Awareness and changes to deal with elder abuse

I have taken a couple months off from posting and now I have a lot of catching up to do.

Although elder abuse has gotten attention and legislation in recent years, it appears to be on the rise still.

As reported in the New York Times "New Old Age" blog, a federal report highlights the inadequacies of adult protective services around the country.

One possible bright light:

The chairman of the Special Committee on Aging, Senator Herb Kohl, Democrat of Wisconsin, reintroduced the Elder Abuse Victims Act at Wednesday's hearing. The bill would establish an office of elder justice within the federal Justice Department charged with protecting the elderly by strengthening law enforcement responses to abuse.

A good start, but other measures are in order as well. Definitely a topic for future posts!

Paying for long-term care

In these tough economic times, who wants to think of one more discretionary expense to add to the monthly budget? But, as this piece in the New York Times discusses, future long-term care costs for an individual could exceed $1 Million!

Long-term care insurance has been around for several decades, yet many people roll the dice as to whether they purchase it or not. Besides the statistics of one's chances of needed expensive nursing home care, the article also looks at the reasons we often choose not to obtain such protection.

While some excuses for not having insurance are incorrect or somewhat inaccurate (e.g, thinking Medicare will pay (which it doesn't), expecting our own savings to be sufficient, and counting on family members to care for us), "there is also a great deal of justified skeptism about the long-term care insurance industy."

On that skeptical side, some insurance companies are looking at raising their premiums by double-digit increases.

Wisconsin's Office of the Commissioner of Insurance (OCI) has a helpful guide on its website. Furthermore, Wisconsin is one of a number of states that offers Long-Term Care Insurance Partnership program to encourage the purchase of long-term care insurance by offering greater asset limits for Medicaid coverage. Search the OCI website for more information on all related topics.

Mayo Clinic electronic newsletter

The Mayo Clinic website has tons of great information, even beyond what we usually consider medical information, such as healthy eating and various aspects of healthy living. On the Clinic's homepage, you can sign up to receive its electronic newsletter.

Recently, the newsletter ran this helpful piece on talking to children about adoption. Topics in the article include when to talk to your child about adoption, how to discuss it, how to address racial or cultural differences, and answering children's questions.

The evolving science of autism spectrum disorder

A recent story in the New York Times describes the ongoing evolution and evaluation of medical and scientific understanding of Asperger's syndrome and similar conditions within the range of autism spectrum disorder.

Here's an excerpt:

If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.

“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual [on psychiatric diagnoses, being revised for publication in 2012].

“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”

Taking Asperger’s out of the manual . . .does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”

Help for those who care for elders

Many adult children who care for their aged parents face numerous challenges, including seeking out the best services for elder care and how to pay for them. A recent New York Times "Well" blog entry describes the process and benefits of engaging a geriatic care manager. Such a manager assists overwhelmed family members in assessing the elder's needs, connecting with high-quality services, and even negotiating the arrangements if family members disagree.

Because elder care is so personal and requires great trustworthiness, consider these suggestions from the entry:

Be sure to ask about backgrounds and credentials. If your parent has complicated medical issues, a care manager with a nursing background might be best. If the parent has cognitive problems or is just plain ornery, someone with a master’s in social work might be better.

Find out whether the person is a member of the national care managers’ association, which has strict requirements: members must have a master’s degree in a field related to care management, like nursing or social work, two years of supervised experience and certification by one of three accrediting agencies. Ask for a brochure and a fee schedule. Learn whether the care manager works alone or in a group practice and if they will be available to you 24 hours a day or just on weekdays.

Finally, consultations and care management can be fairly expensive, and Medicare does not pay for such services, so families need to take the financial piece into account too.

Health care reform explained

In all the swirl of comments and controversy, the New York Times offered this primer on the health care proposals in Washington. It highlights that there are still several bills under consideration, that the outrageous claims of some are unfounded, and various interests will need to compromise (meaning, the President, Congress, doctors, insurers, your grandmother will not get all they had hoped for).

Obviously, this topic is still a moving target, so stay engaged in the news for how healthcare reform will unfold.

The "fear" of government sponsored health care

Recently on Slate.com, "Scaring Grandma" relayed the speed bump in the Obama health care plan--reducing Medicare expenses, which some interpret to mean denying end of life care.

Here's an excerpt:

Many senior citizens are concerned that health care reform would mean cuts to Medicare. That much was clear at a town-hall meeting hosted Tuesday by the American Association of Retired Persons at which Obama fielded questions from seniors who don't want to give up their benefits.

