I am a General Practitioner practicing in Community Palliative Care in Ottawa. I, and several other physicians working in this field in Ottawa, see patients every day in their homes and at hospice. We care for people in the final stages of illness, to ensure comfort for them and for their families and caregivers. While our services are in constant demand, and sometimes patients have to wait for our care, I have always felt that we in Ottawa and the Champlain region provided a high level of palliative care.
For the last month or two, the Community Care Access Centre, or CCAC, has had to start rationing access to Personal Support Worker, or PSW, services, even to palliative patients. This year, they have seen an unprecedented increase in both the number and complexity of patients being referred for home care services. In order to meet their fixed budget, they have had to reduce access to Personal Support Services, such that most patients are having to be put on a wait list and wait up to weeks or even months to access this service that allows them to maintain their dignity at home by helping them get dressed and undressed, help them prepare a meal, help them bathe and use the toilet. Yet patients are being told there isn’t enough money in the budget to provide this care.
This affects even patients on the palliative caseload. It means that terminally ill patients are being denied assistance with bathing and personal care until they are so weak and unwell that they are essentially bedbound. And even then, some remain on wait lists.
Palliative patients have limited energy to use every day. If they spend it on bathing themselves, dressing themselves, etc, that means they have less energy to be awake and interact with family and friends, less energy to read or watch TV, less energy to enjoy even looking out the window. Often, their caregivers are elderly and have medical or physical issues that prevent them from assisting with personal care. Sometimes these patients live alone. Exceptions have been made, but not frequently enough. Dying patients are suffering because the government will not fund CCAC adequately. And transferring CCAC responsibilities to the Local Health Integration Networks will take these sorts of decisions even further from the patient and the bedside.
Also, hospital inpatients being discharged also join the waitlist, sometimes resulting in dangerous situations at home when patients don’t have the necessary supports. Even patients who already have PSW services may lose these if they are admitted to hospital for more than 14 days. We recently had a patient be discharged too early so that he would not lose access to his PSW, which was absolutely essential for his care.
At the same time, hospices are also stretched to the limit, causing them to tighten admission criteria.
Wait-listing introduces an unpredictable factor into end of life care planning that cannot be allowed to continue. Patients and families need to know that the support is going to be there when they need it. To do otherwise is cruel to patients and families and goes against our commitment to improve palliative care in Canada and Ontario.
The wait-listing is a result of the CCAC being overbudget on PSW services (not just palliative PSW services). This is due to three factors: PSW wages have gone up, and deservedly so; demand for PSW services has increased beyond expectations due to earlier hospital discharge and the general aging of the population; and the complexity of patients being cared for at home has increased dramatically, meaning more people at home need higher level of service to be maintained at home.
So there is currently a two-tier level of care in chronic and palliative home care. One tier for people who can afford to purchase more services to serve their needs, and another tier for people who have no choice but to wait for service, and suffer in the meantime. All because the government continues to increase bureaucracy and limit funding for patient care. Nothing in Bill 41 will alleviate the suffering of patients going without personal care in Champlain region.
My patients deserve to end their lives in comfort, in their own homes if they desire, and with the dignity of having their personal needs met. My patient who looks forward to sitting in her favorite chair, looking out her window at her garden, should not be told to just stay in bed because we can’t afford to get her the help she needs to get into that chair and back into bed. My patient who has always prided himself on getting dressed “like a normal person” each day, should not be told to stay in his pajamas because his dignity is not worth enough to our provincial government. My patient who would rather get assistance to use a bedside commode than use a diaper in bed, should be given that option as long as it remains feasible. My patients should not feel that they are an undue burden on their family by seeing them struggle with providing their care.
If we are serious and honest about improving the care of the dying and terminally ill, we must be serious about funding the personal care that palliative patients require. We must root out the waste that exists in the layers of bureaucracy, not just in the CCAC, but in the LHINs and the Ministry of Health, whose growth has well out-stripped the funding for palliative care in Ontario.