Sep 282015

By Joanne Lynn, MD

If you are hoping for a good night’s sleep, don’t read the stories told by Marcy Cottrell Houle of her parents’ last years of life just before you go to bed. But do read The Gift of Caring: Saving Our Parents from the Perils of Modern Healthcare [], which Houle wrote with geriatrician Elizabeth Eckstrom over a cup of coffee. That will get you fired up. The litany of catastrophes that occur in our poorly organized medical care system—preventable, avoidable suffering—is overwhelming. So far, though, no one is listening. No one is reacting in horror, and no one is changing the system to stop these errors. We need to turn up the volume of our protests!

Marcy’s father was once abruptly discharged from the hospital to a nursing home that lost him! The nursing home put him in a room at the end of a hall and simply forgot he was there! No hygiene, no food—nothing was provided for him. In fact, the staff forgot to give him water for so long that he developed renal failure. He was later drugged to manage his behavior, which was eventually traced to pain, readily treated with acetaminophen. His case spiraled on and on.

Marcy’s mother had all the geriatric complications: delirium, falls, anti-coagulation, terrible aides. Worse still were her run-ins with physicians who wouldn’t pause to make sense of sudden changes in mental status, because they just assigned every dysfunction to “old age” and “dementia,” even when her mother had been functioning quite well just a day before.

Yes, it’s all there, terrible and terrifying. Dr. Eckstrom writes a chapter after every calamity about how patients and families might prevent or cope better. The book is a rare gem to help people who must navigate our “care system” for frail older people.

But it is maddening.

If you bought a toy that fell apart in a dangerous way, you could report it to the U.S. Consumer Product Safety Commission, and they’d investigate. If a person has a near miss from a safety defect in a car, the National Highway Traffic Safety Administration wants to hear about it immediately. If a medication causes a serious side effect, the Food and Drug Administration has a consumer online reporting form. Indeed, any of these and more pop up when I search online. But just try reporting that your dad was lost in a nursing home. You have to be knowledgeable enough to find the ombudsman program or the Quality Improvement Network or know a lawyer willing to threaten to sue in order to call attention to a grave mistake.

The problems in care of the elderly are not just “errors” in the usual sense of unusual mistakes. In fact, they are baked right into our current delivery system. The errors are not just a nurse or aide slipping up on some critical step. Instead, all the nurses and aides and everyone else are working in a system that is so dysfunctional that actions that cause pain or neglect are not even called out as errors. Consider that I can go up to an ATM in the remote wilderness somewhere in the world, and the banking system will know whether I have money in my account; but if I am discharged from the hospital, my community physician won’t know anything about what happened to me in the hospital, often even if she’s been my physician for years and I told the hospital folks this.

Think about the profound errors that are made when medical professionals simply have no idea what matters to patients and their loved ones. They never ask! For example, consider two men living with the same advanced degree of disability from Parkinson’s disease. One might want to spend anything and do whatever is necessary in order to survive long enough to finish a personal project, while the other might really want not to leave his spouse impoverished. The second man might feel at peace with the fact that life is coming to its end and even to feel OK with letting it end a bit early in order to have things fall into place for those he loves.

Today, emergency room staff do not know any of this because of the way in which we have put this system together. Both these men experiencing a sudden deterioration, however, would have to use the emergency room, because we don’t have 24/7 on-call physicians organized to come to their homes. We don’t even have home-delivered meals for many elderly persons in need in most of the country; the waiting lists are routinely more than 6 months long, because we have not chosen to fund the Older Americans Act adequately.

What are we doing? And how can we complain effectively? Each family somehow believes that its situation is bad luck or “how things are.” There is no benchmark by which to set expectations, so the families accept the errors, dysfunctions, suffering, and impoverishment that so often come with disabilities in old age. Why are the errors of our system not being debated or even mentioned in political campaigns? How can we change this?

We can start by changing our abysmal expectations of the services that we get. Let’s question why the care system is so deaf to the priorities of our loved ones everywhere we can—in the newspapers, in the candidate debates, through social media. Let’s reengineer current services, build highly reliable care systems in our communities, and see what it really costs. Projections for the costs of a community-anchored care system that is person centered and flexible enough to bring most services into the home are not much different from current care arrangements. Let’s record stories, good and bad. Let’s figure out how family caregivers can become politically powerful. Why is it, for example, that Medicare has no standing advisory committee speaking for the interests of its millions of beneficiaries? If we are lucky, we will grow old. So it’s our future, too, not just our parents’!

We’ve started an initiative to get family caregiver issues on the party platforms in all states that generate party platforms. You can join the Family Caregiver Platform Project initiative. It takes very little time and gets leaders talking. Go to to sign up now.

