The Supreme Court’s recent ruling in favor of requiring all American citizens to have health insurance coverage has eliminated much uncertainty over who will have access to health care, but it has not prepared us for a crisis over the availability and cost of health care that is just about to hit. In fact, some would argue that this crisis is already upon us. FACT: Every day, 10,000 Boomers turn 65, a trend that will continue for the next 18 years—and most of them will live to a ripe old age. FACT: Most people in this group will rely on government programs for help because they live on fixed incomes and don’t have enough friends or family who are able to care for them. FACT: Today, 45 million people, mostly women, are sacrificing income and health insurance to care for aged loved ones, which could rob them of the medical care and financial resources they’ll need when they age.

This is the backdrop against which Altarum Institute held a roundtable, Speak Up! Influential Women Give Voice to the Challenges of Elder Care. It featured five prominent women authors, social commentators and caregivers, to discuss challenges in elder care. During this two-hour event, panelists proposed solutions to the problems the “graying of America” poses. The program was filmed at Detroit Public Television studios.

Although we cannot  avoid the challenges that aging Americans will face —what some have termed the “silver tsunami”—we can change our approach to dealing with this phase of our lives. We can all act now, as individuals and communities, to ensure that we collectively shine in meeting these challenges, rather than being tarnished by failure to protect and care for frail elders. We don’t have much time: Within a dozen years, the number of very old people will skyrocket. Absent better arrangements to support family caregivers, many of these elders will be effectively abandoned by our fragmented care system. And we’ll face that very fate ourselves, when our time comes.  

Dr. Joanne Lynn, geriatrician and director of the Altarum Institute Center for Elder Care and Advanced Illness advises that the U.S. needs to do four things quickly. First, we need to recognize that aging is a special phase of life— just as are childhood and motherhood—one that needs a dedicated, comprehensive approach to services (just like pediatrics and obstetrics). Second, we need to guarantee that people devise care plans that are coordinated and realistic; that move with them from place to place and that are revised over time. Third, we need local communities to coordinate and take a hand in managing the medical and social services that aging people and their caregivers will need. And finally, we need systems that are designed to manage our care from start to finish: Rather than the current silos of services that stop at each facility’s doors, we need cross-cutting, comprehensive and reliable services that we can count on to implement our plans seamlessly and efficiently across time and settings. The person moving from home to hospital to rehabilitation and back to home needs continuity and reliability throughout, rather than a series of gaps and guesses. To get these reforms, we need to advocate for them, with our health care providers, our local leaders, and our elected officials.

Newsweek and The Daily Beast contributor Eleanor Clift introduced the June 5, 2012 roundtable presentation by stating some of the stark realities mentioned above and several others:

• Many older Americans will live for years with severe chronic illnesses that require expensive and labor-intensive care.
• The supply of a paid and qualified workforce to provide care in the home is not keeping pace with the growth of people with disabilities needing care.

During the roundtable discussion, panelists—three of them geriatricians and all of them influential social commentators and family caregivers—described the challenges they had faced in responding to their loved ones’ or patients’ declining health. Much of the session focused on steps that our society can take to meet older Americans’ health care needs and ensure their quality of life.

Muriel Gillick, M.D., a Harvard Medical School professor and geriatrician, pointed out that the increasingly high cost of health care alone is urgent enough to force us to develop ways to help older Americans remain healthier and more independent without breaking the bank. “We’re learning that the approach to treatment advocated by doctors may cause problems for frail older people.” She offered as an example an older patient hospitalized for heart valve replacement surgery who becomes disoriented from anesthesia, causing food to go down his airway, resulting in pneumonia. The pneumonia leads to his getting antibiotics, which cause diarrhea, making him weak. The patient ends up falling and breaking his hip.

Dr. Gillick said that patients and their caregivers  need to “understand what the person’s illnesses are, what can go wrong over time and what the future will look like” so they can make informed choices about medical care. Likewise, doctors should not assume that patients want everything done that is technologically feasible. Most want to be as independent as they can and to be able to do what matters to them—and do not want to suffer, either. Doctors need to talk with patients and caregivers about what interventions make sense based on a realistic understanding of the likely trajectory of their illnesses and of their goals and values.

