Opinion

A tale of two patients: The ‘postal code’ lottery of palliative care

Leave a Comment

Your email address will not be published. Required fields are marked *

25 Comments
  • fluconazole says:

    Palliative consideration is a particular clinical consideration that centers around giving patients alleviation from torment and different indications of genuine sickness, regardless of the analysis or phase of the illness. Palliative consideration groups mean to improve the personal satisfaction of the two patients and their families.

  • RuthAnn Doyle says:

    I fully support the idea of hospice. Being a nurse for many years, I fully understand the need. What I do not understand is why hospice care does not include MAID,if that becomes the patients wish. To transfer a dying patient to a different location to access MAID seems beyond cruel, and not upholding the hospice mandate to provide kind and compassionate end of life care. I feel strongly that this needs to change, having just gone through this situation with a loved one.

  • Margie McCurry says:

    THE COVID-19 EPIDEMIC has made us very aware of the “seasons” of our lives: from our birth in “spring,” until our death in “winter.” But how does one care for a TSERMINALLY ILL person? Here’s help!
    — Dr. Gerald D Griffin, a hospice physician, humanely discusses the needs of a terminally ill person, in “The Last Day of Winter: Secrets from the Seasons of Dying,” the book he has written with his co-author, medical social worker Pam Umann. Read it before you need it! Buy it wherever books are sold – or you can get it on Barnes & Noble, Bokus, Thriftbooks, or on Amazon.
    — These authors know, very personally, what they are writing about. The two experienced medical professionals hold the reader’s hands and lead them through life’s most difficult passage — helping the patient, the patient’s family and friends, and the patient’s caregivers, by exploring the needs of the terminally ill patient. The 200-page book educates readers about potential barriers they may encounter, while either providing or receiving needed care and support. Personal stories of triumph, isolation, fear, and grief are shared – equipping readers with the knowledge that they are not alone on the journey.
    — The easy-to-read book begins in the metaphysical September, with feelings of apprehension as the disease process begins, and ends on the last day of Winter in the terminal phase. “The Last Day of Winter” helps readers understand the importance of the relationship between each individual and the cycle of life – and between loved ones, as they face the “last day of winter” together.
    — You can buy it on Amazon at https://www.amazon.com/Last…/dp/1948738414/ref=sr_1_1..

  • Sharon & Gary Pattison says:

    This is LONG OVERDUE, we must learn from our Past!

    But, then again, we are 80 & 77 years young, with natural aging medical problems and one of us with a compromised immune system!
    We Pray we will have a great end of life health program waiting to welcome us and to see us on our final road of LIFE,
    Gary Anthony and Sharon Dianne Foster Pattison!‍

    • Darren Cargill says:

      Thanks Sharon and Gary.

      You shouldn’t have to pray for something as basic as appropriate end of life care.

  • Joan Eaglesham says:

    Dr. Carroll, Once again you have eloquently stated the case for palliative care focus/funding. Thank you, I’ll be sharing your piece widely. What we need now is some concerted advocacy across the province to ensure that the message is heard (and acted upon) by our policy makers.

    • Darren Colin Cargill says:

      Thanks Joan.

      Please share.

      I was texted by a colleague of mine who works in one of our local hospitals. She told me that her father died under similar circumstances as John. I am sure there are many, many more stories like this.

      It is time to stop accepting this as the status quo.

  • Denise Connors says:

    Thank you for writing this powerful advocacy piece and for the skill and caring you bring to your patients and their families. All Canadians deserve the same access and quality of care.

    • Darren Cargill says:

      Thank you Denise.

      I agree. All Canadians do deserve the same access and quality of care.

      What’s stopping us?

      • Abhi Mukherjee says:

        Thank you Dr. Cargill for a very compelling piece. I cannot find any argument to refute your advocacy. Other than the humanity, the Return on Investment (the “beautiful side effect” as you refer to it) makes this a ‘no-brainer.’ And yet, here we are…

        You have been brutally honest in your piece …. what would you speculate is the real reason we (“we” as in our society, our politicians, our healthcare administrators) have not prioritized investment in palliative care over the years?

        Sad as it is, the George Floyd murder has given wings to the Black Lives Matter movement, and hopefully there will be changes in society as result of that outrage. As a parallel, what do you think would trigger us to shift our perceptions about palliative care in Ontario?

