“Tips for Healthy Living” Webinar (resilience, quality of life, occupational therapy)

The Parkinson’s Disease Foundation (PDF) is having another of its every-other-month one-hour webinars this coming Tuesday at 10am California time.  The title is:  Occupational Therapy and Parkinson’s: Tips for Healthy Living.  But this webinar is about lots more than what we normally think of with the term “occupational therapy (OT).”

If you don’t have web access at that time, you can listen in to the audio portion of the event.  Also note that the webinar recording is generally available one week after the live webinar.  If you register for the webinar, you will automatically receive an email alerting you to the webinar recording’s availability, whether you attended or not.

In general, I highly recommend these PDF webinars as they are typically great presentations and the speakers do a good job with audience questions at the end.  Even though they are focused on Parkinson’s Disease, they are still useful to those in our support group because they are often focused on symptoms that our group members also experience.

After taking a look at the two speakers’ slides, I’d really encourage you to participate in this Tuesday’s webinar.  The speakers start from research that shows that those with neurological diseases and their care partners have “highly compromised work and leisure lives” due to the disease.  In particular, those with Parkinson’s “had lower sense of feeling of control and consistency in their lives, fewer active coping strategies and lower well-being compared to people with chronic non-neurological disease.”

The speakers focus on resilience.  One of the speakers has published research showing that:

“People with Parkinson’s who learn strategies for how to maintain participation in valued life activities have a higher quality of life than those who do not learn these strategies.”

This reminds me of Janet Edmunson’s book titled “Finding Meaning with Charles.”  There’s a story about how she and her husband Charles (diagnosed with PSP during life and CBD upon brain donation) kept up the ritual of going out for frozen yogurt every week — despite the challenge and mess — because it had been an important part of their weekly routine.

This webinar will hopefully impart some self-management strategies for maintaining quality of life.  If you participate, let me know what helpful techniques you picked up that should be shared with others in our group.

The details are below.

Robin


Occupational Therapy and Parkinson’s: Tips for Healthy Living

PD ExpertBriefing
Webinar hosted by Parkinson’s Disease Foundation

Tuesday, September 9, 2014
1:00 PM – 2:00 PM ET
(The webinars are usually on the first Tuesday but are moved to the second Tuesday if the first Tuesday is close to a holiday.)

Speakers:
* Sue Berger, Ph.D., O.T.R/L., B.C.G., F.A.O.T.A., of Boston University College of Health and Rehabilitation Sciences: Sargent College
* Linda Tickle-Degnen, Ph.D., O.T.R/L., F.A.O.T.A., of Tufts University

Learning Objectives
* Understand how occupational therapy can help people with Parkinson’s disease and their families.
* Learn practical strategies for increasing satisfaction with daily activities such as self-care, leisure and work.
* Find tips for preparing for changes in life activities and roles on the road ahead after a diagnosis.

General info about this webinar:
http://www.pdf.org/en/parkinson_briefing_occupationaltherapy

Register:
event.netbriefings.com/event/pdeb/Live/therapy/register.html

Download slides:
www.pdf.org/pdf/parkinson_briefing_occupationaltherapy_090414.pdf

If you are only listening in by phone and not viewing the slides live, you can call in to this number to hear the audio:
(888) 272-8710
passcode 6323567#

Technical questions about how a webinar works?  Contact NetBriefings, www.netbriefings.com/support/, or at (651) 225-1532.

 

Webinar on CA’s Revised POLST Form (going into effect on 10-1-14)

POLST stands for Physician Orders for Life-Sustaining Treatments.  You might know it as the “pink form.”  Everyone with a neurological condition should complete a POLST with their physician and healthcare agent.  Anyone who is frail should also complete a POLST as should anyone with a serious medical condition.

California has revised the POLST form.  The previous form was distributed in 2011.  The 2014 form goes into effect on 10-1-14.  The 2011 form is still valid, even after 10-1-14.  And the 2014 form shouldn’t be used until 10-1-14.

