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Age and agency Alumni and faculty insights on elder care

 

 

Age and agency:
As baby boom becomes senior surge, is our ethos of elder care meeting the crisis?
by Susan Rosenberg

Feeling pretty spry? Old age not even on
your radar screen? Look again. The “graying of America” is a demographic tsunami, whose societywide implications are enough to turn anybody’s hair white.

In 2004 citizens over sixty-five years old cast 19% of the votes; in the 2040 election, they’ll cast 41% of all votes. In the 1960s only 1 million people were eighty-five and older; in 2030, there will be 9 million of them. In the past decade the number of people who will turn sixty-five in the next twenty years jumped by 39%, compared to a 13% rise in the overall under-sixty-five population. Today the sixty-five-and-overs are more than 36 million strong, or about 13% of the population; by 2050 they’ll total 87 million, for a 21% share.


If those census figures don’t give you palpitations, consider that 83% of Americans die while covered by taxpayer-funded Medicare. A PBS Frontline documentary reports that agencies charge for home health aides at about $19 per hour; aides earn wages of under $9 per hour. Aging even affects border policies: the Wall Street Journal reports that immigrants, legal and not, make up a disproportionate share of those who care for the elderly in the US. But a Johnson & Johnson survey estimates that 80% of long-term care in the US is still provided for free by family and friends; their time off for this purpose costs their employers as much as $29 billion annually.

Of course, with such a fast-growing Gray Power lobby, senior citizens might well win important reforms in elder-care policies and programs. But how should those reforms take shape? What has begun to change already, and which issues will become most pressing in the future? Some Skidmore experts are on the case.


Crystal Moore, on Skidmore’s social-work faculty, was one of twelve scholars nationwide to earn
a 2006 research grant from the Gerontological Society of America. She co-edited and contributed
to Palliative Practices: An Interdisciplinary Approach (Mosby Inc., 2005). As one of GSA’s Hartford Faculty Scholars, Moore is using the $100,000 grant for a two-year study of caregivers’ support for elderly patients, especially in health-care communication and decision-making. While death often came swiftly a century ago, nowadays medical advances usually forestall it, so the majority of today’s old people live with a chronic illness—or several of them—for months or years. But the welter of new technologies and specialties turns the medical system into “another culture, where doctors speak a different language and operate by unfamiliar rules,” Moore says. Because “patients and families do bear some responsibility in collaborating with their physicians,” she wants to determine how they might best navigate the rocky communications road, so they can proffer clear information and questions, rather than being reactive or overly passive.

Moore allows that older folks are more likely to see doctors as authorities who shouldn’t be questioned. Besides, being ill or infirm is often depressing, and “it’s hard to mobilize yourself to ask questions and make decisions when you’re depressed,” notes Karolynn Siegel ’71, a professor at Columbia University and director of its Center for the Psychosocial Study of Health and Illness. She says, “A division of labor between patient and family sometimes means that a family member becomes the communicator,” especially for an elderly patient with hearing or memory trouble. In some cases, too, “doctors are afraid to communicate bad news directly to the patient. They’re willing to be more straightforward with a family member, believing they’re being protective of the patient.” But Roberta Springer Loewy, UWW ’81, argues that “‘sparing’ a patient the truth is usually a cop-out” and only fuels the fear that most haunts many elderly people: loss of self-determination. Loewy, on the bioethics faculty at the University of California at Davis, is co-author of The Ethics of Terminal Care: Orchestrating the End of Life (Kluwer/Plenum, 2000). Siegel says physicians generally expect their clients “to be well-informed and/or to want to participate in care decisions.” For Skidmore’s Crystal Moore, this patient—or caregiver—autonomy only works well when communication skills are honed. “A physician may tend to look skeptically at family members’ insights,” she says. But helpful partnerships can be forged, “if we can coach caregivers to be organized, appropriately assertive, and objective.”

Along with the input of family caregivers, elderly people are relying more and more on written advance directives to be followed if they became unable to communicate their preferences in person. “Top of the list,” asserts lawyer Frank Yunes ’94, “are a health-care proxy and a durable power of attorney.” If no one has been designated to make care decisions for a patient who can’t communicate, “it becomes a decision by committee, and as we saw in the Terri Schiavo case, they might not all agree.” A power of attorney authorizes a proxy to manage a full range of legal and
financial matters for the ill person.