      • Darren Cargill says:

        Hi Abhi,

        I would speculate that palliative care has a PR problem. We live in a death fearing society. As such, we have a bias towards medicine that can cure and prevent death. It is much easier to advocate for expensive medications, treatments and technologies aimed at curing and treating disease than “admitting defeat” and funding palliative and end of life care. It requires a paradigm shift in thinking.

        I plan to write about this PR problem in the future.

        Re: George Floyd and BLM. Sadly, I have often said it would take someone very important or the loved one of someone very important to die poorly to finally bring attention to this issue. I hope that won’t be necessary. So far, professional, compassionate, humanistic and economic arguments have not been enough to sway the tide.

        Thank you for your question.

      • Abhi Mukherjee says:

        Thank you Dr. Cargill for your response. Please continue your advocacy. I would be happy to join in and help in your mission – please let me know how I can connect and help.

      • Darren Cargill says:

        Share this wide and far. Stories tend to resonate more than facts and figures.

  • Susan Burrows says:

    I am a palitive patients daughter, whom as a family decided along with the patient to stay at home for the end of life.
    For the most part my mothers care from nurses, psw and palitive doctor have been okay. As for our main nurse she is good but neglected to inform the family of what LHIN would assist with from a hospital bed to supplies. I have to be in constant contact with the coordinator for guidance and assistance.
    I know with COVID being apart of what we have to deal in our world today makes things tougher but come on should the lack of common curticy be ultered…..
    I would love to become an advocate for patients & their families if someone could advise me.
    I honestly believe in my heart that any palitive young or elderly are our heros and deserve the up most respect throughout their journey.

    • Darren Colin Cargill says:

      Hi Susan,

      If you are interested in caregiver advocacy, reach out to @MaggieKeresteci on Twitter. You won’t find a better person to guide you on that issue.

  • Tessa Mancini says:

    What a wonderfully articulate piece. I am very proud that the University of Windsor has created a Palliative Care course as part of its BScN program in fourth year. It is encouraging to see that the efforts being put forth by yourself and your colleagues are being met with success. Having used your home-care program five years ago, it is exciting to see this increase in awareness and comprehension for future generations of healthcare workers.

    • Darren Colin Cargill says:

      Thanks Tessa.

      Although I write from a physician perspective, I cannot emphasize enough the importance of nursing in palliative care. Whether it was the nurse educators at our hospice, the home care nurses through CCAC or many others, nursing is a cornerstone of palliative care. We are very proud to help educate and teach future nurses at the Hospice of Windsor. I wrote previously in Healthy Debate about the need for basic competencies for all healthcare providers. UWindsor is certainly helping to lead the way.

      Having said that, there are still tremendous gaps in the system and that is the cautionary tale of John’s story. Sadly, he is the rule and not the exception.

  • Voytek Roszuk says:

    Excellent article Darren. Always humbled by what you and your colleagues do. Palliative care needs support otherwise it cannot support those that need it. There should never be a blue pill.

    • Darren Cargill says:

      Thank you for your kind words Voytek.
      I have always appreciated the support you and the OMA have provided me and my colleagues.

  • Kathy kastner says:

    As a patient – who advocates for, and actually understands that palliative is not a euphemism for ‘nothing more can be done’ – I humbly submit that there is still work to be done to ensure this is bottom up/top down understanding. That, and, in the fullness of time, to have #palliativecare consistently available and practiced to a consistent standard/staffing.

    • Darren Colin Cargill says:

      Thanks Kathy. As always, you are a great advocate for palliative care.

      • Carolyn Gagnon says:

        As a volunteer at Hospice I found your article most interesting & very informative, please keep doing what you do so compassionately, the Hospice needs more like you.

  • Darren Colin Cargill says:

    Look forward to your questions, comments or gratuitous insults 🙂

    • Ashka says:

      Your article is so timely and articulates what I feel in the field.
      Thank you.
      I am about to quote you to a palliative care manager to advocate for adequate resourcing.
      Thank you again, paed pall care nurse in the ACT

Author

Darren Cargill

Contributor

Darren Cargill, MD FCFP (PC) FRCPC HMDC CCPE Medical Director, Hospice of Windsor and Essex County Inc., Adjunct Professor, Western University. Past Chair, OMA Section of Palliative Medicine.