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Moral Distress in Healthcare: the Value of Dying with Dignity Pt. 1

October 22, 2009 by admin  
Filed under From Our Members

This is the first of a four-part series by 10 Million Clicks For Peace contributor, Corry Roach. We will feature the remaining 3 parts over the next three days.

Last month, I watched my only sister lose her battle with Acute Lymphoblastic Leukemia, after complications from severe post graft versus host syndrome infection after a stem cell transplant. It was five months from diagnosis to her death at 46 years of age. As she was a brittle diabetic since birth, I became more of a mother to her than a sister over her lifetime, as nearly a decade separated us in age. It was almost like losing another child for me.

In 1983, as a bereaved young mother to my infant daughter, I sat in on a lecture by the late Dr Viktor Frankl, which dealt with ethics around thecare of ill and premature babies, and the value of dying with dignity in those situations.

I had issue with the fact that, despite our insight and progress in technology in healthcare; we were losing sight of holistic care of the humanperson, physically and emotionally as well as intellectually and spiritually. It appeared to me that the further we progressed technologically, the more we regressed in our compassionate care of the dying person and their families.

There is no doubt that I spoke at the time from the place of a broken hearted mother.  Perhaps I was too young, naïve or afraid to speak my truth out how we deal with dying in our western culture back then. Now, a few years past a half century in age and well into menopause, that part of me has changed considerably!

Despite this fact, however, I don’t feel that my concerns had any less merit. This same concern arose again with the death of my sister.

It is my hope that I am able to convey both my respect and concern when I share my impressions with you today. I sincerely and humbly encourage you to internalize what I am about to share with you, both with your intellect and with your heart, as both are necessary in this approach of holism.

I am aghast that, after 25 years since my baby died; there appears to be little change towards the question regarding the value, meaning and humanity in being allowed to die with dignity, if I respond with painful honesty to what happened with my sister last month.

I wanted to secretly take photographs of her dying body; bleeding, blistered and burnt beyond recognition, since my fear was that no one of consequence would believe me.

I recall feeling the same way when I asked Dr. Elisabeth Kubler Ross to look at the only two photographs I have of my beloved baby, who physically looked very similar as a result of a severe megableeding disorder. Elisabeth’s initial response was to dismiss them as well.

That was before she caught a glimpse of the images, and then she gently took them from my hand.  Asking if she could pass them around to everyone in the room, she said, “Especially health care professionals need to see this, to ensure that other little babies will not suffer as your baby did. This must not be allowed to happen again.”

Well, it has happened again, and in my family. Ever one to find deeper meaning; I see this as an opportunity to become an advocate for patients who need to die when their suffering becomes obscene, and they somehow are not able to make their request known or respected.

There can be reasons for this due to extenuating circumstances, as was so with my sister. I believe the fact of her being diabetic complicated sending her to palliative care when she was on insulin via PIC line. Although she got analgesia through this line as well, the continuous infusion prolonged her inevitable dying process, too. I understand how these issues make things more challenging to give optimum care.

On one of my last visits with her, she looked like a taller version of herself as a newborn, except that she was horribly blistered, burned and in terrible pain from the caustic treatments. They were making her desperately ill, with half hour cycles of retching, nausea, vomiting, abdominal cramping, and bloody diarrhea along with fever and chills. Flaps of skin from open blisters hung from her torso, neck, arms and hands. Tears,

staining white against her ruddy burned cheeks, coursed into the corners of her mouth. In her pain, they would spurt from her eyes, but I could not wipe them, as her skin would invariably come with it to create more bleeding. The mucous membranes of her mouth, eyelids and intestinal tract were so scorched they too came away, leaving her raw and bleeding; inside and out.

As I crouched beside her after another bout of dealing with the brutal side effects, I commented to her about her quiet, pensive expression. After a long moment of silence, she said softly, “I don’t know what else I can do to help myself…”

It was the perfect opening into our discussion about her desire to die. The dialogue around the unspeakable began to mold and take shape from that one sentence, empowering her to listen to her own heart’s desire.

I am enraged and sickened as a person, and stunned and mortified as a nurse that this kind of thing can continue to occur, even in 2008. We are ever expanding our knowledge with regard to science and technology, but we spend less time being human in giving compassionate care to the dying and their families.

Time spent on computers is time spent away from the pain riddled, desperate and often fearful patients who cannot articulate their needs swiftly enough for the busy medical and nursing staff. They, in turn, don’t have time to internalize what needs to be done to meet the patient’s personal/psychological/spiritual needs instead of the technological demands of the machinery attached to the physical patient.

Although I spent nine hours with my sister while she was ravaged by the effects of the treatments, I could not embrace her to bring her comfort; it was too painful for her to be touched. Blinking her eyes caused her severe pain. We could not clean anything to attempt to rid her of the cancer smell.  Maintaining an airway had to be done without suction, again due to bleeding. Her head was wrapped with J cloths to stop the serous fluid oozing from her scalp, leaving a copious stain on her pillow every few hours. Sometimes she physically shook as her teeth chattered with pain.

My daughter, who is a post graduate nursing student, and I resorted gratefully to our practise of alternative therapies of Therapeutic Touch and Reflexology, and our gentle intervention calmed my sister so she could deal with her pain more effectively…so we could have that discussion.

I somehow already knew it to be the reason behind our visit. Call it intuition, my spirit knew. My love knew.

My sister wanted to die.


Corry Roach’s website, www.ByGraceofMourning.ca offers personal and professional insight and education into the grief journey for those who mourn, from professionals to the bereaved and all who love them. Although the main focus is bereavement, loss of loved ones (or parts of ourselves) to terminal illness, dementia, aging, divorce/relationships/addictions are also discussed, as well as how to offer support. Grief resolution within ourselves is imperative, enriching our lives with personal empowerment as we work toward a life of spiritual meaning and inner peace.

Julian Kalmar and Rick Beneteau want to know if you've got what it takes to step up and be a leader in the new world transformation. CLICK HERE to find out.

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