One of the things I write about in The Chronic Illness Journey is how families have changed. It used to be that when a family member got old and frail, needed care was provided by families.  Indeed, prior to the 1960’s, when Medicare/Medicaid came online, you might say that families were the main form of insurance most people had.   While private health insurance was expanding during the 1950’s, by the late 1950’s only 25% of Americans over 65 had insurance.

Prior to widespread availability of birth control, large families were common.  My paternal great grandparents had 7 children!  They were needed around the farm, but it was more than that.  It was a common expectation that at least some of the offspring, especially the girls, would live nearby and provide support for their elderly parents, when it became necessary.

Obviously, much has changed since the 1960’s in terms of healthcare and insurance – some for the better and some for the worse.  Underappreciated has been the changing roles and expectations of family members in terms of support for ailing elders.

Two big things stand out – 1) fewer elders have family members living nearby and 2) more families have dual incomes.  In the 1950’s about 65% of families had a working husband and a ‘non-working’ wife.  Today about 60% of married couples are dually employed.  The reasons for these changes are obvious – greater social mobility, changing gender roles, especially for women, and economic necessity requiring a dual income.

The changing role of women, now more likely to live at some distance and more likely to be employed, has had a great impact on elders.  The explosive growth in assisted living and nursing homes reflect this change.  That we now have more old people with more chronic conditions also undoubtedly contributed to this expansion.  The first inventory of nursing homes in 1954 estimated approximately 270,000 people lived in 9,000 nursing homes.  In 2025 there are approximately 15,600 nursing homes with 1.7 million licensed beds.

It almost goes without saying that despite more assisted living facilities and nursing homes being available, there is a massive unmet need for caregivers.  The problem is not just a lack of warm bodies to do the work; we haven’t figured out how to pay for the care that is needed.  Medicare does not pay for long-term care. Medicaid, as described in more detail in The Chronic Illness Journey, requires people to be functionally impoverished.  Even if a person has Medicaid, the per-diem rate for nursing home care does not adequately cover costs.  Something has to give.

Barring some radical, positive change in how we pay for care of the elderly, which looks most unlikely in the near future, things look to get worse before they get better.    There is no federal white knight riding to rescue us. It will be up to us to protect those we love.  And that may require a re-thinking of what family means.

It may be that some adult children see far enough ahead that they decide to live near elderly parents in order to help.  They may build accessory dwelling units (ADUs) for parents to live with them (assuming they have the necessary funds).  They may even adjust expectations regarding dual incomes to accommodate future caregiving obligations.  Still, I am doubtful that many will do this or that it will be enough.  Such adjustments may be possible for those who are well-off, but impossible for many others.

Another, more radical possibility is rethinking the very notion of family.  Groups of people might consider banding together as mutual aid societies – with formalized expectations and responsibilities for other members – something like the “communes” of the 1960’s come to mind, without the hippy trappings.  I imagine any such arrangements would be driven less by cultural or political sentiment than economic necessity and survival.

Hillary Clinton famously wrote that “It takes a village.”   The saying has almost become trite.  But she’s got a point.  If there is one thing I would think Americans of all political stripes would agree on is that the current system of healthcare in general and how we care for elders in particular isn’t working.   I don’t claim to have the answers, but solutions will require a clear-eyed acknowledgement of the challenges we face and a willingness to experiment with new ways of doing things.

The Chronic Illness Journey – the back story

Retiring a few years ago, I have had time to reflect on my career and the state of healthcare.  I am proud of what has been accomplished in the establishment of palliative care (technically Hospice and Palliative Medicine) as a formal medical subspecialty.  However, much work remains to be done.

In retirement I am more distant from the day-to-day business of medicine, which allows me a new perspective.  Much of what I see in the healthcare system isn’t pretty.  It occurred to me that it might be helpful to share what I have learned both in my career and my personal life with the lay public in hopes that they might better navigate the system.

At one level The Chronic Illness Journey flips what I wrote about in Palliative Care Perspectives on its head.  Palliative Care Perspectives was primarily for clinicians, especially physicians in training. To my surprise, some regular folk told me that they found it useful.  In contrast, The Chronic Illness Journey is primarily for a lay audience.  However, some professionals may also learn something of interest, as it goes beyond traditional clinical areas.