Certainly finances are a pressing concern for many retirees. A Merrill Lynch survey of soon-to-retire Baby Boomers shows that while only 17% worry about dying, 48% worry about winding up in a nursing home and 53% about paying for health care. As ethicist Loewy quips, finding good health coverage is something of “a Nietzschean crap-shoot.” A New York Times editorial last year suggested policies to help older people pay for in-home care by taking out “reverse mortgages,” whereby money is borrowed against their home equity but only paid back from the proceeds of selling the house, which usually happens after the owners die. While many older people prefer to set aside their homes or savings to pass on to their children, financing their own care might have to come first, agrees Yunes. It can be tricky, he says: “Say a son comes to my office with his elderly mom, and she says, ‘I want my son to inherit my assets.’ Well, she’s my client, not her son, so I want to help her live as best she can, even if that means she spends every cent to ensure proper care for herself.”

As for specific health-care decisions in a crisis, Yunes cautions that a living will isn’t legally binding in all states. Still, “it’s a comfort for those making the decisions, to see how you’ve expressed your wishes.” Yunes also recommends his older clients sign a HIPAA authorization (referring to the 1996 Health Insurance Portability and Accountability Act’s privacy restrictions) in order to give a friend or family member full access to their medical records.

“With the Baby Boomers starting to retire—like my parents—I have more and more clients coming in for estate planning,” Yunes says. “Nobody likes talking about death. But it doesn’t have to be morbid. Advance directives are acts of love for your family, to make things easier for them.”

But not always easier for ethicists. Roberta Loewy’s book brings up a thorny conundrum.
“Is the gentleman in a nursing home, quietly vegetating in the sunshine while being fed raspberry sherbet, still the same sturdy professorial type who ten years before decided that this was not a way he was willing to endure?…This man now barely recognizes his family and is unable to read, though he still apparently enjoys sunshine and raspberry sherbet.…If the present person has no real connection (other than a physical one) with the former, is the former entitled to decide for the latter?” Everyone’s idea of a terrible fate changes over time (as Loewy writes, “many teenagers think that being fifty qualifies”). And for some people, mind-body is a crucial fault line: If we lose all four limbs, our being the same person would not be questioned, she explains, because “intuitively we hold the psychosocial to be the essence of personhood.” It’s when we lose our memory of the past or our relationship to the present that we become perhaps a different person. Therefore, Loewy argues, advance directives are hardly an ideal solution when patients lose mental capacity. But, she allows, given the “poor, bad, and atrocious” options, honoring the person’s own, previously expressed wishes is “the least troubling.”

The rise in advance directives also gives pause to bioethicist and physician Michael Felder ’77, a professor at Brown University Medical School. After the Patient Self-Determination Act became
law in 1991, public-interest groups touted the trend and equated it with an improvement in care, Felder says. “But the downside I saw was that doctors’ values infiltrated into these conversations more. There was a presumption by doctors, nurses, med students that if patients were old and sick their quality of life must be low, their suffering was worse than death, and it would be a kindness to limit treatment and recommend CMO, or ‘comfort measures only.’” When medically there’s “nothing more to do,” fellow-ethicist Loewy fears that clinicians may be tempted to essentially abandon what they see as a hopeless case. She counters, “There’s always something we can do, and good palliative care takes a lot of doing.” Moreover, she writes, hope takes many forms: patients at the end of life “can, with justification, hope that what remains of their life can be made more rather than less meaningful,” through a deepening of relationships or attainment of certain goals. Caregivers should stay involved with patients, “supporting their justified hopes and gently speaking about their unfulfillable hopes.”

Philosophically, Felder points out, individual entitlement might legitimately lead some older patients to reject the notion of medical hopelessness and assert a right to the same ambitious treatment as younger patients, while “others might feel that at a certain age you should yield your claim to a cure and just maintain a claim to care.” Consider Oregon’s policy of allocating health-care resources according to a list of cure rates, treatment efficiency, and so on. Felder says, “I might argue that a wealthy, compassionate society should treat all patients. But if we accepted the premise that we can’t afford full health coverage for all, then it would be justifiable to ask, ‘What can we accomplish? What’s fair? What will help the most?’” Less logical, perhaps, given the coming swell in the older population, is which medical studies get handsome funding and which are left begging. For Felder, “It’s scary. Funding is painfully slim for aging-related health research.”

On the question of resource allocation, Skidmore scholar Crystal Moore says there’s evidence that social services—hospital intake and discharge planning, communication help, referrals, education—can pay for themselves in reduced emergency-room visits and hospital admissions. But so far, medical insurance plans rarely reimburse for such services; in fact, most pay a piece rate, rewarding for the number of patients and procedures, not for the time spent on each. Columbia’s Karolynn Siegel adds, “With ‘managed care’ and shorter hospital stays, there may be no time to meet with the facility’s social worker. Often the family visits in the evening, and the social workers go home at 5 p.m.” Moore says the value of social services is being acknowledged lately, but talk is cheap. She’s a reviewer for a new social-work journal addressing end-of-life and palliative care, but, she notes, “I haven’t yet seen this care put into practice much, because it’s not a covered expense.”

