Linda Campanella, OP ED Hartford Courant - January 18, 2013
A bill before the Connecticut General Assembly would legalize physician-assisted suicide. The legislature's debate about dying patients' rights should focus instead, or at least in addition, on their right to receive compassionate care. Assuming the underlying goal is to reduce the suffering of terminally ill people, then promoting quality-of-life care rather than passing right-to-die legislation is a better strategy. The number of people who stand to benefit is exponentially larger.
My terminally ill mother received compassionate care that made the unbearable bearable — for her and for the family that already was grieving her loss. For three months, a hospice team surrounded us with love and comfort.
Even in her final weeks, my dying mother woke up every morning looking forward to the living still to do. She fell asleep every night feeling grateful. She died with dignity and without pain — physical or emotional. Her caregivers understood that suffering is not just a physical phenomenon caused by symptoms of disease and pain; suffering is also caused by the existential distress people feel when experiencing anxiety, fear, loss of hope, loss of control.
The medications provided by our hospice nurse, in close consultation with Mom's primary care doctor, took care of the physical pain. The greater gift, however, was the relief my mother received from her emotional suffering — relief from the guilt she felt over having become, she believed, a burden to her family; relief from the fear she experienced when she imagined being without her family in whatever state or place she would be in after death; relief from the sadness and anxiety that gripped her when she realized she would not be here to take care of her beloved husband of 52 years.
When she died, she and those she left behind were at peace. We all were grateful. None of us had regrets.
Hospice provided compassionate, competent care for my mother's whole person — her body, her mind, her soul — and for her whole family. Too few people understand what hospice is, and too many believe it is something it isn't. Sometimes people — both physicians and families — wait too long to bring in hospice. A family that waits until a loved one is on the verge of his or her last breath is missing out on a wonderful experience. I never could have imagined just how wonderful, and might still struggle to believe it possible at all, had I not experienced the gift of hospice firsthand.
We need to talk more about death and dying. The topic should not be so taboo. We need to raise awareness about quality-of-life medicine, for body and soul, as an essential element of end-of-life care. Doctors should not think of death as a failure. When healing and cures are not possible, we need not consider the situation "hopeless." Rather, we should redefine and redirect hope in the way hospice defines and nurtures it — hope that remaining days will be lived with as much joy and dignity, and as little physical or emotional pain, as possible.
My mother, who received her terminal diagnosis on Sept. 8, 2008, and died a year and a day later, wanted to live, love and laugh until she took her last breath. So her four children and husband did everything we could to help her live fully and joyfully (and she did, till the end), and then we gave her what a close friend of mine termed a good death. Hospice helped her, and helped us, achieve what we hoped for.
This was, one might say, assisted dying as opposed to assisted suicide.
So as assisted suicide starts grabbing headlines and our attention, can we also celebrate hospice and draw attention to the compassionate, quality-of-life care that is already and readily available for the dying? Can we shine the light on the inspiring people and organizations advocating for a sharper focus on the "care" in health care and trying to establish palliative care as an academic discipline in medical schools, as a medical subspecialty for practicing physicians and as an option available in most, if not all, our nation's hospitals?
Linda Campanella of West Hartford is author of "When All That's Left of Me Is Love: A Daughter's Story of Letting Go." More information is at: http://www.lindacampanella.tateauthor.com.
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