January 25, 2015

Doing the Right Thing

For the third time in a 50 years, it’s hip to talk about dying (except, perhaps, if you are in the middle of dying yourself). Interest seems to come in waves. First there was Elisabeth Kubler-Ross, whose book On Death and Dying, published in 1969, opened the curtains on life’s final act. Then came Sherwin Nuland in 1994, with How We Die: Reflections on Life’s Final Chapter. And now we have Atul Gawande with Being Mortal: What Matters in the End, along with several other important books, ranging from the Institute of Medicine report, Dying in America and, most recently, Angelo Volandes’ The Conversation, with its overstated subtitle, A Revolutionary Plan for End-of-Life Care. It’s good that we are talking about care near the end of life, and maybe this time the interest won’t sputter out before we actually do something to assure that all patients die with a minimum of pain and distress, in their homes if that’s where they want to be, and without unwanted medical technology. But what of the months and sometimes years before death, when so many people are neither robust nor dying, but somewhere in between?

Patients and doctors alike seem to want a black and white world, where you either focus exclusively on prolonging life or you focus exclusively on being comfortable. It’s either the ICU or hospice. Even Susan Jacoby, in her trenchant book Never Say Die, advocates that doctors “do everything possible only if there is a realistic hope that I can emerge as a functioning, mostly competent human being. Then stop and let me die.” She moves the bar demarcating intensive medicine and comfort care—she thinks comfort care should begin before dying starts rather than after it has begun—but her world is still black and white. What I am interested in, by contrast, and why I write about people who are frail and people in the early and middle stages of dementia, is the gray zone.

In the gray zone, people are not dying in any conventional sense. They are still living and may continue to live for some time—in the case of people with Alzheimer’s disease, perhaps even 5 years—but they have begun the final phase of their lives. They are beginning their final descent, as airline pilots so helpfully tell you a good half hour before you reach your destination, but won’t actually land for some time, and even then it will be a while before you arrive at the gate and can take off your seatbelt.

Who is in the gray zone? Principally people with either physical frailty or cognitive frailty (dementia). People who have a serious, ultimately fatal illness such as congestive heart failure or kidney failure or a progressive neurologic disease such as Parkinson’s or amyotrophic lateral sclerosis (Lou Gehrig’s disease). People who have a bad disease that will inevitably get worse and who have embarked on the spiral of relentless decline that will culminate in their death.

What approach to medical care makes sense for people in the gray zone? Not everybody wants the same thing, but it is my belief based on clinical experience, scientific evidence, and common sense that most people who are physically or cognitively frail favor what I call intermediate care. This is care that is focused on maintaining whatever functions the person still has—activities such as walking, talking, seeing, hearing, and thinking. Preserving functioning is the primary goal of care. It may not be the only goal of care: people in the gray zone will often wish to live longer, but only if the treatments intended to achieve this end do not further impair their functioning. People in the gray zone usually want to be comfortable (doesn’t everyone?), but they are willing to undergo some discomfort in exchange for the strong possibility of holding on to the functions they have.

What does intermediate care look like? We tend to talk more about what it excludes than what it includes. It excludes attempted CPR—because people who are frail almost never survive attempted CPR and if they do, it is likely to be in a state of far poorer functioning than before the cardiac arrest. It excludes treatments such as risky chemotherapy and treatment in the ICU for the same reason: these medical therapies are seldom effective in prolonging life in patients who are frail and if they succeed, the price is usually a decline in function. What intermediate care includes is treatments that are intended to maintain function, things such as cataract surgery or hip fracture repair. It includes life-prolonging treatments such as antibiotics for pneumonia or transfusions for gastrointestinal bleeding if they can be accomplished with only a small risk of deterioration in the person’s ability to function. That means it may well include hospital treatment, up to a point. The distinguishing features of intermediate care are both the benefits it is likely to confer (better functioning, possibly longer life) and the burdens it is likely to avoid (decline in precisely those areas that the patient values most, whether mobility or cognition or some other domain of daily functioning). Intermediate care can be high tech or low tech: the issue is not the complexity or the cost of the treatment, but its effects.


We need to let patients know they have entered the gray zone—if they mistakenly believe they will get better or they fail to realize they are dying, they will be unable to make wise choices about the kind of medical care that is right for them. We need to tell patients that there is such a thing as intermediate care and help them understand what it means in practice. 

January 21, 2015

The Grey Zone

The choices are not just between the ICU and hospice. There's a great deal in between. See post on Sunday for more.

