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My Life Preferences® Field Study Participant Comments |
“This instrument is clear, easy to understand, and contains questions with clearly opposing thoughts. It gives physicians what they need to make yes versus no decisions. Thanks for writing this!!” (Emergency Room Physician, Chair of Clinical Ethics Committee)
“MLP resolves many questions bioethicists have struggled with for some time. You have created a gold standard for end-of-life planning.” (Senior Member, Clinical Ethics Committee)
“I have Power of Attorney for my mother who has been comatose since a stroke six years ago. She had never talked to me about her wishes. I am always agonizing and guessing what she would want. I don’t want my kids to ever go through what I have gone through. This instrument lets me do that.” (Homemaker)
“I was required to complete Five Wishes before a recent surgery. Your instrument is far more sophisticated and comprehensive. It lets users say exactly how they feel, and does not force them into yes/no choices that do not reflect their full thinking.” (Retired Fortune 500 Executive)
“This is the first instrument I have ever read that completely meets the concerns of Catholic ethicists who must deal with ever changing definitions of what are “ordinary” versus “extraordinary” means of sustaining life.” (Certified Catholic Ethicist)
“When I was about 50 years old, my mother called me aside and gave me a notebook in which she wrote every detail of what she wanted upon reaching end of life. The rest of the family considered it quite gruesome, but it was easy” she added with a smile of satisfaction. “I knew exactly what she wanted and simply followed her instructions. You are doing for others what my mother did for me.” (Homemaker)
“I held Power of Attorney for my father who I knew was dying. His doctor told me he had developed a kidney infection and that they needed to run a tube to apply antibiotics directly to the site of the infection. I asked what this would accomplish. The doctor lit into me saying ‘I have been your father’s physician for 20 years and know what he would want!’ I reluctantly agreed to the procedure. Three days later my father was dead. To this day, I still kick myself for allowing the physician to intimidate me into putting my father through this.” (Teacher)
(Note: I am not qualified to assess medical judgment. I only know that there are often strongly held and conflicting views among physicians facing difficult decisions like this. The sadness for me is that this highly educated professional still encounters flashes of guilt decades later. The team approach used in MLP was designed to protect POAs from recurring self-doubt and guilt that can plague them for life.)
Notes about the field study: 17 individuals participated in the field study. They included an ER physician, family practice physician, internist, Catholic priest with ethics committee experience, nursing home administrator, Certified Catholic ethicist, hospice care nurse, clinical social worker, psychologist, social sciences teacher specializing in diversity, nurse administrator, nurse practitioner, Fortune 500 executive (chemical industry), and individuals without secondary degrees. Participants were asked to comment on 1) completeness in covering all end-of-life decision points, 2) overcoming fear to think or talk about end-of-life issues, 3) ease of use, 4) effectiveness in allowing users to convey their exact feelings.
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