1. What is your role, or interest, in the palliative care or end-of-life care system?
Former palliative caregiver for both parents, hospice volunteer.
2. What is your perception of the CHANGE IN DEMAND for palliative care or end-of-life care in your province?
3. Has the availability of services in your province or region deteriorated, remained the same, or improved in the last 5 years?
There are still myths around pain management on the part of Primary Staff. Money is still tight. We have more seniors, who require more care. Family members in the sandwich generation cannot keep up. Caregivers are getting ill.
4. Has POLITICAL SUPPORT for palliative care or end-of-life care services in your province or region declined, stayed the same, or improved in the past 5 years.
It is not utmost in the minds of politicians in Central Ontario despite a pressing need. The advocates have money and do not require services. Those without suffer in poverty.
5. Progress in the last 5 years in my province can be seen in:
More Aging at Home supports, more research, but the money is now diluted and 15 hrs. care/week is inadequate for the system.
6. Setbacks over the last 5 years in my province have included
-pain management, misunderstandings around FIPPA and PHIPA on the part of Primary Care staff.
Barriers to access can also include:
- family issues - dysfunctional families
- communication deficiencies or disorders: language barriers, auditory, visual, cognitive disorders
- bias or prejudice - i.e., inaccurate statistics: women die of stroke and heart disease
- fears - of diagnosis or treatment
- patients who do not speak English
- poor or ineffective treatment plans
- cognitive disorders - delirium, dementia,
- mental health issues
- mistakes in diagnosis
- attitudes: i.e., discrimination, being treated as incompetent, expressive or receptive language disorders
- Primary Care workers who speak down to patients, or use acronyms, or complicated language
- wait times
- lack of staffing
- crowded hospitals
7. NEW challenges or barriers faced in my province in the last 5 years include:
Neighbours who enable clients to remain at home without proper support. CCAC staff who are badly trained, ignorant of geriatric issues, lack of continuity, lack of PSWs and health care aids.
8. What are the KEY challenges or barriers facing the palliative or end-of-life care system in your province today that need to be changed?
There is no lack of services, family or Hospice volunteers take up the slack. We need patient advocates in Central Ontario.
9. What best describes the level of care integration that exists in your province or region?
The CCAC in Ontario are powerless, and may be ignorant of situations, services, and do not advocate for family. They treat the patient alone, negating family needs.
10. What are the key strengths in the palliative and end-of-life care system in your province today?
Hospice Volunteers. Which is a sad state of affairs. Rural palliative care is dependent upon us. Church members pitch in, but they are untrained.
11. What supports do CAREGIVERS need most in your province?
We are not short of information, we are short a coordinator to provide accurate information, physicians to make house calls, geriatric oncologists, geriatricians to make accurate diagnoses, and Primary Care Staff to be honest and forthright with family members. There is a lot of information out there, but no one to disseminate it.
12. If you believe that there is an important role for different levels of government to play in end-of-life care, please explain what their role should be.
If you believe that there is an important role for different levels of government to play in end-of-life care, please explain what their role should be.
FEDERAL government has an important role to play in:
Licencing geriatricians, we are far short of the numbers we need. Enabling the training of foreign doctors to practice here in Canada.
PROVINCIAL government has an important role to play in:
Educating regional authorities, and practitioners, demanding all front line workers have geriatric training, palliative training, Patient Navigators, supervising provinces to ensure access, ,ensuring equal access for all.
REGIONAL HEALTH CARE AND HOME CARE AUTHORITIES have a role to play in
Determining regional needs, and fair access whether rural or urban.
I think the role of Transfer Payment Agencies in Ontario is far too great. We have few who provide services in Ontario. Hospices should not rely 30% on taxes, and 70% on donations. They are too valuable a service.