There’s a free one-hour webinar being hosted by the Coalition for Compassionate Care of California (CCCC – coalitionccc.org/) at noon on Wednesday 9-10-14.  You can register here:

www.eventbrite.com/e/introduction-to-the-2014-polst-form-tickets-12153562633?ref=ebtnebregn

On this webpage, you can find a link to the 2014 POLST form along with an FAQ on the differences between the 2011 and 2014 forms:

capolst.org/2014polst/

Robin

 

Getting the low-down on nursing homes (in California especially)

This post may be of interest to those who may have to place their family members in a nursing home, or those who may have to move to a nursing home themselves.

In last Monday’s New York Times, there was a very long but important article about how nursing homes game the Medicare rating system, “Nursing Home Compare”medicare.gov/nursinghomecompare

You can find the article here:

www.nytimes.com/2014/08/25/business/medicare-star-ratings-allow-nursing-homes-to-game-the-system.html

The key criticism discussed is that Medicare ratings are:

“based in large part on self-reported data by the nursing homes that the government does not verify.  Only one of the three criteria [health inspections] used to determine the star ratings…relies on assessments from independent reviewers.  The other measures — staff levels and quality statistics — are reported by the nursing homes and accepted by Medicare, with limited exceptions, at face value.”

A second criticism is that the ratings:

“do not take into account entire sets of potentially negative information, including fines and other enforcement actions by state, rather than federal, authorities.”

The authors argue that Medicare’s five-star ranking misleads consumers, who place their family members in these facilities.

The example given is Rosewood Post-Acute Rehab, a nursing home in Carmichael, near Sacramento.  For the last five years, this nursing home has a five-star ranking, the highest possible with Medicare.  Last year, the state of California fined Rosewood $100K — the highest possible fine — “for causing the 2006 death of a woman who was given an overdose of a powerful blood thinner.”

“From 2009 to 2013, California fielded 102 consumer complaints…at Rosewood, according to a state website.  California Advocates for Nursing Home Reform, which also tracks complaints, put the number even higher, at 164, which it says is twice the state average.”

But none of the state data (hfcis.cdph.ca.gov/default.aspx) or CANHR data (canhr.org) is included on Medicare’s “Nursing Home Compare.”

Also, Rosewood got an average three-star rating on the health inspections.  They are able to get a five-star overall rating by self-reporting five stars on staffing and quality measures.  We are told that lots of nursing homes hire staff just before they have to report on staffing, and then lay the staff off once the staffing level has been reported.

Medi-Cal, California’s version of Medicaid, also gathers staffing levels of nursing homes in the state.  The authors discovered that “statewide, California nursing homes reported [staffing] levels to Medicare that were 15 percent higher than what they reported to Medi-Cal.”

The state data reflects staffing the whole year while the Medicare data reflects staffing only around the time of the annual report.

In the last several years, Rosewood has been the subject of a dozen lawsuits.  An eight-minute video on the NY Times website features the sad story of Essy Chandler and Rosewood.  The Chandler family is suing Rosewood because Mrs. Chandler died after falling several times at the nursing home.

The video is a good way to get the gist of the article.  Note that the article breezes over the Chandler lawsuit at the very end while the video features the Chandler family.

A link to the video is here:
www.nytimes.com/video/business/100000003071742/five-star-nursing-homes.html

The bottom line is that families should NOT rely on Medicare’s rating system for information about the quality of care provided at a nursing home.  Other information about nursing homes (in California) is available from:

  1. California Department of Public Health
    hfcis.cdph.ca.gov/default.aspx
  2. California Advocates for Nursing Home Reform (CANHR)
    canhr.org
  3. long-term care ombuds
    list by county in California –  aging.ca.gov/programs/ltcop/Contacts/
  4. families of current residents
  5. support groups
    At any given time, there is typically one support group member who has a loved one in a nursing home, whether it be for rehab or long-term care.

