Chemotalk Newsletter, Vol. 72: April 1, 2014
Hi, Everyone. Hope everyone feels as good a few days after their 75th Big One! Now for important things:
THE TREATMENT THAT RESPECTS PAIN
Contrary to a common misconception, palliative care isn't meant just for the dying.
By Jane E. Brody
Anyone faced with a life-threatening or chronic illness should be as lucky as Catherine, a 27-year-old waitress in New York.
Dr. Diane E. Meier, a palliative care specialist at Mount Sinai Medical Center, recalled her young patient's story in an article published in 2011 in The Journal of Clinical Oncology. Catherine, who was not further identified to preserve her privacy, was diagnosed with LEUKEMIA and suffered intractable bone pain, unrelieved by acetaminophen with codeine.
Still, she was unwilling to take opioids to relieve the pain because a family member had had problems with substance abuse. Dr. Meier and her team were called in to help, and their counsel allayed the young woman's fears of addiction and helped her understand that PAIN RELIEF WAS AN IMPORTANT PART OF HER TREATMENT. Catherine recovered, eventually attending graduate school and marrying. Her story, Dr. Meier wrote, told us something about the importance of palliative care. Her doctors were focused on her CANCER, but it was her suffering that "posed significant -- but remediable -- burdens on the patient."
Palliative care physicians like Dr. Meier focus on the relief of that suffering and not just for the dying. All patients deserve palliative care whether they are terminally ill, expected to recover fully, or facing years with debilitating symptoms of a chronic or progressive disease.
"The vast majority of patients who need palliative care are not dying", Dr. Meier, the director of the Center to Advance Palliative Care, said in an interview. "They are debilitated by things like arthritic pain that affect the quality of their lives and ability to function, and can eventually impact their survival."
If I had received palliative care following my double knee replacement, I might have avoided the serious pain that left me depressed and unable to resume a normal life for many more weeks than it should have. If my aunt had access to palliative care when she was placed in intensive care, she might not have become delirious and suffered an abrupt progression of dementia from which she never recovered.
The benefits of palliative care include fewer trips to the emergency room or hospital, lower medical costs, improved ability to function and enjoy life and, several studies have shown, prolonged survival for the terminally ill. These virtues far outweigh what it would cost to make this service universally available in hospitals, nursing homes, clinics, assisted living facilities and patients' homes.
But there are two major stumbling blocks, one of which patients and their families can help to eliminate. First is the widespread misunderstanding of palliative care by the public and the medical profession: Both wrongly equate it with hospice and end-of-life care.
"Hospice is a form of palliative care for people who are dying, but palliative care is not about dying," Dr. Meier said. "It's about living as well as you can for as long as you can."
A 2011 survey of 800 adults, commissioned by the center, found that 70% were "not at all knowledgeable" about palliative care. But once informed, a similar percentage believed that it was "very important for patients with serious illness to have access to palliative care at all hospitals."
The second obstacle to making palliative care more available is a shortage of doctors trained in it. It was first declared a medical specialty in 2007, but even today few medical students and residents receive instruction in this field despite its importance to the quality and cost of medical care. Other specialists too seldom request this service for patients who need it, researchers say. Many still believe palliative care is appropriate only when nothing more can be done to treat a patient's disease and prolong life. But unlike hospice, palliative care can and should be delivered while patients continue treatment for their diseases.
Under the Affordable Care Act, hospitals now face huge penalties when Medicare patients are repeatedly readmitted for chronic or recurrent conditions. This is expected to boost the use of palliative care which has been shown to reduce patients' dependence on emergency rooms and need for hospitalization. Palliative care is also available in a growing number of children's hospitals.
Among older people, 90% of visits to emergency rooms are for distressing symptoms like pain, shortness of breath and fatigue that can accompany chronic illness Dr Meier said. "These symptoms can and should be prevented or managed by palliative care specialists in a patient's own home," she said. "Patients turn to hospitals for care because they have no alternative."
