I am dying for patient-centred care!

Lawrence and partner

I just got bumped up to first class. I am writing this blog post while seated comfortably in a motorized leather recliner with a window view.

Other perks? 24-hour telephone access to and weekly home visits by a Registered Nurse (RN) familiar with my health situation and history. My home health care team includes a care coordinator, palliative care RN, social worker, home health aides, occupational therapist, chaplain, music therapist, and volunteers. My complete medical file binder stays at home with me for easy access by my health care team. I get expedited access to hospital admission, bypassing the emergency department. I have support for assistive equipment like lift chairs, handrails, and grab bars. Did I mention I can have nutritious meals delivered? Music therapist? Housecleaning assistance, if I am too tired? Pain management? Integrated, coordinated care?

Now that’s the first-class patient-centred care I’ve been advocating for. I would be ecstatic, except that I had to be dying to get it.

Two weeks ago when I was receiving palliative radiation to alleviate bone pain, radiology staff told me, “The social worker wants to meet you.” I wondered why. After the shock of my initial diagnosis, I had seen a social worker twice. But for the last three years of treatment, I thought I was doing very well. I was handling the emotional roller coaster that accompanies this disease with the exceptional support of a loving sweetheart, family, close friends, and compassionate providers.

The social worker said, “Lawrence, I asked to meet you because your file flags you as receiving palliative radiotherapy.” She was dynamic, compassionate and efficient, and promptly resolved some tricky coordination of care issues that had been plaguing me for weeks. She facilitated a new appointment with my oncologist, set up a referral for a second opinion about treatment options, and initiated assessment for palliative care services (I had previously tried and failed). She was coordinating my care! I was struck by how much my health provider team and I would have benefited from such support and coordination throughout my chronic disease treatment.

Now that I am officially a palliative patient, the social worker at the clinic is acting as the coordinator of care I have dreamed of and advocated for. The palliative coordinator visited my home last week, then the RN, then the occupational therapist.  I really am feeling that my standard of care, and my standard of living–or in this case, my standard of dying–has jumped enormously.

I got bumped up to the first class health services provided by palliative care providers in response to my pain, and my prognosis. From my original diagnosis, my cancer was considered terminal, and the goal of treatment was not curative but palliative, both to prolong the duration and quality of my life. Yet, until now, my care was focused almost entirely on treatment and was largely self-coordinated. I’ve been advocating a longer-term comprehensive care plan for years, largely without success. Essentially, medical decisions appear to be made one appointment at a time. Telephone access to an RN or social worker familiar with my file would have been golden, and I am betting it would have saved the system a lot of money.

Despite my dark prognosis, for the last three years, the system considered me a patient with chronic disease. I am also betting that many patients with chronic disease receive uncoordinated, episodic care without the kind of access and support we lucky palliative patients are getting.

I recently discovered that other jurisdictions do not restrict palliative care to those dealing with “a life-limiting illness.”A World Health Organization statement describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

I love the concept that palliative care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness–whatever the prognosis–and that it is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

Equally important is the goal to improve quality of life for both the patient and the family as they are the central system for care.

Forgive my return to my aircraft analogy, but now that I have been bumped up to first class (patient-centred care) I will resist being sent back to economy class (uncoordinated episodic chronic care). “Over my dead body” as the saying goes.

“Welcome aboard Mr. LeMoal. Here’s your seat, it’s a motorized leather recliner. Would you like a blanket, a cup of tea, your laptop?” Comfortably seated, I doze off, dreaming of my grandma’s cinnamon buns and the swimming hole at the Little Red River.

I am very grateful for the compassion and vision of those who advocated for the wonderfully patient-centred care we palliative patients and our families receive. What a legacy we would leave Saskatchewan citizens if we could figure out how to extend this first-class patient care to patients and their families wrestling with chronic disease.

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21 Responses to “I am dying for patient-centred care!”

  1. Alix Hayden
    March 21, 2014 at 10:40 am #

    Thank you for this post. It made me happy that this standard of care is out there, somewhere. And it made me think that if it’s to be implemented first somewhere, perhaps it is right and suitable that it should be for palliative care patients. As long as it builds out to others eventually!

  2. Gwen Curtis
    February 5, 2014 at 5:16 pm #

    Hi Lawrence,
    I want to thank-you for posting about your journey through the health care system. Working with you as my director, your vision for putting patients first was always a priority and now as a patient of the health care system, you are able to advocate in a more personal way (and may I add in a very effective way) for a system that includes patients and their families in their care. Your comments about having someone to ‘coordinate’ and navigate the system are greatly needed for everyone, not just those in palliative care. You have always been a mentor to me, and even through your illness you continue to teach me. This was a great post , keep up the great work and I agree with others who have commented on the great picture!
    Kindest Regards,
    Gwen

  3. Corinne Haack
    January 20, 2014 at 11:06 am #

    Thank you Lawrence for the very energizing post and for never giving up on trying to make a change. My mother in law passed away in 2012 from lung cancer. When we were finally referred to palliative home care our entire experience with the healthcare system changed. We had help, there was someone who knew what to do already, our family didn’t have to spend hours on the internet or telephone trying to find out how to navigate this very complex system. We had quality time to spend with mother-in-law as a family rather than as her healthcare navigators.