January 18, 2015

Tell Me A Story

Come then, and let us pass a leisure hour in storytelling, and our story shall be the education of our heroes. (Plato)

The story—from Rumpelstiltskin to War and Peace—is one of the basic tools invented by the human mind for the purpose of understanding. There have been great societies that did not use the wheel, but there have been no societies that did not tell stories. (Ursula Leguin)

In his new book, The Conversation, my friend and colleague, Angelo Volandes, makes the case for using videos to help patients and their families understand what lies in store for them as they approach life's end. He quotes one of his patients—a working class Irish-American with advanced brain cancer: “if a picture is worth a thousand words, a video is worth hundreds of thousands.” And Angelo’s videos can be very helpful: they are designed to be clear, short and accurate, to show real patients with real diseases undergoing actual treatment for their illness. But the irony is that the power of this book, and it is powerful, is all in the words.

Joining the ranks of other prominent writer-physicians such as Abraham Verghese, Oliver Sacks, Jerome Groopman and Atul Gawande, Volandes tells stories. His most engaging are those that are the most intensely personal: the wife of a professor he worked for as an undergraduate who terrified her husband—and the young student preparing meals for them—as she coughed up blood and struggled to breathe; and his own father, who decided after a series of debilitating cardiac events that he would not want to undergo attempted CPR. The stories illustrate with great poignancy the different ways that patients experience the final stage of their lives. His message is that it’s important to write your own story: whether you have a good ending or a bad one depends not so much on the path you follow as on whether you chose that path. As he puts it, “there are no right and wrong decisions about medical care at the end of life; rather, the value lies in making a fully informed choice.”

Really? Are all choices equally good? In The Conversation, we learn about 10 patients, among whom 6 make explicit decisions about what kind of medical treatment they want, and 4 are unable to make decisions so the care they receive is what their families or their doctors recommend. Most of the patients in the book who make their own choices, either after watching Angelo’s videos or after going on a guided tour of the ICU or dialysis unit to see what lies ahead (nobody in this book thought about their preferences any time before the end was imminent), choose to focus on comfort; only 2 persist in their wish that the doctors “do everything.” And the 4 patients who did not participate in the decision-making themselves, all of whom underwent aggressive, sometimes “brutal” treatment in their last weeks or months of life, are presumed to have gotten treatment that they couldn’t possibly have wanted, had they only been engaged in the process of deciding.

Consider the Italian matriarch who had a feeding tube and repeated courses of treatment for pneumonia after developing advanced dementia. She suffered mightily in her “last miserable weeks” of life, as did her family. Or take the elderly Ukrainian-American with lung cancer who underwent repeated attempts at CPR and assorted invasive procedures even though he had “one foot in the grave.” Young Angelo, the physician at the center of these resuscitative efforts, describes the treatments as putting “terminal cancer patients through torture.” The presumption is that if only these patients had known the truth about what modern high tech medicine does to dying patients, and if only they had then been asked what they wanted, they would have opted for comfort care.

So it’s not just that most patients don’t want treatment that has virtually no chance of doing anything for them other than causing extreme discomfort; it’s that no patients want this. The reason that any of Angelo’s patients opted for maximal medical treatment is that even though they understood what the treatment entailed, they didn’t fully  accept their own situation: they did not believe that they were dying. The husband of a young woman dying of metastatic breast cancer comments that “you never know what new chemo is on the way,” even though his wife has hours to live and no drug is going to descend from the lab deus ex machina to save her. The 79-year old African American with end-stage kidney disease says he’s “been through harsher things than this” and “God has given me a second chance before.”

Physicians cannot force patients to accept our diagnoses and prognoses, assessments made based on scientific training and clinical judgment. We cannot require them to accept our recommendations for treatment. Nor, in contemporary society, can we withhold what we believe to be futile treatment as long as we are not 100% certain that it cannot possibly prolong life, even by a few hours. But we can do a better job informing patients and families of the reality as we see it so that they can choose wisely. Videos can help, but above all, so can stories, stories that acknowledge our mortality and capture the realities of advanced illness.The real power and the beauty of The Conversation stem not from its exhortation to have a conversation about preferences for end of life care, and not from its discussion of videos that can jump start the conversation, but rather from the stories themselves.

January 14, 2015

Once Upon a Time...

A new book of stories, stories that will inform the way you write the last chapter of your own life.
See review on Sunday.

