Joining Matthew Holt (@boltyboy) on #THCBGang for an hour of conversation on the happenings in health care and beyond were writer Kim Bellard (@kimbbellard), delivery & tech expert Vince Kuraitis (@VinceKuraitis); and policy consultant/author Rosemarie Day (@Rosemarie_Day1).

Rosemarie very recently had some personal experiences with end of life care. We talked a lot about hospice and palliative care (and dementia) and, as Rosemarie says, about how little people seem to know about these incredibly important topics.

You can see the video below. If you’d rather listen than watch, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels

My heart aches for you, even more because the same thing happened to me. You will get through it. But you never will get past it.

I was so very sorry to hear about your husband’s death. You must be inundated with condolence letters and here I am, adding one more to the pile.

I write from a position of knowing, which makes me unspeakably sad for you. My own husband, Matthew Lyon, died in 2002, while on a business trip. He died suddenly, on a treadmill in the gym of a Seattle hotel. He was 45. Our daughter was eight.

Nobody plans for this. We would all go insane if we did. Because we live life as if we have time.

Here is what I can tell you: From now until forever — a forever your husband will not get to share with you, which contributes to the pain of this — you will question everything you thought was true about your life. Your trust in everyone’s ability to get from A to B without incident will never be the same. We all know that nothing is certain, but we know it in a vague, theoretical, I’ll-think-hard-about-that-tomorrow way. You now know it as established fact, and this changes the way you see everything.

People will tell you that time will heal. This is true, but only in part. You and I — and the thousands of others who have lost our spouses suddenly — wind up walking through a world washed grey with grief. The fact of his sudden death will nag and tug, and sometimes it will feel stuck in your throat. You might even have trouble swallowing. There’s a medical term for it — globus hystericus, and I had it for weeks after my husband died. I called it my “grief lump.” It will go away.

When you go outside, the world will seem somehow out of joint. How can people still be walking their dogs, standing on street corners laughing with a friend while waiting for the light to change, jogging with their earbuds in, carrying their Starbucks cups? Don’t they know?

There will be self-recriminations. You might think about the last conversation you had with him, and wish you had said something else. You’ll think about the last conversation that your kids had with him. (They will too, over and over.) These are the things over which we have no control.

Yet there are many things over which you do have control. The well-worn advice about waiting a year to make any big changes is the best advice of all.

And here are a few other things. Once you are no longer distracted by the oddly pacifying logistics of death — the funeral, the letters to read and respond to, the countless floral arrangements, and, in your case, the thousands of beautiful memories of your husband shared on Facebook— you will be left to deal with everything that hangs in suspended animation; a modern, intensely personal version of Pompeii. You will have his voice mails on your phone. You will have his computer, containing the poetry of his life. You will have to decide whether to read his personal email (my advice: don’t). You may discover things he never told you. Love him all the more for this.

How the next weeks, months, and years go for you will be colored deeply by the most personal details of your life, your outlook, your resources (wealth, of course, but far more than that — wealth can help with the nuts and bolts but is no help at all for much of this).

Here are some recommendations that, I think, are universally helpful. First, let people take care of you. Have a few people around at all times. Don’t allow yourself to be alone, especially at night.

Everyone will have a lot to say to you. Every once in a while someone will say something strangely insensitive, perhaps even hurtful. Remember that what they are saying is about them, not your husband, and definitely not you. And, for the most part, they are trying to help. Just as you didn’t prepare for this moment, neither did they. Be forgiving.

And everyone will want to help. Let them. Delegate. Allow your friends and family to deal with his death certificate, his frequent flyer account, his cell phone. But don’t delegate your children. Keep them close to you as much as you can. Because in the way children have of squaring themselves with the world, they figure if they could lose him so suddenly, then you too are up for grabs.

In a few weeks after everyone who has flown in from all parts has left, it will get worse. Because you will find yourself sitting with just yourself. You might think you’re fine, that you can go back to work. You are clearly a remarkably self-sufficient person, and your fame has come, partly, from helping women find their inner confidence. But then something will happen — you might receive a bill from the hospital that tried to save him addressed to him — and you will fall to pieces all over again.

When you drop your children off places, as they are getting out of the car they might say to you, “Promise you won’t die.” With this, they’ll mean, “Don’t die today.” And you won’t be able to make that promise. Tell them you will do your very best not to die today, or tomorrow, or any time soon. And hug them close.

Know that a child’s grief is ineffable, complicated, and unpredictable. Adults do predictable things: we cry, we experience an unfillable hole in our hearts yet we are able to articulate that; we feel and express our pain, our anger, our guilt. We feel and carry through on a need to tell people how it happened, and with each re-enactment we are working our way through to the other side. If we are in a fog, we are conscious of our fog. Then we emerge and carry on. We get up in the morning, take a shower, drink coffee, get dressed, put on makeup. Yet we’re bloodied and bandaged inside.

Our children’s insides roil too, but in a way they cannot comprehend or confront. Go, immediately, and find a grief therapist. My daughter’s therapist saved her life. At least that’s what she and I tell ourselves.

Your children will eventually stop remembering their father in the deep way that you do. Their memories will be airbrushed, in both directions — sometimes adding heroic myth, sometimes colored by anger or confusion. And the memories they do have won’t necessarily jibe with what you remember.

And one day, you will wake up and say to yourself, “My kids are okay.”

My daughter is 21, and she is fine. And I am now happily remarried, to a wonderfully compassionate man (who, in fact, suggested I write this letter to you). Yet when I remember that Zoe’s father won’t be here to see her graduate from college in two weeks, I want to kick a wall. And no, he is not here in spirit.

Here’s the oddest thing: I’m thirteen years into this and still my husband’s visage comes to my mind’s eye unbidden. Even in the broken light in which he appears, I can see that he hasn’t changed a bit.

You have helped millions of women with your advice. I hope mine is helpful to you in this terrible moment. Please know that I am thinking of you every day and for many days yet to come.

Love, Katie

Katie Hafner is a journalist ( @NYTimes mostly ), the author of  Mother. Daughter Me and a contributor at Medium, where this post first appeared.