I have always been fascinated by how people ‘handle’ chronic illness.  Some manage things with grace. Some learn from the experience, becoming better people. Others struggle. Too many, I’m afraid, seem to crash into chronic illness, like hitting a brick wall.  Two things seem to improve the odds that people will successfully meet the challenges of illness – 1) they have done the personal ‘work’ ahead of time that allows them to adapt to whatever is thrown at them and 2) they start building a plan.

There isn’t much I can do to help people with their personal work, other than encourage folks to start on the work well before they become chronically ill, if possible. However, perhaps I could help people better strategize for whatever lies ahead.

As I describe in the Introduction of the book, I have cared for many people, primarily elders, suffering from a plethora of chronic disorders.  They and their families were desperate for help.  Still, it puzzled me how rarely they asked ‘big picture’ questions about their conditions.  Much like clinicians, it seemed, they tended to get bogged down in the all the details – whatever the next test or treatment might be.  Very rarely did they ask something like, “You’ve seen stuff like this before. Any advice, Doc, on how to manage my dementia [or cancer, or whatever]?”  To some degree, all were working on plans and making any necessary adjustments in their lives, I’m sure, although these were largely left unspoken.

In our modern culture we have institutionalized all sorts of planning – for education and employment, financial planning, and even for our deaths -estate, funeral planning, and the like.  (I find it mildly disturbing yet also amusing that I seem to be getting more ads in the mail for cremation services for my “pre-needs.”)  And yet we have few traditions for planning for chronic illness in old age.  Chronic illness in old age is so ubiquitous and the consequences for NOT planning so dire, that it seems ridiculous that this is so.

As I also state in the Introduction, it’s not that I have the answers for how to ‘do’ chronic illness.  But I hope to provide a few suggestions for folks to help them in their planning and adaptation to whatever fate throws their way.

While I am proud of what has been accomplished in the palliative care ‘moment,’ I do have a gentle criticism.  The practice of palliative care in healthcare systems is often too narrowly defined – consultation teams, and the occasional clinic or dedicated ward.  Pioneers in palliative care, both in the older hospice moment and the early days of palliative care in the United States envisioned more substantive change.   There was a recognition that our healthcare system, wonderful as it is in some ways, is fundamentally flawed.  With its emphasis on high-tech cures and its neglect of many human aspects of illness, it is out of balance.  Too often the system that is supposed to ‘save’ people ends up impoverishing them instead.  One of the most shocking stats I cite in the book is the estimate that roughly 40% of Americans are impoverished by chronic illness.   That’s beyond sad.

And so, in this book I cast a wider net than in my prior work.  I discuss chronic illness (with a focus on the elderly) as a total experience.  Chronic illness is not just whatever disease(s) besets the individual, but a social phenomenon, affecting the ‘patient’ and all those connected to him or her.

Chronic illness ‘happens’ in discrete venues – the home, the hospital and clinic, and special places, like nursing homes.  Each of these venues has its own culture and related rituals, which are foreign to initiates, like patients and families.  I try to provide a bit of insight into these cultures.  Care in these venues takes funding. Money (or the lack of it), especially in our byzantine American healthcare system, is also regrettably part of the ‘experience’ of chronic illness. Thus, I try to shed some light on the convoluted funding sources and insurance networks that must be navigated.

As a social phenomenon, chronic illness is experienced in terms of interactions among individuals – between patients and clinicians, but also involving significant others, especially family members.  Interactions involving chronic illness are often difficult and can be very stressful. I offer some suggestions for more effective communication.

Of course, illness does not exist separate from disease.  So, I try to provide some basic background on common diseases of the elderly.  In doing so, I encourage readers to become familiar both with the underlying physiologies of common diseases and the special language clinicians use to discuss them.  Doing so should help both with planning and communicating with clinicians (and insurance companies).

Throughout the book I invoke a metaphor of a journey to discuss chronic illness.  It’s not that this is a journey anyone would personally choose to take, but having little choice in the matter, how best to proceed?  Embarking on a journey involves planning and adjustments along the way, as events unfold.  Each journey, like each individual is unique; nobody could possibly address all the issues that might arise.  Still, I hoped I could encourage readers to investigate particulars of relevance to them by suggesting avenues they might explore.

