Palliative & End of Life Care
Information & Frequently Asked Questions
What is palliative care?
Palliative care is a special kind of health care for individuals and families who are living with a life-threatening illness that is usually at an advanced stage. The goal of palliative care is to assist in providing comfort and dignity for the person living with the illness as well as the best quality of life for both the 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 is planned to meet not only physical needs but also the psychological, social, cultural, emotional and spiritual needs of each person and their family.
Palliative care may be the main focus of care when a cure for the illness is no longer possible. Palliative care services are helpful not only when a person is approaching death but also at earlier stages in the illness. Palliative care may be combined with 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.
Who benefits from palliative care?
Individuals and families living with life-threatening illnesses benefit from palliative care. Many people who receive palliative care are living with a life threatening illness. Palliative care helps those living with diseases such as cancer, advanced heart, respiratory and kidney disease, Alzheimer Disease, AIDS, ALS and multiple sclerosis (MS).
What is involved with palliative care?
Palliative care involves:
Pain management - People living with life-threatening illness may experience pain. Families are concerned about pain and how to relieve it. Health care providers work with individuals and their families to find out what is causing the pain and the best ways to relieve it. Pain may be managed with opioids/opiates and other drugs and by other means such as massage therapy and relaxation exercises.
Symptoms 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.
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.
Caregiver support - Individuals 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.
Bereavement support - Palliative care services provide support for family members to work through their own emotions and grief regarding the death of their 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 individuals who may have faced many losses over a short period of time.
Who provides palliative care?
Most people are cared for by their family and friends. At certain times, they may need some additional 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.
Members of the team are determined by the needs of the person and his or her family. The team often includes a nurse with specialized palliative care skills, the person's family physician, a physician specialized in palliative care and a social worker.
Where do people receive palliative care?
Palliative care is offered in a variety of places;
At home - Palliative care is often provided in people's homes through home care programs and professional nursing care. There may be other services available in some communities to help people to remain at home. 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.
Hospitals - Some hospitals have special palliative care units. Others set aside a certain number of beds on different units in the hospital for people needing 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 hospital.
Who pays for palliative care?
Palliative care at home may be paid for by the provincial health plan as part of a home care program. Services provided in the last month of life include the cost of drugs and equipment used at home and 219 paid hours of home support services. After these hours are used up, people need to look for other ways to pay such as Community Supports Home Program.
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. There is no charge for bereavement support.
How can I make my wishes known about the care I would like to receive when I am facing a life-threatening illness?
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 that you are unable to say what you want, your family and health care providers will know. Such documents are called advance health care directives. You can seek advice about advance health care directives from your local health care provider which includes your family doctor, community nurse and social worker.
How can I find out about palliative care services available in my community?
The following resources may be helpful:
your family doctor
your community health care nurses
your hospital/community social worker
your spiritual counselor/clergy
your provincial palliative care association
your local Cancer Society or other organization concerned with specific diseases such as heart disease, Alzheimer Disease, kidney disease and MS
How can I find out more general information about palliative care?
There are several resources available to you:
The public library may have books and other material on palliative and hospice care
Canadian Virtual Hospice
Links to other resources are listed below
Caregiver and Family Resources
A Caregiver's Guide: A Handbook About End of Life Care (2014 Caregiver's Guide)
Advanced Health Care Planning
Speak Up Canada
Advance Health Care Directives and Substitute Decision Makers (Coalition of Persons with Disabilities)
Advance Health Care Planning Booklet for Newfoundland and Labrador
Regional Palliative and End of Life Care Referral
For more information on the Regional Palliative and End of Life Care services offered in Central Health contact one of the following:
Regional Palliative Care Consultants
c/o Community Health Building
36 Queensway, Grand Falls-Windsor, NL A2B 1J3
Tel: (709) 489-4703 Fax: (709) 489-8844
c/o James Paton Memorial Regional Health Centre
125 Trans Canada Highway
Gander, NL A1V 1P7
Tel: (709) 256-5934 Fax: (709) 256-5936
End of Life Home Care Coordinator
Lewisporte Community Health Centre
P.O.Box 880, 21 Centennial Drive
Lewisporte, NL A0G3A0
Tel: (709)535-0926 Fax: (709) 535-0360
Regional Grief and Bereavement Consultant
James Paton Memorial Regional Health Centre
125 Trans Canada Highway
Gander, NL A1V 1P7
Regional Palliative Care Physician
Grand Falls-Windsor Community Health Centre
36 Queensway, Grand Falls-Windsor