What is palliative care?
Palliative care is a field of medicine that cares for and supports people who are living with serious and life-limiting illnesses, and their families. Palliative care can be provided at any age and for any stage of an illness.
Originally, palliative care focussed mainly on the needs of people who were terminally ill and nearing the end of life. End-of-life care continues to be an important part of palliative care; however, palliative care is no longer reserved for patients who are near death. The scope of palliative care has evolved to encompass the needs of anyone facing a serious illness, regardless of the type of illness or the prognosis. The focus is on the health-related distress of the patient and not the characteristics of the illness.
Although some differences may exist depending on the hospital or medical facility, in general, palliative care can be provided in the following situations:
- For any illness regardless of the prognosis.
- At any age and stage of an illness, including from the time of diagnosis.
- For as long as needed—some people receive palliative care for years.
- Along with treatment for the underlying illness, including curative or life-prolonging treatment.
Palliative care can be given in a number of settings, including hospitals, out-patient clinics, long-term care facilities, and at home.
What is the difference between palliative care and hospice care?
The terms palliative care and hospice care are sometimes used interchangeably. Many organizations identify themselves by both terms—for example, the Canadian Hospice Palliative Care Association and the International Association for Hospice and Palliative Care. However, although they are closely connected, and share a lot of history, they are not the same thing.
Hospice care is essentially a part of palliative care. Like palliative care, it provides comfort and support to patients with serious illnesses, as well as their families; however, hospice care attends to the needs of patients who are approaching the end of life. Palliative care addresses the needs of patients at all stages of a disease; it is not limited to end-of-life care.
In Quebec, hospices are called palliative care centres or palliative care homes. They are generally for patients who have three months or less to live, and who accept a care approach that aims only to ensure comfort and not to prolong life.
What is the role of palliative care?
The role of palliative care is to relieve the suffering of people facing serious and life-limiting illnesses, and to improve their quality of life. This role extends to family as well. “Family” includes the patient’s chosen family, such as friends and caregivers—anyone the patient is supported by and feels close to.
People living with serious and life-limiting illnesses face a wide range of issues that can affect their physical and mental wellbeing, and cause suffering. Palliative care evaluates the impact of an illness on the patient and family, and identifies and addresses the different causes of suffering. Causes may vary depending on the illness and the individual, but, in general, they include physical symptoms, and psychological, emotional, social and spiritual problems related to dealing with the illness.
Suffering is complex. Everyone’s experience is unique and the understanding of what enhances or diminishes quality of life can be very subjective. Some patients may be mostly troubled by physical symptoms, such as pain; others may be more stressed by the uncertainty of their situation or the effect their illness is having on their family. Physical and mental suffering are also connected—each one can affect the other and make problems better or worse.
Palliative care treats the whole person—the physical, psychological, social and spiritual issues that are a part of the complete experience of a serious illness. It also recognizes the influence of expectations, goals, needs, hopes and fears in addressing the patient’s pain and suffering. Treating the patient’s “total pain” is central to the role of palliative care.
Palliative care is most effective when it is initiated as early as possible, before symptoms become difficult to manage. Depending on the needs of the patient, it may be appropriate to start palliative care right after diagnosis or early in the treatment process of the illness. Early identification, assessment and management of factors contributing to the patient’s distress significantly help reduce suffering and improve quality of life, both for the patient and the family.
How palliative care works
Palliative care uses a multidisciplinary team approach to treat the different causes of a patient’s suffering and provide the support required. The palliative care team may vary depending on the patient’s needs and type of care required, but it will generally include palliative care specialists, other doctors, nurses, psychologists, physical therapists, occupational therapists, nutritionists, social workers and spiritual counsellors.
Palliative care specialists coordinate the patient’s care with the other members of the team. They help the patient and family make decisions about treatment and support, and ensure that the team understands the needs, wishes and goals of the patient. Matching treatment with patient goals can help improve quality of life by giving patients some control over their care.
Physical symptoms
Physical symptoms are usually treated first. If the patient is not physically comfortable, it is very difficult to deal with other issues, such as emotional and spiritual concerns. Physical symptoms that palliative care commonly addresses include pain, fatigue, insomnia, loss of appetite, constipation and breathing problems.
Psychological and emotional problems
Support and counselling can help reduce suffering related to a wide range of psychological and emotional issues, including anxiety, fear, stress, depression, sadness and anger. Patients also often struggle with feeling a loss of dignity and control, and that they are a burden to family and friends. A psychologist, or another specialist, can help patients understand and manage these emotions, and help prevent them from becoming overwhelming.
Social/practical issues
Social support (e.g., social workers, home aids, volunteers) can help with a wide variety of practical, personal and everyday items, depending on what the patient needs. Examples of social and practical support include:
- Helping patients figure out what assistance they need most and where to find it.
- Organizing rides to and from treatments.
- Arranging a meal service schedule.
- Helping with washing, dressing and eating.
- Assisting with financial, legal and employment questions.
- Helping patients communicate their wishes to family members.
Spiritual concerns
Many people who are seriously ill struggle with existential suffering: What is the meaning of life? Why did this happen to me? How can I accept death as a part of life? Spiritual support and counselling can help patients find answers to, or make peace with, many of these kinds of difficult questions. For some people this may be part of a religious exploration; however, “spiritual” relates to anything affecting the human spirit and is not necessarily connected to religious belief.
End-of-life care
The goal of end-of-life care is to help patients live as comfortably and peacefully as possible for the time they have left, and in accordance with their wishes. This may include more aggressive symptom management and psychosocial support.
Family and caregiver support
The role of palliative care is also to relieve suffering and improve quality of life for the families of patients with life-limiting illnesses. Family includes caregivers and close friends as well as relatives—anyone the patient considers family.
Family is incorporated into the care program of palliative care patients. To effectively care for someone with a serious illness, the needs and suffering of the family have to be addressed as well. Family members experience a great deal of distress when faced with having to cope with a loved one who is seriously ill. Many become overwhelmed by the responsibility of having to take on a caregiver role, particularly if the patient is receiving palliative care at home. Family and caregivers can experience frustration, stress, anxiety, depression and poor physical health as they try to care for the patient, and fulfill their own needs and everyday responsibilities.
Palliative care provides family members with practical, psychosocial, emotional and spiritual support to help them cope with these challenges. Towards the end of the patient’s life, palliative care support includes helping family members understand what to expect and how to prepare for the death of their loved one. Grief counseling is also provided afterwards, if desired.
This content was developed from the following sources:
- Canadian Hospice Palliative Care Association. Milestones in Hospice Palliative Care. www.chpca.ca/about-hpc/milestones-in-hospice-palliative-care/. Accessed March 31, 2022.
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