What is palliative care?
Palliative care is a type of health care for patients and families facing life-threatening illness. Palliative care helps patients to achieve the best possible quality of life right up until the end of life. Palliative care is also called end-of-life, or comfort care.
In Canada and around the world, quality palliative care:
- focuses on the concerns of patients and their families;
- pays close attention to physical symptoms such as pain, nausea, loss of appetite and confusion;
- considers the emotional and spiritual concerns of patients and families;
- ensures that care is respectful and supportive of patient dignity;
- respects the social and cultural needs of patients and families;
- uses a team approach that may include volunteers, social workers and spiritual leaders in addition to medical staff.
Palliative care does not necessarily end when someone has died. Family members may need support as they grieve the loss of a loved one and try to manage numerous strains and stresses. Bereavement programs are often part of the comprehensive care offered as part of palliative care.
See also: World Health Organization’s Definition of Palliative Care
When is palliative care provided?
Palliative care can be provided at any time, to anyone with advanced illness, regardless of age. Taking steps to increase a patient’s overall comfort is always a good thing to do.
A more difficult question is knowing when the time is right to actually become registered with a palliative care program. Many palliative care programs will not register patients who are in the early stages of illness. The people working with these programs, however, may consult with your health care team and provide suggestions for managing your symptoms. As long as your health care providers are paying close attention to controlling your pain and other symptoms, you are receiving palliative care.
Who provides palliative care?
Many health care providers contribute to palliative care teams, depending on the needs of the patient and the family. Nurses, family doctors, social workers, spiritual care providers, palliative care specialists, occupational therapists, physiotherapists, home care and personal support workers, volunteers, and pharmacists are just some of the people who may be involved.
Canada does not have a national palliative care program, so you may see differences in the type of care available in each province. The people contributing to your care will also vary depending on your specific needs and the services available where you live.
Where is palliative care provided?
Palliative care can be provided anywhere. Many palliative care programs provide services and support for patients wherever they are living – at home, in a residential hospice, in hospital or in a personal care home. The best place to receive care is usually the place that best matches your needs.
Some people choose to stay at home for as long as they can. Family members, with support from the health care team, may decide that they want to be the main caregivers in the home. Many communities have supports in place and services to help patients and families provide care at home, including these:
- Respite programs
Family caregivers need time to rest and many home care programs offer respite programs that provide short-term patient care for several hours or even several days.
See also: Caring for Yourself
- Home care programs
Most Canadian home care programs offer palliative care services in the home. Professional nursing care is often available through these programs, along with other home-based support services.
- Private companies
Sometimes people will pay for private home care services because they need extra help. Private home care companies supply part-time, as needed or around-the-clock care. However, unless you have insurance, you will have to pay for these costs yourself. Private services may include:
- nursing/medical care
- personal care
- Hospice volunteers
Many provincial hospice associations offer hospice volunteer support. Hospice volunteers are carefully screened, selected and educated to offer emotional, spiritual and practical support to individuals and families living with advanced illness. Volunteers are often matched with families and are available to talk on the phone or make in-person visits.
- Palliative care programs
Some palliative care programs offer in-home visits from nurses or doctors who are specialists in palliative care. Even if in-home visits are not offered, program staff may still be available to offer telephone advice on pain or how to manage other symptoms. These programs are often run through hospitals. Check with your local hospital or government home care office to see what palliative care is offered in your area.
If you choose to stay at home, remember that at any point you can change your mind about where a death is going to happen. Some families decide they want a home setting for as long as possible. If you eventually choose to leave home, many other facilities offer palliative care.
See also: Considerations for a Home Death
A residential hospice provides full-time palliative care, generally in a home-like setting. Some hospices will also take care of the person who is ill for a few days at a time so that caregivers can get some rest. Unfortunately, there aren’t enough residential hospices to meet the needs of everyone who needs palliative care in Canada.
Residential hospices often give priority to people who are nearing the last stages of life and are not expected to live more than a few months. Hospice staff will pay close attention to physical symptoms. Symptoms such as nausea and constipation need to be treated so that the patient can be as comfortable as possible. Staff will also care for the patient’s emotional and spiritual health. Patients may need to confirm that their expectations for medical treatment match services that can be provided in the hospice.
Sometimes the care provided in a residential hospice is not covered by the public health system. In that case, the family will likely be required to pay a daily charge. Sometimes private or group insurance will cover these costs.
Many hospitals have staff with special training in palliative care. These people provide support and work with the patient and the patient’s health care providers.
Some hospitals have special palliative care units or wards to help manage symptoms that are more difficult. These units offer privacy and a more home-like environment, however they are generally not meant for long-term stays. Instead, symptoms are brought under control so that patients may be transferred to another unit of the hospital, to a hospice or home.
Personal care home
Personal care homes, also known as nursing homes, regularly provide palliative care services. You don’t have to be a long-time resident to receive palliative care in a personal care home. People with advanced illnesses will sometimes move into a personal care home so that they can receive palliative care.
Personal care homes may have access to teams that have special training in palliative care. These consultants provide support and work with the patient, the family and the patient’s health care providers to help with symptom management. They also offer support in difficult decision making to ensure that the best care is provided.