By Janice Lynch Schuster. Public health officials are sounding the alarm over the looming catastrophe of an aging America, a time in which 78 million Boomers will arrive at old age, only to find a health care system that can’t meet their needs or sustain their lives. Social and financial costs will be devastating: Boomers will live longer and with more chronic conditions than any other generation; they will need more years of care than any of our current systems can provide. Half of those who live to the age of 65 will require nursing home care at some point in their lives; half of those who make it to 85 will experience dementia.

A health care system predicated on acute illness and injury is not equipped to meet the long-term, ongoing needs of people who have multiple chronic conditions—a situation Boomers will face. In short, it’s a disaster we know will happen, but whose impact we might, with planning, lessen.

So how could we prepare? We might take a page from the Federal Emergency Management Administration (FEMA), which, in the aftermath of Katrina, stepped up preparedness planning. Indeed, it  has outlined eight principles of disaster management. These principles will sound familiar to anyone interested in creating a better health care system. According to the disaster planning experts, good plans are comprehensive, progressive, risk-driven, integrated, collaborative, coordinated, flexible, and professional.

These principles will sound remarkably familiar to anyone enaged in public health and health care. Where today America has fragmented, uncoordinated systems of care, we need a future in which coordinated, comprehensive care is the norm. Where today there are unconnected silos of activity, we need to foster improvements that lead to collaborative systems, ones in which each participant knows and understands how, when, and why to interact with other elements of the system.

America needs a progressive system, in which, in the words of FEMA, “managers anticipate future disasters and take preventive and preparatory measures to build disaster-resistant and disaster-resilient communities.” Mapped to the health care system, a progressive system would mitigate the ways in which things go wrong in our current system, fix those errors, and learn from them to prevent their recurrence. (more…)

By Janice Lynch Schuster. Seventeen years ago this month, my grandmother was dying of kidney cancer; given 2 days to 8 weeks to live, she made it 8 weeks to the day. During those weeks, even as she suffered the pain and indignity of her illness, she was very much among the living. She played with my children, did crossword puzzles, went through old papers, sorted out her knickknacks, admired the changing colors of the trees. Even as she was saying goodbye to us, she was living her life as best she could.

A decade ago, a dear friend died of pancreatic cancer. During the few months remaining to her, she and I got together for lunch as we always did; she worked on writing assignments for the newsletter I published, held a Christmas gathering, and finished her master’s degree.

And just last year, a few days before her death, the mother of a dear friend was swimming laps in her community pool. In what proved to be the last months of his life, Steve Jobs got up, put on his black turtleneck and jeans, and journeyed to work, where, apparently, he tried to find ways to reinvent television. In the end, they say, he was troubled by the poor design of his oxygen mask, and kept insisting on trying others. People remain themselves until the very end.

The point of remembering these sadnesses is to note what they all have in common: People who are dying have much living to do, whether it is measured out in days or weeks or months, each person wants to be counted among the living until the very last moment. It is no surprise-we all share passions, interests, loves, and a basic human desire to survive. 

And the demarcation lines between the living and the dying might as well be drawn in pencil, so our doctors can erase and redraw them because their efforts at prognostication often miss the mark. My friend, geriatrician and hospice physician Joanne Lynn, refers to all of us as the “temporarily immortal”, and notes that the distinction between the living and the dying is as arbitrary and subjective as the one we make between people who are tall or short: Some quite clearly are on the edges of height, but most of us are somewhere in the middle.  (more…)

By Janice Lynch Schuster. Face to face with his own mortality, Steve Jobs did what millions of sick people do every day: He went to work. He spent time with his family. He daydreamed. He told his story. On last night’s 60 Minutes, Walter Isaacson talked about what he described as Jobs’ denial that he was sick and dying, and his magical thinking that with a good diet and better thoughts, he might heal. But I’m inclined to think it had less to do with magical thinking and more to do with human thinking: None of us wants to be labeled as dying—and why should we? In the context of how Americans think about death—and how they act in the face of it—Jobs’ response is all-too-human.

For many years now, I’ve written on this subject with Dr. Joanne Lynn, a geriatrician and hospice physician. In our book, Handbook for Mortals: Guidance for People Facing Serious Illness, we talk about the living with/dying of conundrum. Americans like to talk about “the dying” as if they were a different sort of person, in contrast to the rest of us, whom Joanne characterizes as the “temporarily immortal.” Once someone has been labeled as dying, we expect him or her to go about the business of doing just that: taking to bed, saying farewells, making peace with God, signing up for hospice, giving up daily routines and purpose. We think of the dying as a distinct group, with different interests, and an entirely different role to play in this life.

The fact is, for Boomers like Jobs, we will spend many years dying of something. Nearly 80 million of us are aging together, and along the way, we will accumulate illnesses of old age: heart disease, cancer, and Alzheimer’s. Thanks to modern medicine and public health, we will live for a long time with what have become chronic conditions. Where these diseases once killed swiftly and uniformly, they are now chronic conditions with which we live—and from which we die. (more…)