CHICAGO 鈥� At least once a day, Dr. Lee Ann Lindquist gets an urgent phone call.
鈥淢om fell and is in the hospital,鈥� a concerned middle-aged son might report.
鈥淒ad got lost with聽the car, and we need to stop him from driving,鈥� a distraught middle-aged daughter may explain.
鈥淲e don鈥檛 know what to do.鈥�
Lindquist, chief of geriatrics at Northwestern University鈥檚 Feinberg School of Medicine, wondered if people could become better prepared for such emergencies, and so she designed a research project to find out.
The result is a unique website, , which helps older adults plan for predictable problems during what Lindquist calls the 鈥渓ast quarter of life鈥� 鈥� roughly, from age 75 on.
鈥淢any people plan for retirement,鈥� the energetic physician explained in her office close to Lake Michigan. 鈥淭hey complete a will, assign powers of attorney, pick out a funeral home, and they think they鈥檙e done.鈥�
What doesn鈥檛 get addressed is how older adults will continue living at home if health-related concerns compromise their independence.
鈥淧eople don鈥檛 want to think about the last 10 or 15 years of their life, and how they鈥檙e going to manage,鈥� Lindquist said.
This isn鈥檛 end-of-life planning; it鈥檚 planning for the period before the end, when health problems become more common.
Lindquist and collaborators began their research by convening focus groups of 68 seniors 鈥� mostly women with an average age of 74. Nearly $2 million in funding came from the , created under the Affordable Care Act.
Investigators wanted to know which events might make it difficult for people to remain at home. Seniors named five: being hospitalized, falling, developing dementia, having a spouse fall ill or die, and not being able to keep up their homes.
Yet most participants hadn鈥檛 planned for these kinds of events. Investigators asked why.
Among the reasons seniors offered: I don鈥檛 know what to do, I鈥檓 uncomfortable asking for help, I鈥檓 not at immediate risk of something bad happening, my children will take care of whatever I need, and I鈥檓 worried I won鈥檛 have enough money, according to a published last year.
Developing the website came next. Lindquist and her team decided to focus on three issues the focus groups had raised 鈥� hospitalizations, falling and developing dementia 鈥� and to include sections on communicating with family members and managing finances.
A group of senior advisers rejected the first version: the typeface was too small; the design, too cluttered; and the content, too complex. They didn鈥檛 want to be overwhelmed with information; they wanted the material on the site to be practical and concrete.
The final version 鈥渇orces people to sit down and think about their future in a very helpful and non-threatening way,鈥� said Phyllis Mitzen, 74, who worked on the project and is president of Skyline Village in downtown Chicago, a community organization with about 100 older adult members.
A website hosted by Northwestern University鈥檚 Feinberg School of Medicine helps users plan for the last stage of life. (Screenshot)
An individual going through the material is asked to consider a series of questions after examining explanatory information and watching short videos of seniors illustrating the issues being discussed. For instance, which rehabilitation facility would you like to go to if you need intensive therapy after a hospitalization?
Who will take care of your pets, mow your lawn or shovel the snow from your sidewalk while you鈥檙e away? Who can collect your mail, check on bills to be paid and get medications for you when you return home?
If you begin having memory problems, who can help you manage your bills and finances? Are you willing to wear a medical alert bracelet if you start getting lost? Would you be willing to have a friend or relative check on your driving or have a formal driving evaluation?
If you require more assistance, are you open to having someone come in to help at home? Would you prefer to live with somebody 鈥� if so, whom? Would you be willing to move into a senior community?
The goal is to jump-start conversations about these issues, Lindquist said, just as seniors are encouraged to have conversations about end-of-life preferences.
Those looking for deep dives into topics highlighted on the site will have to look elsewhere. Resources listed are spare and some of the material presented 鈥� for instance, how Medicare might cover various services 鈥� is overly simplified, noted Carol Levine, director of the United Hospital Fund鈥檚 Families and Health Care Project in New York City.
Her project has prepared a much more detailed, comprehensive about issues such as home care, doctors鈥� visits, emergency room care, rehabilitation and what to expect during and after a hospitalization. Those materials are full of useful advice and can flesh out issues raised on the Northwestern website.
Those wanting to know more about falls can consult materials prepared by the and Prevention and the .
For dementia, the and the are good places to start.
As for next steps, Lindquist contemplates disseminating PlanYourLifespan more widely, translating it into Spanish if funding can be secured and possibly expanding it to include more topics.
The point is to 鈥済ive seniors a voice,鈥� she said. Now, if an older woman breaks a hip and is rushed to surgery, 鈥渓oved ones run around and usually make decisions without her input 鈥� she鈥檚 usually too out of it to really weigh in. That doesn鈥檛 have to happen, if only people would consider the reality of growing older and plan ahead.鈥�
We鈥檙e eager to hear from readers about questions you鈥檇 like answered, problems you鈥檝e been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.
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