The Obama administration is moving forward with an ambitious, fast-moving agenda to improve the treatment of Alzheimer’s disease and unlock a method to prevent it by 2025.

The final draft of the plan, released today, also sets up a wide-ranging effort to improve the care that Alzheimer’s patients receive and support families.

I am not alone – alzheimers.gov

As many as 5.1 million Americans are diagnosed with Alzheimer’s disease, and that number could more than double in the next few decades, said Health and Human Services Secretary Kathleen Sebelius when she unveiled the plan at a National Institutes of Health summit on Alzheimer’s-related research.

The majority of the plan’s expected funding – $130 million over the next two years – will go toward NIH research, but another $26 million will go toward Alzheimer’s care and public awareness.

Chief among those is a government website, alzheimers.gov, also launched Tuesday. The site serves as a “one-stop shop,” Sebelius said, for patients and their families.

It features information on Alzheimer’s diagnosis, caregiver support, insurance coverage and clinical trials for new treatments.

A radio, TV and print campaign will promote the site beginning this summer and encourage families to plan ahead for the care of their loved ones.

The site will also serve as a resource for health care providers, featuring up-to-date information on how to diagnose and treat Alzheimer’s.

Secretary Kathleen Sebelius

Sebelius noted that the health law requires Medicare providers to check patients for cognitive impairment during annual wellness visits, but it will be increasingly important for all providers to have guidelines for Alzheimer’s diagnosis and to look for signs of illness prior to age 65.

The online resources will complement several on-the-ground initiatives. Grants are being awarded this summer to educational centers that work with geriatricians, nurses and others to develop new curricula and training programs.

Sebelius said that the administration’s goal is to “improve the care, immediately, that people with the disease receive.”

In addition, the administration plans to evaluate how Alzheimer’s patients fare within new health care models, like the medical homes and accountable care organizations being promoted by the health law.

Reviews will focus on changes in patients’ cognitive function and on the efficiency of services provided. Work on that front is projected for completion by the end of this year.

It will take much longer, though, to find new treatments, or even a preventive treatment, for Alzheimer’s. NIH Director Francis Collins said Tuesday that study of the disease is “at an exceptional moment.”

He went on to announce two major research grants: one will evaluate a nasal spray that could improve patients’ brain function; the other will test a preventive medication among a large family in Colombia whose members have a genetic predisposition to Alzheimer’s.

Know where to turn: alzheimers.gov

The national plan for Alzheimer’s has been through several months of development since President Barack Obama signed the National Alzheimer’s Project Act in January 2011.

Funding, however, remains an issue. The administration announced in February it would devote $156 million over two years to the national plan.

Immediately, $50 million of already available NIH funds were transferred to Alzheimer’s-related projects. Another $80 million was requested as part of the president’s Fiscal Year 2013 budget, which has yet to be passed by Congress.

Much of the $26 million going toward Alzheimer’s care and awareness is also awaiting approval.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Of the 103 who received prescriptions last year, 94 are known to have died. Seventy of these died after taking the medication. Nineteen died without taking the medication. In five deaths, it is not known whether or not they took the medication. For the remaining 9, it is not known if they have died.

Under the Act, physicians can prescribe–but not administer–lethal doses of medications to adult Washington State residents with terminal illnesses who are expected to have no more than six months to live.

Of the 70 patients who died after taking the medications, 93 percent were at home and 83 percent were enrolled in hospice care at the time.

Number of Death with Dignity Participants and Known Deaths, 2009-2011

Participation in the program increased 16 percent in 2011 from 2010.

Under Washington’s Death with Dignity Act, the Department of Health collects information from patients and providers who choose to participate, monitors compliance with reporting requirements, and produces an annual report.

Among the findings for 2011:

• Those who died were between the ages of 41 and 101.

• More than 90 percent lived west of the Cascades.

• 78 percent had cancer.

• 12 percent had neuro-degenerative disease, including Amyotrophic Lateral Sclerosis (ALS).

