So, it was close to noon by the time we made it to Bed One, where we found a toddler named Donald Merrill. Donald Merrill was, for the moment, my only patient. It was my turn to lead the team. I was fortunate to have inherited a light load of patients, but that would soon change. I was on call that day and night and any kids admitted in the next eighteen hours would be primarily my responsibility. For now, however, Donald was it. I was preoccupied with the morning’s events, namely the disturbing visage of the girl in Bed Seven and Karl’s antics, and so when we arrived at Donald’s bedside I made a rookie mistake.
“Donald Merrill is a three-year-old male admitted from Sutter Delta,” I began “for pneumonia with hypoxia. The patient was brought in by Life Flight with an oxygen sat of seventy percent, but with otherwise stable vital signs. The patient initially presented to Sutter Delta Medical Center with two days of fever and congestion and was found to have a room air sat of ninety-two and an interstitial infiltrate on chest X-ray. He received one gram of Rocephin and was transferred to UC Davis. Overnight, Donald has been on non-invasive ventilatory support with Bi-level positive airway pressure, BIPAP.”
Dr. Connor interrupted me. “Wait, wait.” He gesticulated sideways, as if he might break into the electric slide. “Before you continue, please tell us what Donald’s underlying condition is.” I knew the answer and was about to respond, but someone else beat me to it.
“Ondine’s curse, also known as CCHS, Congenital Central Hypoventilatory Syndrome.” It was Karl. He just couldn’t help himself. “It comes from Greek mythology.”
Dr. Connor coughed loudly, but Karl continued. “The name comes from the tale of the Ondine, a beautiful water nymph. Ondine was wronged by a young lover and in revenge she cursed him. The curse…” Karl appeared ready to launch into a lengthy explanation. Dr. Connor appeared ready to burst a temporal vein.
“Doctor Krumholz,” Dr. Connor cut him off, “let’s allow Doctor Ballard to educate us about Congenital Central Hypoventilation Syndrome.” Karl nodded and flipped his hair again. Dr. Connor grunted, “Doctor Ballard?”
I told the team what I knew about CCHS, which wasn’t much. “CCHS is a rare condition, a genetic disorder,” I stammered, “one that affects automatic respiration.” Later, I would research the condition and its associated mythology. Karl was right, at least mostly right. Ondine was a water nymph, born in 18th-century German, rather than Greek, mythology. She was beautiful, enchanting, and extremely leery of men. Ondine, like other nymphs, could lose her everlasting life under only one circumstance: if she fell in love with a mortal man and bore his children. Despite her caution, Ondine fell in love with handsome young Palemon, who broke off his engagement to a noblewoman to marry her. On their wedding day, Palemon vowed, “My every waking breath shall be my pledge of love and faithfulness to you.” Years later, lovely Ondine bore Palemon a child, a son, and in doing so forfeited her immortality. Immediately, she aged and her transcendent beauty faded. Palemon’s eye wandered and on a fateful afternoon, Ondine heard the familiar sound of her lover’s snore in the stable on their estate. Entering, she found him entangled in a post-coital embrace with his former fiancée. Enraged, Ondine kicked Palemon and uttered a magic curse: “You pledged faithfulness to me with your every waking breath, and I accepted that pledge. So be it. For as long as you are awake, you shall breathe. But should you ever fall into sleep, that breath will desert you.” And so it was that Palemon’s next sleep, preceded by complete exhaustion, was his last. In the 1960s surgeons discovered a condition, following spine surgery, in which patients lost their spontaneous drive to breathe after falling asleep, and it was named after the mythical curse of Ondine. But at the moment, as I boiled with disappointment at Karl’s interruption, I didn’t know any of that.
Since its discovery, a genetic form of Ondine’s Curse had been found – linked in over 90% of cases to mutations to the PHOX2B gene and occurring in one out of 200,000 live births. Most victims died quickly, usually as infants. Donald Merrill was one of only 200 known living patients with CCHS.
Donald had survived to age three for a couple reasons. First, his mother also had CCHS so his family knew, even before he was born, that Donald was at risk. This allowed Donald’s physicians to make the diagnosis before it had fatal ramifications. Secondly, like his mom, Donald had a relatively mild form of the disease. He needed constant respiratory support when sleeping, otherwise his breathing became too shallow. But unlike some (approximately one out of every ten) with Ondine’s Curse, Donald did not need any when he was awake. None, that is, unless his lungs were compromised in some way, such as with an illness like pneumonia.
