Today (April 16) is National Advance Care Planning Day, an annual event to raise awareness about detailing what kind of care you wish at the end of life and to confirm a future substitute decision-maker who can communicate your wishes and beliefs about future health care, and make decisions when you are no longer mentally capable of doing so. In this conversation, Lee Fairclough, VP for Quality Improvement at Health Quality Ontario, and Kathy Kastner, a long-standing advocate and coach for appropriate end-of-life care and planning, discuss this issue.
Lee Fairclough: In the last few years, we have seen many campaigns in Ontario and across Canada raising awareness about advance care planning. These campaigns are having an impact. Findings from the 2017 Commonwealth Fund International Health Planning Survey of Older Adults showed more senior Ontarians have had discussions relating to issues of advance care planning and substitute decision making than almost any other country or jurisdiction in Canada. That study found that:
• 70% of older Ontarians report having a discussion with family, a close friend or a health care professional about what health care treatment they would want or not want if they became very ill or injured and could not make decisions for themselves
• 47% of older Ontarians report having a written plan or document describing the health care treatment they would want or not want at the end of their life
• 70% of older Ontarians report having a written document that names someone to make treatment decisions for them if they cannot make decisions for themselves
As a society, we are thinking more about dying and end-of-life care as well as earlier and more effective palliative care.
Hallway health care – gurneys with sick patients lining hospital corridors – is one of the most graphic representations of the pressures on Ontario’s health system today. We know that the equivalent of more than 10 large, 400-bed hospitals are filled to capacity each day by patients who don’t need the level of services hospitals are designed to provide. They are waiting for more appropriate placement in long-term care, rehabilitation, home care and assisted living.
Tackling these and other system challenges requires an accurate assessment of their scope and scale. Every health care system needs to measure how it is doing so it can improve and so Ontarians know whether the system is moving in the right direction and if they are getting good value for their money.
To properly support the priorities for the system, it is important that what we measure helps us identify and focus our efforts on the most pressing concerns. It is also important not to overwhelm health care professionals with a burdensome requirement to measure too much. As health quality guru Dr. Don Berwick wrote in 2016, excessive and mandatory measurement “is as unwise and irresponsible as is intemperate health care”. Measurement should provide meaningful information on performance, so providers can begin the quality improvement process, if required.
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.
A conversation between Alies Maybee and Anna Greenberg
Anna Greenberg: One of the widest chasms in digital health care today is the divide between people’s wish to access their own medical records electronically and their ability to do so. According to a 2018 Canada Health Infoway survey, 74% of Ontario residents who currently have no access would like electronic access to their health records, and only 31% currently can access their own health records.
One of the most convenient ways for patients to access their medical information is through a patient portal. These have existed for more than a decade at individual hospitals and are now becoming more widespread – but still only to provide information from one institution.
Depending on the portal, patients can view:
• Physician notes, personal medical history and medication records
• Laboratory and test results
• Appointment details
• Electronic means of communicating with your physician
• General medical and health information
On our own patient and family advisory council, only a few members have had experience with such a portal. Those who did told us it made a world of difference. Others talked of struggling to assemble this type of information themselves.
Alies Maybee: I recently attended a conference hosted by Canada Health Infoway where Julie Drury, chair of the Ontario Minister’s Patient and Family Advisory Council, described the challenges of compiling and managing information about her daughter’s care at multiple hospitals. She showed the huge mound of paper binders of medical information that she had to cart around and keep updated. And this was only a few years ago. I think patient portals have the potential to significantly ease this burden, but portals need to give patients access to more of their information and be better connected with each other when they exist at different care settings.
Over the last five years, several organizations in Ontario have developed and shared reports to support primary care clinicians in their efforts to improve patient care. Until now, these reports were produced independently and in a largely uncoordinated fashion.
Each of these initiatives were intended to fill an important gap in access to information. It wasn’t too long ago that there was no mechanism for family physicians practicing in Ontario to see comparative data on their own practice. As recently as 2015, less than a third of family physicians in Ontario reported routinely receiving information on how the clinical performance of their practice compared with that of peers. In contrast, 70% of family physicians practicing in the UK reported receiving this type of information.
Though well-intended, the number of reports in Ontario then became overwhelming. Many family physicians indicated they did not access or read the reports they were receiving due to time pressures, little relevance or concerns about validity. This was expressed by physician leaders at a roundtable called to address the issue. Not suprisingly, there was clear and shared understanding across providers of the reports that these multiple uncoordinated reporting efforts could lead to disengagement and accelerate burnout.