Ontario’s first government-funded Palliative Care Unit at the Toronto Grace Health Centre has been serving terminally ill patients and their families since 1979. The palliative care unit and the community program have cared for more than 5,000 patients in this time. The inpatient palliative care unit (PCU) is well known in the palliative care and broader community. The community program was introduced in 1994 and has seen significant development in the last few years.
The community program was spearheaded by a part-time physician, Dr. Colette Hegarty, an anesthetist, who was also working in the Toronto Grace palliative care unit at the time. She was acutely aware of a growing trend towards patients preferring to remain in the home setting when faced with a terminal illness. This also coincided with the time of hospital downsizing and the number of acute care beds being curtailed. The original program consisted of that one physician taking referrals from Community Care Access Centres (CCACs), nurses, doctors and patients.
Today, the community program has grown into a more comprehensive service primarily meeting the needs of residents in the west end of the city, particularly, the South Etobicoke area. The goal of the program is to provide exemplary care and support to patients with advanced cancer or other end-stage diseases. Care in the home is provided in partnership with community care providers and family members. Patient comfort and symptom relief as well as family support is the primary goal of palliative care.
The program presently has four physicians providing palliative care in the community. The palliative care physicians may provide consultative services to family doctors who are themselves following patients at home, or they may share the care where the patient is on the palliative doctor’s roster for on-call support and visits when difficulties arise. For the most part, however, the palliative care physician assumes the primary care of the patient at home, largely because many family doctors remain uncomfortable managing these patients.
A palliative care visit to the home allows many opportunities to observe the patient in his or her own setting and to see what is important to support that person in the terminal phase of their illness. Home visits also allow the patient to exercise more control at a time in life when they experience one loss after another. The main goal of the palliative care visit is to provide symptom management. The most common symptoms treated are pain, shortness of breath, nausea, vomiting, anxiety and depression. These visits also allow an opportunity for the physician to assess how caregivers and family members are coping, and to determine the need for added clinical and psychosocial services and assistance.
Home palliative care works best when delivered as an interdisciplinary service relying on the expertise of a team of caregivers to more fully understand and inform care to relieve the patient’s and family’s suffering. The sharing of information is vital to ensure good care in the home. The Toronto Grace physicians work closely with the home care nurses as well as the Etobicoke CCAC and the Dorothy Ley Hospice to support the patient’s care at home. Regular rounds are held to review common issues in the community related to palliative care.
In the last eight months, physicians in the program have made approximately 1,100 home visits. One of the most important elements of the service is the 24 hour on-call support provided to patients and families coping at home. For many family members and close friends, being able to provide care to a terminally ill loved one is a deeply meaningful and rewarding experience. Occasionally, certain factors make it difficult or impossible to provide terminal care at home. In those instances, and where patients do not wish to remain at home for the duration of their illness, the community program’s link to the Toronto Grace Palliative Care Unit creates a critical, smooth, and easy transition to inpatient care. The PCU also admits patients for respite or for symptom control.
While the community program is focused in Etobicoke, the Toronto Grace’s inpatient unit accepts patients from all over the greater Toronto area. Admission criteria include any terminal illness, for instance cancer, ALS, and end-stage organ failure. Community patients receive priority admission where possible.
As the trend in palliative care delivery shifts towards the home, more demand has been placed on home-care resources as well as families. The institution of the recent federal government’s compassionate care leave allowance is some recognition of the huge sacrifices that many families make in order to care for loved ones at home. The combined inpatient and community programs at Toronto Grace Health Centre provide a unique, holistic approach to care for the terminally ill and their families.