Opinion

End-of-life care – Infusing the ‘person’ back into the ‘patient’

Humans are uniquely individual. We are born with a set of genes and then our life experiences add colours to this exclusive palette. More than ever, this diversity is to be celebrated. Sadly, the value of individuality is not translated to our health-care culture.

When a person gets diagnosed with a serious illness and enters into a necessary relationship with the health-care system, a series of unintentional forces begin to chip away at a person’s lifelong sense of self. What distinguishes one person from another is no longer admired; by the end of an illness journey, individuals are reduced to mere shadows of their former selves.

Contrary to popular belief, most people will not die suddenly when “their time comes.” More ordinarily, a person will receive a diagnosis of one or more common illnesses that will usher them through the last chapter of life. Depending on which one, the last chapter of life could span months to years. If they haven’t required medical attention previously, this may be the first time a person interacts with the system of health care. At this precarious and precious time of life, the greatest risk to our personhood begins. The illness will certainly take its piece of us along the way, but this is outdone by the sterilization inflicted on individuality by the (health-care) system.

Why is this so?

There is a fundamental mismatch between individuality and standardization. The former distinguishes one person from another; the latter is predicated on “sameness.” The age-old problem of a square peg in a round hole.

To start, when a person has an illness, the person is relabelled as a “patient.” The patient steps onto the conveyor belt of health care and a process of disinfection begins.

I know this because as a palliative care doctor, I catch patients at the end. Most people I meet feel unrecognizable. This is no surprise given they have been reduced to parts during the illness.  I imagine in my mind that they were flowers when they became ill and over time lost their petals; when their trusted health-care provider exclaimed “there’s nothing more we can do for you,” they became limp.

At the 11th hour of life, I try to “water” them. This is an ironic choice of words given that we spend so much time explaining that dying people do not need fluids for comfort at the end of life.  But that’s what it feels like to me. I have been taught how to infuse the “person” back into the “patient” – we refer to this as palliative care. This is often too little, too late.

Our health-care system threatens individuality. Outcome measures overly focused on efficiency, risk management and the financial bottom line prevail. Person-centred care is blurred in this equation.

Palliative care consultation always starts with a version of “tell me your story.”

This is why a palliative care consultation always starts with a version of “tell me your story.” Harvey Chochinov, distinguished professor of psychiatry, suggests that we ask every patient “what do I need to know about you to be able to provide you the best care.” An attempt to keep the person intact.

As a palliative care physician, I find myself at odds with the current culture of health care. I am alarmed to receive one flower after another, wilted from iatrogenic and systems suffering. Sometimes I’m not sure which is worse, the illness or the “treatment.”

Each and every one of us will at some point become a patient or a caregiver. When it comes to the final chapter of life, a phase of life called dying, these roles (patient and caregiver) deserve the skills and knowledge to journey through the defining illness with every chance to mitigate the hazards of the health-care system. It is alarming that people put their blind faith in the health-care system and learn to take on a passive nature in their new role as patient or caregiver. But this is what makes standard care so seductive to the system. Passivity breeds “sameness.”

Over our lifetime, we become unique from one another. At the end of life, we are at risk of losing our sense of self because with the diagnosis of an illness, we begin a problematic health-care journey at a time when the preservation of “me” is so very important.

If we consider that most of us will find ourselves in this dance with health care, it behooves us to get ready. Being a patient is foreign to most and typically comes with no warning or guidebook. Well, now you’ve been warned and finally there is a guidebook, which I co-authored with Hsien Seow, Hope For The Best, Plan For The Rest.

 

 

 

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11 Comments
  • Mike Fraumeni says:

    Fantastic that palliative care physicians such as yourself and Dr. Seow, who I had the pleasure of meeting at one point in my working career, exist to care for patients and families towards the end of life. Learning of patients such as Allison Ducluzeau, see link below, who are not receiving the care with very serious illness is heartbreaking. This guidebook will surely be a welcome resource for so many. Thank you.

    “‘It was that or go home and prepare to die’: Canadians on why they sought surgery outside the country”
    https://www.ctvnews.ca/health/it-was-that-or-go-home-and-prepare-to-die-canadians-on-why-they-sought-surgery-outside-the-country-1.6515414

    • Sammy Winemaker says:

      Thank you for sharing!!!!!

    • Allison Ducluzeau says:

      Hi Mike, thank you for mentioning my story in your comments. I am trying to do all that is possible to increase awareness regarding our failing healthcare system and to help others faced with similar circumstances. Getting the word out like this really helps. Allison

  • Jane says:

    Dr. Winemaker continues to peel back the problematic layers of our Health Care System.
    It’s my fervent hope that ‘The Waiting Room Revolution’ catches fire so all of us future patients and our families, and everyone working in Heath Care can benefit from her wisdom.

  • Ruvan Waltman says:

    Excellent article….really distills the dilemma clearly and offers hope to everyone who needs it, WHICH IS EVERYONE!

  • Katherine Arnup PhD says:

    Thank you so much for this article and for your book. I received a PDF copy of the Hope For The Best when my sister-in-law was in the last stages of stage four breast cancer. Though I wished it had appeared earlier in her illness, the book was nonetheless an invaluable resource for us in helping to keep Amy at the centre of all our conversations and plans. I read it while she slept on the couch and scribbled notes and questions for myself. It helped to guide me and my partner as we cared for her till her death. I recommend this book wholeheartedly and thank you for your wisdom and caring.

    • Connie says:

      How do I get a PDF copy of the book?

      • Sammy Winemaker says:

        Hello Connie,
        On September 19 our book comes out in paperback, e-book and audio book. You can even pre-order it now from Amazon or any bookstore. We would love to hear your feedback!

    • Sammy Winemaker says:

      Thank you soooooo very much! I can’t tell you how much it means to hear this. Kind of feedback from early readers like yourself. I’m so very sorry for the loss of your sister.

Authors

Samantha Winemaker

Contributor

Dr. Samantha Winemaker is an associate clinical professor at McMaster University in the Department of Family Medicine, Division of Palliative Care, and has held multiple leadership roles including McMaster Postgraduate Curriculum Lead, Hospice Medical Director, Regional Palliative Clinical Lead and Medical Lead Palliative Care Outreach Team.

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