January 11, 2015

In his 2005 book, On the Take, former New England Journal of Medicine editor Jerome Kassirer inveighed against the influence that drug and device companies exerted over physicians. Through a variety of strategies, ranging from subsidizing elaborate meals at medical conferences to lucrative consulting arrangements to all-expenses-paid travel to exotic resorts in exchange for product endorsement, corporate America affected and sometimes determined physician behavior. In response, many academic medical centers have banned pharmaceutical sales reps, the “detail men” of yesteryear and put sometimes stringent conflict of interest policies into effect. The Sunshine provision of the Affordable Care Act requires drug companies and device manufacturers to reveal how much money they gave to doctors and to hospitals and to whom they gave it. As of September, 2014 this information is publicly available on a special website maintained by the Centers for Medicare and Medicaid Services. Is this provision having an effect? Will it?

An article written by a health economist and a health lawyer predicted the law would be unlikely to have a direct effect on either patients (by dissuading them from seeing particular physicians) or on physicians (by shaming them into severing their relationship with drug or device manufacturers). It suggested there might nonetheless be a beneficial effect if what the authors called “learned intermediaries,” such as health insurance companies, begin discriminating against people or institutions that are the recipients of what they regard as excessive largesse.

Six states had already introduced legislation requiring disclosure of payments in the form of gifts, food, travel and fees long before the Sunshine Act was passed, and the results in those states give us a preview of what is to come. One study of the Massachusetts law, which went into effect in 2009, concluded that the disclosure requirements were associated with a fall in the total volume of prescriptions, a decrease in the use of brand name drugs, and a rise in the use of generic drugs. But it’s hard to tease out how much of the change was due to the law and how much due to other simultaneous changes in the culture of medicine.

It’s too soon to draw conclusions about the federal law, but some preliminary observations are raising red flags. According to an investigative journalism piece just published in the New York Times, the information available on OpenPayments, the CMS database, is incomplete and replete with errors. Some companies, whether intentionally or accidentally, misspell the names of their drugs and devices or use different names for the same drug in different sections of the database. All told, 40% of the records in the database are missing the names of the doctor or the hospital that received the payment. And indeed, when I checked this out by looking up a local academic hospital, I found that if I entered "Beth Israel Deaconess Hospital," the report said there were no conflicts entered for this facility, but when I entered "Beth Israel Deaconess Medical Center," I found dozens of them.

Even if the reporting were accurate, the real question is whether transparency alone will have a significant effect. I’m doubtful. For some time, medical journals have had disclosure requirements for articles. The result is that the reader knows about consulting relationships, advisory board memberships, and other financial ties authors have with their sponsors. Perhaps the reader will take more seriously those papers in which the authors have no disclosures to make than those where they have a litany of them. But in either case, the article has passed muster: it has made it past the gauntlet of peer review, it has the journal’s stamp of approval. Does anyone seriously discredit a paper because of the author’s pedigree?

Does any of this matter? In particular, what does it have to do with medical care for older people? A great deal. Older patients comprise a huge part of the market for most drugs and most devices.  The average 65-year-old takes 4 prescription medications a day. The average nursing home resident takes closer to 9. In 2015, Medicare spending on Part D, the prescription drug benefit, is expected to account for 14% of total Medicare expenditures in 2015, or $76 billion.
And while the top ten prescription drugs dispensed to older people include such inexpensive generics as hydrochlorothiazine and atorvastatin, many ultra-expensive specialty drugs are used principally in older people. Some of these drugs are one-of-a-kind; many are life-saving. This is where the concern about undue influence of the manufacturer comes in. Precisely because older people take so many medications (and use so many devices) and precisely because they amount to such a big chunk of health care resources, we need to be concerned with what drugs doctors prescribe. Public disclosure of gifts from PhRMA is unlikely to make much of a difference in the all important power of the pen. 

If we want to assure the integrity of the prescribing process--and this is critical because of the number and cost of the medicines taken by older people--we need to prohibit certain kinds of corporate/physician interactions, and to give such bans teeth.


January 08, 2015

You are my sunshine, my only sunshine...

The Sunshine Act went into effect in September, 2014. It requires public disclosure of payments to hospitals and physicians by drug companies and device manufacturers. Is it working to limit inappropriate influence on physician behavior? Will it? See my blog posting this weekend.

January 04, 2015

Learning from the Limeys

Judging by what you read in the press, you might think that Britain’s National Health Service (NHS) provides second rate medical care. When Senator Ted Kennedy was diagnosed with a malignant brain tumor in 2008, Republican Senator Chuck Grassley of Iowa opined, “I don’t know for sure. But I’ve heard several senators say that ted Kennedy, with a brain tumor, being 77 years old…if he were in England, would not be treated for his disease, because…when you get to be 77, your life is considered less valuable under those systems.” 

