Is It Worth Paying An Expert To Help You Navigate
The Health-Care System?

By JOSEPH F. COUGHLIN

There is a new cost in retirement and older age — navigating complexity. While managing finances in retirement can be a challenge — surviving the health-care and home-care system can make the most complex portfolio or financial advisor's Monte Carlo simulation look like a family board game.

When was the last time you had to go to the hospital? Had to organize the complexities of home care for a loved one? How well do you remember the experience? Parts of it are probably something of a blur. We're as helpless we can possibly be when sick, forced to give ourselves over into the hands of others. Sometimes, the best we can manage through the ordeal of illness is to simply try to keep our heads up.

Old age and chronic illness turn that period of vulnerability into a near-constant state of affairs. Often, older adults and their families can do but nothing but hope that they will be treated by the health-care system with their best interests in mind. Sometimes they won't be — not because doctors and nurses and therapists and administrative staff aren't doing the best work they possibly can to help patients, but because a hospital is a massive institution with an endless stream of work flowing through it, not just a place of healing, but an ever-whirring bureaucratic machine. Successfully navigating that complex system is critical to both your or a loved one's health outcomes as it is in managing the costs of health care.

The complexity of the health-care system plus our rapidly aging population has given rise to a new kind of health professional, the geriatric care manager (or GCM), now officially referred to as an Aging Life Care Professional. GCMs are advocates for older adults. They typically don't personally provide care themselves. Instead they collect and present information, help to design a care plan, and navigate the health care system to implement and facilitate that plan on behalf of the family that pays them. They are guides for families who must travel the sometimes-bumpy modern road of aging.

In this sense, a GCM is more like a lawyer or a financial advisor than a doctor. A GCM's value comes primarily from having a large repository of knowledge of a complex system, not necessarily any particular hands-on expertise. Further even from lawyers and financial advisors, there is no defined educational track (yet) for geriatric care management, and a GCM doesn't need a license (yet) to practice. Although experienced nurses appear to be leading the trek in the business of care coordination and management. Geriatric care management is part of the frontier of the burgeoning advanced service economy that is being driven by an aging population.

How much does navigation expertise cost? Effective expert knowledge never comes cheap. A GCM's time runs somewhere in the neighborhood of $125-$200 an hour. If you think of geriatric care management simply as help in picking out Dad's nursing home from a list, that may sound pretty steep, a luxury affordable only to those for whom money is no object. But there could soon come a time that navigating the depths of the health care system without a care manager will seem just as foolhardy as diving into the legal system without a lawyer.

GCMs work toward the holistic well-being of their older adult clients. At the same time, they provide a family with the information to make well-informed decisions about their elder's care. With the staggeringly high costs involved in making such choices, the difference between a well-informed and a clueless decision can be thousands of dollars, not to speak of the well-being of the care recipient.

Now for a one-question health care pop quiz: Do you know what a hospital case manager is? If you or your loved one winds up in a hospital bed, case managers are the ones who decide when you leave and where you'll go to next. They have the power to choose which rehab or assisted-living facility your parent will go to. Their number-one responsibility is to open up beds for the next round of sickly individuals.

They do their best to accommodate the specific needs of patients, but with the workload they face, it's inevitable that their recommendations will not always align with what the patient thinks is best, especially when that patient is an elderly adult with a difficult confluence of issues, preferences and needs.

This is just one example of why GCMs are so important, and perhaps one day will be indispensable. They represent the power of knowledge in a world where we live under the influence of large institutions and complex system that are sometimes too big for us to grasp – just when we may need them the most and ourselves too little for them to notice.

Reprinted from: http://www.marketwatch.com/story/is-it-worth-paying-an-expert-to-help-you-navigate-health-care-in-retirement-2016-08-12
Published: Aug 12, 2016 2:59 p.m. ET

Joseph F. Coughlin, PhD (coughlin@mit.edu) is Director of the Massachusetts Institute of Technology AgeLab. His research addresses how individuals, families, businesses and governments make decisions and plan for the new future of old age. 

The Decline of Tube Feeding for Dementia Patients

By Paula Span
THE NEW OLD AGE AUG. 29, 2016

Reprinted from: http://www.nytimes.com/

Dementia from Parkinson’s disease was taking its toll on Joan Jewell.

She could still respond to music, if a helper wheeled her to the Sunday concert at the Hebrew Rehabilitation Center in Boston, but she spent most of her time in bed. Sometimes she recognized family members; often she didn’t. She couldn’t say more than a few words. She had trouble swallowing.

Last year, her doctor pointed out that she was losing weight and that a feeding tube, surgically inserted through her abdominal wall, might help her regain a few pounds.

Her son James, who served as her surrogate decision maker, responded the way a growing number of family members do: He said no. The proportion of nursing home residents with advanced dementia who receive a feeding tube has dropped more than 50 percent, a new national study has found.

