Our Greatest Adversary
Why are most of us surprised by advancing illness and our inevitable decline when we have years to prepare? Truth is, most of us are under the illusion that it’s too early, and perhaps too morbid, to talk about our closing chapters. I think what we’re up against – perhaps our greatest adversary, is a stubborn, self-defeating taboo against discussing end-of-life. A prevailing truth: “It will always seem to early until it’s too late.”1
I wish you could accompany me for just a day, and witness the uncertainty and remorse that takes place inside a busy emergency department or ICU. Around most every turn, lies anguish that could have been eased ‘upstream’ by more awareness, conversation, and shared decision-making prior to the crisis at hand. I think you’d get it right away: the value of discussing our healthcare preferences sooner than later.
The most sensible way to understand our healthcare system is to learn the ropes early, and to plan accordingly, as we would for any significant life event. With a clearer view of the landscape, and a grasp of the lingo, we’re better equipped to navigate the inevitable challenges that come our way. This post is intended to help anticipate what we might encounter, and to learn new coping strategies.
Nine out of Ten Adults (88%) are Challenged by Health Literacy
Simply defined, healthcare literacy is learning to obtain, and understand basic health information and the services needed to make appropriate health decisions.2
The National Academy of Medicine reports that 88% of adults have limited health literacy, resulting in poor self-care, and avoidable hospital visits and admissions. That’s most everybody! Additional research links our shallow understanding of personal health and of our health care system, to most every malaise from chronic illness to prescription errors, to increased mortality.
What needs to change? The short answer: while we’re relatively healthy, we’d do well to take more of an interest. When advanced illness arrives, and it will, then better communication between us, our doctors, and our loved ones, can make a BIG difference. The value of choosing and preparing a healthcare agent to be our advocate, is also essential. The good news: clinicians are working hard to get up to speed on “new” patient-led strategies. Even better, there’s a new wave of patients who are poised to change the system from the bottom up.
A Generation Comes of Age
The post-World War II baby boom created a generation of seventy-five million Americans. The boomers are a feisty lot, and we’ve begun to confront, question, and reshape the final frontier – the end of life. A monumental cultural change is underway, powered by an individual and societal willingness to learn about healthcare, and to be more engaged in shaping our final chapters. The goal: to be better informed of our choices, to live longer when possible, and to die in a manner of our choosing, with dignity, less suffering, and more peace of mind.
Our Death-Denying Culture Doesn’t Let Go Easily
Our healthcare industry profits greatly from taking care of our most frail and elderly patients. Fifty percent of ALL Medicare spending is on patients in the final six months of life. In the last month of life, half of all Americans are brought by ambulance to a hospital emergency department (ED). Three out of four patients are then admitted for an extended stay. For some this late-stage model works well. For the majority it is fraught with anguish.
An Underlying Factor: Healthcare’s Shadow Side
In last week’s Post, you learned about healthcare’s highly profitable default setting, an invisible ‘Conveyor Belt’, moving from admission to discharge, to treat at all costs, even when the burdens of aggressive procedures FAR outweigh the benefits. Behind-the scenes decision making is geared not only toward what’s best for the patient, but what’s best for the hospital. When a patient is unable to make decisions, and their family is unsure of what to do, the hospital is likely to recommend more tests, more imaging, and further treatments to prolong life as long as possible. Here’s where the need for clear communication and shared decision making is most pressing.
“You Got My Attention… What’s Next?”
Start wherever you are. Ideally you have plenty of time to proceed in an unhurried way. Talk with your Primary Care (PC) Doctor. If you have underlying conditions that could lead to advanced illness, are you familiar with the normal trajectory of your condition? If not, your PC is a good place to start. Brave the elements and ask good questions. “Doctor, what do you think I need to learn more about?” When dealing with a serious illness, be courageous enough to ask your doctor(s) for the “best case / worst-case” scenario for the year to come… Usually, they’ll be relieved that you asked. Feeling anxious? That’s normal, even for your doctor. If you’re feeling overwhelmed or things are moving too fast, it’s okay to say something like, “Doctor, could you please run that by me again, perhaps in simpler terms?”
The Inherent Conflict
We’re well conditioned to trust our doctors and healthcare system to find a fix, no matter what. When a condition isn’t life threatening, the hospital’s ability to stabilize, to treat, and to cure is unparalleled, welcomed and rightly celebrated. However, when a condition is life threatening or irreversible, the hospital’s acute care, fee-for-service model is reluctant to surrender its grip and slow to offer us less invasive options, such as “comfort measures only.” This can create a real conflict of interest. Remember, it’s still your body, and you’re in charge. The final exam, so to speak, is discerning when to give your consent for further treatment, when to withhold it, and when to say, “enough is enough.”
What Would YOU Prefer?
While eight out of ten people say they’d prefer to die at home surrounded by loved ones, nearly the inverse is true. Currently 70% of us are dying in hospitals and nursing homes under difficult circumstances. By realizing the likelihood that we will NOT die in a place or by way of our choosing, we have a pivotal opportunity to think ahead, to learn more, and to talk about what matters most to us.
Knowledge is Power
Guidance lies in the wisdom attributed to Sir Francis Bacon: “Knowledge is power.” Asking good questions of our doctors and nurses and being better informed can make a world of difference in understanding our options and choosing how best to proceed. The goal: to be clear-eyed, to find our voice, and through shared decision-making, to choose an appropriate level of care. The cumulative outcome: our national healthcare system stands ready to be more patient-led, one person, one patient, one hospital at a time.
Next Week’s Post: “Code Status”
A MEDICAL ADVICE DISCLAIMER
The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.
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‘Safe Journeys, until next week,
DSW
- The Conversation Project, www.theconversationproject.org
- US Dept of Health and Human Services