What I learned about patient-centred care from my husband’s palliative journey

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  • Deb Graham says:

    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!

  • Jim H says:

    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

  • H. Zung says:

    “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.

  • Lisa Purdy says:

    Bonnie, thank you for sharing your story. Such a powerful reminder of the importance of the issue and the value of shifting our perspectives.

  • Betty says:

    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!

  • Kimberly Hodgson says:

    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.

  • Lisa says:

    It means alot to so many people to see you share your story Bonnie. Thank you for a powerful message!

  • Kevin MacLeod says:

    “A community working toward a worthy cause”. I like the sound of that vision. Thanks for sharing your story.

  • Carol says:

    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……

  • Elizabeth Rankin says:

    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?

  • Steven Lewis says:

    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.

    • Cathy Faulds says:

      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

    • Jad Raghunauth says:

      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.

  • Glen Roberts says:

    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.

  • Jennifer Banting says:

    Thank you for sharing your journey and your passion for patient-centred care.

  • Tom Closson says:

    Thank you for this Bonnie

  • Jeffrey Brooks says:

    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….


Bonnie Adamson


Bonnie Adamson began her career as a nurse and has enjoyed over 40 years in health care leadership,  including 16 years as a Chief Executive Officer in three organizations.

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