As we reviewed his situation, Donald was asleep in the room. I knew his family situation was complicated – the note from Sutter Delta mentioned that his mom was in treatment for heroin abuse, so I wasn’t surprised that he was alone. Pale and thin, with flat brown hair pressed onto his forehead, he looked sickly, although not critically ill. He wore an oval-shaped mask over his nose and mouth. When Donald exhaled, the mask clouded with mist. His breathing was even and peaceful. It looked normal, but I had to remind myself that if it were not for the mask, Donald might forget to breathe.
Donald’s care was pretty simple, and conscious of the length of our morning rounds, I summarized concisely. “We will continue antibiotics, await cultures and continue BIPAP at 12/4.”
“Wait, wait,” said Connor. “Doctor Ballard, it is important that you are precise. Imprecision is precisely the cause of most medical errors. What, precisely, are the antibiotics and what rate is the BIPAP set at?”
Yikes, more embarrassment. But he was right; the rate of the BIPAP respiratory support was critically important. Normal BIPAP merely assisted each inspiration and expiration with pressure that helped force air into and out of the lungs. But, this alone would not help Donald. He needed his breaths to be triggered on a regular basis. Thus, his BIPAP was set at a pressure of 12/4 (inspiration/expiration) and a rate of ten breaths a minute. I was about to correct my error, when we were interrupted.
“Bed Seven,” said a weathered nurse in pink scrubs, “she is hypotensive and de-sating. I’m worried about her. You need to look at her now.”
Monday, December 13, 2010
Monday, December 6, 2010
Treat them like family?
MY FATHER, a pediatrician, tells a cautionary tale.
A family physician, the story goes, agrees to work at a lakeside summer camp for boys. Several days and many bandaged bumps, bruises and bee stings into this service, the campers catch and fry up some perch. As it turns out, the fish is rather bony, and four kids come to the doctor complaining of bones stuck in their throats. One by one, the doctor examines the boys and removes the small slivers of calcium until he gets to the fourth boy. Here, he loses his nerve. He can't get the child to properly open his mouth, and he can't find the bone. Finally, he gives up. This child, he declares, must see a doctor in town. The problem is that the boy is his own son.
I recount this story in order to scrutinize the oft-encountered circumstance in which physicians and other health-care professionals provide medical assistance to friends or family. Today, I'm not talking about lighthearted, curiosity-inducing discussions, but rather situations in which good health may be at stake.
Situations like this are stressful for everyone involved, and for health-care professionals there can be the added stress of a unique inner conflict. On the one hand, we have knowledge -- not only medical knowledge, but also insight into how the system works. On the other hand, we often take on an added responsibility when we attempt to treat loved ones.
Medical evaluation and treatment requires a tremendous amount of weighing risks and benefits. Unfortunately, for many physicians, the simple fact that they are now giving advice to a family member may change their usual risk/benefit calculation.
In particular, physicians in this situation may have a diminished tolerance for making an error of omission -- that is, failing to take action. For instance, we may be reluctant to reassure a family member that everything is going to be fine if there's a chance that we'll find out later that it's not.
And while the term "taking action" has a positive connotation for many, in medicine there are real risks associated with doing so.
According to a 2007 report from the Institute of Medicine, more than half of medical treatments in this country are unproven. Meanwhile, most physicians, patients and malpractice juries tend to overvalue treatment over potential harm from side effects (for example, in most situations the potential benefit of taking antibiotics for a sore throat is much less significant than the potential harm caused by an adverse reaction to those antibiotics). Mix in concern about committing an error of omission, and you may have doctors making unnecessary and risky recommendations to their family members when in fact the clinical situation calls for a doctor with the courage to do nothing.
Medical science is just starting to explore the implications of certain personality qualities, such as risk tolerance, on clinical decisions. A recent study by Dr. Jesse M. Pines, director of the Center for Health Care Quality at George Washington University Medical Center, found that emergency physicians' scores on a standardized risk-taking scale (sample question: "I try to avoid situations that have uncertain outcomes") were associated with significant differences in the clinical management of patients with chest pain. Interestingly, scores on both fear-of-malpractice and stress-from-uncertainty scales were not associated with differences in decision-making.