Palliative care is not limited to direct medical care. It includes help in accessing community services, obtaining affordable health care and living assistance at home, ensuring a safe environment in the home, and determining what is most important to a patient's quality of life and how those goals might be achieved.
A typical palliative care team includes doctors, nurses and a social worker to help patients and their families navigate complex needs both in a medical setting and at home. The goal, whenever possible, is to help patients live in their own residences for as long as possible and enjoy a reasonable quality of life.
Dr. Meier urges patients and families to check whether there is a palliative care team at the hospital they would normally use. Check www.getpalliativecare.org for nearby hospitals with a palliative care team.
Most American hospitals with more than 50 beds offer palliative care but often "patients and families must be proactive to get the services they need," Dr Meier said. Palliative care services in both medical settings and patients' homes are covered by private insurance, Medicare and Medicaid, depending on the patient's reason for seeing a doctor.
* * *
This is for anyone who believes that racism in America is a thing of the past:
WHY BLACK WOMEN DIE OF CANCER
By Harold P. Freeman
Since the early 1970s, studies have shown that black Americans have a higher death rate from CANCER than any other racial or ethnic group. This is especially true when it comes to BREAST CANCER. A study published in the journal Cancer Epidemiology found that, in a survey of 41 of America's largest cities, black women with breast cancer are on average 40% more likely to die than their white counterparts.
The principal reason for this disparity is the disconnect between the nation's discovery and delivery enterprises -- between what we know and what we do about sick Americans.
In 1967, I started working in Harlem as a cancer surgeon. At the time, and through the 1980s, Harlem was a community of poor black people, and the death rate from cancer there was among the highest in the country. At Harlem Hospital, the five-year survival rate for breast cancer was a dismal 39%, compared with roughly 75% for Americans over all.
I imagined that I could "cut cancer out of Harlem." But I soon learned that the disease would not yield to a surgeon's knife. Why? Because the patients were coming in too late. I examined many black women who were visiting the clinic for the first time and who already had incurable breast cancer, sometimes with ulcerated and bleeding breast masses.
I began to see that cancer's invasiveness was deeply rooted in human conditions, and began asking questions such as: What does it mean to be black in America? What does it mean to be poor? And what does it mean to be black and poor and at the same time to have cancer? Saving lives under these conditions has dominated my career ever since.
The reasons for black and white differences in breast cancer outcomes are complex. Although the incidence of the disease is higher among white women, black women are more likely to die from it. Young black women tend to develop a particularly aggressive form, which no doubt contributes to the disparity. But for many years, the dominant cause of higher mortality has been late-stage disease at the time of initial treatment, in part as a result of black women being less likely to undergo mammography.
However, this gap has been closed. The Centers for Disease Control and Prevention reports that the rate of mammography is now the same in black and white women. What remains different is what happens after the mammogram: Black women experience significant delays in diagnosis and treatment. According to the C.D.C., even when they have similar insurance coverage 20% of black women with an abnormal mammogram wait more than 60 days for a diagnosis, compared with 12% of white women. And 31% of black women wait 30 days to begin treatment, compared with 18% of white women.
The institute of Medicine reported in 2003 that black Americans with health insurance similar to that of white Americans are, at times, less likely to be recommended by physicians to receive curative cancer care. I don't think this is because doctors are racist, but rather that they make assumptions about race that can be harmful. For example, a specialist treating a poor black woman may doubt that she will comply with a complex treatment and recommend a simpler, but noncurative, therapy instead.
The good news is that studies show that black and white women who receive the same breast cancer treatment at the same stage of the disease are equally likely to survive. If we can eliminate barriers to early diagnosis and quality treatment in black women, we can close the racial mortality gap.
In 1971, Richard M. Nixon declared a "war on cancer" and signed the National Cancer Act, resulting in well-justified increases in the nation's investment in cancer research. But the act said nothing about the other crucial aspect of saving lives; the delivery of care. As a result, not all Americans have benefitted equally from scientific and medical progress.