“I learned about a lot of things in medical school, but mortality wasn’t one of them.” So begins Being Mortal, Atul Gawande’s fourth and most ambitious book.

All of Gawande’s prior books – Complications, Better, and The Checklist Manifesto – were beautifully crafted, lyrical, and fascinating, and all were bestsellers that helped cement his reputation as the preeminent physician-writer of our time. Each blended Gawande’s personal experience as a practicing surgeon with his prodigious skills as an author and journalist. They took readers behind the curtain of the hospital and the operating room, revealing much about some very important matters, like medical training, quality improvement, patient safety, and health policy.

But they were only partly revealing of Gawande himself. He told us what we needed to know about his thoughts and biases in order to make his points, but no more. Being Mortal is Gawande’s most personal book, and as such it reaches a level of poignancy that surpasses the others. Mind you, it’s not an easy read, it’s a bit dull in the early going before it hits its stride, and it has an attitude: Gawande’s indictment of modern medicine’s approach to aging and dying is pointed and withering. But, even more than his other books, this one matters deeply.

As you likely know, Being Mortal is a treatise on how American society has medicalized the aging and dying process, mostly to the detriment of older people. Befitting its topic, there are layers of complexity here. For those of us who have been lucky enough to practice in environments in which hospice and palliative care services are readily available, the book is a useful reminder of things we already know, enlivened by Gawande’s masterful storytelling. In this category, I’d place some of the crucial elements of discussing bad news with patients and eliciting their preferences: the importance of listening more than talking; of focusing on patients’ goals and fears rather than on whether they want CPR or other specific interventions; of using certain phrases, such as “I wish I could…” (rather than, “There’s nothing I can do…”) and “I am worried…” (rather than a cold recitation of bad news); of how crucial it is to involve hospice and palliative care specialists at the appropriate times.

Gawande’s discussion of the tensions physicians face when discussing options with patients is particularly thoughtful. He rejects old-style paternalism, of course, but considers the modern approach of simply providing patients with facts and alternatives (“Dr. Informative”) equally egregious. As always, Gawande’s humility regarding his own struggles – humility that is particularly disarming when offered by such an admired figure – helps the reader understand that these are not easy matters, but that it is possible to improve. Ultimately, through a series of wrenching encounters, Gawande comes to learn that the best approach is a middle ground in which the physician solicits patients’ goals and preferences, then suggests courses of action that are in sync. [One story in the book, about a young woman who learned she had metastatic lung cancer while pregnant, was previously published in The New Yorker, and I wrote about it here, in a blog highlighting Gawande’s exceptional writing skills.]

I found two portions of the book to be particularly memorable and eye opening: his dissertation on nursing homes, and his discussion of his father’s terminal illness.

He recounts the evolution of the modern nursing home, dispiriting places in which America warehouses its old and frail. Prizing independence above all else, our society’s view of successful aging is of the fit septuagenarian on the golf course or in the yoga studio. Which is fine until the body begins to fail, at which time the “independent self” movement provides no obvious humane path for one’s final years – years that have been stretched out because of medical progress, as fewer people now drop dead of heart attacks and strokes but instead wither from the ravages of chronic diseases, cancer, and aging itself. “Lacking a coherent view of how people might live successfully all the way to their very end,” Gawande writes, “we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”

A Gawande trademark is the way he focuses on the particular to bring out the general. For example, his section on the aging process is cringe-worthy but immensely effective. “Consider the teeth,” he admonishes, and then he catalogues the havoc that aging plays on our dentition: gums inflamed, blood supply atrophied, saliva petering out, and jaw muscles slackening. Even as our teeth soften, other body parts harden, including the aorta (“When you reach inside an elderly patient during surgery, the aorta… can feel crunchy under your fingers”) and the brain, which both hardens and shrinks, allowing it to rattle around inside the skull. None of this is fun to contemplate (he quotesPhilip Roth: “Old age is not a battle. Old age is a massacre.”), but that is precisely the point: Gawande is asking, even begging, us not to avert our eyes from this reality.

Rather than telling a simplistic but misleading story of how assisted living and other advances have made the aging process blissful, Gawande provides us with the history of the assisted living movement, with real advances accompanied by some daunting setbacks. He profiles several innovators – people who did their best to improve things but whose ideals were partly undermined by inertia, finances, the medicalization of aging, and the relentless focus on safety, a soul-sapping pursuit characterized by rules, restrictions, and infantilization.

One improbable innovator, Keren Wilson, built one of the nation’s first assisted-living facilities, in Oregon. Her goal was to create, for the older person losing independence, something that was more home than institution. Her experiment was a grand success, writes Gawande, until developers began “slapping the name [assisted living] on just about anything.” Another innovator, an iconoclastic physician named Bill Thomas, created a nursing facility that doubled as a menagerie, filled with dogs, cats, and birds. The joy of the residents skyrocketed, and the number of prescriptions for agitation plummeted. Yet another facility was built on the grounds of a K-8 school; the kids and elderly residents benefited in equal measure. All these stories vividly illustrate that elders need and want purpose, and that, even for people at the very end of life, such purpose – particularly the ability to help other living beings – can make a vast difference. “The battle of being mortal is the battle to maintain the integrity of one’s life,” writes Gawande.” We have at last entered an era in which an increasing number of [professionals and institutions] believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.”

I was particularly taken by Gawande’s description of his own father’s illness and ultimate death. His dad was a respected urologist in an Ohio college town. When we physicians experience our own parents’ decline and death, it is often the first time we recognize – in ways that cannot be conveniently compartmentalized by professional distance – the flaws of the system we work in, and how our own behavior may be complicit. Gawande’s critique of a neurosurgeon at his own hospital for failing to elicit his dad’s preferences and for offering some dreadful counsel; his insights into the challenge of balancing the roles of physician, counselor, and child; his description of the terrible time when his father fell and couldn’t get up and his mother slept on the floor beside him – and then couldn’t get up herself; his awful, role-shattering experience of having to catheterize his own father’s bladder – these are heartbreaking moments of blinding clarity. To his great credit, even as Gawande offers profound insights about these matters, he doesn’t shirk from their messiness and complexity.