While this study also did not attempt to judge whether risk-adverse physicians provided better care than risk-tolerant ones, the clear implication is that how physicians perceive risk can affect their decisions. Thus, it stands to reason that physicians giving advice to family members will have an altered risk-taking score -- they are, after all, taking on a new complex level of risk.
Doubt this conclusion? Then ask yourself these questions: "I try to avoid situations that have an uncertain outcome for my patient" and "I try to avoid situations that have an uncertain outcome for my mother."
During my medical training, I was told to treat patients as if they were family. This "grandmother test" was often invoked when considering a treatment or procedure. "Young Dr. Ballard, would you recommend the procedure to your own grandmother?" The assumption was that such an association would lead to better, more-compassionate decisions. Now, I wonder if that's always true.
Do physicians provide better advice to family and friends than to their patients? On the contrary, I believe that in many circumstances the closeness of the situation may cloud our judgment. A number of physicians I asked about this shared my concern.
For example, one said: "I find myself giving so many 'if/then'-type statements and covering every eventuality it really leads to a breakdown in the decisiveness I have when dealing with a patient. Throw in the often odd family dynamics, and you have some pretty crappy advice."
When I contacted Pines, he agreed that medical advice given to family members is often different but asserted that the quality of this counsel depends on the situation.
"The advice might be better in situations where they are very familiar with the family member's medical history," he says. "But the advice could be worse in cases where the doctor may not feel comfortable asking particular questions (like history of sexual partners) and in certain instances feel less comfortable doing a physical exam."
Valid qualifying points, but nonetheless, I wonder if we should reconsider the maxim, "Treat patients as if they were family"? How about we change it to, "When they are sick, treat your family as if they were patients"? Or, better yet, like the camp doctor of yore, leave the treatment to someone with less emotional investment.
A family physician, the story goes, agrees to work at a lakeside summer camp for boys. Several days and many bandaged bumps, bruises and bee stings into this service, the campers catch and fry up some perch. As it turns out, the fish is rather bony, and four kids come to the doctor complaining of bones stuck in their throats. One by one, the doctor examines the boys and removes the small slivers of calcium until he gets to the fourth boy. Here, he loses his nerve. He can't get the child to properly open his mouth, and he can't find the bone. Finally, he gives up. This child, he declares, must see a doctor in town. The problem is that the boy is his own son.
I recount this story in order to scrutinize the oft-encountered circumstance in which physicians and other health-care professionals provide medical assistance to friends or family. Today, I'm not talking about lighthearted, curiosity-inducing discussions, but rather situations in which good health may be at stake.
Situations like this are stressful for everyone involved, and for health-care professionals there can be the added stress of a unique inner conflict. On the one hand, we have knowledge -- not only medical knowledge, but also insight into how the system works. On the other hand, we often take on an added responsibility when we attempt to treat loved ones.
Medical evaluation and treatment requires a tremendous amount of weighing risks and benefits. Unfortunately, for many physicians, the simple fact that they are now giving advice to a family member may change their usual risk/benefit calculation.
In particular, physicians in this situation may have a diminished tolerance for making an error of omission -- that is, failing to take action. For instance, we may be reluctant to reassure a family member that everything is going to be fine if there's a chance that we'll find out later that it's not.
And while the term "taking action" has a positive connotation for many, in medicine there are real risks associated with doing so.
According to a 2007 report from the Institute of Medicine, more than half of medical treatments in this country are unproven. Meanwhile, most physicians, patients and malpractice juries tend to overvalue treatment over potential harm from side effects (for example, in most situations the potential benefit of taking antibiotics for a sore throat is much less significant than the potential harm caused by an adverse reaction to those antibiotics). Mix in concern about committing an error of omission, and you may have doctors making unnecessary and risky recommendations to their family members when in fact the clinical situation calls for a doctor with the courage to do nothing.
Medical science is just starting to explore the implications of certain personality qualities, such as risk tolerance, on clinical decisions. A recent study by Dr. Jesse M. Pines, director of the Center for Health Care Quality at George Washington University Medical Center, found that emergency physicians' scores on a standardized risk-taking scale (sample question: "I try to avoid situations that have uncertain outcomes") were associated with significant differences in the clinical management of patients with chest pain. Interestingly, scores on both fear-of-malpractice and stress-from-uncertainty scales were not associated with differences in decision-making.
