I often hear from the families of patients who are fighting an illness, such as cancer, wondering when the right time for palliative care is. Most people think of it later than is ideal, in fact, raising it only as a measure to be addressed towards the end of life. In contrast, there is now a movement towards what has been called "early palliative care" – getting help when it is needed, rather than waiting until all other treatments have been stopped.
But would early palliative care mean giving up too soon? There are many myths about palliative care and one is that it will remove hope or shorten someone's life. This is untrue and deters many people from getting help at a stressful time in their lives.
What is palliative care? Palliative care arose from the hospice movement, which gained momentum in the 1960s in the United Kingdom. Dame Cicely Saunders, who is considered the founder of the hospice movement, drew attention to the care of the dying and the concept of "total pain" - that suffering is social, spiritual and psychological as well as physical. At that time, care was aimed at the very end of life, but it has become recognized that the benefits of palliative care can be relevant much earlier on.
Palliative care has evolved a lot since then . The World Health Organization now defines palliative care as an approach that improves the quality of life of patients and their families facing serious illnesses by the early treatment of pain and other problems. Early means not right at the end of life, but when active treatment of the disease is still ongoing with the aim of prolonging life. Early also means treating problems proactively and preventatively, rather than letting them get out of hand.
Treating pain and other problems early will not shorten life, but will improve its quality. Research conducted in the United States in patients with advanced cancer showed that those who received early involvement with palliative care teams survived longer than those who were not followed by palliative care. And research in the U.S. and Canada has shown that early palliative care improves overall quality of life (including physical, social, psychological and functional well-being), increases satisfaction with medical care and reduces depression.
Early palliative care in these studies took place in palliative care ambulatory clinics, where patients were being followed by a specialized palliative care physician and nurse while they were also receiving active anti-cancer treatment (chemotherapy and/or radiation) from their cancer doctor. But palliative care can also be provided for patients who are hospitalized or at home.
Palliative care can provide help in several areas. These include:
Pain and symptom management When people think of palliative care they usually associate it with pain management, but palliative care specialists also treat symptoms such as shortness of breath, nausea, lack of appetite and trouble sleeping.
Coping with a serious illness Coping with cancer or another serious illness can be difficult for the whole family. The palliative care team can provide counselling or refer you to more specialized support services in the hospital or in your community.
Social support Most palliative care teams include social workers, who can provide assistance with financial matters as well as individual and family counselling.
Help at home Palliative care teams can connect you with community care resources to provide help at home. These can include nursing care, help with dressing and bathing, physical therapy and occupational therapy, and advice on how to modify your home (e.g. raised toilet seats, walkers, shower grab bars).
Advance care planning It is a good idea to plan ahead for a time when you may not be able to make decisions on your own, to discuss your preferences with your family and to identify a "substitute decision maker" who will be able to speak for you when you are not able to do this yourself. The palliative care team can help you start this process, which is best done when you are well.
So if your physician offers to connect you or a family member with a palliative care team, take them up on it. It will provide you with a support system to guide you through the complexities of living with a serious illness and it will not shorten survival - it may even prolong it.
Health Advisor contributors share their knowledge in fields ranging from fitness to psychology, pediatrics to aging. Dr. Camilla Zimmermann heads the Palliative Care Program at University Health Network (UHN), and is medical cirector of the Al Hertz Centre for Supportive and Palliative Care at the Princess Margaret Cancer Centre, UHN. She is an associate professor and holds the Rose Family Chair in Supportive Care in the Faculty of Medicine, University of Toronto.