Indeed the American medical system’s basic instinct and pointed focus is “diagnose, treat, and cure.” But as PBS’s Frontline notes, that standard of care can be downright irrelevant for the very elderly. Medicine hasn’t established a standard based on comfort, aid, and support. To fill the gap, independent (and cost-free) patient-advocacy organizations and support groups have mushroomed in popularity, especially online. (Even Skidmore is in on the act: Class of ’61 Professor Denise Smith, on the exercise-science faculty, and a group of ’61 grads are planning their own symposium titled “Women’s Health and Fitness in Retirement.” Smith and colleagues will discuss such topics as heart, bone, and muscle health; students and faculty will describe their exercise-science research; and an alumni panel will share strategies for wellness in retirement.)

Ethicist Loewy maintains, “Pain is felt more intensely and is more readily translated into suffering when the social situation is neglected.” Staying involved with others and feeling useful, in a family or an advocacy group, can help elderly people see themselves not just as patients but also as active doers with responsibilities and autonomy. Assisting people “to find meaning even as they approach their end,” she writes, is the duty of clinicians, loved ones, and other supporters.

“Every day I speak with an elder is a day that I see the benefit of home-care and community services,” declares Gillian Carter ’06. A case manager for the Boston area’s Bay Path Elder Services, she says caregiver stress is “easily observed during home visits when caregivers spend the majority of the time talking about themselves and the amount of work they do, not about the help that the elder might require.” Then when home-care workers pitch in on some chores, her elderly clients tell her “how grateful they are to enjoy time with their former caregivers who can now simply be loving family members instead of full-time assistants.” As Karolynn Siegel explains, “There’s a norm of reciprocity in our society. If people are old or sick and can’t reciprocate a favor, they’re reluctant to ask, or they feel they’re a burden to their family.”

Skidmore’s Crystal Moore says, “Families are beanpoles, not trees. Unlike a large clan or institution that can spread the duties widely, a nuclear family concentrates the weight of caregiving on one or a few people.” Siegel remarks, “For the sandwich generation—people in their forties and fifties (mostly it turns out to be women) who haven’t finished raising their children and are also looking after their elderly parents—it’s a Herculean task.”

But lately Americans are having fewer children. And paid care workers are already spread paper-thin. The US Health and Human Services Department predicts that the long-term care workforce, about 1.9 million people in 2000, must reach 2.7 million by 2010 and 5 million by 2050 in order to meet demand. And whether handled informally by family and friends or professionally by elder-care agencies, it’s no easy task to manage chronic symptoms, coordinate care with multiple doctors and therapists, help maintain function—and ensure empathy and dignity as function wanes—for each individual.

Moore asks, “Can we keep up (or in fact catch up) to help so many patients and caregivers cope?” She’s got her doubts, unless the medical and insurance establishment begins to pay for social-work services the way it pays for acute care now. At least the notion of more outpatient care and more patient and caregiver education is being bruited about, and her research did win major funding. Also Moore and her colleagues are hard at work teaching young people about elder issues. “For many students,” she concedes, “gerontology sounds like a big snooze. But when you look at the family dynamics around it, of course that’s of interest
to all ages.” According to Tamara Smith, a fellow gerontologist on Skidmore’s social-work faculty, “Students are more interested in this than they used to be, in part because it’s now a job market that’s in the news.” Certainly new graduate Gillian Carter got into her case-work job after volunteering as a student at Mary’s Haven, an end-of-life home in Saratoga Springs. Carter says, “I am convinced, now more than ever, that our country needs to become more invested in the care of our elders. We should be preserving the value of their lives, as they so greatly affect ours.”

 

For more information, Prof. Crystal Moore recommends:

• A Caregiver’s Challenge: Living, Loving, Letting Go, 2nd ed., by Maryann Schacht, Feterson Press, 2005

• Caring for your Parents: The Complete AARP Guide by Hugh Delehanty and Elinor Ginzler, Sterling, 2006

• National Family Caregivers Association, www.thefamilycaregiver.org

• National Alliance for Caregiving, www.caregiving.org

US Administration on Aging, www.aoa.gov

www.eldercaremediators.com

“Study to Understand Prognoses and Preferences for Out comes and Risks of Treatments (SUPPORT),” reported in the Journal of the American Medical Association 274 (20), 1995.


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