    I tell people that if we would have only had that kind of help from the beginning of her diagnosis it may not have made a difference in the amount of time she had left (she survived for 6 months) but it would have made a world of difference in how we were actually able to spend those last days with her.

    I’m with you let’s fight for first class all the way!
    Corinne

    • Lawrence LeMoal
      Lawrence LeMoal
      January 20, 2014 at 12:48 pm #

      Hello Corrine!
      I am so sorry about your loss. I am also very grateful that you are sharing your experience as a family member with all of us. Patient and family stories are very powerful to drive change. I am careful not to access palliative services I don’t yet need, but it is so reassuring to know they will be there when I need them. Thank you again for your contribution. I just want to note that if you had time to become a ‘patient and family advisor’ there are many opportunities to share your experience to support change. Thanks again for your wonderful comments and contribution. Regards, Lawrence

  4. Jennifer Thuncher
    January 19, 2014 at 1:48 am #

    Thank you so much for taking the time and energy to post this. What you have said is very important
    All the best for a good day today.
    I’m a reporter here in Vancouver and will pass on this post to my colleagues and friends. Thanks again, all the best.
    Jennifer

    • Lawrence LeMoal
      Lawrence LeMoal
      January 19, 2014 at 8:30 am #

      Hello Jennifer! Wonderful to hear from you. I am very much aware of the vital role that reporters and the media can play in reporting to the public and policy makers about the challenges and issues we face trying to reform the system. A Saskatoon reporter found the HQC blog and interviewed me for this story published on boxing day. Here’s the link.
      http://bit.ly/1iccnUz
      Thanks so much for your support and encouragement.
      Regards, Lawrence
      p.s. we are all jealous that you are living in Vancouver!

  5. Vlatka Tustonic
    January 17, 2014 at 1:35 pm #

    Dear Lawrence,
    Thank you for all the energy and thoughtfulness you pour into each new post- I look forward to reading them because they ground me, inspire and energize me as we move forward with the needed system-level improvement and transformational initiatives your journey is teaching us about. Looking forward to spending a week in Regina together as part of the RPIW team at the end of January- cant wait to witness positive changes your inspired contributions will make!
    Take care of yourself in the meantime.
    Best wishes,
    Vlatka

    • Lawrence LeMoal
      Lawrence LeMoal
      January 19, 2014 at 8:12 am #

      Good morning Vlatka! Thanks so much for your thoughtful and supportive comments. My sweetheart and I just got back from Saskatoon on Friday, where we had a wonderful experience meeting a senior medical oncologist who was offering the ‘second opinion’ I referred to in my blog. He was fantastic and we left completely reassured that my current care team is guiding me down exactly the right path to ensure I get the best possible outcomes. I am a very lucky patient. I can quit worrying about ‘plan b’ and focus on the upcoming conference! Looking forward to seeing you there!

  6. Jim
    January 16, 2014 at 9:06 am #

    Thank you for this post. A physician recently commented, “Palliaitive Medicine is really just good medicine!” referring to the wholistic and integrated approach to care. I think your article points to that. I have wondered though if using case managers or navigators is really only a band-aid solution to systemic problems of care coordination. Our healthcare system needs specialists but their involvement can be predicted by care pathway planning and focusing on error-proofing the hand-offs might be a better lean methodology with far-reaching effects? I’m glad that your social worker was able to assess and facilitate a systemic intervention in your situation–that’s the reality we’re in right now.

    • Lawrence LeMoal
      Lawrence LeMoal
      January 17, 2014 at 11:55 am #

      Hello Jim,
      Thank you for your really interesting observation that case managers or navigators may be only a band-aid solution. This is a credible argument and deserves a thoughtful debate. My experience as a patient tells me we patients will want a patient navigator now, and after the system is reformed. While my care is intensive, many chronic care patients are only in contact with the system 15-20 days out of 365. The rest of the time they are trying to manage their own symptoms, medications, fears, supportive self-care, and conflicting information about their illness and treatment. I will want a reformed system that has 24/7 telephone access to a supportive health care professional with direct access to my chart and can coordinate the care offered by my other health care providers, (and home visits and support). I would love to hear more about your vision for a reformed system. Thanks a lot, and best wishes for 2014.
      Regards,
      Lawrence

  7. Randall Carter
    January 15, 2014 at 5:18 pm #

    Dear Lawrence,

    First, my best wishes to you and blessings to your family as you continue your journey. Thank you for sharing your experience and hopes for health and caring in such a personal and meaningful way. I believe like you expressed so eloquently, that better is not only possible, but that remarkable is within reach. In healthcare we are all caregivers and patient-centered care can be a very effective bridge to making a difference for patients, families and the care-giving staff.