Let me know if you have other thoughts for how families can obtain reliable information about the quality of care at a particular nursing home.

Robin

Antipsychotics Overprescribed in Nursing Homes (AARP article)

This post is likely only of interest to those who have family members
in nursing homes or skilled nursing facilities, or to those who are
giving antipsychotics to family members.

BSN group member Helen Medsger forwarded this article from a recent AARP Bulletin on to me.  It’s about antipsychotics being
overprescribed in nursing homes.  Unfortunately, Helen’s family
experienced this with their father (with Lewy Body Dementia).

Robin

—————————————————————

aarp.org/health/drugs-supplements/info-2014/antipsychotics-overprescribed.html

Drug Abuse: Antipsychotics in Nursing Homes
These dangerous medications are prescribed at an alarming rate without the patient’s consent
AARP Bulletin
by Jan Goodwin
July/August 2014

When Patricia Thomas, 79, went into a Ventura, Calif., nursing home
with a broken pelvis, the only prescriptions she used were for blood
pressure and cholesterol, and an inhaler for her pulmonary disease. By the time she was discharged 18 days later, she “wasn’t my mother
anymore,” says Kathi Levine, 57, of Carpinteria, Calif. “She was
withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.” Within weeks, she was dead.

Thomas, a former executive assistant, had been given so many
heavy-duty medications, including illegally administered
antipsychotics, by the Ventura Convalescent Hospital in November of
2010 that she could no longer function. If one drug caused
sleeplessness and anxiety, she was given a different medication to
counteract those side effects. If yet another drug induced agitation
or the urge to constantly move, she was medicated again for that.

“Yes, my mom had Alzheimer’s, but she wasn’t out of it when she went
into the nursing home. She could dress and feed herself, walk on her
own. You could have a conversation with her,” says Levine. “My mother went into Ventura for physical therapy. Instead, she was drugged up to make her submissive. I believe that my mother died because profit and greed were more important than people.”

A Ventura County Superior Court judge agreed that Levine had a
legitimate complaint against the nursing home. In May, attorneys from the law firm Johnson Moore in Thousand Oaks, Calif., joined by lawyers from AARP Foundation, agreed to a settlement in an unprecedented class-action suit against the facility for using powerful and dangerous drugs without the informed consent of residents or family members. “It is the first case of its kind in the country, and
hopefully we can replicate this nationwide,” says attorney Kelly
Bagby, senior counsel for AARP Foundation Litigation.

A national problem

Tragically, what happened to Patricia Thomas is not an isolated
incident. According to Charlene Harrington, professor of nursing and
sociology at the University of California, San Francisco, as many as 1
in 5 patients in the nation’s 15,500 nursing homes are given
antipsychotic drugs that are not only unnecessary, but also extremely
dangerous for older patients. The problem, experts say, stems from
inadequate training and chronic understaffing, as well as an
aggressive push by pharmaceutical companies to market their products.

“The misuse of antipsychotic drugs as chemical restraints is one of
the most common and long-standing, but preventable, practices causing serious harm to nursing home residents today,” says Toby Edelman, an attorney at the Center for Medicare Advocacy in Washington, D.C. “When nursing facilities divert funds from the care of residents to corporate overhead and profits, the human toll is enormous.”

Kickbacks to doctors

Last November, in what the U.S. Department of Justice called “one of
the largest health care fraud settlements in U.S. history,” Johnson &
Johnson and its subsidiaries were fined more than $2.2 billion to
resolve criminal and civil charges because of their aggressive
marketing of drugs, including antipsychotics, to nursing homes, when
they knew the drugs had not been approved by the U.S. Food and Drug Administration (FDA) as safe and effective for a general elderly
population. The corporation also allegedly paid kickbacks to
physicians, as well as to Omnicare, the nation’s largest
long-term-care pharmacy provider. Omnicare pharmacists were
recommending Johnson & Johnson’s drugs, including the antipsychotic Risperdal, for use by nursing home residents.