I saw Gawande recently and congratulated him on the success of the book (it is currently fourth onThe New York Times nonfiction bestseller list), and the courage it took to write it. “I’m hoping this means that our society is finally ready to tackle these issues,” he told me. Maybe, or maybe people just love reading anything Gawande writes. But no matter – whether you come to this book because you are ready to better understand the realities of aging and what our society and the medical profession must do to improve things, or because you are a Gawande fan (I came for both reasons), you will not be disappointed.

Robert Wachter is a professor of Medicine at the University of California San Francisco.

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.

Ethicists, politicians, physicians, attorneys, and many others have taken strong stands and shared their opinions on these cases. There are questions about family decision-making autonomy, surrogate decision-making, the limits of the law, protection of the unborn, respect for personal beliefs, financing the maintenance of the bodies, state interest in unborn life, the poor state of science education in the U.S., the lack of public education on death, and whether this is some odd confluence of events or precedent-setting.

Some writers blame Jahi’s mom for refusing to admit to her daughter’s death. Other thinkers blame a right-leaning state government. Some people blame a hospital that refused to acquiesces to a mourning mother’s wishes. And still others blame a family that will not give a fetus every chance at being born. However, I take a different approach as to who or what is at fault. I blame the ventilator (“vent”).  If ventilators did not exist, then Jahi’s heart would have stopped a month ago and her mother would have been forced to deal with her death. Without a ventilator, there would be no way to use Marlise as an incubator. As technologies are created there is often debate about how we should use it. But history has shown that new technologies are usually adopted and used in ways no one could conceive. I suggest it’s time we rethink the vent.

Ventilation machines existed as far back as the 1800s as negative pressure devices. In 1928, the Drinker respirator was introduced and more refinements came in 1931. These early machines were widely used for polio patients. In 1949, J. H. Emerson designed a vent to be used in anesthesia and in intensive care, predominantly in polio patients and patients undergoing surgery. Then in 1971 a more powerful, smaller, and more effective ventilator was introduced.  This allowed the vent to be used on a wider variety of patients and for a longer period of time.

The ventilator is sometimes a method to keep a body alive to preserve organs for transplant. Since the 1970s it has been used to keep alive those individuals who lack consciousness—individuals in a coma or persistent vegetative state. And in 2014, apparently ventilators are used to keep the dead functioning as incubators or as vessels of misguided hope. Thus from their early use as a tool to keep people with functioning brains alive, the vent is now used to perfuse air into a dead body.

My suggestion is that we limit the use of vents since that seems to be the problem. Vents should only be used for those individuals who can consent to have one used on them. If you have consented to be an organ donor at some time in the future, then you can give advance consent for a vent. If you have a disease that destroys your ability to breath (polio, ALS), you can consent to one. But if you suddenly start bleeding and have a heart attack where your brain is deprived of oxygen for so long that it dies, well you can’t consent for a vent. In every other aspect of medicine, we require consent of the patient or surrogate before even touching the person (with exceptions for emergencies). Why is the reverse the case for the ventilator? Vent now, ask questions later. For example, if a person’s kidneys are failing, we do not wait for him or her to become unconscious and then reflexively put them onto dialysis, requiring consent to remove the treatment or look for documentation that the person wound want this support removed. In most cases, a person (or his/her surrogate) has to consent for dialysis before it is initiated. This is an imperfect comparison because if a patient needs dialysis, waiting ten or 30 minutes to begin treatment would not be fatal in most cases (poisoning would be one exception), whereas waiting that amount of time to ventilate someone who is not breathing would be fatal.

With the status quo, if you do not want a vent, then you need an advance directive, POLST, or DNI form. Even if you have such a form it may be hard to locate and no one may follow it. , Why should we accept that we need to consent to not being treated when in most other areas of medicine the reverse would be true. We need to adopt a notion of presumed refusal when it comes to ventilators. If you want a vent, then you need to provide advance consent that this is what you would have desired.  Rather than being a first reaction, the vent should only be used whenmedically appropriate and requested by a patient (or patient’s legal surrogate or patient’s advance directive).

There is likely to be resistance to such a change as the ventilator is a long accepted part of medicine and has even been popularized in the media: No medical drama would be complete without a ventilated patient. And this idea might not have prevented Jahi’s mother from consenting for her child’s dead body to be kept warm with a vent. But moving in this direction would change our expectations that miracle breathing machines, machines that bring people “back from death,” are not the norm and should therefore should not be expected.

I blame the frequent, automatic use of the ventilator for many of these current issues and unrealistic expectations. If we change the laws, the standard of care, or even how these issues are dealt with on TV and the movies, then maybe the tragedies that these two cases represent can be avoided.

Craig Klugman, PhD is a bioethicist and medical anthropologist who will be professor and chair of the Department of Health Sciences at Depaul University. He is also an author of bioethics.net, where this post originally appeared.

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.)

Don’t get me wrong. There was a lot of cool stuff to see at Health 2.0; a lot of very smart people are creating remarkable technologies and tools related to healthcare. The energy, creativity, and sense of exciting possibility at a gathering like this is truly impressive.

And yet, most of the time I couldn’t shake the feeling that all this innovation seemed unlikely to result in what our country desperately needs, which is more compassionate and effective healthcare for Medicare patients and their caregivers.

The need to improve healthcare is particularly urgent for those seniors who have 3+ chronic diseases, or have developed cognitive and/or physical disabilities, since health issues seriously impact the daily lives of these patients and their caregivers. And of course, these patients are where most of the healthcare spending goes.

So here we have a group that uses healthcare a lot, and their problems are the ones who challenge front-line clinicians, healthcare administrators, and payors the most. And we love these people: they are our parents, grandparents, and older loved ones. Many of us are even taking care of them, sometimes to the detriment of our own health.

Knock knock. Who is listening? Where is the disruptive innovation we need to help elders, caregivers, and their clinicians?