While this study also did not attempt to judge whether risk-adverse physicians provided better care than risk-tolerant ones, the clear implication is that how physicians perceive risk can affect their decisions. Thus, it stands to reason that physicians giving advice to family members will have an altered risk-taking score -- they are, after all, taking on a new complex level of risk.
Doubt this conclusion? Then ask yourself these questions: "I try to avoid situations that have an uncertain outcome for my patient" and "I try to avoid situations that have an uncertain outcome for my mother."
During my medical training, I was told to treat patients as if they were family. This "grandmother test" was often invoked when considering a treatment or procedure. "Young Dr. Ballard, would you recommend the procedure to your own grandmother?" The assumption was that such an association would lead to better, more-compassionate decisions. Now, I wonder if that's always true.
Do physicians provide better advice to family and friends than to their patients? On the contrary, I believe that in many circumstances the closeness of the situation may cloud our judgment. A number of physicians I asked about this shared my concern.
For example, one said: "I find myself giving so many 'if/then'-type statements and covering every eventuality it really leads to a breakdown in the decisiveness I have when dealing with a patient. Throw in the often odd family dynamics, and you have some pretty crappy advice."
When I contacted Pines, he agreed that medical advice given to family members is often different but asserted that the quality of this counsel depends on the situation.
"The advice might be better in situations where they are very familiar with the family member's medical history," he says. "But the advice could be worse in cases where the doctor may not feel comfortable asking particular questions (like history of sexual partners) and in certain instances feel less comfortable doing a physical exam."
Valid qualifying points, but nonetheless, I wonder if we should reconsider the maxim, "Treat patients as if they were family"? How about we change it to, "When they are sick, treat your family as if they were patients"? Or, better yet, like the camp doctor of yore, leave the treatment to someone with less emotional investment.
Saturday, November 20, 2010
First Page of "Weaning the Vent"
The girl was bloated with fluid and her skin was so white that it was nearly transparent. Plastic tubes, secured with grainy tape, invaded her mouth and nose. Prone and lifeless, she looked like a drowning victim washed facedown on a beach. But she wasn’t at the beach and she wasn’t lifeless – at least not yet. She was in Bed Seven of the Pediatric Intensive Care Unit (PICU) at UC Davis Medical Center, being kept alive by a machine. Her room reverberated with the sound of a mechanical ventilator – also known as “the vent” – doot-doot-doot-doot-doot-doot-doot-doot. The rapid beat was maddening, like Chinese water torture on over-drive. This frenzied rhythm was her lifeline, the music of a high-speed oscillator vent delivering oxygen to her lungs. Doot-doot-doot-doot-doot-doot-doot-doot. Each puff of air was so fast, and so small that the girl’s chest didn’t move.
Or perhaps it did, but her body was too swollen for me to notice. If she’d been on a traditional ventilator, there would have been no question of if and when breaths were being delivered. Now in my third year of residency training in emergency medicine (EM), I was comfortable with operating traditional ventilators. They made sense to me. Just like with my favorite remote control, I knew where the important buttons were and when to use them. Traditional vents calmly and predictably delivered breaths, and there were only a handful of variables (namely the percentage of oxygen and the frequency and volume of air delivery) that I needed to consider. Traditional ventilators were reassuring, in a morbid sense; no matter how sick or sedated a patient was, the sight of inhalation and exhalation was comforting. Breath in, breath out. Not so with high-speed oscillators, which dispensed tiny puffs of air ten times each second. Doot-doot-doot-doot-doot-doot-doot-doot. I knew the percussive rate aimed to keep the girl’s lungs from collapsing under the weight of the fluid in and around her chest, but this didn’t change the fact that the body in Bed Seven looked more like a horrible science experiment than a living child.
As I listened to a manicured blonde resident named Lesley present the case, I averted my eyes out the 7th-floor window. It was a grey February morning and mist had settled into the skeletons of the sycamore and maple trees. The streets were wet and lawns brown with winterized turf. I could almost smell the muddy grass and taste the soggy air; it was an excellent day to be on a couch, or at a movie, or in a hot tub. And, I supposed, since I had no choice about it, it was a fitting day to start a month-long rotation in the PICU with a 30-hour on-call shift. As I meditated on the dull day, I felt eyes on me. I glanced towards the chairs by the window – they were squeezed into a corner among boxes of ventilator tubing, blankets and other clutter. The girl’s mother, professional dressed with reddish-blond hair that rested on her shoulders, met my gaze. Her soft hazel eyes held a look of bewilderment mixed with exhaustion. Ashamed, I turned back to the girl, but her barely human form was no less awful. In my two and a half years of residency, I’d seen hundreds of awful things: gruesome injuries, grotesque infections and the blank stares of the newly dead. This was the worst.