But one question stood out. It addressed what the host from the AARP called the "infamous" Page 425 of the House health care bill. (Read the bill here.) "I have been told there is a clause in there that everyone that's Medicare age will be visited and told to decide how they wish to die," said Mary from North Carolina. "This bothers me greatly, and I'd like for you to promise me that this is not in this bill." The host elaborated: "As I read the bill, it's saying that Medicare will, for the first time, cover consultation about end-of-life care, and that they will not pay for such a consultation more than once every five years. This is being read as saying every five years you'll be told how you can die."

In a more balanced description of the options before Congress, the National Academy of Elder Law Attorneys reports:

The Secretary of HHS has sent a comprehensive report to Congress entitled “Advance Directives and Advance Care Planning.” The report, requested by Congress in 2006, focuses on (1) the best ways to promote the use of advance directives and advance care planning among competent adults as a way to specify their wishes about end-of-life care; and (2) addressing the needs of persons with disabilities with respect to advance directives. You can link to the report at: http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.htm. It includes an excellent literature review on every aspect of advance care planning, analyses of key ethical and legal issues, and a discussion of opportunities to enhance the effectiveness of advance care planning and advance directives. The report is particularly timely as health care reform is in the public policy forefront, and several bills are pending on the Hill regarding a dvance care planning and improving care near the end of life.

In addition to the full report, a background report is available at ttp://aspe.hhs.gov/daltcp/reports/2007/adacplpi.htm.

Happy reading!

Story-telling power of scars

New York Times writer Dana Jennings reflects on his many scars--from accidents and surgeries--and concludes that they tell his personal story and give reasons for optimism.

Here's an excerpt:

[F]or all the potential tales of woe that they suggest, scars are also signposts of optimism. If your body is game enough to knit itself back together after a hard physical lesson, to make scar tissue, that means you’re still alive, means you’re on the path toward healing.
. . .

There’s also something talismanic about them. I rub my scars the way other people fret a rabbit’s foot or burnish a lucky penny. Scars feel smooth and dry, the same way the scales of a snake feel smooth and dry.

I find my abdominal scars to be the most profound. They vividly remind me that skilled surgeons unlocked me with their scalpels, took out what had to be taken, sewed me back up and saved my life. It’s almost as if they left their life-giving signatures on my flawed flesh.
. . .

It’s not that I’m proud of my scars — they are what they are, born of accident and necessity — but I’m not embarrassed by them, either. More than anything, I relish the stories they tell. Then again, I’ve always believed in the power of stories, and I certainly believe in the power of scars.

Religious sisters show dignified and peaceful way to aging and dying

A recent New York Times story describes the peaceful, spiritual nature of an aging community of nuns. Specifically, the story relays the care and introspection that accompanies the ill and infirm sisters who face nearing death.

Here's an excerpt:

Few sisters opt for major surgery, high-tech diagnostic tests or life-sustaining machinery. And nobody can remember the last time anyone died in a hospital . . . .

“There is a time to die and a way to do that with reverence,” said Sister Mary Lou, 56, a former nurse. “ Hospitals should not be meccas for dying. Dying belongs at home, in the community."
. . .

[The primary physician for the sisters,] Dr. McCann said that the sisters’ religious faith insulated them from existential suffering — the “Why me?” refrain commonly heard among those without a belief in an afterlife. Absent that anxiety and fear, Dr. McCann said, there is less pain, less depression, and thus the sisters require only one-third the amount of narcotics he uses to manage end-of-life symptoms among hospitalized patients.

New Alzheimer's Disease research center in Wisconsin

In its summer 2009 newsletter, the South Central Wisconsin Chapter of the Alzheimer's Association describes a new Alzheimer's Disease research center for Wisconsin, located at the University of Wisconsin-Madison.

Funded by grants from the National Institute on Aging and the National Institute of Health, the center will focus on " novel diagnostic tests and potential therapies for the preventions of [Alzheimer's Disease] at a stage when patients have no clinical symptoms (preclinical stage)."

In other news, the HBO series, The Alzheimer's Project, is now available online. The website includes the videos, details about the project, and other resourses.

Zen as a dimension of healthcare (reform)

The L.A. Times reported recently that Beth Israel Medical Center in New York City offers Zen chaplains for expanded spiritual care of its patients and employees.