Real impediments to the Health 2.0 Revolution

“Ready to Revolutionize Healthcare?” asks the Health 2.0 homepage.

Yes, I’m ready. But we’ve got a ways to go before these revolutionary tools can actually revolutionize the average older person’s experience with healthcare.

Why? Two key reasons come to mind.

1. Most solutions not designed with the Butlers in mind. As best I can tell, most innovators don’t have the situation of the Butlers in mind when they design their healthcare solutions. They neither understand the situation from the point of view of the Butlers themselves, nor do they understand the situation from the perspective of the front-line clinicians who could and should do better.

For instance, did the Butlers need games to maintain healthy behaviors and keep Mr. Butler walking and exercising after his stroke? Did they need for all interventions to be considered in light of “Healthspan” rather than “lifespan”?

(What is Healthspan for a slowly declining person with dementia and incontinence anyway? We geriatricians think of improving function, wellbeing, quality of life. And most importantly, of prioritizing the issues because you can’t possibly address them all so go with a combination of what matters most to the patient and what seems most feasible.)

And did the clinicians involved need predictive analytics to help them identify when Mr. Butler was at risk getting worse on some axis that the population health management gurus are worried about?

Which of these innovations will help patients, caregivers, and front-line clinicians establish an effective collaboration on mutually agreed-upon goals, and tailor healthcare to the patient’s situation and needs? How to convert population level processes regarding outcomes and cost-containment into real improvements in the healthcare experience of most elderly patients?

Finally, Medicare is the 600 pound gorilla in healthcare, both as a payer and as what most healthcare providers spend most of their time serving. You want to change healthcare? Change how we care for seniors. (And I don’t mean the healthy ones over-represented at AARP.)

2. Too many solutions to choose from. If you are a patient or caregiver, and decide to consider a new approach to weight loss, or timed toileting, or tracking a symptom: the number of approaches you could try – whether tech enhanced or no — is overwhelming. Especially if you research online.

If you are an individual clinician — or a smaller practice — and would like to consider a new and improved way of doing things: the choices are overwhelming. (A lot of primary care is provided by small practices; there’s obviously a trend towards consolidating but also some backlash.)

Now of course, big organizations have more resources with which to choose solutions for their providers, and big payers can choose solutions for individual patients and families. But unfortunately, when tools aren’t chosen by those who use them, users tend to end up with crummy user experiences.

There is probably an innovative way to work around this and make it possible for end-users to more easily find tools that are a good fit for them. But until those innovations become widely available, I think many in the trenches — patients, caregivers, and clinicians — may find that supposedly helpful innovations are actually not so helpful…a frustrating state of affairs when one is overwhelmed with the challenges of helping an aging adult in declining health.

Islands of relevance at Health 2.0

At an event as big as Health 2.0, there are of course pockets of activity relevant to the care of geriatric patients. There was a session on tools to help family caregivers (which covered two care coordination tools and two sensor/alert type tools) and another on nifty tech to help patients take their meds.

And of course, there was the justifiably popular Unmentionables panel, led by Eliza Corporation’s Alex Drane, which highlighted pervasive issues that affect health but that we tend to not talk about much. These include financial stress, relationship stress, and caregiving. (Good recap of the panel at Healthpopuli.com, and I LOVE that caregiving is high up on this list.)

Words to keep in mind

Alex reminded the Health 2.0 crowd that when it comes to helping with health, we must meet people where they are at. “Health is life; care, completely; empathy absolutely.”

As for me, I found myself thinking of a quote from Larry Weed and “Medicine in Denial.”

“The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.”

Similarly, for those who evangelize digital health, and believe that new technologies will revolutionize healthcare, I would say:

The religion of healthcare should not be feats of technology. The religion of healthcare should be to help solve the problems of patients and caregivers, and the compassion involved in the very act of care.

And I’d also recommend they read “Knocking on Heaven’s Door,” or something similar, while attending exciting conferences and planning to revolutionize healthcare.

Leslie Kernisan, MD MPH, is a practicing geriatrician, cautious techno-optimist, and enthusiastic caregiver educator. She hopes to someday be surrounded by cool tools and innovations that will make great geriatric care totally doable for all, especially primary care providers and family caregivers. She is a regular THCB contributor, and blogs at Geritech.org and at drkernisan.net.

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.

The treatment for bowel obstruction is to place the bowel at rest (“NPO”) and to suction out the contents of the stomach through a nasogastric (NG) tube, which decompresses the GI tract and decreases the pain and distension. And then you wait. Many SBOs will open up on their own, but those that don’t after a reasonable waiting period (4 to 7 days, generally) require surgery. Mom’s first obstruction didn’t open up, and a mercifully uncomplicated laparoscopic procedure successfully cut the fibrous band that was kinking the bowel (“lysing the adhesion”), relieving the obstruction.

Unfortunately, she had two more cases of SBO in the next year; these resolved after 3 to 5 days of bowel rest without surgery. We hoped we had seen the end of it, but we hadn’t: on a visit last month to the Bay Area to see my sister and me, my mother developed another SBO, a few hours before getting on the plane to Florida. Her pain began slowly, but within an hour she was in agony, retching, sweating and literally shaking. (By the way, nothing prepares adult children to see their parents in this much distress; it seems so very wrong, the world turned on its head. One of Scott Simon’s tweets captured my feelings: “I wish I could lift my mother’s pain & fears from her bones into mine.”) I took her to UCSF Medical Center’s emergency department. The next day, I sent my father – who is becoming a bit frail and whose presence by the bedside of his wife of 59 years was likely only to make everyone more anxious – back to Florida.