Back in 2009, Eli Lilly did the same thing with its antipsychotic
Zyprexa, marketing to older people in nursing homes and assisted
living facilities, federal prosecutors charged. In a settlement, the
company agreed to pay $1.4 billion. “This case should serve as still
another warning to all those who break the law in order to improve
their profits,” Patrick Doyle, special agent in charge of the Office
of Inspector General for the U.S. Department of Health and Human
Services in Philadelphia, said at the time.

A report released in March by the inspector general of Health and
Human Services charged that one-third of Medicare patients in nursing homes suffered harm, much of which was preventable. “Too many nursing homes fail to comply with federal regulations designed to prevent overmedication, giving patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use,” Inspector General Daniel Levinson said. “Government, taxpayers, nursing home residents, as well as their families and caregivers, should be outraged — and seek solutions.”

Antipsychotic drugs are intended for people with severe mental
illness, such as patients with schizophrenia or bipolar disorder. As
such, they carry the FDA’s black-box warning that they are not
intended for frail older people or patients with Alzheimer’s or
dementia. In those populations, these drugs can trigger agitation,
anxiety, confusion, disorientation and even death. “They can dull a
patient’s memory, sap their personalities and crush their spirits,”
according to a report from the California Advocates for Nursing Home
Reform.

Kept in the dark

What’s more, the law requires “informed consent” by a patient or, if
that is no longer possible, by his or her family before such drugs are
administered. Yet advocates say that, all too frequently, this doesn’t
happen. Levine, for example, says she didn’t know about all her
mother’s medications until she transferred her mom to another
facility. “When I saw the list of what she’d been given, I freaked
out. I was upset and angry, in tears,” she recalls.

How can such things happen? One explanation is that many facilities
don’t have enough properly trained staff: Most of the patient care in
nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. “Yet if
you want a license to be a hairdresser, you need 1,500 hours of
training,” Harrington points out.

What’s more, CNAs are paid low wages so many of them work long hours. “They are totally exhausted, with extremely heavy workloads,” she says. That leads to high employee turnover and caregivers who don’t know their patients well enough to recognize their needs.

Compounding the problem, many nursing home patients require a high level of care. Some are incontinent, and an estimated 60 to 70 percent have some form of dementia. There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Harrington says. There also tend to be too few physicians actually present in nursing homes. “These facilities are highly medicalized, but doctors are rarely there,” says Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform. He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.

The result of all this can be so-called behavior problems among
patients — which is the explanation nursing homes cite for giving
patients unnecessary antipsychotic drugs, according to the U.S.
Centers for Medicare and Medicaid Services (CMS). And pharmaceutical companies have been aggressively marketing their products as an easy and effective way to control these issues.

“There was a push by drug manufacturers, claiming these medications
work for seniors when they knew, in fact, that it doubled their risk
of death,” Chicotel says.

CMS, which oversees the nursing homes that receive funding from
federal programs, says it has been working to correct deficiencies in
nursing facilities, including the inappropriate use of medications.
The agency achieved the goal of reducing the inappropriate use of
antipsychotic drugs by 15 percent over a recent two-year period, and
hopes to get to a 30 percent reduction in the next few years,
according to spokesman Thomas Hamilton. But Edelman points out that initial goal was reached more than a year late, and some 300,000
patients are still receiving the drugs inappropriately. Hamilton
acknowledges that more needs to be done, but lack of funding from
Congress is making even the most preliminary work difficult.

A better way

Fortunately, a growing number of nursing homes have begun to look for more effective — and more humane — ways to care for patients. Better training for caregivers is key: According to Cheryl Phillips, M.D., a geriatrician at LeadingAge, an organization representing nonprofit services for older people, nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.

She cites an example of a male patient who was spending his days in a
noisy nursing home activity room. One day, he grew more and more
agitated and tripped an aide with his cane. To calm him down, the
staff took him to his private quarters. Over the following days, his
behavior in the activity room became increasingly aggressive; he began randomly hitting caregivers and fellow patients. Each time, he was taken away to spend time in his room.

