Through vision and mission statements, virtually every health care organization in Ontario has described the need to advance patient-centred care as a top priority. Despite decades of trying, health care administrators in Ontario have yet to fully implement patient-centred care.
As a former hospital CEO with a long career in health care leadership, I know that many well-intended efforts have been and are being made to design the system around the needs of patients and families. But as a recent navigator of the system on behalf of my terminally ill husband, I also now know from first-hand experience that the adoption of patient-centred care unfolds with inconsistent peaks and valleys across a patient’s journey.
This was brought home to me in a very personal and profound way during the two-and-a-half years of my husband’s palliative journey through our health care system. Watching Bill experience the system as a family member, I learned more about patient-centred care than I had during my entire career as a health care leader.
I saw the wonderful difference a patient-centered care approach and attitude can make. One of Bill’s wishes was to die at home. Due to the incredible support of our family physician who is also a palliative care physician, as well as the palliative care coordinator and their teams, he was granted his wish. Two Sunday afternoons prior to his passing, our family physician came to our home to have the difficult conversation of what to expect emotionally and physically, including how Bill would likely die. He was so compassionate and emphatic. He really seemed to understand what we were going through.
However, we also experienced poor attitudes and non-patient-centred processes. This made Bill and the family’s emotional stress incredibly more difficult than it already was. For example, once we stood at a clinic’s reception desk, with a glass separating us and the clerk. We waited what seemed a very long time while the clerk answered every voicemail before she lifted her head to answer our 15-second questions. Another time, we were given instructions without ever having eye contact. And I vividly remember the time my husband was harshly criticized for being in the wrong part of the hospital due to a communication misunderstanding.
We also saw how bureaucratic requirements can stand in the way of patient-centred care. The day before my husband passed away, the home care coordinator called, requesting that she come to the house because, according to her records, he had moved to a different category and she needed to interview him. I explained to her that he was in the process of dying and that it was not necessary. I was met with great insistence and she call the following morning (after he passed away) with the same request. She was doing her job, which clearly was a greater priority than the needs of the patient and family at that difficult time. Patients and families deserve kindness, respect and dignity. We can do better and we all know we should.
I now see, with a new sense of urgency, how important it is for leaders to have the courage to drive all parts of every organization toward patient- and family-centred care. Here is what needs to change for us to be successful.
We can no longer accept “silos of care” within and between organizations. You know you are not receiving patient-centred care when you find yourself relaying to the home care nurse everything that went on in the hospital on the latest visit and vice-versa. The patient and family are forced to become the navigator of care between the silos.
There needs to be more ways to assess patients’ interactions with individual providers, and patients should be able to see the providers they have come to know and trust when possible. Over two and a half years, we met many caregivers with great variation in experience, skill and attitude. If we were fortunate enough to have a home care nurse come to the house that we had met before, even several months before, what a great joy it was. For once, we wouldn’t have to start over again with our story.
We can no longer accept “old style” command and control leaders creating cultures of fear, blame and anger. This style of leadership results in hierarchies where tasks are paramount and creates scenarios like the one we faced with the home care coordinator who probably thought she would be penalized if she didn’t document a conversation with us. Despite my husband’s imminent death, rigid power structures can make a bureaucratic check mark more important than patients’ needs.
These are huge leadership challenges. And there are no quick fixes for any of these issues. However, here are the pieces I believe are necessary to build patient-centred care:
Success is all about leadership style and culture. Old-style “command and control” leadership leads to intra-and inter-organizational competition rather than a sense of community working together toward a worthy cause. A more collaborative, authentic leadership style focused on bringing out the best in all staff and providing all the resources for staff to do their job, results in a culture of empathy, trust and caring and is more conducive in implementing patient- and family-centred care. In that culture, patients are not criticized and staff attitudes reflect the priority of meeting patient and family needs before everyday routines.
An urgent focus on cross-system relationships and conversations would greatly benefit patients. Patients and families should not be the navigators of care or communication between the silos of hospital and home.
Getting the “inside” story from patients and families allows the emotional journey to emerge. The current methods of soliciting feedback from patients and families doesn’t always necessarily tell the true “inside” story about their care experiences, including the emotional component. A new and innovative approach is required where patients can tell their stories at the right time with the right person in the right setting for the patient. In this way, patients can share the total truth about their experiences.
In conclusion, I believe that health care leaders hold a tremendous accountability to work together with frontline staff, patients and families to create a new, innovative and responsive system that will bring to life patient-centred care.
Leaders who model people-centric behaviours and lead with patient-centred values on an ongoing basis can ignite passion in staff and demonstrate that understanding the emotional journey for patients and their families is key to successful outcomes.
The dream of patient-centred care that I believed in and worked for as a health care leader is stronger than ever; my passion has been renewed and reenergized by my own experiences as a partner and advocate on behalf of my late husband. And so, I urge current health care leaders to be bold change leaders now. Now is the time for strong consistent leadership in every corner of health care. The patients and families of Ontario are counting on you.