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.
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Appreciate sharing on this post. As both an Oncology and Radiology nurse, I concur, experiences as described here are not acceptable, nor necessary. System improvement through recognition of point of care realities by patient-family [the recipients] and health care professionals [delivery of HC expertise] ought to drive institutional operational design. Personal experience always sheds new awareness. What has impressed me most in this post and the posted responses is that those who have held hospital CEO positions have revealed they have leaned more from personal point of care navigation and front side HC system exposure. I have to relay as well, I learned explicitly from navigating the HC system with 2 young mothers in my family throughout their cancer trajectory, the initial issue was “getting diagnosed” followed by blatant insensitive communication, and as described above, responses driven by routine and tasks versus human inquiry and need. The experiences were far from what I thought of as acceptable as a dedicated and developed HC professional.
Reflective Summary: My observation and experience poses that HC delivery context may be driven and designed too directly from business textbook frameworks, perhaps not thoroughly digested [customized] for the clinical sector applied to. We have endless committed and well intended professionals sometimes unable to unfold empathy and accurate response due to system context [acknowledge other factors exist such as attitude in some situations]. As Bonnie bravely cited “we can no longer accept ‘old style’ command-control leadership approaches” at times executed in an auto-pilot style. We need to cite and unleash our human talent and expertise uniquely “each and every encounter and action decision”, and do everything to develop, recognize and retain “best in practice” at point of care plat-formed by “best in leadership practice”. Like the iceberg analogy, see what portion is under the water’s surface in addition to the obvious top iceberg in view!
Deb
Thank you for an interesting, heartfelt article, Bonnie. We at Comfort Life have heard an increasing number of care homes and others in the senior care industry talk about client-centred or patient-centred care. It’s become the operative phrase, perhaps (we think) more so in the private care industry than public. It would seem reasonable that privately run retirement homes have the need and ability to offer more patient-centred care. Regardless, we ask people to look at private retirement homes as a means of getting high quality palliative care in a setting that is less clinical than some other settings. See http://www.comfortlife.ca/palliative-care.php
“As a former hospital CEO with a long career in health care leadership…I learned more about patient-centred care than I had during my entire career as a health care leader.”
Is this not exactly what is wrong with the management of the healthcare system? How does management improve the system without knowing what goes on with every part of the system?
Each individual within the system would do well to remember that we are in the service industry. If we lose sight of that, we should not be working in health care.
Bonnie, thank you for sharing your story. Such a powerful reminder of the importance of the issue and the value of shifting our perspectives.
I am a nurse and a nurse educator and the daughter who is navigating a system that is broken. 3 weeks ago I took my father to emergency with a haemorrhaging stroke. I have seen nurses and care aids who ignore my father as he tries to engage them in conversation, nurses who have been dismissive, rude, and offhand in their responses to questions or requests. I have also met wonderfully relational nurses who clearly ground their practise in family centred care.
I agree with the need to refocus health care and recognize the health benefit and cost effectiveness of Family centred care. Orienting health care to a primarily budget-centred care model ignores the fact that patients and their families are human. The cost benefit of continuity of care and working with patient and family as partner is being studied and we would do well to turn our efforts to ensuring health care organizations and staff fully understand and practice family-centred care as an ethical and therapeutic requirement!
Thank you for sharing your deeply personal insight on this important issue. You are well poised to provide much needed leadership on this complex issue. My condolences to you and your family on your loss.
It means alot to so many people to see you share your story Bonnie. Thank you for a powerful message!
“A community working toward a worthy cause”. I like the sound of that vision. Thanks for sharing your story.
Dear Bonnie Adamson…..thank you for writing this article which is long overdue. I am sorry to read about your experience with your husband Bill.
My husband, Harry, died of Alzheimer’s Disease in hospital – not in Palliative.
It was not a good experience for me and I constantly found myself fighting with the medical staff.
Of course, some staff were excellent especially some of the nurses. Many went out of their way to help. I still have many concerns and questions but when I try to ask, I think that they feel I am not dealing with my husband’s death so am told to “move on”.
Also, finding them was a major task. Communication was very poor – rather than sitting down with me to explain my husband’s situation and prognosis, I think they assumed that I knew. One medical person even asked me “well what do you expect”?
At one point, because of MANY requests for a procedure and NO ANSWER, I finally went to the PATIENT’S RIGHTS OFFICE. It was not long after my visit there that I got some action.