• 10 percent had other illnesses, including heart and respiratory diseases

Of the 94 participants in 2011 who died, their end-of-life concerns include:

• Loss of autonomy, 87 percent

• Loss of dignity, 79 percent

• Loss of the ability to participate in activities that make life enjoyable, 89 percent

Since the law went into effect in 2009, 255 terminally ill patients have received the prescriptions.

To learn more:

• Read the report (http://www.doh.wa.gov/dwda/forms/DWDA2011.pdf)

• Additional information about the Washington State Death with Dignity Act (http://www.doh.wa.gov/dwda/) is on the agency website.

End of life resources

• Washington State Living Will Registry: www.doh.wa.gov/livingwill.
• AHRQ: Advance Care Planning: Preferences for Care at the End of Life.
• American Bar Association’s Commission on Law & Aging: Consumer’s Tool Kit for Health Care Advance Planning.
• Aging with Dignity: Five Wishes.
• National Hospice and Palliative Care Organization: Caring Connections.
• AARP: Advance Directives – Planning for the Future.
• AARP: Talking about your final wishes.
• National Long-term Care Ombudsman Resource Center: Helpful Contacts.
• Washington State Hospice and Palliative Care Organization: www.wshpco.org.

Time: Peter Goodwin: The Dying Doctor’s Last Interview (Video)

Dr. Peter Goodwin, a family physician and right-to-die activist, took his own life on March 11, 2012, at age 83. He did it legally, with the blessing of his family and doctors, under the Oregon law allowing physician-assisted suicide — the first such law in the country — that Goodwin was instrumental in creating. … He did not look like a dying man; he was chirpy and alert … However, as a result of his fatal disease — a Parkinsons-like condition called coritcobasal degeneration — he could not use his right hand or do much reliably with his left. … “I can no longer eat in public,” Goodwin said. “My balance is gradually deteriorating. My three doctors agree that I’m within six months of dying. My attending physician has given me a prescription for medication to end my life and I have had it filled” (Belinda Luscombe, 3/14). – Subscription required to view the full interview.

The Atlantic: The Doctor Is Out: Young Talent Is Turning Away From Primary Care

Couple the lifestyle and the training experience with the huge debt burden that U.S. medical students accrue, and deciding on a hospitalist career becomes a rational choice. Dr. Wachter of UCSF compares hospital medicine to site-based specialties that came before it: emergency medicine and critical care. All of these specialties represent a convergence of high-complexity and high-cost care in a single location, where it makes sense to have well-trained specialists who handle the specific set of problems encountered there (John Henning Schumann, 3/14).

American Medical News: How Selling A Practice Kept It In The Family

For the past 30 years, Domingo Ngo, MD, has loved being a gastroenterologist owning a solo practice and the small, one-story building it occupies on a tree-lined street in Stuart, Fla. His wife, Josefina Ngo, RN, was the practice’s nurse. … If Dr. Ngo retired and was unable to find another physician to take his place, there was a chance it would have closed. He hoped it would be able to continue if his son (Benjamin Ngo, MD) joined him. They wanted to work together, but the son … didn’t want to be a solo-practice physician. … Dr. Domingo Ngo did what many other practices have done, or are considering doing — he contacted a local hospital to see whether it would buy the practice (Victoria Stagg Elliott, 3/12).

The Atlantic: Daddy Issues

Recently, a colleague at my radio station asked me, in the most cursory way, as we were waiting for the coffee to finish brewing, how I was. To my surprise, in a motion as automatic as the reflex of a mussel being poked, my body bent double and I heard myself screaming: “I WAAAAAAAANT MY FATHERRRRRR TO DIEEEEE!!!” … let us begin by considering A Bittersweet Season, by Jane Gross. A journalist for 29 years at The New York Times and the founder of a Times blog called The New Old Age, Gross is hardly Kafkaesque. An ultra-responsible daughter given to drawing up to-do lists for caregivers and pre-loosening caps on Snapple bottles, Gross undertook the care of her mother in as professional a way as possible. … What could go wrong? (Sandra Tsing Loh, March 2012).