Or perhaps it did, but her body was too swollen for me to notice. If she’d been on a traditional ventilator, there would have been no question of if and when breaths were being delivered. Now in my third year of residency training in emergency medicine (EM), I was comfortable with operating traditional ventilators. They made sense to me. Just like with my favorite remote control, I knew where the important buttons were and when to use them. Traditional vents calmly and predictably delivered breaths, and there were only a handful of variables (namely the percentage of oxygen and the frequency and volume of air delivery) that I needed to consider. Traditional ventilators were reassuring, in a morbid sense; no matter how sick or sedated a patient was, the sight of inhalation and exhalation was comforting. Breath in, breath out. Not so with high-speed oscillators, which dispensed tiny puffs of air ten times each second. Doot-doot-doot-doot-doot-doot-doot-doot. I knew the percussive rate aimed to keep the girl’s lungs from collapsing under the weight of the fluid in and around her chest, but this didn’t change the fact that the body in Bed Seven looked more like a horrible science experiment than a living child.
As I listened to a manicured blonde resident named Lesley present the case, I averted my eyes out the 7th-floor window. It was a grey February morning and mist had settled into the skeletons of the sycamore and maple trees. The streets were wet and lawns brown with winterized turf. I could almost smell the muddy grass and taste the soggy air; it was an excellent day to be on a couch, or at a movie, or in a hot tub. And, I supposed, since I had no choice about it, it was a fitting day to start a month-long rotation in the PICU with a 30-hour on-call shift. As I meditated on the dull day, I felt eyes on me. I glanced towards the chairs by the window – they were squeezed into a corner among boxes of ventilator tubing, blankets and other clutter. The girl’s mother, professional dressed with reddish-blond hair that rested on her shoulders, met my gaze. Her soft hazel eyes held a look of bewilderment mixed with exhaustion. Ashamed, I turned back to the girl, but her barely human form was no less awful. In my two and a half years of residency, I’d seen hundreds of awful things: gruesome injuries, grotesque infections and the blank stares of the newly dead. This was the worst.
Is it bad to crack your knuckles? (Marin IJ)
For many of us, the body is like an old car. It’s always surprising us with its new sounds, sensations, and unexpected breakdowns. And it’s constantly providing material for investigation. Yes, the human body is a fascinating, unpredictable machine. At the same time, medicine is a fickle art and an imperfect science. For answers to medical questions, there’s always WebMD and “Doctor” Google, and an abundance – perhaps over abundance - of other online health information and advice. But when it comes right down to it, most of us still prefer the face-to-face interaction and in-person opinion of a health professional. Typically we think this interaction occurs in the sterile environment of a physician’s exam room, or perhaps on the phone with an advice nurse. But often, medical opinions are garnered in very unusual places – at dinner parties, the gym, and via Facebook messages.
Health professionals are accustomed to fielding medical questions from family, friends and acquaintances. I certainly am and I’m often intrigued by the curiosities these questions unearth. Have any of the following questions occurred to you? (The answers are adapted from my favorite cocktail party reference, Why Do Men Have Nipples by Mark Leyner and Billy Goldberg, M.D.).
“Is it bad to crack your knuckles?” (Not in moderation, and it sure is satisfying.)
“Can hot tubs make you infertile? (Probably not, and wouldn’t they still be worth it?)
“Should you put steak on a black eye?” (An ice pack is just as good unless you are really set on attracting attention from turkey vultures.)
“Can you swallow your tongue?” (No, you’d have to chop it out first.)
These types of questions are nearly universally interesting (the fact that Nipples was a best seller is sufficient evidence of this) and usually harmless banter. But, if you’re searching for real medical advice from that doctor friend you bump into at Whole Foods, here are some helpful guidelines for inquiry.
1) Know her specialty. A urologist is very different from a neurologist, even though the names sound quite similar (just ask any hospital operator). Thus, you should try to avoid asking a neurologist about a flaccidity issue that is better suited for the talents of a urologist.
