Journal of Sacred Work

Caregivers have superpowers! Radical Loving Care illuminates the divine truth that caregiving is not just a job. It is Sacred Work.

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Sistine
   Michelangelo. The ceiling of the Sistine Chapel. God reaches out to hand the gift of life to Adam. We took our own first breath, probably a cry, and entered this world kicking and screaming. But how long will our journey last? And when will it end?
   How would you like to die? Perhaps you played the ghoulish game as a child? I did. My friends and I argued about which would be less painful – freezing to death or burning to death? What about drowning, a firing squad, the electric chair, falling off a cliff?
   There really is no good way, is there? Actually, everyone I’ve asked agrees that there is. All ten respondents in my informal questionnaire said about the same thing: They’d all like to die peacefully, in their sleep, at an old age. And they’d like their loved ones nearby…

   Nobody wants to die a painful death. No one says they’d like to die hooked up to machines in a hospital intensive care unit, a tube jammed down their throat.
Sistine_hands
  So why do so many people die this way? I think there are at least three reasons: 1) The Puritan-Catholic ethic shouts at us to hang on to life, even to suffer, rather than to give up and die, 2) the medical-industrial complex is geared to use its technology to save us (and to charge us for it!) 3) Families and patients often cannot agree when it’s time to stop treatment and turn to comfort and dignity.
   And there’s one more thing. Up until recently, there have been no good alternatives to hospital care for the terminally ill.
   In 1974, in New Haven, Connecticut, the best choice finally emerged. The first American hospice began service. A year later, Alive Hospice opened in Nashville. Since then, over three thousand hospices have begun operation coast-to-coast.
   Still, most people wait to long to avail themselves of the hospice option. It’s a tragedy. In 1982, from a distance, I was aware of my grandmother dying in pain from cancer. My efforts to bring her palliative care were thwarted by relatives and doctors who withheld vital pain relief. "They’re afraid she’ll become addicted," my uncle reported. Imagine that, a 91-year old drug addict!
   Just a quarter century later, doctors are still slow to introduce needed pain relief to dying patients. Hospice knows how to solve these problems. And organizations like Alive Hospice solve them with Radical Loving Care.
   When it’s time to make our exit, the touch of life we received from God can now be matched by hands of love from hospice caregivers supporting us in our last days.

-Erie Chapman

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8 responses to “A Good Death”

  1. Karen York Avatar
    Karen York

    I am blessed to be a part of this organization who walks the talk of “providing loving care to people with life-threatening illnesses…” A humble tribute to all of my colleagues who lovingly give exquisite care.
    Karen York
    Alive Hospice

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  2. Tom Knowles-Bagwell Avatar
    Tom Knowles-Bagwell

    I think it is folks like Karen who, through the years, have made Alive Hospice the kind of loving and cutting edge organization that it is. I think that when that time comes for me I hope to be “surrounded by love” no matter how the end comes.

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  3. Jan Jones Avatar
    Jan Jones

    Thank you so much for lifting up the loving work of our staff and volunteers, Erie. I pray that I have the gift of hospice when my time comes and I am incredibly blessed to be called to this work.

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  4. liz Wessel Avatar
    liz Wessel

    How extraordinary to learn that Alive Hospice helped pioneer and lead the hospice movement in our country. Many thanks to the Loving leadership of Karen, Jan and to the giftedness of so many Loving caregivers.
    Somehow, we imagine that if we do not think or speak of death we can wish it away. These days cancer is viewed more as a chronic illness versus a death sentence with advances in technology and medicine. However, when treatment is no longer effective patients and families may desperately grasp onto false hope and continue trying to beat the odds until their last dying breath. This may result in prolonged suffering and an unnatural death experience in unfamiliar hospital surroundings.
    I am so sorry to learn of your grandmother’s experience and I wish I could say that no one else would suffer a similar experience today. Unfortunately, because of fear, denial of death, and misconceptions about hospice many patients and family members do not benefit from receiving hospice until a few days before death. The 6 months prognosis criteria and limits on curative treatment are significant barriers that block access to hospice care. Advocacy legislation efforts are needed to change the restrictive Medicare benefit requirements.
    Home health palliative care offers an attractive alternative for patients/families that are not yet ready for hospice. Palliative services can provide advanced pain and symptom management and compassionate care but unfortunately, the program lacks many of the holistic services of the hospice model. Often palliative care is a stepping-stone that helps ease the transition to hospice.
    I have heard of some new innovative programs that offer patients open access to hospice, and simultaneously allows for curative treatments to continue. Any program that removes barriers to care makes a lot of sense to me.

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  5. Karen York Avatar
    Karen York

    A note to Liz:
    Alive Hospice does have an open access philosophy of care. People are dying who need hospice care and we remove as many barriers as we can so that they can receive our service.

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  6. liz Wessel RN, MS SJHS Home Health Network Avatar
    liz Wessel RN, MS SJHS Home Health Network

    Thanks Karen, for your feedback. To clarify, when I say “open access” I mean, able to receive treatments such as chemo, blood transfusions, and things hospice traditionally can not afford to provide.

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  7. liz Wessel RN, MS SJHS Home Health Network Avatar
    liz Wessel RN, MS SJHS Home Health Network

    For anyone who might be interested here is the website for Providence Hospice (open access)
    http://www.providence.org/Long_Term_Care/Hospice_of_Seattle

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  8. liz Wessel RN, MS SJHS Home Health Network Avatar
    liz Wessel RN, MS SJHS Home Health Network

    whoops…part of the web address cut off…last word is Seattle

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