Together We’re Transforming End of Life Care


A monumental transformation is occurring. In this country and across the globe, people increasingly have an alternative to withering in old age homes and dying in hospitals — and millions of them are seizing the opportunity. But this is an unsettled time. We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase… We are going through a societal learning curve, one person at a time.

                    – Dr. Atul Gawande, Being Mortal

Dying In America

In 2014, The Institute of Medicine (IOM) published its landmark report, “Dying in America.” It noted that in the United States, though the cost of end-of-life care is the highest in the world, the outcomes of care are no better, and at times even inferior to those in other industrialized nations.

The researchers concluded that patients and families face numerous difficulties navigating our siloed and highly fragmented health care system, particularly when coping with advanced illness and end-of-life1

The Healthcare Industry

The cost of healthcare in the United States is astronomical. This immense industry, which spent 3.8 trillion dollars in 2019, accounts for nearly twenty percent of our country’s gross domestic product. Our federal government’s Medicare system, when considered as a separate entity, would be the fifth largest economy in the world.

It’s generally agreed that healthcare is not designed to help us die well. The alleged culprit: perverse incentives and disincentives built into the system’s fee-for-service structure. The current model encourages neither coordinated nor efficient care. Even with Medicare’s lavish spending, over a half million American families each year file bankruptcy due to medical costs.

Driving the aggressive recommendation and use of treatments and services until death, Medicare’s financial incentives are unknown to most patients and a veiled mystery even to many providers. The BIG winners are the pharmaceutical industry, the medical insurance industry, the medical equipment industry, and top tier providers, i.e., surgeons and specialists.

Navigating Healthcare’s Maze

Patients and their family members are often at a loss, particularly the elderly and infirm, as they struggle to navigate healthcare’s maze. Given our fragmented, profit-driven system, comfort and refuge are almost impossible to come by when they’re most needed.

According to the Institute of Medicine, generous fee-for-service payments give physicians the incentive to provide intense, numerous, high-cost services, consult multiple subspecialties, and hospitalize patients, even in the final weeks of life. Fifty percent of all Medicare spending is on patients in the final six months of life.

Since referring patients to hospice reduces the income of other providers, the fee-for-service system discourages timely education and less aggressive care. More than forty percent of late enrollments in hospice were preceded by an intensive care unit stay.

Our Current System Fails to Prepare Us for the Most Important Event

In keeping with the Institute of Medicine’s findings, Dr. Atul Gawande’s 2014 bestseller, Being Mortal, challenges the reader and the medical profession to rethink how we care for our most frail and ailing patients. Particularly relevant is Dr. Gawande’s noting the relationship between an evolving healthcare system and the places where people die.

Prior to World War II, most Americans lacked access to hospital care and professional diagnosis, which led to most deaths occurring at home. As hospital care and life-saving technology advanced through the twentieth century, more people chose to die in the hospital than at home. This is still the case. Yet today, as frail elders and their loved ones weigh the benefits and burdens of dying in the hospital, a sea change is again taking place. The result: hospice and homecare are now involved in over half of all deaths in our country.

A Conflict of Interest

I firmly believe that all clinicians are drawn to be of service to their patients, yet our altruistic motivations are too often in conflict with the healthcare system’s current financial structure. We are each beholden to rules that govern our workplace. Change is due and is in the works. Whether the restructuring comes from the top down, via legislative changes to Medicare, or from the grassroots level, or both, is ours to determine.

A Generation Comes of Age

The post-World War II baby boom created a generation of seventy-five million Americans. We’re a feisty lot. The “boomers” have grown up with and authored profound innovation across the spectrum of human endeavor.

Along with these advances has come the impulse to question authority, feelings of entitlement and a prevailing desire for self-determination.

In short, we’re inclined to have our say and to leave our mark. Upon this landscape, boomers have begun to confront and reshape the final frontier—the end of life.

The desire to live longer and better is a defining characteristic of our times. The “first born” of the boomers turned seventy-five in 2021. Unfortunately, living longer does not always equate to living better.

A Monumental Cultural Change is Underway

There’s a compelling need to transform how we think about and support each other at the end of life. A monumental cultural change is underway, powered by an individual and societal willingness to examine and discuss how we die.

The baby boomers— even the most conservative among them—are uniquely suited to pick up this banner of cultural change. Given this generation’s track record of social activism, they can be counted on to question the system and to risk reinventing it. Why would this well-established dynamic be any different at the end of life?

The boomers’ predisposition toward self-determination can be transformative both personally and across the healthcare system. Each patient is simultaneously a point of leverage in their own family and within the system. On an individual basis, the gradual transition from I’m not giving up to Please help me get ready to go reflects wisdom and a healthy autonomy.

As millions arrive at this crossroad each year, the cumulative impact will force our healthcare system to evolve, to accommodate, and ideally, to become more patient-led through the process.

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.

Acute Care and Life Sustaining Treatment

The catalyst needed for this transformation is already in place. Sadly, it is the prolonged anguish of friends and loved ones at the end of life, too often on a ventilator in the ICU, which number over 100,000 beds across our country.

The voice of change lives in the seventy percent of us who say we want to decline late interventions that cause undue suffering. Even so, our healthcare industry continues to push for and profit from life-sustaining treatment, until a patient or their spokesperson actively and persistently chooses against it.

Bringing Palliative Care into the Mainstream

ALL patients with chronic and advanced illness could benefit from a palliative care consult, and its holistic support.

The growing demand for palliative care already exceeds the current supply of specialty-trained doctors, nurses, and social workers. The aim is to recruit and train more palliative specialists while advocating for palliative care’s core principles to be embraced by other disciplines.

While medical schools ramp up to meet the growing need, all clinicians are encouraged to learn and embody the heart of palliative care.

In addition, as mentioned in last week’s Post, our nation’s 53 million caregivers are ideally positioned to learn, and to embrace basic Palliative Care principles:

  • Being present, and offering one’s full, undivided attention
  • Being generous with one’s time
  • Listening more than talking, with empathy and compassion
  • Learning about the person and what matters to them
  • How does your loved one define “quality of life?”
  • Helping the person document their healthcare wishes, if they so choose, through an advance directive
  • Asking if they’d like to talk with a palliative care specialist
To Change the Cultural Narrative – We Need to Talk

The ‘societal learning curve’ that Dr. Gawande invokes is as simple and as complicated as being willing to talk routinely about the care we’d each prefer at the end of life. It begins with a willingness to talk with our family members and our doctors.

It leads to bringing The Conversation into our churches, restaurants, hair salons, and work places. We’ll pick up right there next time.

Next Week’s Post: Initiating The Conversation in Your Community


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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Until next week, ‘Safe Journeys,