2) Know the limits. Lighthearted questions are fine, and most physicians don’t mind them. Many of us enjoy telling our war stories in return. I certainly do. By the way, did I ever tell you about the time that…But, unless you truly think you are in danger, it is best not to casually invoke certain words or phrases. “Heh doc, it sorta feels like there is a big ol’ elephant on my chest,” and “You know, this really is by far the worst headache of my life,” are statements that may cause your physician friend to have a major change in sphincter tone.
3) Know when to stop. If M.D.-in-line-at-the-post-office says “You should really talk to your doctor about that,” what she’s really saying is either [A] that sounds serious and I don’t want to be responsible for you not getting it checked out in a formal medical setting or [B] That is totally out of my realm of expertise, I have no idea what you are talking about, and I’d much rather talk about Buster Posey.
Can you curl your tongue? Does your daughter seem to have bionic hearing? Will your cousin’s eleventh toe be genetically passed on to his offspring? Are you convinced 99-year-old Aunt Mabel is still ticking because she drinks a thimble of scotch with breakfast? These are interesting, fun conversations that physicians often like to engage in. But a party is not the best place to talk about potentially serious medical issues. That said, I look forward to seeing you at the neighborhood holiday cookie exchange. Then I can tell you about that time…
Health professionals are accustomed to fielding medical questions from family, friends and acquaintances. I certainly am and I’m often intrigued by the curiosities these questions unearth. Have any of the following questions occurred to you? (The answers are adapted from my favorite cocktail party reference, Why Do Men Have Nipples by Mark Leyner and Billy Goldberg, M.D.).
“Is it bad to crack your knuckles?” (Not in moderation, and it sure is satisfying.)
“Can hot tubs make you infertile? (Probably not, and wouldn’t they still be worth it?)
“Should you put steak on a black eye?” (An ice pack is just as good unless you are really set on attracting attention from turkey vultures.)
“Can you swallow your tongue?” (No, you’d have to chop it out first.)
These types of questions are nearly universally interesting (the fact that Nipples was a best seller is sufficient evidence of this) and usually harmless banter. But, if you’re searching for real medical advice from that doctor friend you bump into at Whole Foods, here are some helpful guidelines for inquiry.
1) Know her specialty. A urologist is very different from a neurologist, even though the names sound quite similar (just ask any hospital operator). Thus, you should try to avoid asking a neurologist about a flaccidity issue that is better suited for the talents of a urologist.
2) Know the limits. Lighthearted questions are fine, and most physicians don’t mind them. Many of us enjoy telling our war stories in return. I certainly do. By the way, did I ever tell you about the time that…But, unless you truly think you are in danger, it is best not to casually invoke certain words or phrases. “Heh doc, it sorta feels like there is a big ol’ elephant on my chest,” and “You know, this really is by far the worst headache of my life,” are statements that may cause your physician friend to have a major change in sphincter tone.
3) Know when to stop. If M.D.-in-line-at-the-post-office says “You should really talk to your doctor about that,” what she’s really saying is either [A] that sounds serious and I don’t want to be responsible for you not getting it checked out in a formal medical setting or [B] That is totally out of my realm of expertise, I have no idea what you are talking about, and I’d much rather talk about Buster Posey.
Can you curl your tongue? Does your daughter seem to have bionic hearing? Will your cousin’s eleventh toe be genetically passed on to his offspring? Are you convinced 99-year-old Aunt Mabel is still ticking because she drinks a thimble of scotch with breakfast? These are interesting, fun conversations that physicians often like to engage in. But a party is not the best place to talk about potentially serious medical issues. That said, I look forward to seeing you at the neighborhood holiday cookie exchange. Then I can tell you about that time…
What does the term “palliative care” mean to you? (Marin IJ)
What does the term “palliative care” mean to you? Do you think about metastatic cancer, depression and Death Panels? About funerals and estate planning? Most likely, you don’t think about palliative care at all, or would very much prefer not to. But chances are, at some point, you’ll be faced with a decision related to palliative care, for either yourself or a family member.
The term “palliative care” is derived from the Latin palliare, which means, “to cloak,” and refers to treatment aimed at relieving symptoms and pain rather than effecting a cure. Hospice (perhaps a more familiar term to many) is a type of palliative care that is usually reserved for people in the end stages of terminal illness. Palliative care, on the other hand, may be offered to anyone who has a serious illness —regardless of life expectancy. The basic philosophy behind them both is the same. My wife Angela, a volunteer for Hospice By The Bay, described it this way.