I’ve “eaten at my own restaurant” many times before: my two sons were born there, I’ve had surgery there, and I’ve accompanied family and friends to a dozen or so ED visits over the years. But being there with Mom somehow felt different: first of all, it was my mother; second of all, her hospitalization was likely to last several days (culminating in either resolution of the SBO or surgery), with brief periods of excitement punctuating long periods of waiting. This offered me the chance to soak in the processes and the culture. Here are six lessons I drew from my observations:

Chokepoints: One of the key principles in “Lean thinking” is to identify steps in a care process that don’t add value. Within a few minutes in the ED, I found a doozy. There was little question that Mom was having another bowel obstruction and, just as clearly, was going to end up with an abdominal CT scan. The scan has become trivially easy to do: there’s a scanner in the ED, and the test now takes about 10 minutes to complete. Blood tests were drawn and some results, such as the CBC, returned quickly. A few minutes after the blood was sent to the lab, the radiology tech arrived to obtain a chest x-ray and KUB (two different x-rays). Why did she need these, I wondered, when she’s going to get a CT scan in a few minutes?

It turns out that even a “stat” creatinine takes an hour or so to return, and radiology, understandably, won’t do a CT scan with contrast in the absence of a recent test of kidney function. Given the small chance that Mom was suffering from some other abdominal catastrophe like a perforation, the ED docs felt that an hour’s wait for the CT was too long. And so came the stat KUB/CXR – at a cost of several hundred, perhaps even one thousand, dollars – all because the creatinine was not more promptly available. It made me wonder: has anybody done the accounting to figure out the cost of a more rapid creatinine assay, factoring in the savings (in dollars, motion, and radiation) from obviating the need for the other, inferior, studies? And how many other chokepoints like this are scattered around our system?

Introductions and Rounding: On our medical service at UCSF, we’ve worked hard at improving the way we introduce ourselves, and my experience with Mom made me glad of this. We now have a white board by each bedside, on which all of the players (attendings, residents, students, nurses) are supposed to write their names, although adherence is less than perfect. Moreover, all our physicians now hand patients “face cards” with our pictures, names, titles, education, and a description of our role.

On Mom’s surgical floor, while the nurses and patient care assistants (PCAs) were excellent at introducing themselves and writing their names on the whiteboard, the doctors were not. Some didn’t introduce themselves at all; most did, but their roles were unclear. There were no face cards, and no physician names on the whiteboard. While the physicians in the ED did a good job introducing themselves, once we made it to the surgical ward, it was more than six hours before we had any idea who her primary doctor or team were. Later, when they came in to see her, they left behind no written traces.

We need to standardize, and then modernize, this effort. Sure, let’s start with cards and whiteboards. But how about this for an ideal futurist scenario: when doctors or nurses enter a room, our badge automatically triggers our picture, bio, and position description to pop up on the patient’s television screen or tablet computer, all recorded so that they can be shared with family members and looked up later.

Which brings me to rounding practices. On UCSF’s pediatrics inpatient service, teams now prospectively plan their morning rounds and – are you sitting down – produce a schedule that tells patients and families when the team will be by to see them. This schedule allows the nurse to be there, as well as some of the relevant subspecialists. We’re currently trying to figure out if we can pull this off on our much bigger and more geographically scattered medical service. I will push for us to do so, particularly after my experience with my mother.

I knew the surgeons would be there at some point between 6:30am and 9am, but had no way of pinning down the time beyond that. (Think about how you feel when Comcast says that the cable guy will be there between 1pm and 5pm.) I also knew that once the surgical team members left the floor, I would have no further access to them for the rest of the day. Most mornings, I came in by 6:30 and waited. One morning, I got there five minutes late, but luckily caught them before they left the ward. And one morning, I missed them and, as Murphy would have it, that was the occasion for the worst error of the hospitalization.

(Far) Too Much Information: On the morning I missed the surgeons on rounds, I had given myself a treat, stopping at Starbucks on the way in to the hospital. While sipping my mocha, I received a frantic call from my dad in Florida. “One of the doctors was just in to see your mom, and told her she has lung cancer,” he said, his voice shaking. I’m on my way in, I told him.

You can guess what happened. A harried July intern was running from room to room seeing patients, her mind probably distracted by the thoughts of everything she needed to get done that day. She saw the official reading of the abdominal CT scan from the prior day. On it, Mom’s left lung nodule was seen and called “suspicious for malignancy.” (Her prior films are in Florida; the UCSF radiologists had nothing to compare this to.) Rather than calling me about the finding (yes, everyone knew who I was [though I remain unconvinced that VIP status necessarily improves one’s outcomes] and my cellphone number was on the whiteboard), the intern came into Mom’s room, woke her from her morphine-aided sleep, and told her that the x-ray showed probable lung cancer. My mother wasn’t sure if she had dreamed this. Unfortunately, she hadn’t.

I was livid, but now have the distance to draw some general lessons from this error:

• The word “cancer” remains emotionally nuclear; it should not be tossed around lightly.
• Don’t give weighty, complex, and highly charged information to narcotized elderly people – or anyone for that matter – who are just waking up without having their family there.
• The intern should have made a little effort to inquire about prior films.
• We really need interoperable health records, which would have allowed our radiologists to access Mom’s Florida scans.
• Even when you’re rushing through your checklist, please use a little common sense.

The Nurses: I’ll not be the first person to observe that it is the nurses, not the doctors, who really determine the overall experience of a hospitalization. Our nurses, on 13 Long at UCSF Medical Center, were exceptional. The nurses and the Patient Care Assistants (PCAs) were competent and caring, and they had their acts together. In the old days, our nurses wore varying types of clothes, the roles of nurses and PCAs were vague, and basic processes like medication administration and shift change were done haphazardly. Today, UCSF nurses are dressed professionally, in uniforms that make clear their roles; their handoffs are robust (“I’m signing off in 30 minutes; this is Anna, who will be taking over for me”); it’s clear what the nurses do and what the PCAs do (there is a special place in heaven for the PCAs, by the way); and the presence of bar coding and computers in the rooms makes things feel far safer and has standardized previously chaotic processes. (All of these elements are captured by our achievement of “Magnet Status.”) One nurse tried an IV twice, couldn’t get it, and calmly said, “I wasn’t successful; I’ll get my colleague who will get it done.” (She did.) And everybody cleaned his or her hands, every time. It was very impressive.