Anyone who says anything good about the NHS risks being attacked by the political right. Founder of the quality improvement think tank, the Institute for Health Improvement, Don Berwick, learned this the hard way when he was lambasted by arch-conservative pundit, Betsy McCaughey for favorable remarks he made as a guest of honor at the 60th birthday celebration for the British National Health Service. McCaughey best known for labeling advance care planning as creating “death panels,” and thus consigning to the trash any proposal that would have enabled Medicare to pay for discussions between patients and doctors about their preferences for end of life care, asserted that Berwick liked the NHS because it promotes “central planning, frugality, wealth redistribution and rationing.” As a result of attacks like this, Berwick was pilloried by the American right and unable to be confirmed by the Senate as Administrator for the Centers for Medicare and Medicaid Services (CMS).

The British, however, are generally very proud of their health care system, with 71% of them maintaining it is one of the “best in the world.” They have reason to be proud. A more objective evaluation than that of McCaughey and her ilk, prepared by the Commonwealth Fund, compared the performance of 11 developed countries and found that the UK’s overall ranking was #1—and the US’s was #11. And in the arena of geriatric care, the UK is miles ahead.

A new report being released this month by the British Geriatrics Society, Fit for Frailty, is the second of a two-part series. Part I, which came out in June of 2014, was a practice guideline for clinicians caring for older people in the community. It highlighted the importance of recognizing frailty and of emphasized what doctors should do with the individual frail patients in their care. Part II presents recommendations for a community response to frailty, focusing on the services and systems that should be put in place to promote quality of life for this vulnerable population. Highlighting just a few of the report’s conclusions should make clear just how much we have to learn from the limeys.

Fit for Frailty argues for the creation of an individualized (or as they prefer, individualized) “Care and Support” plan. This is a form of advance care planning that squarely addresses the contradiction inherent in most American versions of advance care planning, the conflict between current and future health status. American advance directives make most sense for people who are entirely healthy when they fill them out and are anticipating the remote possibility that they will develop a catastrophic, irreversible illness. Think Karen Quinlan, Nancy Cruzan, Terri Schiavo—all cases of young, healthy women who abruptly lost consciousness and subsequently were diagnosed as being in a persistent vegetative, and who didn’t have a clear written advance directive. 

But older people who engage in advance planning are often already in a state of chronically ill health. What they have to think about is not just what they would want if they suddenly developed a new, overwhelmingly bad disease (say the person with heart failure, diabetes, and chronic pulmonary disease who is found to have lung cancer), but also what the approach to treatment should be if they develop an entirely predictable, common complication of the diseases they already have (say the person with heart failure, diabetes, and chronic pulmonary disease who comes down with the flu or pneumonia).

In recognition of geriatric realities, the Fit for Frailty report has six parts: naming the person responsible for coordinating their care (this is different from designating a health care proxy and refers, rather, to establishing a primary care physician); a health and social care summary (a list of diagnoses, medications, and social situation—recognizing that how best to care for someone depends both on what he’s got wrong with him and the resources available to him as well, I would add, as his goals of care); a wellbeing maintenance plan (including the goals of care, designating who is responsible for doing what on a day to day basis); an escalation plan (describing what a patient and caregiver need to look out for and whom to call or what to do if there is a problem); an urgent care plan (addressing crisis management and specifically dealing with preferences for hospitalization); and an end of life care plan (articulating the preferred place of dying and whether to have an emergency medical kit in place).

Fit for Frailty also advocates developing “pathways of care” for the different frailty syndromes, such as falls or delirium. This means plotting out what- should-happen-if, not for all possible health problems, but for the most common situations that frail elders might find themselves in. And it means assuring that the necessary systems are in place to allow for implementation of the plan. This is crucial since current practice is geared to implementing only one kind of plan, a plan that assuring that acutely ill individuals receive maximally aggressive medical care as expeditiously as possible. If the plan calls for something else, for example evaluation and treatment at home, a system has to exist to accommodate this approach. As Fit for Frailty says, very matter-of-factly, keeping a frail old person at home when he or she get sick should be as easy as arranging hospital admission. Right now, setting up all the necessary services is much more complicated than calling 911. Keeping a frail person at home requires making a diagnosis. Right now, the best way to make a diagnosis is to send the patient to the hospital emergency department. Keeping a frail person at home necessitates skilled health staff to provide ongoing supervision and support of care. Right now, the easiest way to get daily nursing and social work care is by hospitalization.


