Finding Kindness and Introspection in ‘Half Empty,’ a Book of Essays by David Rakoff

Regrettably, I found the essayist David Rakoff by his obit. It happened last August. The Canadian-born New Yorker died at age 47 of a malignancy. In a reversal of a life’s expectancy’s, the writer’s death was announced by his mother, according to the New York Times.

I was moved to read one of Rakoff’s books, Half Empty, and in that discovered a man who, I like to think, might have been a friend had I known him. It’s possible our lives did cross, perhaps in a hospital ward when I was a resident or oncology fellow, or in Central Park, or through a mutual friend.

The last essay, “Another Shoe,” is my favorite. Rakoff learns he has a sarcoma, another cancer, near his shoulder – a likely consequence of the radiation he received for Hodgkin’s in 1987. He runs through mental and physical calisthenics to prepare for a possible amputation of his arm. He half-blames himself for choosing the radiation years before: “I am angry that I ever got the radiation for my Hodgkin’s back in 1987, although if it’s anybody’s fault, it is mine,” he wrote. “It had been presented to me as an easier option than chemotherapy.” He reflects on his decision as cowardly and notes, also, that it didn’t work.

He wound up getting chemo anyway, a combination – as any oncologist might tell you, but not in the book –that’s a recipe for a later tumor.  So one take-away from this sort-of funny book, among many, is that how doctors explain treatments and options to patients – the words we use – matter enormously, not just in clinical outcomes, but in how people with cancer feel about the decisions they’ve made, years later.

The other part on words, which I love, is a section on the kinds of things ordinary people – friends, neighbors, relatives, teachers…tell people who have cancer. It appears on pages 216-217 of the paperback edition:

“But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, ‘You fucking asshole, I can’t wait until you die of this,’ people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?

I look forward to reading more of Rakoff’s essays, and appreciate that he’s given me so much to think about, on living now.

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Can Anyone Be a Patient Advocate?

The first time I met an official patient advocate, it was the spring of 1991. I was a first-year fellow, learning by treating patients with blood disorders and all kinds of cancers.

A young gay man with low platelets came to see me in consultation. It was his first visit to the clinic. As I walked by the desk on the way to greet him, the receptionist mentioned that the patient was accompanied by an advocate. “He’s from an organization,” she whispered. “Just thought you’d want to know.”

“OK,” I agreed, not sure what to expect.

My patient was a frail, tired-appearing and polite young man in his 20s. He lived in the West Village and was no longer employed, suffering from AIDS. The man who accompanied him was also thin, perhaps 30 years old – like me, then – and what you might call assertive. The advocate explained that he’d stay with the patient during the evaluation and discussion of recommendations. He added that he’d seen a file on me at ACT UP, and that I was “all right.”

We walked into one of the small consultation rooms. I took detailed notes on the patient’s medical history – too long for his age, approximately 23 years. His body was frail and bruised. A bouquet of tiny red spots lined his palate. Similar marks, a bit darker, coated his legs over and above both ankles. We called those – a manifestation of low platelets – petechiae. I reviewed the patient’s prior blood tests, and drew a sample that I might examine his cells under the microscope.  Later on, the patient, advocate and I spoke about his likely diagnosis and treatment options.

This encounter – my first with an advocate – happened approximately 22 years ago. I don’t know the long-term outcome of the patient’s story, but it’s likely he died of AIDS within a year or two of that encounter. He’d already had several serious infections, and his T cells were quite low as I recall. The advocate may have died, too, but I was not privy to his medical history. All I learned about the advocate – over the course of a few visits, and never by my asking him questions – was that he was involved with ACT-UP, that he was extremely familiar with AIDS manifestations, and that he cared that my patient have access to treatment by a considerate doctor.

So who’s a patient advocate, today?

I’ve been wondering about this, in part because I’d like to serve as a patient advocate on a committee and help decide on priorities, meeting agendas and funding for, say, breast cancer research. Some agencies consider that someone like me – a physician who’s had significant illness – can’t serve as a patient advocate at a table with limited chairs, because I have a medical degree. The problem is, I’m on “the other side,” or something along those lines.

