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Pain and parking: Capturing the patient experience

Zal Press and Anna Greenberg

A patient’s experience interacting with the health care system is one of the most important indications of how well that system is functioning. In fact, better patient experience is one of the four parts of the Quadruple Aim for health care systems (along with better outcomes, lower costs, and an improved clinician experience). Here, patient advisor Zal Press (@PatientCommando) and Health Quality Ontario’s Interim President and CEO Anna Greenberg provide their perspectives on measuring the patient experience.

Zal Press: How do patients measure their experience in the complex world of health care? Since their reason for using the system can be about pain, let’s start there. Patients are often asked to measure their pain on a scale of 1 – 10. However, as a Crohn’s patient, the pain in my gut often feels like there’s a cat trying to claw its way out and there are many times when my pain meter hits a 12 and even a 15. Pain is also a measure of success. I remember forcing myself to get up to walk, just a day after my bowel resection, to nurture the ultimate measure of a successful bowel surgery – the passing of gas.

Anna Greenberg: For years there has been a disconnect between the type of real-world experiences of patients like Zal and how the system measures their experiences. Standardized surveys are the go-to tool used by hospitals and others to measure patient experience. However, many surveys reflect the provider or administrator view of what’s important, not the patient’s perception of what’s important, and getting access to survey results (let alone using them for improvement) can take too long. Further, organizations often focus on what happens within their four walls rather than the entire experience a patient may have, such as what it was like to be discharged from hospital.

Advance care planning – we’re paying attention now

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.

Measuring what matters in hospitals

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.

Caregiver distress: A crisis grows

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.

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