Creating a “care and support plan” and putting in place a system for providing care when acute illness strikes, the acute illnesses that are predictable complications of frailty,  really shouldn’t be so difficult. The Brits are going to do it. We should, too.

December 28, 2014

The Role of the Rules

In a ringing endorsement of autonomy, the preamble to the regulations governing Assisted Living  (AL) in the Commonwealth of Massachusetts refers to AL facilities as “an important part of the spectrum of living alternatives for the elderly” that “should be operated and regulated as residential environments with supportive services and not as medical or nursing facilities.”  Recognizing that the people moving into assisted living facilities do so because they have some sort of “physical or cognitive impairment,” the document goes on to say that the facility “should support the goal of aging in place through services, available either directly or through contract or agreement.” These services, it is hoped, will “compensate” for the individual’s deficits, “while maximizing his or her dignity and independence.” Great language. But how does this square with the proposed modification of the regulations that would evict residents if they require 90 consecutive days of “skilled nursing services,” that is a visiting nurse or a physical therapist or hospice care. Aren’t these services exactly what is entailed by contracting for the assistance necessary to stay in the facility, despite mental or physical difficulties?

It doesn’t (my first question) and they are (my second). The new regulations would go a long way towards undermining what makes assisted living attractive. Presumably the state’s actions are intended to protect its citizens. And the state has the right to promote the health and wellbeing of the populace: since the early 1800s, the Supreme Court has upheld the right of the states to pass laws (and to promulgate regulations allowing for implementation of those laws) that further the  “health, peace, morals, education and good order of the people.” But just who is it that the regulations would protect? Is it the owners and operators of the assisted living facilities, by enabling them to evict any residents whom they deem too sick to stay, and thereby assuring that anyone who might sue for neglect would not be living in the facility in the first place? Or is it the most independent residents of assisted living, some of whom do not like having impaired elders in their midst, people who remind them of their own potential frailty? Surely it is not the residents who require considerable help and who are getting just what they need by contracting with agencies such as the visiting nurse association or a hospice.

In fact, the regulations will not protect the vulnerable—if they are enforceable, which they may not be as people can simply cancel their services for a few days every three months and may then be technically following the rules. The vulnerable are those who need more help than the assisted living facility provides directly and who haven’t made arrangements with a visiting nurse association or a hospice or some other regulated organization. Under the new rules, they will be discouraged from getting the help they need because it would jeopardize their right to stay in their home, the assisted living. If they seek any outside help at all, it will need to be from an unregulated organization, not one that provides care that is officially recognized as “skilled.”

So what is the solution? What should the state do to fulfill its expressed desire to promote the autonomy of older individuals with cognitive and/or physical impairments, allowing them to live in the “least restrictive” environment? Two steps would go far to achieving this goal.

First, rather than evicting their neediest residents, assisted living facilities should provide a comprehensive assessment of their tenants and help residents and their families come up with a viable plan for addressing the needs identified by that assessment. The assisted living doesn’t have to actually offer the needed services; it simply has to describe them. Residents who prefer not to avail themselves of the help they could sign a “negotiated risk contract” that acknowledges they are putting themselves in jeopardy.

Second, nursing homes need to be modified so that the emphasis is more on “home” and less on “nursing.” Only if older people have an acceptable alternative, one that offers the help they need without being a “total institution” that dictates their every move, will they no longer be desperate to stay in assisted living, even when they can only do so by supplementing their care with large amounts of outside help. The Pioneer approach to nursing home care, with its resident-centered philosophy, and the Green House model, with its small, non-institutional character, are attempts to radically transform nursing homes. But as I have argued in earlier blogs, many if not most facilities that aspire to “culture change” fail. They no longer leave residents lined up in a long hall in their wheelchairs—but instead, they leave them seated at the dining room table, staring into space, essentially belted in by the table. Explaining why the medicalization of nursing homes leads, almost inevitably, to just the kind of place that old people are trying to stay away from, will require more discussion at another time. Suffice it to say for the moment that the regulations governing nursing facilities are a large part of the reason that nursing homes today are still more like hospitals than they are like residences.


States can amend the regulations for assisted living facilities to better protect their neediest citizens. But that will mean helping residents get the assistance they need, not booting them out if they are using outside services. And it will mean fostering a true continuum of care in which nursing homes are simply assisted living facilities that supply the assistance themselves rather than expecting residents to contract independently for services.