Part of the reason that the experience with the nurses is so important is that it either does – or doesn’t – give you as a family member trust that things will be okay when you’re not there. When Mom was hospitalized in Florida last year, my father hired a private nurse to be with her one night; on another, I asked to sleep at her bedside, and was given a cot so disgusting that it would have been rejected by every youth hostel I stayed in during college. At UCSF Medical Center, I left at 10pm each night with complete confidence that things would be okay overnight.

Yet there are nursing-related processes that can be improved. Two bits of technology remain the bane of patients’ lives in the hospital: the nurse call button and the IV pump alarm. In 2013, in a hospital in San Francisco, can we really not come up with a system where the call button triggers a video feed to allow a nurse to see and speak to the patient, allowing for effective triage? And the IV pump beeps incessantly: kinked line, empty IV bag, incoming tweet, who the hell knows. Isn’t there some new technology to improve this situation?

(Speaking of new technology, the NG tube also seems ripe for innovation. Rigid and uncomfortable; it gives poignancy to the old schoolyard insult, “up your nose with a rubber hose.” Can’t we do better?)

Jargon: Boy, this one is tough. I’ve got a pretty good jargon detector, but after watching the docs speak to Mom for a few days, I realized that half of what I say is probably unintelligible to my patients. One of the surgeons, who I regard as a fabulous communicator, came in one day to talk about Mom’s surgical options. “We can go in there and try to lyse the adhesions, but this only will work if we can find a focal lesion,” he said. Not the worst I’ve heard, but listening through my mother’s ears, I realized that she did not understand anything after, ‘We can go in there…” On our rounds, perhaps we should appoint one team member to be our official jargon-detector, offering the speaker feedback in an effort to sensitive all of us to this pernicious problem. (Sure, the patient-centered view would have us empower patients to speak up if they don’t understand something, but I think few patients will. Certainly not my mom – unfailingly polite, she just shook her head in agreement, despite understanding very little).

Managing Uncertainty: Because of my VIP status, we had a lot of doctors weighing in on the best treatment. The answers to some questions were clear, including the desirability of waiting for spontaneous resolution rather than doing urgent surgery. Thankfully, on Day Three her bowel opened up and she began to eat. (By the way, the only wonderful thing about NG tubes is that taking them out is one of life’s great pleasures; think ski boots and multiply by 100.) But whether she should go for elective surgery, given the near-certainty of future recurrence, and whether and how to modify her diet, were areas of great ambiguity.

On each of these, I liked the fact that the physicians laid out the plusses and minuses of the various actions. What was difficult – even for me – was how to deal with conflicting recommendations. Many folks emphasize the importance of a strict low-fiber diet, and yet one surgeon made clear that it probably doesn’t make any difference. (Mom chose to stick with the diet; mainly because doing something feels better than doing nothing). And we decided against elective laparotomy to “clean out the abdomen,” a big operation with no guarantee of success. This was the consensus judgment of several physicians, although there were a number of variations on the theme that could have led to some confusion.

All of this made me more convinced than ever of the need for a quarterback, one physician to synthesize all of the conflicting advice and present a unified recommendation to the patient and family. It’s what a good hospitalist does. In my mother’s case, this role was assumed by the lead surgeon, who also supplied me with some of the key literature, which was extremely helpful.

Unlike Scott Simon’s mom, my mother’s hospitalization had a happy ending, at least for now. Overall, I was very pleased with the quality of care she received at UCSF Medical Center and would recommend it to other patients without the slightest hesitation. The nurses and doctors we met are bright, committed, friendly, and collaborative, and the systems we’ve put in place over the past decade – IT, handoff processes, whiteboards, and more – are making a difference.

That said, like all great organizations, every encounter provides an opportunity for improvement. I hope we can use my mom’s experiences – and those of other patients and families – to do a little better for the next patient.

Robert Wachter, MD, professor of medicine at UCSF, is widely regarded as a leading figure in the patient safety and quality movements. He edits the federal government’s two leading safety websites, and the second edition of his book, “Understanding Patient Safety,” was recently published by McGraw-Hill. In addition, he coined the term “hospitalist” in an influential 1996 essay in The New England Journal of Medicine and is the former chair of the American Board of Internal Medicine.  His posts appear semi-regularly on THCB and on his own blog, Wachter’s World.

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.

There are a variety of theories about why this happens. Perhaps it’s the emotional toll – the grief that accompanies a broken heart. Perhaps there’s a practical explanation – a wife or husband may have provided support in the form of reminders to take medication. Perhaps it’s that a surviving spouse may be less active and feel less of a sense of responsibility after a partner is gone, contributing to a decline in health.

For my dad, in subtle and not-so-subtle ways, his heartbreak was evident from the start. I’d never seen him cry as he did in the minutes after we disconnected the ventilator keeping my mother alive back in January. He typically kept his emotions well contained, and it was agonizing to watch him overcome by grief.

“My sweet, sweet wife of 42 1/2 years has just passed,” he wrote on Facebook hours later. “She was a wonderful wife, mother, and grandma. There is a hole in my heart.”

Then he stopped talking about it. He changed topics when my sister and I asked how he was coping. Instead, he talked of moving to the Jewish senior apartments, going on a dialysis cruise, starting a new business, visiting our family in New Jersey.

My dad’s health problems may have caught up with him even if my mom hadn’t died. He had heart disease, diabetes, renal failure and congestive heart failure. Last summer, his heart stopped and he had to be on a ventilator, but he pulled through.

Whether by coincidence or not, his health began to slide further after my mom’s death. He fell in the bathroom and cut his foot, a problem for diabetics like him. When the toes didn’t heal properly, he had to have them amputated.

He joked that he and his toes had had a good run and wondered if the toe fairy would come for a visit.

My father maintained his humor even on the morning of his death. When my sister called to ask him, “Who’s the best dad in the world?” he responded, “I don’t know, but when you find him, can you have him give me a call so I can get some pointers?”

I can’t help but think about the pain behind that facade – how much he missed my mom, the woman he shared his life with and relied on for more than four decades.

