Diagnosed with Dementia, She Documented Her Wishes. They Said No Because of the Law

Community Community From looking Argentinian at phone embassy P4too much P16 collaborates to sucking air through with Pallas Arts to teeth and biting nails, support kids in need for bad habits can be the project ‘Education changed for good. and Arts’. Friday, January 24, 2020 Jumada I 29, 1441 AH Doha today 130 - 200 DEAD-END: Susan Saran, diagnosed with frontotemporal dementia, a progressive, fatal brain disease, wearing a chain bearing instructions that she not be resuscitated. COVER Age of anxiety STORY Diagnosed with dementia, she documented her wishes. They said no because of the law. P2-3 CUISINE SHOWBIZ Crispy, spicy Mirchi Vada Ozzy Osbourne reveals is absolutely irresistible. Parkinson’s diagnosis. Page 6 Page 15 2 GULF TIMES Friday, January 24, 2020 COMMUNITY COVER STORY Looking down the barrel PRAYER TIME Fajr 5am Shorooq (sunrise) 6.21am By 2050, nearly 14 million Americans aged 65 and older may be Zuhr (noon) 11.47am Asr (afternoon) 2.52pm Maghreb (sunset) 5.13pm diagnosed with Alzheimer’s disease, writes JoNel Aleccia Isha (night) 6.43pm USEFUL NUMBERS Emergency 999 Worldwide Emergency Number 112 Kahramaa – Electricity and Water 991 Local Directory 180 (Spoon-feeding) International Calls Enquires 150 Hamad International Airport 40106666 is not something Labor Department 44508111, 44406537 that I am willing Mowasalat Taxi 44588888 Qatar Airways 44496000 to endure. I Hamad Medical Corporation 44392222, 44393333 Qatar General Electricity and don’t want my Water Corporation 44845555, 44845464 Primary Health Care Corporation 44593333 life prolonged 44593363 beyond the Qatar Assistive Technology Centre 44594050 point where I’m Qatar News Agency 44450205 44450333 participating in Q-Post – General Postal Corporation 44464444 life — Susan Saran, Humanitarian Services Offi ce ‘ (Single window facility for the repatriation of bodies) dementia patient Ministry of Interior 40253371, 40253372, 40253369 Ministry of Health 40253370, 40253364 Hamad Medical Corporation 40253368, 40253365 Qatar Airways 40253374 IN A BIND: Susan Saran asked her lawyer, Chuck Guttman, to draft healthcare proxy and power of attorney documents as part of ote Unquo her advance directive to ensure that her final wishes are carried out. The new crop of dementia directives was inspired, in part, by Qu te high-profile cases of dementia patients spoon-fed against their apparent wishes. “A person who never made a hen she worked on the before I was unable to care for myself.” to avoid the worst ravages of the disease. trading fl oor of the So Saran uprooted herself. She sold her “It’s not something that I am willing mistake never tried anything Chicago Board Options home in 2015 and found what looked like to endure,” she said. “I don’t want my life Exchange, long before an ideal place: Kendal at Ithaca, a bucolic prolonged beyond the point where I’m new.” cellphone calculators, retirement community in rural New York participating in life.” WSusan Saran could perform complex whose website promised “comprehensive But when Saran submitted the — Albert Einstein math problems in her head. Years later, as healthcare for life.” document to Kendal at Ithaca, the one of its top regulators, she was in charge And now, she’s fi ghting with that New York continuing care retirement of investigating insider trading deals. community over her right to determine community where she has spent more Today, she struggles to remember how she’ll die — even though she has than $500,000 to secure her future, multiplication tables. made her wishes’ known in writing. offi cials there said they could not honour Seven years ago, at age 57, Saran was Such a fi ght could ensnare millions of her wishes. diagnosed with frontotemporal dementia, Americans with dementia in coming In a letter, lawyers told Saran that the Community Editor a progressive, fatal brain disease. She had years. centre is required by state and federal law started forgetting things, losing focus at In 2018, after two brain haemorrhages, to off er regular daily meals, with feeding Kamran Rehmat the job she’d held for three decades. Then Saran conferred with a lawyer and signed assistance if necessary. e-mail: [email protected] tests revealed the grim diagnosis. an advance directive for dementia, a There’s no provision, the letter said, for Telephone: 44466405 “It was absolutely devastating,” said controversial new document created by “decisions to refuse food and water.” Fax: 44350474 Saran, 64. “It changed everything. My job the group End of Life Choices New York It’s a cruel quandary for Saran and ended. I was put out on disability. I was that instructs caregivers to withhold other Americans who have turned to told to establish myself in a community hand-feeding and fl uids at the end of life a