Similarly, in recent years, the debate has focused on screening, with much less concern about what happens after. We should be expanding access to mammograms and colonoscopies, and debating the frequency and ages at which they are offered. But today, too many people are reluctant to undergo screening at all, because they fear they cannot afford treatment if they are found to have cancer. Screening is much less effective if we cannot ensure access to timely care.
At Harlem Hospital, we provided free breast cancer screening beginning in 1979. But screening alone was not enough. Patients -- who not only often lacked health insurance, but also struggled with a limited education and distrust of doctors -- needed help making their way through the medical system. So in 1990, we pioneered the patient navigation program, which provided one-on-one support to patients with abnormal findings. The navigators helped patients obtain insurance, made sure they understood what was recommended, guided them through appointments and allayed their fears. Applying the two interventions in Harlem -- breast cancer screening and patient navigation -- raised the five-year breast cancer survival rate from 39% to 70% in 2000.
In 2005, President George W Bush signed the Patient Navigator Outreach and Chronic Disease Prevention Act, based on the Harlem model, which provided funds for these programs. In 2012, the American College of Surgeons made patient navigations a standard of care, required for cancer centers seeking accreditation beginning next year. And the Affordable Care Act required that patient navigators be used to help Americans obtain insurance under the exchanges.
The health care reform act is an excellent start toward providing universal health insurance. But access to insurance does not assure access to quality health care, especially for the poor and less educated. No patient with cancer should go untreated or experience a delay in treatment that diminishes survival. People should not die from cancer because they are poor or black. This is more than a medical and scientific issue. This is a moral issue.
* * *
This question that many of us ask, has a lot less to do with age than with our perception of our state of health:
HOW LONG HAVE I GOT LEFT?
By Paul Kalanithi
As soon as the CT scan was done, I began reviewing the images. The diagnosis was immediate: Masses matting the lungs and deforming the spine. CANCER. In my neurosurgical training, I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. I'd scribble in the chart 'Widely metastatic disease -- no role for surgery", and move on. But this scan was different: It was my own.
I have sat with countless patients and families to discuss grim prognoses; It's one of the most important jobs physicians have. It's easier when the patient is 94, in the last stages of dementia and has a severe brain bleed. For young people like me -- I am 36 -- given a diagnosis of cancer, there aren't many words. My standard pieces include "it's a marathon, not a sprint, so get your daily rest" and "illness can drive a family apart or bring it together -- be aware of each other's needs and find extra support."
I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate, "days to a few weeks," "weeks to a few months,", "months to a few years," "a few years to a decade or more." We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn't possess a nuanced understanding of statistics.
People react differently to hearing "Procedure X has a 7-% chance of survival" and "Procedure Y has a 30% chance of death." Phrased that way, people flock to Procedure X, even though the numbers are the same. When a close friend developed PANCREATIC CANCER, I became the medical maven to a group of people who were sophisticated statisticians. I still dissuaded them from looking up the statistics, saying five-year survival curves are at least five years out of date. Somehow I felt that the numbers alone were too dry, or that a physician's daily experience with illness was needed for context. Mostly, I felt that impulse: Keep a measure of hope.
These survival curves, called Kaplan-Meer curves, are one way we measure progress in cancer treatment, plotting the number of patients surviving over time. For some diseases, the line looks like an airplane gently beginning its descent; for others, like a dive bomber. Physicians think a lot about these curves, their shape and what they mean. In BRAIN-CANCER research, for example, while the numbers for average survival time haven't changed much, there's an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you cant tell an individual patient where she is on the curve. It's impossible, irresponsible even, to be more precise than you can be accurate.
One would think, then, that when my oncologist sat by my bedside to meet me, I would not immediately demand information on survival statistics. But now that I had traversed the line from doctor to patient, I had the same yearning for numbers all patients ask for. I hoped she would see me as someone who both understood statistics and the medical reality of illness, that she would give me certainty, the straight dope. I could take it. She flatly refused. "No. Absolutely not." She knew very well I could -- and did -- look up all the research on the topic. But LUNG CANCER wasn't my specialty, and she was a world expert. At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.
