project grants and contributions from charitable organizations and foundations. The volunteer board of directors includes appointed representatives from each of the eleven provincial associations and five elected members at large. Standing committees and ad hoc committees carry out a number of related activities.

The Canadian Hospice Palliative Care Association is the national association, which provides leadership in hospice palliative care in Canada.

The CHPCA offers leadership in the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened.

The CHPCA will strive to achieve its mission through:

• collaboration and representation;
• increased awareness, knowledge and skills related to hospice palliative care of the public, health care providers and volunteers;
• development of national standards of practice for hospice palliative care in Canada;
• support of research on hospice palliative care;
• advocacy for improved hospice palliative care policy, resource allocation and supports for caregivers.

In Canada, both terms are used to refer to the same thing - this specific approach to care. However, some people use hospice care to describe care that is offered in the community rather than in hospitals.

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 disease, AIDS, ALS and Multiple Sclerosis.

1. Pain management - People living with 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 is causing the pain and the best ways to relieve it. Pain may be managed with narcotics and other drugs and by other means such as massage therapy and relaxation exercises.

2. Symptom management - Often people have to deal with a variety of other symptoms. These can include loss of appetite, nausea, weakness, difficulty breathing, bowel and bladder problems and confusion. Palliative care can help relieve these symptoms that may be very distressing.

3. Social, psychological, emotional and spiritual support - The health of the whole person is important in palliative care. Because of this, palliative care services provide many different kinds of support to both the individual and family.

4. Caregiver support- People may be concerned about whether they will be able to look after their ill family member, especially when the person is being cared for at home. Palliative care services that help the family cope include:

• advice and assistance from health care providers such as nurses and doctors who are skilled in providing palliative care.
• instruction on how to care for the person. For example, how to give medication, how to prevent skin problems, how to recognize when the person is close to death and what to do at that time.
• home support services that provide assistance with household tasks such as meal preparation, shopping and transportation.
• relief for the caregiver. Sometimes a volunteer stays with the person so the family caregiver can go out. In other situations, the person who is ill may go to a day program or enter a hospital or long-term care facility for a short period of time.

Palliative care services provide support for family members to work through their own emotions and grief regarding the death of a loved one. Bereavement support may begin when the grieving process starts. This may be before the death of the family member. Bereavement support is an important part of palliative care for people who may have faced many losses over a short period of time.

The majority of people approaching end-of-life 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 his or her family are encouraged to make choices about the kind of care they want and to take an active part in planning care.

Who is on the team is determined by the needs of the person and his or her family. The team often includes nurses with specialized palliative care skills, the person's family physician; a physician specialized in palliative care, a social worker, a spiritual counselor and a pharmacist.

Volunteers 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 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.

1. 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 people feel that when they are at home they have more freedom to make choices about their care. There may be situations where people cannot stay at home to receive palliative care. Other options are available.

2. Hospitals - 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 are specialists in palliative care.

3. 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.

4. Hospices - 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
• the Canadian Cancer Society or other organization concerned with specific diseases such as the Heart and Stroke Foundation, the Canadian Aids Society, the Alzheimer Society of Canada, and others.

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).
• Your public library may have books and other material on palliative and hospice care.
• You can call telephone-help lines. For example, the Cancer Information Service. Call toll-free at 1-888-939-3333 or (905) 387-1153.
• The number of World Wide Web (www) sites on the Internet providing information about palliative care is steadily increasing - see our Other Linkspage.