There are some bright spots on which we can build: The Centers for Medicare & Medicaid Services has introduced payment for advanced care planning discussions between Medicare beneficiaries and their physicians. We agree that this is a good idea and strongly support it. But care planning is not just an end-of-life matter; it needs to be comprehensive and a standard practice. All health care providers and social services agencies should pursue the goals that the elder and family actually most want.

What else can you think of? We need other leverage points that would focus the pent-up frustration of millions of family members who have already witnessed the misery of ordinary elder care. What should have been available to Marcy as she helped her parents live their last years? Hers is a story that we can all absorb and tell others; then we can go out and insist that our care system change. Eventually, Marcy and her family found some exceptional paid caregivers, and together they achieved some good experiences, even triumphs. But this came after needless suffering. She would say that she’s lucky, and others would say that she’s especially skilled and capable. Most of us need a care system that does not require exceptionally skilled and capable family members or good luck. Read her book, and help us push for a care system that works reliably for our old age!

Jun 302014

Closing the Care Gap for Families in the 21st Century

In early July, Sen. Bob Casey (D-PA) will introduce a novel policy proposal that could be life changing for the millions of Americans who quietly worry and wonder who they can call on for help and steady companionship when a loved one becomes ill, disabled, or very old.

The Caregiver Corps Act of 2014 is designed to train and organize volunteers of all ages in communities across the country. It would charter local Caregiver Corps to harness the power and passion of volunteers who want to make a difference in the lives of their neighbors and community members. Corps members would provide companionship, as well as nonmedical assistance, such as delivering food or making a minor repair. They can also offer homebound people a way to connect with the larger world.

To ensure consistency and to provide guidance and support for local programs, the bill establishes a national Caregiver Corps program to support local initiatives. It will develop a core training and operational toolkit for communities to use, helping them avoid or solve problems as they launch. Local Corps would then form or existing organizations would qualify and affiliate. Corps could be sponsored by private- or public-sector organizations or perhaps by a community coalition.

Requirements for local Corps would be simple and straightforward. They would

  • Conduct screening and criminal history background checks of volunteers;
  • Provide in-person orientation and core training, along with any supplemental training a community might wish to offer;
  • Administer a system to match volunteers with adults in the community and a system for tracking outcomes of volunteer assistance; and
  • Establish ways to appropriately recognize volunteers, time, and commitment through mechanisms such as time banking, modest stipends, tuition credits, discounts, or debt forgiveness.

The need to create Caregiver Corps programs in communities across the country has never been clearer. The shrinking pool of family caregivers and the economic realities of working families mean that elders will have fewer people on whom to rely. At the same time, the demand for home and community-based services will escalate, but it is not clear that the workforce of personal and home care aides — whose salaries and benefits are low, and whose prospects for advancement are poor — will grow rapidly enough to meet the need for in-home assistance.

Most aged people will, at some point, need the assistance of working-age adults who are willing to help a neighbor to do the small tasks that are essential to living in the community and to alleviate the loneliness of living with disabilities in old age.

Local Caregiver Corps could fill the looming care gap, supplementing the work of family caregivers, and providing the kinds of nonmedical quality-of-life supports that personal and home care aides generally cannot perform. These could range from helping an elder navigate computers and learn other supportive technologies, to accompanying an individual to a cultural outing, to sharing knowledge about topics and activities of mutual interest. They could provide a break for family caregivers or help with mowing the lawn or replacing a light bulb. While volunteers would offer enthusiasm, compassion, and insight, they would also learn essential skills for improving day-to-day life for older adults and their families, both by interacting with these individuals and by supporting programs that serve them.

As we embark on our collective age wave journey, we have no shared cultural experience of living with so many old people all at one time. Transforming personal experience into volunteer experience at the community level in a way that serves a collective good is central to forging a future that we can all live with happily and comfortably. Finding ways to engage and support people of all generations who have the skills, resources, and motivation to help is in everyone’s self-interest. The challenge before us is how we can accomplish this goal, and the Caregiver Corps Act of 2014 is an important part of the answer.

As soon as the bill is introduced or the Senator’s office posts the summary or the bill, we will put a link here. Make a note to check back in a few days! Sen. Casey announced the bill at a Senate Special Committee field hearing in Pittsburgh on June 30, 2014. Titled “Sandwich Generation Squeeze: Confronting the Middle-Class Struggle to Raise Kids, Care for Aging Parents, and Scrape Together Enough for Retirement in Today’s Economy,” the hearing was held from 1 to 3 p.m. in the Allegheny County Courthouse.

Want to learn more?

Sen. Casey press release on the Caregiver Corps concept:

U. S. Senator Robert P. Casey (D-PA):

Keywords: Caregiver Corps, Senator Casey, Caregiver Corps Act of 2014, caregivers, volunteers, family caregiving