    Your message and efforts will make a difference. I know they did for me today.

    Thank you again and kind regards, Randy

    • Lawrence LeMoal
      Lawrence LeMoal
      January 15, 2014 at 7:20 pm #

      Hello Randy,
      What a wonderful and encouraging email! When I worked in health policy, I understood the power of models to demonstrate innovation. I used to advocate for patients having telephone access to a Registered Nurse, social worker, or other health care professional who could coordinate care. But, actually having that access and coordination now as a palliative patient, is enormously comforting. Remarkable, as you put it. Thanks so much, Regards, Lawrence

  8. Cindy Dumba
    January 15, 2014 at 5:45 am #

    Lawrence,
    Thankyou so much for sharing the story of your journey and also for the great work you have done and continue to do. I too, am am touched and inspired by your determination to make positive change toward patient and family centred care. I’m happy to hear you have been “bumped” and I look forward to learning more from your blog. Take care……..Cindy dumba

    • Lawrence LeMoal
      Lawrence LeMoal
      January 15, 2014 at 3:36 pm #

      Hello Cindy,
      I am so grateful for your supportive comments and your enthusiasm for patient and family centred care. I had no idea how rewarding it was going to be. Despite my condition and prognosis, I know how lucky I am. Take care, and let’s stay on the sunny side with all these great patient-centred care advocates.
      Regards,
      Lawrence

  9. Millie
    January 14, 2014 at 3:21 pm #

    Dearest Lawrence,
    You and so many others so deserve “first class” treatment with all you need to deal with. I’m praying your journey will be better now that you’ve been “upgraded”. Love the humour and grace with which you write!
    All the best…sending huge hugs,
    Millie
    ps. Great cover pic!

    • Lawrence LeMoal
      Lawrence LeMoal
      January 15, 2014 at 3:41 pm #

      Hello Millie!
      It’s a wonderful and welcome surprise to hear from you. Thanks so much for your support, positive energy, and your kind words. Huge hug back to you, and I hope 2014 turns out to be one of your best years.
      Regards,
      Lawrence

  10. Heather Thiessen
    Heather Theissen
    January 14, 2014 at 12:18 pm #

    Lawrence

    Thank you so much for all you are doing. I hear first class is the way to go and I am so glad you are finally receiving this.

    I agree that we need to find a way to make sure all people who deal with chonic health conditions receive this exceptional treatment as well. I am glad I am on this journey with you and we will see it happen. It maybe a battle but I am up for it and will help you as well.

    You are truly an ispiration and thank you for being so honest with all who read this. It is this honesty that will make the changes we want in patient and family centred care.

    Keep comfortable my friend.

    Heather Thiessen

    • Lawrence LeMoal
      Lawrence LeMoal
      January 15, 2014 at 3:55 pm #

      Hi Heather! You are so thoughtful and kind! I need to credit you publicly with encouraging me to follow in your footsteps-I saw you dedicating so much of your time and energy to being an articulate and passionate voice for patients.

      I am currently searching for tools to support patients and providers to manage their chronic disease. I have found self-management tools for patients, and chronic disease management tools for providers, but none that are truly joint or co-management tools. Let’s keep chatting and exploring! I need your positive energy boosts! Regards, Lawrence

  11. Catherine Delaney
    January 14, 2014 at 11:08 am #

    Thank you Lawrence – I feel honored and humbled to join you in your fight for truly patient-centred care. Thank you for inspiring and challenging those of us who work in health care, and those who receive health care.

    • Lawrence LeMoal
      Lawrence LeMoal
      January 15, 2014 at 4:11 pm #

      Hello Catherine,
      Thank you for your wonderfully supportive comments. I am so grateful to be welcomed to, and immersed in this community of ‘positive energy people’ like you who are working so hard to re-orient the health care system.
      Thank you!
      Regards,
      Lawrence

Trackbacks/Pingbacks

  1. Saskatchewan loses champion for better, safer care | BetterHealthCare.ca - January 12, 2015

    […] blog hosted by Health Quality Council. A pair of his posts were among the Top 5 published in 2014: “I am dying for patient-centred care” (Jan 14/2014) and “Engaged patient getting married” (Apr 15/2014). At the 2014 Quality Summit […]

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