In the end, I was relieved that my sister and I didn’t have to decide whether to disconnect life support, a decision that caused so much anguish and pain in my mom’s final days. My dad died quickly: He went into cardiac arrest and could not be revived. He was 68.

There’s some solace in the idea that my parents are together again. But that doesn’t make this Father’s Day any easier.

I’ll cherish the time with my wife and kids. We’ll probably go for bagels, as we do every weekend, and maybe we’ll head to the Jersey Shore. I wish that I could share the day’s highlights with my dad. I want to tell him that his 6-year-old grandson has learned how to play checkers (and is actually decent) and that our 3-year-old is building symmetrical Lego spaceships. I want him to know that the baby boy my wife is expecting in November seems to be doing well.

Could I have made more of my time with my parents? Will my children remember them? How I can live a life worthy of their legacy? If I can be as kind and generous a parent as they were, that will be a start.

Charlie wrote about his mother’s death, and how it changed his thinking about end-of-life care, in February.

Charles Ornstein is a senior reporter at ProPublica, where this post originally appeared.

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.

A CT scan of the head is performed and shows a large bleed within the brain.

The bleed was probably caused by high blood pressure. In reality however, the patient’s condition is essentially terminal and the cause of the bleed isn’t important at this point.

The small hospital has an intensive care unit and an open bed. It however has no neurosurgeons, nor indeed even neurologists who round at the hospital. And so the physician in the emergency room starts trying to transfer the patient to a hospital where a neurosurgeon can see the patient.

There are really two issues here. The first is a legal issue concerning a law called EMTALA. EMTALA is a law that dictates transfers for higher care amongst hospitals that accept Medicare (virtually all hospitals). In very broad terms it puts responsibilities and requirements on both the hospital trying to transfer the patient and the hospital that might accept the patient. The former has a responsibility to stabilize a patient. They cannot refuse care in an emergency as a matter of lack of payment or inquire about payment prior to treatment to stabilize. Nor can they transfer a patient after stabilization merely as a matter of lack of ability to pay. The latter has a non-discrimination requirement, that specifically reads,

A participating hospital that has specialized capabilities or facilities (such as burn units, shock-trauma units, neonatal intensive care units, or (with respect to rural areas) regional referral centers as identified by the secretary in regulation) shall not refuse to accept an appropriate transfer of an individual who requires such specialized capabilities or facilities if the hospital has the capacity to treat the individual.

Case law on the non-discrimination provision is scarce but in catastrophic injury, where no specialized intervention will alter the course of the patient’s condition, I would argue that the patient doesn’t require specialized care. And not merely cases where the patient is brain dead at the time of the transfer request but also in situations where brain death is inevitable or the condition is otherwise not survivable. The patient and family can proceed to comfort measures at any hospital, there is no specialization about such care.

The second issue is an ethical one. Do hospitals with specialized capabilities owe something to patients and families to transfer as a matter of finality and closure. In that we’re saying, “Watch, we did everything we could…”?

While I’m somewhat empathetic to such an argument I have trouble with it. I think it reflects a problem in both the expectations we have of health care as patients and how physicians are trained to deal with end of life. Really it is a shame for physicians to come out of training without basic palliative and communication skills. Even the physician in the small rural emergency room should have such a skill set. The capability to have an end of life discussion with families, even if the medical issue falls somewhat outside their scope of specialty.

I’m also somewhat disappointed in how some referring physicians appear to place priority in getting the patient off their hands over the patient’s well being. I’ve had cases where even after discussion with the consulting physician at an outside hospital and having seen the films and described in no uncertain terms to the other doc that the injury is not survivable that they continue to press for transfer.

I may be wearing blinders here but, and I think much of this is subconscious, I can only draw a single conclusion from such arguing. The continued pressure to accept the patient in transfer, after I’ve explained there is nothing to do for them, is a condemnation of my analysis of the situation. They’re basically calling into question my competency; my faculty’s compentency.

And I’m okay with that in the sense that I’m not going to take offense. What I have trouble with is they’re now trying to transfer their patient to a consultant who they don’t think is competent.

I don’t know how they can have the patient’s best interests in mind and work to transfer them to another physician they’ve basically said they don’t trust.

The issue gets more complex of course and I could continue writing. What if the patient was 6 months old instead of 61 years but the situation, in terms of the finality of the condition, remained the same? How many physicians on the line at the accepting hospital are literally too lazy to accept the transfer and work for any reason not to?

In general however, in an honest physician-to-physician phone call, with terminal conditions, where nothing will be done at the accepting hospital, no matter the patient’s age, I’m not sure transfer is a good thing. It significantly contributes to costs, provides false hope and contributes to our societal expectations at the end of life.

Colin Son, MD is a neurosurgical resident in Texas. He blogs regularly at Residency Notes, where this post originally appeared.

Anubhav Kaul, MD and Sindhu Kubenderan

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 20^th 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.

A large number of SNF patients have limited functional status and are dependent on skilled nursing services.   Patient characteristics to consider:  1) the average age is close to 80 years; 2) one-third of the population is affected by cognitive diseases; 3) 50% of SNF residents have at least three to six limitation in their basic activities of daily living, such as dressing, bathing, mobility or eating; 4) half of the population is being managed for five or more chronic diseases – many of which are considered terminal.   Considering these factors, SNF residents may be receiving aggressive and unnecessary care during a terminal and hopeless stage of their life.  Medicare data from the Dartmouth Atlas has shown a strong correlation between number of physician encounters and SNF re-hospitalizations during the last two years of life. [2] Furthermore, a recent report by the Institute of Medicine this year, assessing the geographic variation of Medicare spending, found that variation in post-acute care utilization, which includes SNF services, accounts for the majority of unexplained variation in total utilization across regions. [3]   Are SNF patients receiving the type and quality of care they desire towards the end of life?  There is no definitive answer.  But what we do know is that advance care planning is inadequate – only one out of three SNF patients has a “do-not-resuscitate” (DNR) directive and less than two percent have a “do-not-hospitalize” (DNH) directive documented. [4] The inability of providers to actively engage patients and their families in a dialogue about the patients’ prognosis and their goals of care is a major concern. Therefore, the timely introduction of palliative care needs to be emphasized.  Attributes of palliative care include the documentation of advance care directives and protection of the patient’s right to establish and maintain control over the type and intensity of medical care they receive.  It also supports the seamless transition to hospice care as the patient continues to get sicker and enters the terminal stage of life.  Advance care planning is often times neglected at nursing facilities and can lead to distressing end-of-life experiences for the patients and their families.  During the last few months of life, comfort measures may be more appropriate than aggressive life sustaining interventions at the hospital ICU.