crop of dementia directives created Friday, January 24, 2020 GULF TIMES 3 COVER STORY COMMUNITY in recent years. Even when people has reached out to discuss an document their choices — while “alternative path.” they still have the ability to do Not all dementia directives include so — there’s no guarantee those instructions about assisted feeding. instructions will be honoured, said Gaster said he and his colleagues Dr Stanley Terman, a California had “heated conversations” before psychiatrist who advises patients on deciding to leave that issue off their end-of-life decisions. popular document. “It is, in my opinion, a false sense Instead, he said, his option helps of security,” Terman said. more people by addressing general That may be especially true for goals of care for each stage of the the 2.2 million people who live in disease. The most important thing, long-term care settings in the United he said, is for people to consider their States. People with dementia are choices and share their desires with most likely to die in nursing facilities, their loved ones. according to new research from Duke The debate, Gaster said, boils University and the Veterans Aff airs down to whether assisted feeding Boston Healthcare System. is “basic support” or “a medical “If you’ve got the resources, where intervention that can be declined in you’ve got family and paid caregivers advance.” at home, you’re all set,” said Dr Karl “There’s still a very wide Steinberg, a California geriatrician perspective of viewpoints on that,” and hospice physician who has he said. written extensively about dementia Backed by statute and practice, directives. If you’re living in a facility, facilities say they are bound to off er he added, “it’s not going to happen.” food to all residents willing to eat, One key question is whether and to assist with hand-feeding and patients with dementia — or those fl uids if a person needs help. who fear the disease — can say in HARD DONE BY: Susan Saran, a longtime Buddhist, often drives to a nearby monastery to practice her faith. The controversy centres on the advance that they want oral food defi nition of those terms. and fl uids stopped at a certain point, Wright says late-stage dementia a move that would hasten death “I didn’t realise I was signing away my right to self- patients who show any interest in through dehydration. determination. I am appalled that my future demented food — a fl ick of the eyes, grunting It’s a controversial form of what’s or gestures, opening the mouth — known as VSED — voluntarily self takes precedence over my competent current self” should be fed until they refuse it. stopping eating and drinking — a Steinberg and others contend the practice among some terminally ill — Susan Saran default should be “don’t feed unless patients who want to end their lives. they ask for it.” In those cases, people who still have They’re so eager and excited to have wave of dementia that’s heading our walls and bookshelves are fi lled with It’s always going to be “somewhat mental capacity can refuse food a structured opportunity to make way,” Gaster said. tomes on religion, death and dying. of a guess,” Wright acknowledged, and water, resulting in death within their wishes known.” Saran is on the crest of that wave. Frontotemporal dementia aff ects about whether hand-feeding about two weeks. Traditional advance directives Divorced, with no close family, she about 60,000 people in the US, and someone is help — or force. Many states prohibit the focus on rare conditions, such as turned to Kendal — with its 236 patients often die within seven to 13 “I’ve not seen any guidelines that withdrawal of assisted feeding, a persistent vegetative state or independent units and 84-bed years, but Saran’s disease appears can faithfully give good, unbiased calling it basic “comfort care” that permanent coma, Gaster said. “And health centre — as her fi nal home. to be progressing more slowly than guidance,” he said. “I feel that I must be off ered. Only one state, yet the No 1 reason a person would During her four years there, she has expected. personally can determine when food Nevada, explicitly recognises an lose ability is dementia,” he added. noticed some decline in her mental “I think I have great capacity,” said means something to my patients and advance directive that calls for In addition to Gaster’s document, clarity. Saran, who wears her silver hair long when it doesn’t.” stopping eating and drinking. And directives drafted in New York “Even some of the simplest and favours jeans, linen shirts and The new crop of dementia that’s via a little-known law that and Washington state have drawn mathematical problems, like even turquoise jewellery. directives was inspired, in part, took eff ect in October. hundreds of users.

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