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davidicuswong As a teenager, Susan couldn’t wait to move out to escape from her domineering sister. She eventually married a loving husband and raised three children. When her youngest daughter graduated and moved out, she thought her parenting days were over. But five years ago, her father was diagnosed with Alzheimer’s, and with this progressive form of dementia, he became increasingly dependent. At first, he needed help with money management, housekeeping and cooking. He lost his driver’s license, and after he got lost taking the bus, she drove him everywhere. Eventually, she accompanied him to every doctor’s visit. She supervised his complicated medication schedule, laying out the blister packs each evening, ensuring all the day’s pills were taken, and calling him from her office to remind him of the morning and noon doses. She was doing more laundry now than when her kids were home. Her dad’s underwear and trousers were soiled from incontinence. Susan loved her dad, and didn’t mind giving him whatever he needed, but she was feeling burnt out and she re-
sented her sister who did little to help. She was also worried because her father would soon need to move to a long-term care facility. He had planned to live in his home for the rest of his life. She dreaded having to lock horns with her sister in sharing the decision-making regarding these living arrangements, his finances and his medical care. Through their lives, they could never agree. But Susan faced her greatest heartache every day when her father would talk about her mom as if she was still alive. She once corrected him, and reminded of the terrible grief he relived at that moment, she couldn’t put him through that pain again. Her father had taught her to be honest, and she wondered if it was OK to lie to him now and what the father of her childhood would have thought about that. The ethical framework of medicine is centred on autonomy—the individual’s freedom of choice. Informed consent requires that we explain the risks and benefits of various treatment choices and not subject patients to treatments and investigations they do not choose. The principle of truthtelling directs us not to deceive or withhold important information. It can conflict with the first rule of medicine—to do no harm. With Susan’s father, reminding him of his greatest loss caused him unnecessary emotional distress with no benefit. During my 10 years of ethics consultations at Burnaby Hospital, each case involved a patient who was no longer capable of giving informed consent. Their autonomy was
compromised by cognitive impairment due to their medical conditions, including dementia and strokes. Spouses and family members had to share in these patients’ decisionmaking. Over time, loved ones of individuals with dementia must traverse a moral minefield while struggling to balance their own self-care with the care of their loved ones. Family dynamics are in flux. The Tapestry Foundation for Health Care is presenting a free public lecture, Dementia and Ethical Dilemmas: Answers to Hard Questions for Families, Friday, Sept. 17 at the Vancouver Convention Centre. Dr. Hilde Lindemann is a professor of philosophy at Michigan State University and coauthor of Alzheimer’s: Hard Questions for Families. She will offer her advice to help families cope with difficult moral questions raised by this condition. How much should your loved one with dementia be told? Is it ever OK to lie? How should you deal with the sometimes frightening changes in your loved one’s personality? How can family members resolve their own disagreements about these matters and other aspects of their loved one’s care? Dr. Lindemann’s talk begins at 7:15 p.m. with check-in at 6:15 p.m. Seating is limited. For more information contact the Tapestry Foundation at 604-877-8312 or tapestryfoundation.ca. Dr. Davidicus Wong is a family physician. His column appears regularly in this paper. His internet radio show can be heard on pwrnradio.com.
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