End of Life Care

If you were from a foreign nation looking at the United States news right now, you would think that this was a nation that had declared war on death. Or perhaps we could state it better as a total denial of death. In California, Jahi McMath, a teenage girl who has been medically and legally dead for nearly a month (death certificate was issued December 12) has been moved to an unnamed facility and given surgical procedures to introduce air, water, and food more easily while her body continues to degrade and decay.

And in Texas, Marlise Munoz, a woman who may be brain dead or may be in a persistent vegetative state (the hospital isn’t saying and the experts are split), is being maintained because of the hospital’s interpretation of a state law, so that she can be used as an incubator to keep her 14-week old fetus growing despite the wishes of her parents and husband that she be disconnected from the ventilator and supportive measures.

In California, a mother is being criticized for exercising her autonomy beyond reason to define death on her own terms. While in Texas a family’s autonomy to make surrogate health care decisions is being denied. Both of these women have become objects and tools of various groups. In California, the girl is an object of unrealistic hope and political factions. In Texas, a woman is being made into an object and tool to gestate a fetus that may never be born and may not be viable after being deprived of oxygen. Not only has the family expressed their wishes but Marlise also had deliberate and specific conversations with her family about not wanting to be maintained by machines. And lest we forget, the human incubator is also being used as a tool of politics, for elected officials trying to further their career and standing with certain political/religious/social factions to further their agendas.

Continue reading “It’s the Ventilator’s Fault”

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I recently attended the flagship Health 2.0 conference for the first time.

To avoid driving in traffic, I commuted via Caltrain, and while commuting, I read Katy Butler’s book “Knocking on Heaven’s Door.”

Brief synopsis: healthy active well-educated older parents, father suddenly suffers serious stroke, goes on to live another six years of progressive decline and dementia, life likely extended by cardiologist putting in pacemaker, spouse and daughter struggle with caregiving and perversities of healthcare system, how can we do better? See original NYT magazine article here.

(Although the book is subtitled “The Path to a Better Way of Death,” it’s definitely not just about dying. It’s about the fuzzy years leading up to dying, which generally don’t feel like a definite end-of-life situation to the families and clinicians involved.)

The contrast between the world in the book — an eloquent description of the health, life, and healthcare struggles that most older adults eventually endure — and the world of Health 2.0′s innovations and solutions was a bit striking.

I found myself walking around the conference, thinking “How would this help a family like the Butlers? How would this help their clinicians better meet their needs?”

The answer, generally, was unclear. At Health 2.0, as at many digital health events, there is a strong bias toward things like wellness, healthy lifestyles, prevention, big data analytics, and making patients the CEOs of their own health.

Oh and, there was also the Nokia XPrize Sensing Challenge, because making biochemical diagnostics cheap, mobile, and available to consumers is not only going to change the world, but according to the XPrize rep I spoke to, it will solve many of the problems I currently have in caring for frail elders and their families.

(In truth it would be nice if I could check certain labs easily during a housecall, and the global health implications are huge. But enabling more biochemical measurements on my aging patients is not super high on my priority list.)

Continue reading “Knocking on Health 2.0′s Door”

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A few weeks ago, a middle-aged man decided to tweet about his mother’s illness from her bedside. The tweets went viral and became the subject of a national conversation. The man, of course, was NPR anchorman Scott Simon, and his reflections about his mother’s illness and ultimate death are poignant, insightful, and well worth your time.

Those same days, and unaware of Simon’s real-time reports, I also found myself caring for my hospitalized mother, and I made the same decision – to tweet from the bedside. (As with Simon’s mom, mine didn’t quite understand what Twitter is, but trusted her son that this was a good thing to do.) Being with my mother during a four-day inpatient stay offered a window into how things actually work at my own hospital, where I’ve practiced for three decades, and into the worlds of hospital care and patient safety, my professional passions. In this blog, I’ll take advantage of the absence of a 140-character limit to explore some of the lessons I learned.

First a little background. My mother is a delightful 77-year-old woman who lives with my 83-year-old father in Boca Raton, Florida. She has been generally healthy through her life. Two years ago, a lung nodule being followed on serial CT scans was diagnosed as cancer, and she underwent a right lower lobectomy, which left her mildly short of breath but with a reasonably good prognosis. In her left lower lung is another small nodule; it too is now is being followed with serial scans. While that remaining nodule may yet prove cancerous, it does not light up on PET scan nor has it grown in a year. So we’re continuing to track it, with crossed fingers.