According to the American Hospital Assn., about 68% of public hospitals have a chaplaincy program. But few have Buddhist monks, and none compares with the program at Beth Israel -- where more than 20 Buddhist chaplains and chaplains-in-training offer bedside meditation, interdenominational prayers and other assistance to pregnant women, dying cancer patients and even stressed hospital workers.

. . .

Advocates say the availability of alternative treatments is crucial at a time when millions of Americans are struggling to pay for healthcare. Instead of relying on drugs and hospitalization, the Zen center encourages stress- and pain-relief through meditation, breathing exercises or simple conversation. Even if such methods cannot provide a cure, they can make patients more comfortable. And the Zen chaplains are able to spend more time with patients, time that busy doctors and nurses often cannot spare.

Congress takes on long-term care insurance

The New York Times' blog, "The New Old Age, " posted this entry about the current congressional discussion about long-term care insurance. The issue has many facets, including consumer protection, financial soundness, and the variables of the marketplace.

Consumers must balance premium affordability with the types of services they may want, the daily benefit amount, the length of coverage and other options, such as inflation protection. But personal needs and the marketplace can change in the decades between purchasing and using a policy, [the executive vice president of the Kaiser Family Foundation] said.

The uncertainty of guessing what care will be needed in the future and at what cost is a huge challenge for consumers. Nevertheless, Congress and insurance companies are trying to work together to provide options and incentives, given the growing pressures on the Medicaid system and Medicaid's tough asset spend-down requirements.

Aging better

A recent story in the Washington Post tells of a 50-year-long health study known as the Baltimore Longitudinal Study of Aging. The study has spanned decades for some participants, giving the researchers glimpses into long-term effects of aging.

Since 1958, a total of more than 1,400 volunteers have agreed to regularly undergo in-depth physicals and momory and other screenings conducted by the study's physicians. The resulting data span more than half a century and are a gold mine for researches interested in the aging process.

In addition to studying aspects of physical health,

[the] researchers were able to disprove the long-held belief that people get crankier as they age. Using data collected from the study's participants, they found that personaity traits don't generally change much after age 30: People who were cranky at 27 were likely to be cranky at 87.

(I love that data!)

The director of the study hopes the data and insights continue well into the future: "The definition of being old is changing; it breaking apart. [People] want to live well, no matter what their age."

Even the best-laid plans...

can go awry. Sometime we call this "law in action"--when the legally correct thing is ignored, and the person in front of you says something else is required or expected. Case in point, the instances where same-sex partners were denied visitation access to their ill partners in hospitals. The New York Times reported on two such couples, where the access-seeking partner had a valid health care power of attorney, but was turned away anyway.

[One] case, now the subject of a federal lawsuit in Florida, is being watched by gay rights groups, which say same-sex partners often report being excluded from a patient’s room because they aren’t “real” family members.

And lawyers say the case could affect the way hospitals treat all patients with nonmarital relationships, including older people who choose not to marry, unmarried heterosexual couples and single people who rely on the support of close friends rather than relatives.

One point of contention in the lawsuit is whether a hospital has a legal duty to its patients to always give visiting rights to their designated family members and surrogates.

Stay turned for an interesting, evolving area of healthcare, family, and patient-rights law.

Celebrity, privacy, and inelegant charitable solicitation

By now, nearly everyone knows that actress Farrah Fawcett has serious cancer, and the media have reported on her every twitch. The L.A. Times ran this piece about how her medical privacy was breached for the sake of tabloid news and how her treating hospital asked for a large donation from her for a cancer foundation.

In an interview with the Times (given last August, but green-lighted by Fawcett recently), "Fawcett described how she was deprived of the choice that most other cancer patients have: when, and even whether, to share information with family, friends or strangers."

In the time since the interview, the hospital employee who leaked the information was criminally prosecuted and convicted, the medical center has attempted to remedy its policy, and the governor of California has signed a stricter medical privacy law.

On the topic of the solicited donation, the story notes:

The university went so far as to give her a prewritten letter that she could sign and fill in a dollar amount for the foundation, documents show. It also created an official-looking proposed announcement that said, "Ms. Farrah Fawcett has established a fund in the Division of Digestive Diseases with the expansive goal of facilitating prevention and diagnosis in gastrointestinal cancers."

Keep talking about advance directives until everyone has them

Facing a loved one's serious medical condition or end of life is always agonizing. But it approaches being unbearable when there is no way of knowing what the person would want for treatment or care.

Advance health care directives are SO IMPORTANT and can spare families a world of grief. Advance directives and why people tend to avoid them is the topic of a recent post on the New York Times' blog, "The New Old Age."

