Phyllis Mitzen, a 72-year-old semi-retired social worker, has worked with seniors for many years and understands the value of planning for future healthcare needs. Yet, she herself has put off the task. Phyllis’s husband is turning 76 this year. And although she and her husband are both still quite healthy, who knows what might happen a few years down the road?
To help herself, and others in similar situations, Mitzen, along with Lee Lindquist, MD, MPH, MBA, a geriatrician and associate professor of medicine at Northwestern University, envisioned PlanYourLifespan.org. PlanYourLifespan.org is a site designed to help older adults create concrete strategies for dealing with health crises that occur frequently with age, such as a hospitalization, a serious fall, and memory loss or dementia.
The basis for the website “was the need for a tool to help older people plan for the fourth quarter of their lives,” says Lindquist, and to understand their future potential health needs, and plan how to address them before a crisis occurs. Older adults can use the website to learn about what services they may need over time, what choices they can make now, and how to access these services when needed. The website also encourages users to talk about these plans with family members or other people they trust.
The Need to Think and Plan Ahead
Many older Americans underestimate the need to plan for future health events. In fact, most older adults don’t plan for the 5, 10, or 20 years before they die. “These years are when their medical conditions may worsen, and they may require more help to remain in their own home,” says Lindquist. “Often, because the older adult is ill or incapacitated, he or she doesn’t get a voice in what happens. If older adults and their families planned ahead, individuals could maintain more control and potentially remain safely in their homes as long as they chose.”
Website users get a variety of practical information, including not only how to prevent falls at home but also tips on remembering to take medications, finding a caregiver, and planning which rehab facilities they’d prefer using, if necessary. Older adults helped the team prepare the site, developing the topics and text, as well as advising that the site needed high-contrast illumination and a large font for easy readability.
The website walks users through the planning process. Without that planning (and legal planning done with an experienced elder law attorney), if you are hospitalized or develop memory loss, somebody else makes those decisions for you. The tool, when used with proper legal planning, is intended to give seniors a voice in their future.
Testing the Website
The team’s initial evaluation—comparing older adults sent to either PlanYourLifespan.org or a control website—showed that the new website is effective in increasing planning, knowledge about support services, and communication about preferences.
- The project team enrolled 600 volunteers aged 65 and older, randomly assigning the volunteers to either PlanYourLifespan.org or a control website.
- Volunteers were interviewed about their planning activities just before and after using the websites, as well as one and three months later.
- Compared with older adults who had used the control website, the people who had used PlanYourLifespan.org had made more plans for their future, had a better understanding of what they would need, and had communicated these plans with loved ones.
- During the study, volunteers who were randomized to the PlanYourLifespan.org website were asked not to discuss it with others, but there was a lot of leakage which was not necessarily a bad thing because it helped researchers to realize how helpful the site was.
The researchers stopped the study early so that the website would be freely available to all the participants—as well as to the general public. According to Lindquist, “It was awesome. We met with our patient partners and stakeholders, who were equally thrilled. It is a researcher’s dream to create a product that proves effective in helping seniors.”
Building the Tool
PlanYourLifespan.org is currently available for free, through support from Northwestern University.
The tool presents questions related to scenarios based on common health crises and provides information about options for future care. It generates a personalized report of the user’s expressed preferences. Users can save the report, print it out, or even email copies of it to loved ones. Lindquist says, “It can serve as a checklist that families and friends can follow if something happens to the older person.”
The tool is available in both electronic and paper versions, so older people who aren’t comfortable with computers can still benefit. The paper version will provide mailing addresses and phone numbers, as well as web addresses, for home-care and other support services.
Lindquist encourages “seniors and seniors-to-be” to visit PlanYourLifespan.org. “No one knows what their future health holds, but we all want to have our voices heard throughout our lifespans,” she says. “Are you prepared to turn 80, 90, or 100 years old?”
Some Takeaways to Consider
In conducting the focus groups for the PlanYourLifespan.org tool with older adults and follow-up interviews with those supporting them (spouses, other family members, and friends), older adults shared their concerns, including:
- being able to remain in their homes;
- their views about and experiences with home-care services;
- the extent to which they had discussed their long-term care plans with family members.
- how they may not want to ask for help;
- how a caregiver in their home would be intrusive;
- how to find the services that would be helpful;
- reasons for delaying planning for their future health needs;
- having tough conversations vs. denying the possibility of future needs and avoiding the discussion altogether.
Spouses, family members, and friends reported worries about:
- their loved one’s future;
- any conversations about long-term care needs; and
- their readiness to make decisions with or for the older person when necessary.
Do you and your loved ones share these concerns? If so, be sure to talk to your loved ones, using the PlanYourLifespan.org or a similar website or tool, if desired, and make an appointment with an experienced elder law attorney such as myself. Knowing that you are prepared will provide you and your family with much-needed peace of mind and a measure of confidence about your future.
Do Your End-of-Life Planning with Us
Planning for end of life issues is an emotional and difficult task for most of us, and it is an important first step to making sure your wishes are clear. Luckily, there are tools such as planyourlifespan.org that are designed to help. Once you have taken the step of speaking with your loved ones about your wishes, it is important to develop incapacity planning documents, including an Advance Medical Directive, to make your wishes legally enforceable. If you and your loved ones have not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past several years), now is a good time to plan and get prepared. Call us to make an appointment for an initial consultation:
Fairfax Estate Planning Attorney: 703-691-1888
Fredericksburg Estate Planning Attorney: 540-479-143
Rockville Estate Planning Attorney: 301-519-8041
DC Estate Planning Attorney: 202-587-2797
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About Evan H Farr, CELA, CAP