Unfortunately, after a challenging recovery from her lung surgery, about a year ago Mom developed a small bowel obstruction (SBO). For those of you who aren’t clinical, this is one of life’s most painful events: the bowel, blocked, begins to swell as its contents back up, eventually leading to intractable nausea and vomiting, and excruciating pain. Bowel obstruction is rare in a “virgin” abdomen – the vast majority of cases result from scar tissue (“adhesions”) that formed after prior surgery. In my mother’s case, of course, we worried that the SBO was a result of metastatic lung cancer, but the investigation showed only scar tissue, probably from a hysterectomy done decades earlier.

Continue reading “#MomInHospital”

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My sister and I took our positions in the funeral home’s family room and greeted hundreds of mourners who had come to pay their respects. Everything seemed as it had four months earlier at our mother’s funeral. The ubiquitous tissue boxes. My navy pinstriped suit. The ripped black ribbon, a Jewish tradition, affixed to my lapel.

But this time, we were accepting condolences after the death of our dad, who stood next to us such a short time before.

It’s hard enough to lose one parent. Losing two within months is incomprehensible. When I left my parents’ Michigan apartment last month, I couldn’t believe it would be for the last time. I’ve replayed phone messages so that I could hear their voices again. And each morning, I look at Dad’s watch on my wrist, thinking it should be on his.

Two days before my dad died, I celebrated the first Mother’s Day without my mom. Now, I’m marking the first Father’s Day without my dad.

As I’ve mourned my parents, I’ve been struck by how many stories I’ve heard about husbands and wives dying soon after their spouses. One of my high school teachers lost both parents within a year; so did a journalist friend in Los Angeles. My rabbi told me his parents died only months apart.

My mom buried both of her parents within the same week in April 1979, when I was 5. My zaydee died first, unable to fathom life without his wife, who lay dying in the hospital. My bubbe died during his funeral two days later.

I wondered whether there was more to this than coincidence, and sure enough, there’s a well-documented “widowhood effect.” Those who lose a spouse are about 40 percent more likely to die within six months than those with living spouses. The effect has been found in a host of countries, across a range of ages, in widows and in widowers – though men are more likely to die soon after losing spouses than women are.

S.V. Subramanian, a professor of population health and geography at Harvard University, co-wrote a review published in 2011 that looked at more than a dozen studies on the effect. “We never say that grief is a disease,” he told me. “But what some of this research is showing is that at older ages, grief can make you more vulnerable to mortality.”

Subramanian said his uncle’s parents died within days of one another.

Continue reading “How My Parents’ Death Changed My Thinking About End-Of-Life Care”

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Injury to the brain continues to be a unique thing in medicine. These injuries are scary and unfamiliar to many health care providers. There is a finality to them. Their consequences are hidden a little bit; the asystole is easy to figure in the emergency room but the suppression and brain death isn’t something so easily recognized.

They’re what you might imagine, along with polytrauma, as poster child conditions for tertiarization and transfer to a higher level of care.

In truly catastrophic injury to the brain however, I’m not sure that’s a good thing.

My institution has had a small discussion lately on just what ethics and the law requires of us as a place with full neuro specialty coverage.

I’ll make up an example:

A 61 year old man comes into a small community hospital’s emergency room. He was found down at home by his wife and last seen normal four hours previously. He wouldn’t wake up and he was breathing slowly and shallowly. The ambulance crew intubated him. In the emergency room his pupils are large and don’t react to light and he doesn’t do anything when the doctor hurts him. He’s in a very deep coma. If the physician working the emergency room felt comfortable doing a brain death exam, which he doesn’t, the patient might have some very primitive reflexes left but his condition is very serious.

Continue reading “Does It Matter Where You Die?”

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Critically ill Medicare patients, who are battling for stable health at the end of life, are victims of repeated hospitalizations, especially after being discharged to a skilled nursing facility (SNF).  The cycle of hospitalizations is an indicator of poor care coordination and discharge planning – causing the patient to get sicker after every “bounce back” to the hospital.  Total spending for SNF care was approximately $31 billion in 2011; with an estimated one in four patients being re-hospitalized within thirty days of discharge to a SNF.[1]

Each readmission leads to further test and treatments, higher health care costs, and most importantly, patient suffering.  It is hard to imagine that patients would prefer to spend their last few months of life shuttling from one healthcare setting to another and receiving aggressive interventions that have little benefit to their quality and longevity of life.  The heroic potential of medical care should not compromise the patient’s opportunity to die with dignity.   A hospital is not a place to die.