In light of the recent National Healthcare Decisions Day (April 16), consider this excerpt:

One reason is that advance directives may be misperceived, theorized Nathan Kottkamp, a health care attorney in Richmond, Va., and organizer of this month’s National Healthcare Decisions Day. People may equate such documents with limiting care, with “pulling the plug.” In fact, Mr. Kottkamp said, “Your living will can say you want every medical treatment known to science applied to you at the end of life. Or no treatment. Or anywhere on that spectrum.”

Caregiving lessons from a two-legged friend and from a four-legged friend

Two recent pieces in the New York Times discussed the difference a caring companion makes in coping with serious illness.

First, a medical student reflects on the comfort and companionship a man gave to two patients who faced death and long recovery.

His story, I realized, was a kind of love story, and in some way it evoked all of our stories, whether we are doctor or patient, comforter or comforted, healer or healed. Josh reaffirmed for me what we medical professionals know but all too easily forget: the human story is not a series of illnesses and treatments that we manage, but is an unfolding mystery — a process with which we ourselves are in ongoing communion, both as witnesses and as full participants.

Also, from the "Well" health blog, Dana Jennings tells Life Lessons from the Family Dog--the author's struggle with agressive prostate cancer and the contemporaneous age-related decline in his dog's health.

Even so, as I face my own profound health issues, it is my dog’s poor health that is piercing me to the heart. I’m dreading that morning when I walk downstairs and … well, those of us who love dogs understand that all dog stories end the same way.

. . .

Dogs also tell us – especially when we’re sick – of our own finitude. And, partly, that’s why we cry when they die, because we also know that all human-being stories end the same way, too.

Caregivers who are (too) young

When a child cares for an ailing parent, we usually think of an adult child caring for an infirm octogenarian. However, recently, the New York Times looked at minor children who care for their middle aged parents. As you might expect, the results are difficult and stressful, especially when financial resources like insurance are scarce and the families have few others to depend on.

Across the country, children are providing care for sick parents or grandparents — lifting frail bodies off beds or toilets, managing medication, washing, feeding, dressing, talking with doctors. Schools, social service agencies and health providers are often unaware of those responsibilities because families members may be too embarrassed, or stoic.

Some children develop maturity and self-esteem. But others grow anxious, depressed or angry, sacrifice social and extracurricular activities and miss — or quit — school.

Educators and social workers try to address the gaps in the lives of those in need. But identifying the families is only the first step. Sometimes, resources are just not at hand.

(Photo by NatyRive; used by permission.)

Some introspection for assisted reproduction professionals

More on the ethics, family expectations, and financial costs of assisted reproduction in the aftermath of "the octuplets."

The New York Times recently ran this piece on the unfolding questions around assisted reproduction. Here's an excerpt:

[U]nlike some other countries, the United States has no laws to enforce those guidelines [of the American Society of Reproductive Medicine]. The Centers for Disease Control and Prevention has a surveillance system that collects data on fertility clinics, but reporting is voluntary and there are no government sanctions for not reporting.

As a result, experts say many doctors are still implanting too many embryos to increase the chance of pregnancy. Only 11 percent of in vitro procedures in the United States involve single embryos, according to 2006 data from the C.D.C.

But the 2008 guidelines say that in many cases, it is healthier to implant only one embryo, even if it means the process has to be repeated, because of the risk of multiple births. In the case of Ms. Suleman, the California Medical Board said it was investigating her fertility doctor, Michael M. Kamrava, to determine whether accepted standards of medical practice had been violated. In an interview with NBC News, Ms. Suleman, 33, said that Dr. Kamrava had implanted six embryos, and that two of them had divided into twins, resulting in eight babies.

Like I've said before, sometimes the laws or regulations for new areas of life have a hard time keeping up. In this area, it's not even in the rear-view mirror.

(Photo by Colin Gregory Palmer; used by permission.)

Birth of octuplets causes ethical stir

By now, most people have heard about the 33-year-old California woman who gave birth to octuplets. The astonishing thing is that she conceived the babies by having the embryos implanted. In addition, she already has six other children.

In assisted reproduction circles, HUGE ethical questions are swirling. Just for starters, as the Washington Post reports,

. . . [T]he medical community, particularly fertility doctors, [says] it goes against the mission of their work: to minimize high-risk, multiple-birth pregnancy and safely provide a woman with a single healthy baby. It is also raising questions about the lax regulations covering doctors and clinics that provide such services.

The reality is that assisted reproduction is governed more by guidelines than by strict regulation.