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(HealthNewsDigest.com) – As a vocal advocate for palliative care and hospice, I hear occasionally from individuals who want me to know their hospice experience was not the sort of “gift” I describe my own family’s experience as having been. I do know that not all hospice experiences are positive, and it saddens me whenever I learn about one that wasn’t.
It saddens me even more, though, to imagine the large number of people who don’t even consider hospice an option because they assume it’s something it isn’t or because their physicians don’t make a timely referral. For too many doctors a referral to hospice is perceived as failure, and consequently medical interventions to prolong a terminally ill patient’s life continue. So often it would be far more compassionate to cease life-extending but futile and often painful treatments in favor of palliative care where the focus is on quality, not quantity, of living.
The person who wrote to me most recently claimed that Brittany Maynard, the 29-year-old who moved to and died in Oregon, where physician-assisted suicide is legal, “did it because she was diagnosed with terminal brain cancer and knew exactly how she would die–become blind, lose some of her senses, become paralyzed, etc.” She really knew this?
No one can know exactly how he will die. My mother had lung cancer with metastatic tumors in her brain — first four and then 11 by the time of her last scan. As soon as the terminal diagnosis was delivered, she feared losing her capacity to feel and express emotion, especially her ability to love and laugh. She feared this almost more than she feared the possibility of excruciating pain. Certainly such loss was a strong possibility, but she could not know that it would happen. No one could.
My mom got lucky. She was herself mentally and emotionally until the end, and the pain was controlled. Her goal had been to live each day to its fullest, even when “full” needed to be recalibrated based on physical limitations toward the end. Hospice helped her do what she wanted to do: live (and laugh and love) until she could die peacefully, with dignity and without pain, at home and on her own terms.
Another fear my mother experienced after her diagnosis and as her disease progressed was that she would be a burden to her family. Our hospice team, especially the spiritual counselor, was brilliant in disabusing Mom of the painful misconception that she was a burden to us. We were grateful to be able to care for her and birth her into death the way she birthed her four children into life. Did caring for my mother extract a huge toll from us? Yes, it did. But we also felt so privileged to be able to help her achieve her goals for coping with terminal illness and for dying.
I do worry that one of the hidden, often unacknowledged risks associated with physician-assisted suicide is that it will be used by the dying to relieve their caregivers rather than their pain (data from Oregon certainly seem to confirm this) or, worse yet, that it will be pushed as an option by the caregivers themselves, who reach a point where they, rather than the dying patient, are feeling “I can’t take this anymore.” Let’s admit it: this could happen.
In speaking out on this subject, my motivation is not to argue against physician-assisted suicide, but rather to enlighten people who may be ignorant of the compassionate, patient-driven end-of-life care that hospice, in more cases than not, provides. I am certainly not, as one person who wrote to me recently suggested, “deciding how a patient should die” or saying I believe I have “the right to make such choices.” Not at all. Rather, I am fervently hoping that people who find themselves needing to make these choices for themselves will make informed choices.
I am grateful for the choice my family made and for the physician who had the courage and compassion to make a referral to hospice when my mother still had months to live. Hospice made the unbearable bearable – not only for my dying mother, but also for those of us injecting living into her dying and preparing to let her go.
Linda Campanella of Connecticut is author of “When All That’s Left of Me Is Love: A Daughter’s Story of Letting Go.” More information is at www.campanellabooks.com A bill to legalize physician-assisted suicide is currently being debated in the Connecticut Legislature.
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