AARP Bulletin: Hospitals May Be The Worst Place To Stay When You’re Sick

Today, more than a decade into the fight against medical errors, there’s little reason to believe the risks have declined substantially for the 37 million people hospitalized each year. In fact, recent studies suggest a problem that’s bigger and more complex than many had imagined. A report released in January on Medicare patients found that hospital staff did not report a whopping 86 percent of harms done to patients. If most errors that harm patients aren’t even reported, they can never be tracked or corrected (Katharine Greider, 3/1).

Columbia Journalism Review: Should Health Journos Use Hospital Safety Data?

In a highly touted effort to improve the quality of hospital care, the federal government has started disclosing data that ostensibly reveals which hospitals are best (and worst) at keeping their patients safe. But a few weeks ago, Kaiser Health News presented some not entirely unexpected news that turned conventional wisdom about patient safety data into, well, not-so-conventional wisdom. A piece by Jordan Rau raised serious questions about the efficacy of the federal government’s efforts to turn patients into savvy shoppers. The data, it seems, may not be ready for prime time. I rang up Rau, a veteran health journalist and an expert in these matters, for a Q and A to help all of us who may be tempted to use the data in ways we probably shouldn’t (Trudy Lieberman, 3/12).

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

By Kristian Foden-Vencil, Oregon Public Broadcasting

This story is part of a reporting partnership between Oregon Public Broadcasting,  and Kaiser Health News.

Helen Hobbs, 93, lives in an assisted living facility in Lake Oswego. (Photo by Kristian Foden-Vencil/Oregon Public Broadcasting).

Terri Schmidt, an emergency room doctor at Oregon Health and Science University, can’t forget the day an elderly man with congestive heart failure came into the hospital from a nursing home.

Helen Hobbs, 93, lives in an assisted living facility in Lake Oswego. (Photo by Kristian Foden-Vencil/Oregon Public Broadcasting).

The man hadn’t filled in a medical directive form, so, by law, Schmidt had to provide all the medical care possible.

“I intubated the man. I did very aggressive things. It didn’t feel right at the time,” says Schmidt. “There was just this sense in my mind that this is a 92-year-old very elderly person with bad heart failure. And about 15 minutes later, when I was able to get ahold of the family.  They said, ‘You did what?  We talked about this! He didn’t want it. We had a big conversation in his room about a week ago.’”

Oregon has been in the forefront of trying to make sure a person has as much control over the end of his or her life as possible. The state pioneered a form known as a POLST, for Physician Orders for Life-Sustaining Treatment, that has been adopted by 14 states and is being considered in 20 more. The form offers many more detailed options than a simple “do not resuscitate” directive.

That’s good for Helen Hobbs, who is 93 and lives in an assisted living facility in Lake Oswego. Age has bent Hobbs low and she uses a walker, but she is very clear-headed on this topic.

“You know, death is part of your life. You know you’re going to get there someday so let’s make it as pleasant as possible,” Hobbs said. “I mean, would you like to stay in an unconscious condition for years while people kept you alive with feeding and hydration tubes? No.”

Hobbs outlined her end-of-life medical decisions a couple of years ago, after a serious surgery. She used Oregon’s form. It is signed by her doctor, so it’s legally enforceable.

Reading it, Hobbs says she likes the fact that it offers a lot of different options.

“Yeah, I did want antibiotics in case of infection. I don’t want CPR if I’m in cardiac arrest. I don’t want to be tied down with tubes,” Hobbs says. “You know there’s no point in prolonging it. I mean, death can be natural and it’s not that bad.”

Administrators at her senior residence advised Hobbs to keep her POLST form in a plastic tube in her freezer, so EMTs will know where to find it.

Other nursing homes tell residents to keep their forms under the sink or on the fridge. It’s not exactly a perfect system.

Consider the case of Wanda Pucket from Eastern Oregon. Despite being 85 and close to death, she was airlifted to the hospital; given extensive surgery; and kept alive in the intensive care unit for days.

Pucket had a form outlining her wishes not to be resuscitated, but nobody knew where it was. Her family couldn’t be reached before the extraordinary measures were taken.

Pucket’s daughter Kaye Hanni estimates the whole thing cost taxpayers close to $100,000.

“She would be so upset if she knew that kind of money was spent on her,” Hanni says. “Yes, we want to be humane and yes, we want people to treat us with respect. But is respect that kind of aggressive care?”