"The Sick Woman," aka "The Doctor and His Patient," by Jan Steen, 17th Century, Rijksmuseum Amsterdam (WikiCommons)

“The Doctor and His Patient,” by Jan Steen

It happens that some physicians, including your author at Medical Lessons, are among the fiercest proponents of patients’ rights I know. I support patients’ unrestricted access to information about medicine and new research, to reasonable treatments matching their preferences and values, and to respect from health care providers. At the same time, I’ve seen doctors who, it seems, promote or outright advertise themselves as “patient advocates” on blogs, websites, in books and elsewhere. Suspicious, yes, but not necessarily untrue –

So here’s the question for the crowd: Can a good doctor, or a nurse, or a physical therapist, or any other person employed by the health care system, serve as a patient advocate?

I’m sure I served an advocate for my patients, years ago, while I was practicing, just as I might now, for people with various illnesses. Tell me I’m wrong.

Comments please! How, exactly, might we define a patient advocate? And, while we’re at it – who’s a patient navigator, and what’s the difference?

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Breakfast Will Never Be the Same Again

#Ordinary, heart-wrenching: “I remember one time when my mom asked me to get her a bowl of Cheerios, and we ate them together” – http://bit.ly/OsFfHO

I couldn’t fit the hash-tagged words above, with the link, into 140 characters. So here’s a post for the weekend and school year ahead:

Some of the breast cancer bloggers have been posting lately on the ordinary things that contribute to our well-being. The idea is one I’ve considered previously and attribute in part to Mom-blogger and post-lymphoma person Jen Singer, who once wrote about the immeasurable value of doing laundry, or something like that.

The point is – it’s not all about the vacations in Thailand, birthdays and rock concerts. Or opera, if you’re into that. Rather, it’s the everyday stuff that fills our lives.

Before I get too Hallmarky…

This morning Lisa Fields, aka @PracticalWisdom, sent a Tweet that caught my interest. Nominally, it was on the “geography of verbs” as considered in a commencement address. I clicked. The Guilford College speaker, author Patti Digh, recalled a young family that appeared a few years back on the Oprah show.

The mom was dying, with cancer. Digh recounts:

After she died, Oprah welcomed the family back to her show and asked the kids a question: “What is one of your favorite memories of your mom?” I’m sure Oprah imagined they would talk about swimming with dolphins or one of their big adventures with her, but the little girl said very quietly, “I remember one time when my mom asked me to get her a bowl of Cheerios, and we ate them together.”

Bingo. It’s the little stuff, as Digh explains. What the child – or an adult “survivor” in the sense of one who outlives the person and remembers selectively – values may or may not match what matters most to the patient.

This is the opposite, or at least a twist in perspective, relative to what the bloggers are talking about. And it’s the same. A logical puzzle, maybe, for life.

#EveryDayMatters.

Enjoy the weekend, all!

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Noting the Death of Christopher Hitchens from Esophageal Cancer

The author is saddened to learn that Christopher Hitchens died late yesterday evening at the age of 62, roughly a year and a half after receiving a diagnosis of esophageal cancer. He was a prolific and articulate man; I respected him for his words.

His essays on the language and cancer might be of particular interest to some readers of this blog.

The NCI reports there are some 17,000 new cases of esophageal cancer in North American each year; it’s not a common tumor, and most cases arise in men. The annual number of deaths from esophageal cancer approaches 15,000 in the U.S. These numbers are telling: it’s not an easy disease to have, or to treat.

——

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‘Cutting For Stone,’ and Considering the Experience of Practicing Medicine

A short note on Cutting for Stone, a novel I’ve just read by Dr. Abraham Verghese. He’s an expert clinician and professor at Stanford. The author uses rich language to detail aspects of Ethiopian history, medicine and quirks of human nature. The book’s a bit long but a page-turner, like some lives, taking a strange and sometimes unexpected course.

For today I thought I’d mention one passage that haunts me. It appears early on, when the protagonist, a man in middle age reflects on his life and why he became a physician:

My intent wasn’t to save the world as much as to heal myself. Few doctors will admit this, certainly not young ones, but subconsciously, in entering the profession, we must believe that ministering to others will heal our woundedness. And it can. But it can also deepen the wound.