Dr. Gillick also called for the use of technologies, such as assistive devices and sophisticated computer monitoring to improve care and to ease caregiver burden. She predicted that accountable care organizations—groups of health care providers including physicians, hospitals, and nursing homes that join together to assume joint responsibility for their patients’ medical care—will encourage patients and caregiver engagement.

Cheryl Woodson, M.D., a geriatrician and family caregiver, called for improved communication between all of a patient’s physicians to ensure continuity of care. She stressed the importance of providing incentives, such as loan forgiveness, to encourage more medical students to become primary care doctors, who typically treat older patients and not just a specific ailment, but the patient as a whole.

Dr. Woodson then called for a groundswell of community-based discussion about this topic, to educate the public and attract the attention of policy makers to push for change, which, she said, “comes from the ground up.” She urged people to talk about elder care issues in libraries, in churches and through public TV stations and to find ways to take their message to legislators. “Tell people that they have power,” she urged. Dr. Woodson also suggested that one solution might be to create pre-tax dependent care accounts for workers who care for older adults, accounts that would be similar to those now available for child care expenses.

Dr. Lynn said that we need to change a health care system that was designed to focus on treating people with sudden, life-threatening medical emergencies rather than those with long-term, chronic illness. She said that we can no longer afford to spend extravagantly on expensive treatments that solve only one acute problem, while failing to fund preventive and supportive measures that will keep people safe and healthier overall, and, thereby, out of the hospital. She also advocated that communities take a hand in managing their own local service delivery and its financing.

Lynn Alexander, policymaker and caregiver, called for respite care for caregivers to give them periodic relief from the physical and emotional stress of caring for older loved ones. She also wants to expand existing pilot programs that are examining ways to provide effective support systems for frail elders and their caregivers.

A hospice volunteer commented that many doctors view death as a medical failure rather than an inevitability, and asked how to change this view.

Dr. Gillick agreed. “Nephrologists often failed to acknowledge that end-stage renal disease in 85-year-old patients is more dangerous than cancer,” she said. “The American Heart Association came out with guidelines on this. Now, they or nurses have to talk to their patients about the nature of their disease and the implications of treatment. We have to have information that the patient can understand—a standardized tool.”

Dr. Lynn said that there’s an online version of the advanced directive that patients can take with them when they receive care.

Dr. Woodson explained that doctors may be driven to take extreme measures to prolong life, in part due to the fear of incurring a lawsuit if a patient dies. “Many doctors haven’t been with the families since the onset of the patient’s illness and don’t know where they’re coming from. Communication is key,” she said.

Ms. Alexander noted that families who don’t wish to discuss end-of-life issues or who have private agendas, such as sibling rivalry or other confrontational attitudes, can make it difficult for health care providers to discuss the topic.

When asked why assisted suicide is outlawed in most states for those who don’t wish to die destitute and in pain,  Dr. Lynn explained that, if widely adopted, people with serious health problems might feel pressured or obliged to end their lives for financial reasons or because they fear they’ve become burdensome. “Before we have that discussion, we need to focus first on making sure that people can live decently until they die. We don’t want to push people into what feels like a choice but really isn’t one. I hope we can live long enough to have a good life and then embark on that debate. Right now, it’s time has not yet come.”

Dr. Lynn called instead for efforts to include space on electronic health records where patients’ advance directives can be listed and other ways to encourage discussion and understanding of what a patient’s end-of-life decisions are.

Baby Boomers have consistently been one of the most productive and vocal generations in our nation’s history and are well-positioned to “apply common sense, intellect and good will to solve the problems caused by ‘the silver tsunami’.” Ms. Clift echoed the panel members’ call to develop a community response to caring for older Americans, develop an effective and affordable health care system, and encourage caregivers to share their insights to foster meaningful change.

For more information:

An archived recording of the roundtable is available online at: http://www.altarum.org/roundtablejune5

An archived version of an earlier recording of the inaugural Altarum roundtable featuring several of these panelists and others discussing similar issues, is available on YouTube at http://www.youtube.com/watch?v=wMDO1RE1vbY&feature=youtu.be