“Making a living will is a good idea. Telling people about it is even better”

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“Making a living will is a good idea. Telling people about it is even better”

“Endnotes” is a regular section of STAT, a website focused on the “frontiers of health and medicine.”  Someone on an online frontotemporal dementia support group recently shared an article on STATnews.com so I started digging around on the website.  There are lots of good articles.

This article — titled “Making a living will is a good idea. Telling people about it is even better” — makes an excellent point.  Many of us have prepared a living will or advance care directives but few of us have shared them with our primary and secondary healthcare agents.  And few of us have had conversations about our wishes with our healthcare agents.

The author notes that “spouses often grant power of attorney to one another or complete living wills, but they find it too painful to talk openly about each other’s death.”

Also, some patients are “reluctant to thoroughly advocate for their end-of-life preferences” as they are worried about hurting the feelings of their loved ones.

When a healthcare agent doesn’t know the person’s end-of-life wishes for treatment, this can backfire because usually uninformed healthcare agents opt for aggressive treatment.

Here’s a link to the article:

www.statnews.com/2015/12/04/living-will-important-steps/

Endnotes
Making a living will is a good idea. Telling people about it is even better    
STAT
By Bob Tedeschi
December 4, 2015

Robin

 

ABCs of Medicare; open enrollment starts Oct. 15

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ABCs of Medicare; open enrollment starts Oct. 15

This post may be of interest to those who have family members on Medicare, and probably of most interest to adult children who are new caregivers to parents as this audience probably has little awareness of the ins-and-outs of Medicare.

We are in the midst of National Medicare Education Week (ends on Wed., Sept. 21st), and Medicare Open Enrollment starts on Oct. 15th.

Besides a short article in Huffington Post that offers a quick overview of Medicare Parts A-D, there are two other good sources of Medicare info:

1- MedicareMadeClear.com, a website

2- HICAP (Health Insurance Counseling and Advocacy Program), a terrific resource for Medicare and MediCal (what Medicaid is called in California) info.  In California, you can find HICAP resources by county.  Start here and then click on “Services by County”:

www.aging.ca.gov/hicap/

In other states, HICAP might be called SHIP (State Health Insurance Assistance Program).  You can likely find contact info on SHIP resources by contacting the local area agency on aging.

Here’s a link to the short article on the “ABCs of Medicare”:

www.huffingtonpost.com/entry/abcs-of-medicare-for-caregivers_us_57d6d1abe4b0273330ac46f3?

Voices | Health Post 50
The ABCs Of Medicare For Caregivers
Huffington Post
Dr. Efrem Castillo, Chief Medical Officer, UnitedHealthcare Medicare & Retirement
09/12/2016 12:17 pm 

Happy reading!

Robin

Family Caregivers Need Help Too

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Family Caregivers Need Help Too

This Kaiser Health News article is about a report from the National Academies of Science, Engineering, and Medicine on the 18 million people caring for a relative older than 65.  The report argue that “the need to recognize and support caregivers is among the most significant challenges” facing the elderly, families, and society.

“According to the report, people who help elderly family members with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs.”

Caregiving has many costs:

* Economic:  “Lost wages and benefits average $303,880 over the lifetimes of people 50 and older who stop working to care for a parent, according to a study cited in the report. That’s not all: A lower earnings history also means reduced Social Security payments for caregivers when they become eligible.”

* Physical and Emotional:  “If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the report said.

The author notes that the report “recommended wellness visits, counseling sessions and better training for caregivers who must understand increasingly complicated medical instructions.”

The full article is copied below.

Robin

————————————

khn.org/news/study-elderlys-family-caregivers-need-help-too/

Study: Elderly’s Family Caregivers Need Help Too
Kaiser Health News
By Rachel Bluth
September 13, 2016

Elderly Americans’ well-being is at risk unless the U.S. does much more to help millions of family caregivers who sacrifice their own health, finances and personal lives to look out for loved ones, reported a study released Tuesday.

Nearly 18 million people care for a relative older than 65 who needs help, yet “the need to recognize and support caregivers is among the most significant challenges” facing the nation’s swelling elderly population, their families and society, according to the report from the National Academies of Science, Engineering, and Medicine. Describing family caregiving as “a critical issue of public policy,” a committee of experts in health care and aging said the next presidential administration in 2017 should direct a national strategy to develop ways to support caregivers, including economically.

According to the report, people who help elderly family members with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs.

Five years is the median duration that family members care for older adults with high needs, the report said.

For some Americans who accept that responsibility, that can mean taking a less demanding job, foregoing promotions or dropping out of the workforce.