The point is, a physician may be immersed in his work in a manner that he is, in effect, “addicted” to practicing medicine – a term Verghese uses later on in the book. There’s an emotional boost, or relief, some doctors glean by their daily tasks. An example he gives is a surgeon who feels better upon seeing his patient, who’d been sick, recovering nicely after an operation. This applies in other fields, including oncology.

I get this. It’s an under-discussed aspect of being a doctor, articulated well in some characters’ pathology and passion.

More on this, later, elsewhere –

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What Is a Cancer Metastasis?

A metastasis refers to a lump of cancer cells that’s physically separated from the original tumor. A metastasis can be local, like when colon cancer spreads to a nearby lymph node in the gut, or distant, as when lung cancer cells generate tumors in the adrenal gland, liver, bone or brain.

Sometimes metastases cause serious damage in the organs where they’ve settled. For instance, brain “mets” can result in impaired thinking, personality changes, blindness or seizures. Liver metastases, if large enough, can result in hepatic (liver) failure. Bone mets can lead to anemia and other blood cell deficiencies if the marrow becomes filled with malignant cells instead of normal ones.

A common source of confusion is that when cancer moves from one body part to another, it’s still referred to by its site of origin.  For example, if breast cancer spreads to the liver or bone, it is still called breast cancer and most often treated as such. In general it’s the type of malignant cell, rather than the affected organ, that guides therapy.

Notes on usage: The plural is “metastases.” When someone has metastatic disease, that means their cancer has spread from the primary site to another. Oncologists don’t usually apply these terms to leukemia or lymphoma.

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The Trouble With Placebos

The latest NEJM features a big story about a small trial, with only 39 patients in the end, on the potential for placebos to relieve patients’ experience of symptoms. This follows other recent reports on the subjective effectiveness of pseudo-pharmacology.

My point for today is that placebos are problematic in health care with few exceptions. First, in clinical trials, patients sometimes agree to take what might be a placebo so that researchers can measure effects of a drug, by comparison. A second instance is, possibly, when doctors treat children. Even then, I’m not sure it’s wise to “train” kids to take a pill and expect to feel better.

The relationship of an adult patient with a physician involves, or should involve, trust and mutual respect. A person cannot possibly give informed consent for a treatment he or she doesn’t know about. So if the doctor’s giving a placebo to the patient, and making the decision for the patient because it might help, that diminishes the patient’s autonomy, or self-determination. In simpler terms, it’s condescending.

You might consider the hypothesis that there’s nothing wrong with something if it makes you, or someone else, feel better. But that’s kind of like saying the ends justify the means.

A placebo is, by definition, manipulative. I wouldn’t want any doctor to treat me that way.

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Vicious Verbiage Targets Cancer Patients’ Voices, at Cardiobrief

A journalist who covers medical matters of the heart grabbed my attention on the Fourth of July. In The Voice of the Patient: Time To Bring Out the Muzzle?, Larry Husten at Forbes’ Cardiobrief blog, insinuates that the women who spoke at the FDA’s Avastin hearings are simpletons.

In his short strip, Husten skips the possibility that the testifying patients might understand science. He dismisses their familiarity with Avastin. He ignores their potential informational value as bona fide outliers, and jumps to this killer conclusion:

…When reporters cater to these type of people they not only foster fuzzy thinking, they encourage a mob mentality that tears down any semblance of rationality or any possibility of intelligent discourse.

Medicine, of course, is all about the patient. But that doesn’t mean that every patient is right, or deserves a public voice, or that uncritical journalists should assist them in metastasizing their views.

This is rare language in a business journal:

Phrases like “these type of people” and “mob mentality” typically reflect fear of others, based in prejudice – the opposite of reason and science, to which the author aspires. Likening patients speaking out to “metastasizing,” a term normally applied to the lethal movement of cancerous cells, reveals a disturbed view of people with illness.

The Forbes Headline, in which the author and editor, or both, contemplate using a “muzzle” to silence patients, does not approach the norm in health care journalism, or even opinion-writing.