Thanks for reading my comment…… Carol Robinson……
Patient-centered “caring” isn’t about what care the professional thinks the patient needs; it is living up to the expectation that meets the patient’s and that family’s needs as Bonnie clearly outlined. Hearing more patient stories is the way to teach others who are in the health care field. We need patients to lead the way in classroom settings, speaking about how they experience their problems, not instructors who tell students what they need to know. We need patients speaking to Hospital administrators and their Boards, not employees and Board members telling others, including patients, what they can expect. We need patients to help change the system that seems so impossible to change.
Facts can be learned, empathy is more about understanding the feelings of others and putting yourself in that person’s situation by asking yourself: how would I feel or what would I want for me or my family? Leaders who demonstrate empathy will help build a system of caring professionals.
What plan are you as readers or leaders considering?
A very compelling story. The word that keeps coming up is empathy. I was recently in a meeting where a team of very thoughtful senior leaders discussed system performance issues. They observed that while people come into health care with their empathy intact, it often gets eroded in – but not necessarily by – the environment. Of all the maddening issues Bonnie described, what struck me was the clerk who refused to look up and even acknowledge their presence while answering voice mails. How does this happen? What led this person to deny the simplest of courtesies to people she knows are likely to be going through difficult circumstances? I would love to sit down with her and ask her to account for what happened to her, not simply to explain what shouldn’t have to be explained – it is unacceptable to treat people this way – but more importantly to find out how it came to be that she thought this was a reasonable approach to her job. I’m sure there are thousands of stories like this. We can speculate that many workplaces build up people’s calluses as defense mechanisms but that’s too easy an excuse. Many don’t lose their empathy (like Bonnie’s husband’s physician) and they’re working with the same system flaws. What the story confirms to me is that while we certainly need system re-engineering, we can’t re-engineer our way to human decency. That requires different conversations and different approaches.
Thank you for taking the time to write and share your story. It is difficult at times to be vulnerable but the message of need within our system for empathy and caring has been heard with your piece. I continue to repeat to students that you can not care for people until they know you care. I am not certain if empathy can be taught….I say this after 30 years teaching. I do know that it can be modelled and the culture created is definitely dependant upon the leadership.
The silos created are here because administration and clinical leadership are within their own cozy environment. Until we create one Board or governance for healthcare that communicates with our “Community hub” for social determinants we will keep getting the same product of care delivery.
So…..having said all that, I think that transition hiccups have been created with the loss of family doctors in the hospital settings, as well as, the health care system so heavily specialized. Generalism and family doctors working across locations with very good case management protected against the fragmentation I see now. It is hard work to keep an advocacy role for my patients and to be a true quarterback for them. I do this by having social work and nursing providing case navigation within my practice. I also provide hospital, LTC, house call and office practice.
We have all the ingredients we need to have a spectacular system and for this I am thankful and grateful. Now we need to work together, not protect our turf, and plan a system that we wish when we become a patient like your husband Bonnie.
Take care, Cathy
Thank you for your comment. I believe this is a system wide problem, with the way patients and their families are treated within the ‘system’. Yes, management style has an impact, positive or negative, on staff behaviours and by extension it impacts patients and their families. As managers, almost everything for an employee we can try to change, except for their personality, this cannot be changed. There is need for staff engagement from an anti-oppressive, anti-discrimination lens.
Hi Bonnie, very nicely done! Thanks for sharing. If you get a chance please read When Breath Becomes by Air by Paul Kalanithi. It could be somewhat liberating for you.
Thank you for sharing your journey and your passion for patient-centred care.
Thank you for this Bonnie
Beautiful article. Yes every institution talks the talk about being patient-centred. Few are, really. I blame management. Staff all get paid roughly between various institutions within a city or province. So the differences between institutions is management who set the tone and warmth of an institution. A couple of years ago, I had the task of bringing my wife for 32 radiation treatments at a large hospital in Montreal.(Yes she is fine!) We had to take the elevator to the 7th floor then walk down to the 6th floor treatment centre. I noticed a single french fry on a stair on Monday afternoon. (It was in that corner where the tread meets the riser) It was there still Tuesday, Wednesday. I forgot to check on Thursday and on Friday it was gone. I wonder to this day if a rat got it as I really doubt the stairs were cleaned in months. That’s management. While waiting in the waiting room, I would ‘work’ the crowd. I am a trained palliative care volunteer and just find it easy to chat with patients or their caregivers. I found it bizarre that no one seemed to show empathy to these people. Yes there were volunteers around but I wonder what they were trained to do apart from making bad coffee. It’s all about management being in touch. It is not about cost as all of these hospitals cost about the same….