Lost wages and benefits average $303,880 over the lifetimes of people 50 and older who stop working to care for a parent, according to a study cited in the report. That’s not all: A lower earnings history also means reduced Social Security payments for caregivers when they become eligible.

A possible fix for that problem, proposed by researchers in 2009, is to provide caregivers with a Social Security credit for a defined level of deemed wages during a specified time period, the report said.

Leave programs do exist for some workers shouldering caregiving duties, but many lack such job protections.

The federal Family and Medical Leave Act doesn’t cover 40 percent of the workforce. It allows eligible employees to take 12 weeks of unpaid time off to care for certain family members, but the law only applies to those who work federal, state and local governments and private companies with more than 50 employees. But ineligible family relationships for leave include sons- and daughters-in-law, stepchildren, grandchildren, siblings, nieces and nephews. Many workers can’t afford to give up their incomes for 12 weeks.

In 2011, 17 percent of caregivers didn’t take leave because they feared losing their jobs, according to a national survey cited in the report.

The report recommends that family caregivers receive status as a protected class under existing job discrimination laws and that employers get guidance and training on ways to support workers caring for family members.

Beyond the economic costs of caregiving, the report notes that the social and physical toll of caregiving should get more attention than it does.

“If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the report said.

Instead of delivering “patient-centered” care, health care providers should adopt “family-centered” models that include checking with caregivers to ensure they are healthy and capable of filling the role. The report also recommended wellness visits, counseling sessions and better training for caregivers who must understand increasingly complicated medical instructions.

Dealing with feeding and drainage tubes, catheters and other complicated medical devices causes stress, and the study’s authors noted that caregivers report “learning by trial and error and fearing that they will make a life-threatening mistake.”

The study was funded by 13 private foundations, the Department of Veterans Affairs, and an anonymous donor that requested the National Academies undertake the research in 2014.

KHN’s coverage of late life and geriatric care is supported by The John A. Hartford Foundation. KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.

 

“What It Feels Like to Die”

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“What It Feels Like to Die”

This is an interesting article on what likely happens as people are “actively dying.”  Despite the sub-title, I didn’t think there was a lot of science being reported but it’s worthwhile reading nonetheless.

www.theatlantic.com/health/archive/2016/09/what-it-feels-like-to-die/499319/

What It Feels Like to Die
Science is just beginning to understand the experience of life’s end.
The Atlantic
Jennie Dear
Sep 9, 2016

Robin

“Failure to Improve Is Still Being Used, Wrongly, to Deny Medicare Coverage”

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“Failure to Improve Is Still Being Used, Wrongly, to Deny Medicare Coverage”

This post may be of interest to those on Medicare.

This New York Times article is about the fact that skilled nursing facilities, home health agencies, and outpatient therapists deny continued therapy or treatment for Medicare beneficiaries with the rationale that the patients are “not improving” or “have reached a plateau.”

This issue was supposedly settled in a 2013 lawsuit.  According to the settlement, Medicare must cover skilled care and therapy when they are “necessary to maintain the patient’s current condition or prevent or slow further deterioration.”  The judge required CMS (Centers for Medicare and Medicaid Services) change its policy manuals and “begin an educational campaign to publicize the change.”

According to the article:  “By early this year, however, the Center for Medicare Advocacy [one of the plaintiffs in the 2013 case] was hearing from many sources that despite the settlement, providers and the contractors reviewing Medicare claims were still denying coverage when beneficiaries didn’t demonstrate improvement.”

So the plaintiffs in the 2013 case went back to court.  The judge has given CMS until early October to come up with a plan as to how it with launch an educational campaign.

As the article points out, there is an appeals process if Medicare denies therapy or skilled care but most patients don’t appeal.  The authors notes:

“Of course, patients and families have the same right to appeal coverage denials that they’ve always had. (A notice to this effect is buried somewhere in the paperwork they sign.) They also have the same odds of prevailing they’ve always had: very low, said Judith Stein, the executive director of the Center for Medicare Advocacy.  Patients generally have 72 hours to appeal, a process that involves seeking a ‘redetermination’ and then, if that fails, a ‘reconsideration.’ If families go all the way to a hearing before an administrative law judge, Ms. Stein said, they have a good shot. But most families don’t persevere, in part because they can’t afford to pay for care while the appeal proceeds. (If they do spend their own money, though, they can appeal for reimbursement.)”

Here’s a link to the full article:

www.nytimes.com/2016/09/13/health/medicare-coverage-denial-improvement.html

The New Old Age
Failure to Improve Is Still Being Used, Wrongly, to Deny Medicare Coverage
The New York Times
Paula Span
September 12, 2016

Robin