Medicare beneficiaries are eligible to receive post-acute care at SNFs, after a three day hospital admission stay.  SNFs provide skilled services such as post-medical or post-surgical rehabilitation, wound care, intravenous medication and necessities that support basic activities of daily living.  Medicare Part A covers the cost of SNF services for a maximum of 100 days, with a co-payment of $148/day assessed to the patient after the 20th day.  If a patient stops receiving skilled care for more than 30 days, then a new three day hospital stay is required to qualify for the allotted SNF care days that remain on the original 100 day benefit.  However, if the patient stops receiving care for at least 60 days in a row, then the patient is eligible for a new 100 day benefit period after the required three day hospital admission.[1]  It is evident that the eligibility for the Medicare SNF benefit is dependent on hospitalizations – many of which may be a formality and a source of unnecessary costs.

Continue reading “The Bounce Back Effect”

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True to his proudly claimed Chicago newspaperman roots, famed movie critic Roger Ebert remained a writer literally up until the moment he died.

“A lot of people have asked me how could Roger have [posted] that column one day and then die the next? Well, he didn’t know he was going to die the next day, and we didn’t expect him to. We expected him to have more time. We were going to go to home hospice. We thought we would take him home, let him enjoy that time, and let him get stabilized. I’ve got to tell you: I really thought he was just tired and that he was going to get better.”

“I want people to know that Roger was still vibrant right up to the end,” his wife, Chaz, told Ebert’s friend, TimeOut Chicago columnist Robert Feder, before an April 7 memorial service. “He was lucid – completely lucid – writing notes right up to before the moment of death,” she said. Only later did it occur to Chaz that Roger had begun signing his initials and dating many of the notes he wrote at the end. “Now I wish I had saved them all,” she said.

It was as if a man who had refused for years to be defined by illness refused to be defined even by death. Ebert spoke openly of being a recovering alcoholic (he stopped drinking in 1979), and when cancer cost him part of his lower jaw in 2006, cruelly taking away his ability to either talk or eat, he did not hide, wrote colleague Neil Steinberg in the Sun-Times, Ebert’s home newspaper. Instead, he forged “what became a new chapter in his career, an extraordinary chronicle of his devastating illness” written “with characteristic courage, candor and wit, a view that was never tinged with bitterness or self-pity.”

Ebert, wrote Roger Simon in tribute, was “a newspaperman’s newspaperman.” As a former Chicago newspaperman myself (at that other paper, across the street), I’m sure Roger Ebert continued to write even after his death.

It’s just that he hasn’t found a way, yet, to send out his copy.

As a long-time reporter for the Chicago Tribune, Michael L. Millenson learned the famous fact-checking fanaticism credo of Chicago journalism: “If your mother says she loves you, check it out.” He is currently president of Health Quality Advisors LLC of Highland Park, IL.

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As a proponent of responsible DIY medicine, I love the idea put forth by Alex Beam in a column he wrote exploring the idea of writing your own obituary.

[The cynics chime in: "That's where you'll wind up if you try to "do" medicine yourself."]

Former Surgeon General C. Everett Koop, who died in February, had his obituary in the NY Times initially inked in 1996, more than a decade before he actually died.** Since he was a figure of historic importance, we can’t blame the paper for being well-prepared.

Folks interested in the do-it-yourself approach won’t likely need to go to such lengths to create their own obituaries. Columnist Beam gives a couple of great examples of folks that have made good on such efforts:

Continue reading “How to Write Your Own Obituary”

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Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”

Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.

I have cancer that is incurable, aggressive, and has negligiblesurvival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.

I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.

Continue reading “Truth At the End of Life”

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Not long ago the Atlantic published a provocative article entitled “The Robot Will See You Now.” Using the supercomputer Watson as a starting point, the author explored the mind-bending possibilities of e-care. In this near future, so many aspects of medicine will be captured by automated technology that the magazine asked if “your doctor is becoming obsolete?”

The IT version of health includes continuous medical monitoring (i.e. your watch will check all vital functions), robotic surgery without human supervision, lifelong personal database with genetic code core and intensive preventive care modeled for each person’s need; all supervised by artificial intelligence with access to a complete file of medical research and findings. The e-doctor will never forget, never get tired, never get confused, never take a day off and will give 24/7 medical care at any location, anywhere in the world, for a fraction of the cost. Perfect care, everywhere, at every moment, for a pittance.

While the transformation for doctors seems clear, a shift from being at the core of medicine to being what the article described as “super-quality-control officers,” what intrigues me is not how doctors will change (retire); the real question is how patients will adapt to this new healthcare world? Particularly when experiencing extreme or life threatening illness, will patients accept that family, friends and a pumped up Ipad are enough?

Continue reading “Death By Remote Connection”

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Matthew Holt
Founder & Publisher

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Munia Mitra, MD
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Vikram Khanna
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Joe Flower
Contributing Editor

Michael Millenson
Contributing Editor

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