The economics of the nursing home services pose a challenge for appropriate end of life care.  Higher Medicare reimbursements provide an incentive to nursing homes to hospitalize Medicaid nursing home patients, who are receiving long term care.  After a minimum three day hospitalization, these patients can return back to the nursing home under the Medicare SNF benefit – not to mention the financial benefit of receiving Medicare reimbursement over payment stingy Medicaid.   Furthermore, under the SNF Medicare benefit, regulations prohibit simultaneous enrollment in the hospice benefit – unless the hospice care diagnosis differs from the diagnosis for which SNF care is being provided, which is rarely the case.  Additionally, since Medicare reimburses nursing homes a higher rate for skilled services, patients who transition to the hospice care benefit are not considered “favorable” patients and must pay for room and board out of pocket or through enrollment in Medicaid, which many patients don’t qualify for.[4]  Therefore, access to hospice and comfort care services is mitigated by these financial considerations and affected patients continue shuttling between hospitals and SNFs – and in many cases, succumbing to death in either location.

Let us look at some fee-for-service Medicare spending data from the Dartmouth Atlas to illustrate the correlation between total reimbursement and service specific reimbursement during the patient’s last six months of life, using per beneficiary data from various regions around the country.  Each dot on the graph represents a Hospital Referral Region (HRR).   The price-adjusted reimbursement rates have been further adjusted based on the age, sex and race of the patient population being considered.

As expected, higher spending HRRs spend greater amounts on SNF and inpatient care than lower spending HRRs during the last six months of a patient’s life.  However, there is no correlation between total spending and hospice care reimbursement during the patient’s last six months of life.  Even if higher spending HRRs consist of very sick people that need greater level of inpatient and SNF care, then one would think that hospice care utilization would also be greater at these regional units during the patient’s last six months of life.  But the above graph does not show any such correlation – there is no identifiable trend.  However, if we plot the proportion of hospice reimbursement against total spending for a given HRR, this is what we see:

Interestingly, HRRs that utilize a greater proportion of hospice care in relation to total reimbursement tend to have lower overall spending during the last six months of a Medicare beneficiary’s life.   This population level data is proof of how end of life care spending can be controlled with better resource allocation towards the uptake of hospice care.  Given that all patients considered have a life span of six months; it is safe to say that HRRs that have higher inpatient and SNF spending are not necessarily providing better quality care.  Thus, there is an opportunity to avoid repeated hospitalizations and subsequent SNF care in this fragile patient population.

The healthcare delivery system is in the midst of reform – now is the right time to address the issue of SNF resident hospitalizations.  The Patient Protection and Affordable Care Act has enabled the Center of Medicare and Medicaid Services (CMS) to explore various initiatives aimed at patient care coordination and safety – which will encourage hospitals and SNFs to collaborate and enhance the quality of care and efficient use of resources.  Even for the success of Accountable Care Organizations, greater focus must be placed on strengthening the partnership between hospitals and SNFs in order to support the clinical integration of patient care.  Besides improving the outcome of discharged patients and encouraging appropriate mechanisms for end-of life-care, the payment system needs further reform.  Innovative reimbursement models, such as bundled payments for each patient episode, hopes to circumvent the fee-for-service system and prevent overutilization of medical care.  Currently, CMS is penalizing hospitals who have higher than average risk-adjusted readmission rates for certain diagnoses – the maximum penalty is 1% of all Medicare payments made to the hospital.  Furthermore, under the Medicare Nursing Home Value-Based Purchasing Demonstration, participating nursing homes are being rewarded financially if they are able to decrease their threshold of avoidable hospitalizations and meet certain performance measures – incentivizing and building a culture of accountability might be a solution.  Payment reform can help improve efficiency, prevent repeated hospitalizations, and decreases the regional variation in SNF care utilization and spending.  However, prioritizing advance care planning and eliminating barriers that prevent access to Medicare hospice benefit will be essential to maximize the success of these new payment models.   As the American population ages, more patients will require Medicare coverage for acute hospitalizations and continuing care at SNFs.  Thus, it is crucial that the healthcare system efficiently meets this demand and, more importantly, assure that critically ill patients receive “appropriate care” – the care that they genuinely desire.

Dr. Anubhav Kaul is a recent medical graduate from Ross University School of Medicine and a future medicine resident at Lahey Hospital and Medical Center.  He is currently pursuing a Masters in Public Health at The Dartmouth Institute for Health Policy and Clinical Practice.

Sindhu Kubenderan is pursuing a Masters in Public Health at The Dartmouth Institute for Health Policy and Clinical Practice.  She is a prospective medical student. This post appeared first in Healthcare Finance News.

References:

1)      Medicare Payment Advisory Commission (March 2013). Report to the Congress: Medicare and the health care delivery system. Washington, DC: Medicare Payment Advisory Commission.

2)      Mor V, Intrator O, Feng Z, Grabowski DC. The revolving door of rehospitalization from skilled nursing facilities. Health Aff . 2010;29(1):57-64.

3)      Institute of Medicine. Interim report of the committee on geographic variation in health care spending and promotion of high-value care: preliminary committee observations. Washington, DC: National Academies Press, 2013.

4)      Aragon K, Covinsky K, Miao Y, Boscardin WJ, Flint L, Smith AK. Use of the Medicare posthospitalization skilled nursing benefit in the last 6 months of life. Arch Intern Med. 2012 Nov 12;172(20):1573-9.

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.