Now, instead of wondering why some patients persist in asking statistics questions, I began to wonder why physicians obfuscate when they have so much knowledge and experience. Initially when I saw my CT scan, I figured I had only a few months to live. The scan looked bad. I looked bad. I'd lost 30 pounds, developed excruciating back pain and felt more fatigued every day. My tests revealed severely low protein levels and low blood counts consistent with body overwhelmed, failing in its basic drive to sustain itself.
For a few months, I'd suspected I had cancer. I had seen a lot of young patients with cancer. So I wasn't taken aback. In fact, there was a certain relief. The next steps were clear: Prepare to die. Cry. Tell my wife that she should remarry, and refinance the mortgage. Write overdue letters to dear friends. Yes, there were lots of things I had meant to do in life, but sometimes this happens: Nothing could be more obvious when your day's work includes treating head trauma and brain cancer.
But on my first visit with my oncologist, she mentioned my going back to work someday. Wasn't I a ghost? No. But then how long did I have? Silence.
Of course, she could not stop my intense reading. Pouring over studies, I kept trying to find the one that would tell me when my number would be up. The large general studies said that between 70 and 805 of lung cancer patients would die within two years. They did not allow for much hope. But then again, most of those patients were older and heavy smokers. Where was the study of nonsmoking 36-year-old neurosurgeons? Maybe my youth and health mattered? Or maybe my disease was found so late, had spread so far, and I was already so far gone that I was worse off than those 65-year-old smokers.
Many friends and family members provided anecdotes along the lines of my-friend's-friend's-mom's-friend or my-uncle's-barber's-son's-tennis-partner has this same kind of lung cancer and has been living for 10 years. Initially, I wondered if all the stories referred to the same person, connected through the proverbial six degrees. I disregarded them as wishful thinking, baseless delusion. Eventually, though, enough of those stories seeped in through the cracks of my studied realism.
And then my health began to improve, thanks to a pill that targets a specific genetic mutation tied to my cancer. I began to walk without a cane and say things like, "Well, it's pretty unlikely that I'll be lucky enough to live for a decade, but it's possible." A tiny drop of hope.
In a way, though, the certainty of death was easier than this uncertain life. Didn't those in purgatory prefer to go to hell, and just be done with it? Was I supposed to be making funeral arrangements? Devoting myself to my wife, my parents, my brothers, my friends, my adorable niece? Writing the book I had always wanted to write? Or was I supposed to go back to negotiating my multiyear job offers?
The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I'd just spend time with my family. Tell me one year, I'd have a plan (write that book). Give me 10 years, I'd get back to treating diseases. The pedestrian truth that you live one day at a time didn't help: What was I supposed to do with that day? My oncologist would say only: "I can't tell you a time. You've got to find what matters most to you."
I began to realize that coming face to face with my own mortality, in a sense, and changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn't know when. But now I knew it acutely. The problem wasn't really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
The reason doctors don't give patients specific prognoses is not merely because they cannot. Certainly, if a patient's expectations are way out of the bounds of probability -- someone expecting to live to 130, or someone thinking his benign skin spots are signs of impending death -- doctors are entrusted to bring that person's expectations into the realm of reasonable possibility.
But the range of what is reasonably possible is just so wide. Based on today's therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available, in two or three years, that range may be completely different. Faced with morality, scientific knowledge ca provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer.
What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.
I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett, a writer I've not even read that well, learned long ago as an undergraduate, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: "I can't go on. I'll go on." And then, at some point, I was through.
I am now almost exactly eight months from my diagnosis. My strength has recovered substantially. In treatment the cancer is retreating. I have gradually returned to work. I'm knocking the dust off scientific manuscripts. I'm writing more, seeing more, feeling more. Every morning at 5:30, as the alarm clock goes off, and my dead body awakes, my wife asleep next to me, I think again to myself: "I can't go on." And a minute later, I am in my scrubs, heading to the operating room, alive: "I'll go on."
* * *
I can relate. See you next month.
* * *
And if you have any thoughts of how this newsletter could be improved, please email me directly, at Elaine@elainejesmer.com.