A conversation between Anna Greenberg, Interim President and CEO of Health Quality Ontario, and Craig Lindsay, an individual who has had significant experience as a caregiver. Anna and Craig discuss both the broader issue of caregiver distress and the very personal challenges that an individual caregiver can face.
Anna Greenberg: Three years ago, Health Quality Ontario released The Reality of Caring, a report that documented the increased percentage of unpaid caregivers (caring for home care clients) reporting stress and burnout. Since the release of that report, the situation has become worse - not better. The most recent data indicates 44% of home care clients with an informal/unpaid caregiver reported at least once that their caregiver was experiencing distress, anger or depression related to their role and/or were unable to continue their caregiving activities. This is a 21% increase in a 2-year period.
Craig Lindsay: From personal experience I can attest to this. My mother, Lois, lived alone for the last 16 years of her life. She needed some minimal support; someone to go to appointments with her, help with understanding her medications, general housekeeping, and keeping her home safe and accessible. I could do that, and my brothers helped too. As she aged her needs changed. Unfortunately, mine did too. My kidneys failed and I started dialysis three times a week. My ability to support her care, after she received the diagnosis of terminal lung cancer, was not what it should have been. For those last weeks I struggled to help her die comfortably at home. Juggling these responsibilities inevitably led to stress and I know I am by no means unique.
Hospital overcrowding and hallway health care are realities facing today’s health care system in Ontario. The fact that they represent both a source and a symptom of the pressures that patients and frontline clinicians face underscores the complexity of the challenges to improve the situation.
This is one of the main messages to come from Measuring Up 2018, Health Quality Ontario’s yearly report on the performance of the province’s health system.
The report documents the cascading effects of hospital overcrowding such as longer wait times for admission to hospital from the emergency room; longer wait times to transfer out of hospital to other types of care – such as long-term care, home care; and insufficient access to mental health and addictions care. At a time when more and more patients have complex health needs, these stressors on the system are also contributing to rising levels of distress among unpaid caregivers.
This week is Digital Health Week, a yearly acknowledgement of the transformative power of digital health technologies to support the delivery of health care.
That such a transformation is desired by patients and caregivers is not in doubt. Canada Health Infoway notes that 80% of patients want access to their own records and other digital health solutions. This enthusiasm was confirmed recently in a survey commissioned by the Canadian Medical Association which found:
- Three-quarters of Canadians would like to see more technology as part of the health care system
- 7 in 10 Canadians would take advantage of virtual physician visits and many believe that it would lead to more timely care, convenience and overall care.
- Over half (56%) would likely wear a mobile device that monitored their health continuously.
Despite these figures, digital care has been relatively slow in coming to Ontario and the rest of Canada for a variety of reasons related to the challenges of putting the proper infrastructure in place, privacy and security concerns and some resistance from health care providers and patients.
Earlier this summer, Health Quality Ontario revamped its public reporting on wait times to make it more user-friendly. We also added reporting on the wait time between a specialist receiving the referral from the patient's family doctor, to the patient's first surgical or specialist appointment, to gain a fuller picture of the patient experience.
Since then, the data has been used on numerous occasions to document how well or badly one hospital is doing compared to the rest of the province. There have also been almost 100,000 page views of the wait times pages on the Health Quality Ontario website since their launch. Interest in the information remains strong and there were more than 13,000 page views of the nine wait times measures pages between mid-November and mid-December.
Simply measuring quality doesn’t make health care better. But transforming that data into opportunities for improvement can have a very real impact on patients and their health and safety.
This is demonstrated in the recent Quality Surgery: Improving Surgical Care in Ontario report released by Health Quality Ontario.