To avoid situations like Pucket’s, the Oregon legislature set up a database several years ago to deal with the problem of inaccessible POLST forms.

Now EMTs and doctors can access the state database to see if someone wants to be resuscitated.

That database is beginning to generate some interesting facts about the medical interventions people want as they die, according to Dr. Susan Tolle of the Oregon Center for Ethics in Health Care.

“We have really learned that this is not a black and white process,” Tolle says. “Less than 10 percent of people wanted to refuse all treatment. A majority want some things and not other things.”

Tolle avoids the topic of whether these detailed end-of-life instructions save money; she is wary of starting another “death panels” debate. But the database has allowed the state to quantify the policy by some measures.

“What we found was that if people marked ‘comfort measures only’ and ‘do not resuscitate’ and did not want to go back to the hospital…there was a 67 percent reduction in life sustaining treatments, primarily hospitalization and emergency room visits,” says Tolle.

Still, you don’t have to look far to find people who don’t like the forms. Christian Brugger is a professor of moral theology at the Saint John Vianney Seminary in Denver.

“I’ve heard often that elderly patients can feel pressured by the medical community or by their family, not to be a burden,” says Brugger. “I think those kinds of pressures are very hard to calculate. And we want to be very careful that we don’t put those kinds of pressures on the elderly.”

Brugger says giving a family member, or friend, a durable power of attorney is a much better solution to this delicate issue.

But Helen Hobbs says she filled in her POLST form to make sure her son doesn’t have to make difficult decisions as her life ends. She was grateful her husband had made his decisions known before he died.

“When somebody’s unconscious and not going to get better, it’s kind of silly to put them on a feeding tube,” Hobbs says, recalling how she refused that option for her husband. She was at peace with the decision. “We had talked about it together many times and neither one of us wanted that kind of treatment.”

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Seniors Need To Reevaluate Their Needs For Popular Medical Treatments

A KHN Interview

By Judith Graham

This story was produced in collaboration with 

Nortin Hadler, a professor of medicine and microbiology/immunology at the University of North Carolina at Chapel Hill, has been warning for years about the lack of evidence supporting many popular medical treatments and tests.

His work is controversial. In books such as “Stabbed in the Back: Confronting Back Pain in an Overtreated Society” and “Worried Sick: A Prescription for Health in an Overtreated America,” Hadler argues for holding medical interventions to a high standard: Do they reduce mortality or substantially lessen the burden of illness? Do potential benefits significantly outweigh potential harms? Unless research proves this, the interventions should be avoided, Hadler insists.

In his newest book, “Rethinking Aging: Growing Old and Living Well in an Overtreated Society,” the 69-year-old Hadler turns his attention to older Americans and the challenging medical decisions they face

Hadler’s conversation with Judith Graham has been edited for clarity and length.

Q: You’ve called your book “Rethinking Aging.” What do you want readers to understand about aging?

A: This book is a celebration of the fact that the baby boomers and the traditionalists — the generation that came before the boomers — are the first in the history of the world to hit age 60 and to be able to say, rationally, “What do I want to do with the next 25 years of my life?”

We shouldn’t worry so much about what will kill us; instead, we should be focusing on making it to age 85 and having a pleasing journey along the way.

Q: You’re concerned about the medicalization of aging. Explain why.

A: You can be healthy well beyond 60, but you’ll be different than you were when you were 20. You’ll have different posture, wrinkles and a lot of other changes that are less obvious but age appropriate.

We have to be very, very careful about calling any difference from when we were younger an illness or a disease.

And we have to be even more careful about telling people that we have things we can do to “fix” these differences, but this happens all the time. That’s the medicalization of aging.

Q: What’s the alternative?

A: Helping people understand what’s normal for their age and how to accept and adjust to those normal changes.

Q: You talk a lot about the importance of older people making informed medical decisions.

A: For the first time in the history of medicine, we have a tremendous amount of information about efficacy: what makes sense to do medically and what doesn’t.

What I want to teach people is that it’s perfectly appropriate for patients to ask their doctors, “How certain are you that what you are offering me will produce meaningful benefits? What does the evidence show about the possibility of harm?”