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Don Berwick, Head of CMS, on the Value of Patient-Centered Care

A few weeks ago I had the opportunity to hear Dr. Don Berwick speak at the annual meeting of the Association of Health Care Journalists.

Berwick now heads the Centers for Medicare & Medicaid Services. When he spoke in April, on transparency and how we might simultaneously cut costs and improve care, I thought his talk was pretty good. This morning, through Twitter, I came upon a short clip from a Berlin conference in 2009. Here, he tackles the meaning of patient-centered care. It’s near-perfect:

Don Berwick, on YouTube: What Patient-Centered Care Really Means

My favorite lines:

…The errors and unreliability of health care are not the main reason that I fear that inevitable day in which I will become a patient…I can use my own wit to stand guard against them…

<rather>

…What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of myself in a hospital gown, homogenized, anonymous, powerless, no longer myself. It is the sound of young nurse calling me “Donald” which is a name I never use, ‘It’s “Don.’…

It is the voice of the doctor saying ‘we think,’ instead of ‘I think,’ and thereby placing that small verbal wedge, the pronoun ‘we,’ between himself as a person and myself as a person…

Bravo!

Why I like this clip so much is that Berwick gets the nuanced language of medicine in a way few doctors, in my experience, do. He’s not so much afraid of data and making decisions or even errors, which are in theory surmountable problems, through better information and education, and despite everything may not lead to a “cure” or even a person’s survival, per se. He most fears being perceived as an object, without respect for his concerns and preferences.

That is my greatest fear, too.

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Defining a Cluster of Differentiation, or CD

One of the goals of this blog is to introduce readers to some of the language of medicine. As much as jargon is sometimes unnecessary, sometimes the specificity and detail in medical terms aids precision.

So what is a cluster of differentiation, or CD?

In medical practice, the two-letter acronym specifies a molecule, or antigen, usually on a cell’s surface. In 1982, an international group of immunologists got together for the First International Workshop on Human Leukocyte Differentiation Antigens. The initial focus was on leukocyte (white blood cell) molecules. The goal was to agree on definitions of receptors and other complex proteins to which monoclonal antibodies bind, so that scientists could communicate more effectively.

A few examples of CDs about which you might be curious:

CD1 – the first-named CD; this complex glycoprotein is expressed in immature T cells, some B cells and other, specialized immune cells in the skin; there are several variants (CD1a, -b, -c…) encoded by genes on human chromosome 1.

CD4 – a molecule on a mature “helper” T cell surface; T lymphocytes with CD4 diminish in people with untreated HIV disease.

CD20 – a molecule at the surface of immature B lymphocytes that binds Rituxan, an antibody used to treat some forms of lymphoma, leukemia and immune disorders.

 

In this schematic, an antibody recognizes a specific molecule, or cluster of differentiation, at a cell surface.

The CDs were named (i.e. numbered) not necessarily by the order of discovery, but by the order of their being deemed as bona fide CDs by HLA Workshop participants. There’s a pretty good, albeit technical, definition in FEBS Letters, from 2009:

Cluster of differentiation (CD) antigens are defined when a surface molecule found on some members of a standard panel of human cells reacts with at least one novel antibody, and there is good accompanying molecular data.

Perhaps the best way to think about CDs is that they’re unique structures, usually at a cell’s surface, to which specific antibodies bind. By knowing the CDs, and by examining which antibodies bind to cells in a patient’s tumor specimen, pathologists can distinguish among cancer types. Another use is in the clinic, when oncologists give an antibody, like Campath – which binds CD52, the responsiveness might depend on whether the malignant cells bear the CD target.

Still, I haven’t come across an official (such as NIH), open-source and complete database for all the CDs. Most can be found at the Human Cell Differentiation Molecules website, and information gleaned through PubMed using the MeSH browser or a straight literature search.

Wikipedia is disappointing on this topic; the list thins out as the CD numbers go higher, and the external references are few. To my astonishment, I found a related page on Facebook. Neither makes the grade.

Where should patients get information about these kinds of things? Or doctors, for that matter?

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