“The staff initially thought he had become violent and needed an
antipsychotic,” Phillips recalls. “But they ultimately realized that
the cacophony in the activity room was stressing him out. Caregivers
inadvertently rewarded him by giving him quiet time in his room, which is what he wanted. When they did it repetitively, they reinforced his aggressive behavior.” Once the staff discussed the problem and began finding peaceful activities for the patient, the problem was solved — no drugs needed.

Putting patients first

Another success story is the Beatitudes facility in Phoenix, which
dramatically changed its way of handling patients with dementia based on Tom Kitwood’s book Dementia Care Reconsidered: The Person Comes First. “What happens here is not for our systems, our convenience, but for the people we care for,” says Tena Alonzo, the director of education and research at Beatitudes. “People with dementia have disturbances in their sleep/wake cycle, so we let them be comfortable and decide when they want to sleep or eat, or not. Or how they want to spend their time,” she says. As a result, patients stop resisting care, and the facility runs more smoothly.

The Beatitudes’ philosophy is now being taught to a growing number of nursing homes around the country. “We’ve created a softer, gentler
approach, acknowledging that we are not in charge of a person’s life
— they are. In allowing them to retain their dignity, and adopt a
comfort level of care, we’ve had better outcomes,” says Alonzo. That
paradigm shift has not increased operating expenses, or required a
higher staff-to-resident ratio. “We discovered that better care was
better business,” Alonzo says.

For Kathi Levine and her mother, these encouraging developments are coming too late. “I want our lawsuits to impact nursing homes all over the country,” Levine says. “We need to protect our family members. They don’t have a voice, they can’t speak for themselves. So we need to speak out for them and help other people know what to look for. I want to make sure that what happened to my family doesn’t happen to anyone else.”

Jan Goodwin is an award-winning author and investigative journalist
for national publications.

“A new normal” – 10 things learned about trauma

This post is of general interest.

Recently, I saw an online magazine article called “A new normal.”  The online magazine, “catapult,” is a Christian publication; it “fosters collaborative thought on practically living out faith in all areas of life and inspires hopefulness and action through the experience of community.”  I don’t find this article very religious, which is why I’m sharing it here.

There are not a lot of details about the writer, Catherine Woodiwiss.
She writes on faith, policy, and culture.

The author lists the ten things she learned from experiencing trauma.  We aren’t told what kind of trauma the author experienced.

It resonated with me in terms of dealing with the trauma of a loved one’s death.  It may resonate with many of you in different ways — whether you be a care giver or care recipient.

Here are the ten things the author learned:  (with details on a couple)

1.  Trauma permanently changes us.

2.  Presence is always better than distance.

3.  Healing is seasonal, not linear.

4.  Surviving trauma takes “firefighters” and “builders.” Very few
people are both.

5.  Grieving is social, and so is healing.

6.  Do not offer platitudes or comparisons. Do not, do not, do not.

“I’m so sorry you lost your son, we lost our dog last year…” “At
least it’s not as bad as…” “You’ll be stronger when this is over.”
“God works in all things for good!”

When a loved one is suffering, we want to comfort them. We offer
assurances like the ones above when we don’t know what else to say. But from the inside, these often sting as clueless, careless or just plain false.

Trauma is terrible. What we need in the aftermath is a friend who can swallow her own discomfort and fear, sit beside us and just let it be terrible for a while.

7.  Allow those suffering to tell their own stories.

8.  Love shows up in unexpected ways.

 

9.  Whatever doesn’t kill you…

 

There will be days when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.

10.  …Doesn’t kill you.

The short article is worth reading in its entirety.  See:

catapultmagazine.com/ten-things-7/feature/a-new-normal

A new normal
by Catherine Woodiwiss
catapult Magazine, vol. 13, num. 1, January 2014

 

Robin