The researchers, analyzing federal nursing home data, reported that in 2000, nearly 12 percent of patients with this terminal condition had feeding tubes inserted within a year of developing eating problems. By 2014, the rate had fallen to less than 6 percent.

“It’s getting much less controversial” to decline a tube and rely on hand feeding, said Dr. Susan Mitchell, a geriatrician and senior scientist at the Harvard-affiliated Hebrew SeniorLife Institute for Aging Research. “This is becoming the prevailing wisdom.”

Dr. Mitchell has had a lot to do with that shift. As a young physician training in nursing homes, she wondered whether feeding tubes actually helped these bedbound elders. At the time, roughly a third of cognitively impaired nursing home residents were tube-fed.

She and a cadre of researchers, primarily from Harvard and Brown universities, have been methodically reporting their findings for 20 years, demonstrating in one article after another the drawbacks of artificial feeding for people in the final stages of dementia.

Change can come slowly in medicine, but it does come. In 2013, the American Geriatrics Society updated its recommendations against feeding tubes for older patients with advanced dementia. The Choosing Wisely campaign, which publishes lists of procedures and tests that patients and families should question, and the Alzheimer’s Association have taken similar positions.

Now, families and physicians seem to have gotten the sorrowful message: Dementia is a terminal disease. Eating and swallowing problems eventually plague almost everyone who has it. Feeding tubes don’t help. In fact, they can make matters worse.

Consider, first, how ill these patients are. Advanced dementia, as Dr. Mitchell and her colleagues define it, brings such profound memory loss that people don’t recognize family. They can’t speak more than five words. They’re incontinent. Sometimes they can’t turn over in bed unaided. “They’re dependent on others for all their day-to-day functions,” Dr. Mitchell said.

Even if an aide or relative patiently feeds them, “they may not know what to do with the food in their mouths.” When they try to swallow, they can aspirate food particles into their lungs and develop pneumonia. “For most people, that’s a very poor quality of life,” Dr. Mitchell said.

Feeding is such a primal activity, the first thing we do when someone is born and one of the last sources of pleasure as death approaches. Naturally, families can find it difficult to refuse a fairly minor surgical procedure that provides nutrition.

But a person no longer able to understand why a gastroenterologist is opening a small hole in her belly may find the insertion of a tube confusing and traumatic. The mush that flows through eliminates the taste of food and the social interaction of hand feeding.

Almost 20 percent of the time, the tube is blocked or dislodged within a year, requiring hospitalization. Dementia patients may also try to pull it out, leading to physical or chemical restraints (read: drugs).

Feeding tubes are also associated with an increased risk of pressure ulcers or bedsores, perhaps because they encourage inactivity or cause diarrhea; the ulcers heal more slowly than in people without tubes.

Perhaps the trade-off would be worth it to some families (since these patients can no longer make decisions themselves) if a feeding tube prolonged life. For others, that would be a good reason to refuse one.

As it turns out, though, feeding tubes don’t keep advanced dementia patients alive longer. Several studies led by Dr. Joan Teno, a geriatrician at the University of Washington who has often collaborated with Dr. Mitchell, show that they make no significant difference. After receiving a feeding tube, patients with advanced dementia lived a median of 165 days, and two-thirds died within a year.

Older adults nearing death still do receive feeding tubes, sometimes because families insist, sometimes because health care providers don’t offer enough information to help them decide. Stark racial differences persist: 3 percent of white nursing home residents with dementia had feeding tubes inserted in 2014, compared with 17.5 percent of black residents.

Feeding tubes remain more popular in certain kinds of nursing homes, too. For-profit nursing homes use them more than nonprofits, Dr. Mitchell’s research has shown, and bigger facilities more than small ones. In New England, fewer than 2 percent of residents are tube-fed. In parts of the South, the rate can run up to 10 times higher.

If you see such practices as indicators of a more aggressive approach to end-of-life care in general (Dr. Mitchell does), then you wonder if health care professionals spend more time talking to white families about their options. You wonder if higher Medicare reimbursement for tube-fed patients (and the labor costs of hand feeding) make nursing homes more apt to recommend tubes.

But more and more, you encounter people like the Jewells.

Joan Jewell had worked as a nurse in upstate New York and had cared for her husband as he died of Alzheimer’s disease. James Jewell, whom she encouraged to study medicine, is an internist at the nursing home where she lived.

Years before, when his mother could still contemplate such matters, “we had the what-if discussions,” Dr. Jewell told me.

Mrs. Jewell was clear. “She subscribed to the idea that quality of life was more important than being kept alive at all costs,” her son said. “And being able to do things for herself was part of her definition of quality of life.”

Despite her weight loss, then, he declined medical intervention. In February, Mrs. Jewell began refusing food altogether and soon slipped into a coma. Dr. Jewell and his children were with her when she died, at 89.