All journeys eventually come to an end.  I conclude the book with a discussion of palliative care, hospice care, and the end-of-life.  Not all chronic illnesses directly result in people dying.  However, it is certainly true that all our life journeys will end one day.  Having some foreknowledge of what lies ahead will hopefully be of some help to people regardless of where they are on their particular path.  There is still far too much ignorance about the final stage of life. While contemplating the end-of-life may be scary for many, there is far more ‘good news’ than most people think.

I tried to be clear-eyed in the writing of this book – at times to the point of being blunt.  Chronic illness is immensely difficult for all affected.  It isn’t going away anytime soon.  However, I am also hopeful.  I encourage readers to be hopeful.  With effective planning (and a little help from friends and family), chronic illness doesn’t need to be terrible.  Indeed, it can be an opportunity for growth and connection, an opportunity for us to experience the best aspects of our collective humanity.  There is solace in that.

I am a retired physician living in the San Francisco bay area. I received my M.D. from Emory University, did a residency in Internal Medicine at the University of California, San Francisco, and a chief residency at Stanford Hospital. I spent my career at the VA Healthcare System in Palo Alto, CA near Stanford and was on the faculty at Stanford, retiring as an Associate Professor, Emeritus. I was fortunate to have found my way to the emerging field of palliative care in the early nineties. VA Palo Alto has one of the oldest hospice programs in the country. I served as its medical director for many years. I also was an administrator for VA Palo Alto’s extended care program, providing oversight of its nursing home and home care programs.

Throughout my career I enjoyed writing. I wrote for medical journals and wrote two editions of Palliative Care Perspectives (PCP), Oxford University Press. PCP grew out of a course on end-of-life care we developed at Stanford. While the overt focus was on medical trainees, PCP also found an audience with the lay public interested in palliative care. After retirement, I found that I wanted to keep on writing, free from the constraints of formal medical journals. Three things have been central to my writing efforts. First, I loved to explain complexities in ways that are easy to understand, creating stories, often based on evolutionary concepts. For example, I have outlined the pathophysiology of nausea, disgusting as this symptom is, based on its survival value protecting us against accidental poisoning. I have also been drawn to ‘interesting questions’ – queries that strike me as being of some importance, but which have mysteriously been neglected. For example, my article, Pathophysiologies of dyspnea explained, explores why opioids, like morphine, may help with shortness of breath without impacting one’s ability to breathe or one’s survival. Finally, I love history. I have written about the history of palliative and how our views on death and dying in western culture have changed over time.

I am now taking these passions in new, overtly disparate directions. My debut novel, Operation Reboot, examines the big question, why is it that mankind seems hellbent on self-destruction? Is it simply our nature to grow and expand until Mother Nature puts a stop to our recklessness or were there correctable ‘flaws’ in our history, in how we evolved as a species? I do this in a time-travel piece in which people from the future travel back to pre-colonial North America in the early 1600s, prior to the arrival of the Mayflower. They hope to aid the indigenous Mohawk resist European aggression, thought to be a key factor in the fall of civilization. They want to start something new, to ‘reboot.’ What exactly that new civilization might look like, they aren’t quite sure. The Mohawk were chosen because they had strong egalitarian and democratic tendencies. The novel also allows me to explore the fascinating history of that important age.

I’m on more familiar turf in the other book I’m working on. It explores chronic illness and aging with a lay target audience. I’ve been fascinated, not in a good way, by the fact that despite spending more on healthcare than any nation on earth, our system of healthcare seems broken. In reflecting on my career, it occurred to me that I was rarely asked by my patients or their families how to ‘do’ whatever affliction was besetting them. How does one ‘do’ heart failure or dementia, for that matter? While there is no shortage of information online about common chronic illnesses, still developing a strategy for surviving the gauntlet that is modern medicine in America is hard. In the book I try to guide readers through common barriers they may encounter – knowledge deficits about the basic physiology of common chronic conditions, communication challenges with professionals and family members, and nitty-gritty aspects of medical care – the finances of healthcare and the peculiarities of venues of care (acute care, outpatient care, home care, and nursing home care).

In follow-up posts I hope to expand on the topics above and provide references for those who wish to explore them further, whether they relate to topics like the history of indigenous people or some aspect of medicine. Please feel free to follow what strikes your fancy and ignore the rest.