Q: Can you suggest some other questions people might ask?

A: People should want to know the likelihood that death will be postponed by doing something. What is the likelihood of the same outcome, or close to the same, if one doesn’t have the treatment? Out of every 100 people, how many are helped by this intervention?

Q: What about people who face really serious, life threatening illnesses?

A: You want to know whether a proposed intervention will be effective given your context: your age, your degree of frailty, other illnesses that you have. How much benefit will you get: an extra three months, an extra year? If it’s a year, what kind of year will it be? Will I feel absolutely awful? What will the quality of my life be?

I once took care of a very, very famous physician. He was an octogenarian with heart disease, but he was very active and sharp as a tack. Well, he found out that in his belly was an expanding aortic aneurism – a surgically treatable potential killer.

He and I had multiple conversations about what to do and each time he would say, “I’ll be damned if I let them do surgery on me.”

He knew there was a high risk of surgical mortality because of his age and his frailty. He knew that urological complications were almost guaranteed and cardiac complications were probable. He didn’t want to try to live through that.

And he didn’t have to because he died of a stroke, unrelated to the aneurism, several years later.

Q: What about common problems like lower back pain? You say surgical treatments aren’t effective. But what are older people supposed to do?

A: I’m not belittling the pain. In many cases, however, it will resolve over time without medical interventions. The job of the doctor, once the doctor does an exam and realizes there isn’t something extraordinary going on, is to help people deal with the discomfort to minimize suffering.

The most effective way to do that is not with surgical violence or even with powerful pills. The doctor helps the patient adapt and address the contextual issues in their life that might interfere with coping while they wait for healing.

Take an older woman who comes in complaining of knee pain. There are no surprises on examination. She’s been your patient for a long time; you know her husband died recently. In our culture, we are primed to assume that the knee pain is interfering with coping with her loss. Science suggests the opposite: the grieving makes the knee pain seem more intense.

With time and trust, a physician can help a patient see this clearly and discover coping skills in the process. Pills, arthroscopy and surgery are missing the forest for the trees.

Q: You have very strong and controversial opinions about medical procedures commonly performed on older adults — without adequate justification, you say. Which would you put at the top of the list?

The first would be interventional cardiology and cardiovascular surgery for coronary artery disease. This includes coronary artery bypass surgery, angioplasties and stents. These were designed to spare one from fatal and nonfatal heart attacks.

I think these procedures should not be done. We have multiple trials comparing doing them versus taking care of people conservatively, and these studies show that essentially no patient is advantaged by these interventions.

The second would be arthroscopic surgery for knee pain. Again, studies show that patients gain no advantage from arthroscopic surgery.

They do as well, even better, with appropriate exercise, a little Tylenol, a supportive community and patience. But going the nonsurgical route calls for coping skills, which many physicians don’t even talk about with older patients.

Q: One of your chapters is called “decrepitude.” How do you define that?

I think of it as gray hair of the musculoskeletal system and other parts of the body. There are many age-dependent changes that increase the challenge of doing things physically.

My question is: Do we want to call gray hair a disease or do we want to reframe this period as an essential time of life? I want to reframe it by talking about what we can do to circumvent limitations and how to cope when we can’t.

We’re taught and marketed that all changes in appearance and in function in older people are forms of disease that demand treatment.

But often, that isn’t true. Much that is termed a disease is a normal aspect of this time of life and needs to be viewed as such. Sure, there are challenges, but we’re less inclined to label life challenges as diseases in other phases — puberty for example.

We need to examine our preconceptions in open dialogue with our physicians and others in our community.

Q: In the next chapter, “frailty,” you say this chapter of life has joyful features. What do you mean by this?

A: Frailty is a challenging time, but in caring for the frail, we can be enlightened about what it means to be human. There’s an awful lot that you can learn from frail people. Children feel it more quickly than we do because we’re too busy to really pay attention.

Of course, there are elements of frailty that can take away humanity. Dementia is an example of that. But generally, there is no reason to warehouse the frail, not to talk to the frail, not to be loved by the frail.

They may not be the people they once were, but they are human beings and there is great value to be found in them.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.