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.