“When everything important to a person is being stripped away by illness, it’s vital to give them the chance to hold onto dignity and autonomy, to receive compassion, to be comfortable, to be home, and to have as much quality of life as possible.”
I agree with my wife (imagine the trouble I would get into if I didn’t); this is a humane way to deal with serious illness. But I also recognize why many people choose to fight end-stage illness, no matter what the cost in terms of side effects and suffering. It’s a very personal calculation, but new evidence is suggesting that it need not be a stark “either-or” choice. This is because new data indicates that some patients with terminal illness may live longer with palliative care than with more aggressive treatment.
Consider the study by Dr. Jennifer S. Temel and colleagues published this past August in The New England Journal of Medicine. The authors compared two randomly assigned groups of patients with metastatic lung cancer – an aggressive care group (defined by no or late referral to palliative care and/or chemotherapy within the last 2 weeks of life) and a palliative care group (early palliative care integrated with standard oncology care). As expected, they found that those who received early palliative care had higher quality of life scores and lower levels of depressive symptoms. The goal of palliative care is, after all, to improve or maintain quality of life. Surprisingly, however, they also found that the palliative care group lived longer – more that 30% longer (11.6 months versus 8.9 months). Even when we keep in mind that this study examined patients with only one, specific subset of lung cancer, the ramifications are striking; palliative care may offer a chance to live longer and live better.
Other research supports this concept – Dr. Stephen R. Connor and colleagues have reported that patients with congestive heart failure and advanced cancer live longer with hospice care (remember, hospice is palliative care given to a certain segment of terminally ill patients) than without it. Recent journal articles have also reported on the successful integration of palliative care into both the oncology and intensive care environments. And, there are the anecdotal stories. Art Buchwald, former Washington Post columnist, wrote a book (Too Soon to Say Goodbye) chronicling one such story. Buchwald, on hospice for end-stage kidney failure, was expected to die within weeks, but instead survived nearly a year, becoming known at hospice as “The Man Who Would Not Die.”
So, knowing this, perhaps we need to re-define and re-frame the concept of palliative care. Dr. Robert J. Lavaysse, Director of Inpatient Palliative Care at Kaiser-Permanente San Rafael offered me one such description.
"Palliative care is about bringing the patient and their families' values and goals to the fore as the driver for medical decision-making. It is also about alleviating symptoms. We are understanding that these conversations need to happen upstream and not in the last few days, weeks or months of life." And this is an important point – palliative care is more than just narcotics for those on the brink of death – it is about providing support in illness – relieving pain and suffering, bringing family together, provide psychological support, and thinking about living wills and estates.
Hopefully the term palliative care is one that will keep its distance from your life, but should it encroach on you or your loved ones, I hope this column has helped you to understand it benefits – both those that are long established and those that we are just now unearthing.
For more on Palliative Care
www.getpalliativecare.org
The term “palliative care” is derived from the Latin palliare, which means, “to cloak,” and refers to treatment aimed at relieving symptoms and pain rather than effecting a cure. Hospice (perhaps a more familiar term to many) is a type of palliative care that is usually reserved for people in the end stages of terminal illness. Palliative care, on the other hand, may be offered to anyone who has a serious illness —regardless of life expectancy. The basic philosophy behind them both is the same. My wife Angela, a volunteer for Hospice By The Bay, described it this way.
“When everything important to a person is being stripped away by illness, it’s vital to give them the chance to hold onto dignity and autonomy, to receive compassion, to be comfortable, to be home, and to have as much quality of life as possible.”
I agree with my wife (imagine the trouble I would get into if I didn’t); this is a humane way to deal with serious illness. But I also recognize why many people choose to fight end-stage illness, no matter what the cost in terms of side effects and suffering. It’s a very personal calculation, but new evidence is suggesting that it need not be a stark “either-or” choice. This is because new data indicates that some patients with terminal illness may live longer with palliative care than with more aggressive treatment.
Consider the study by Dr. Jennifer S. Temel and colleagues published this past August in The New England Journal of Medicine. The authors compared two randomly assigned groups of patients with metastatic lung cancer – an aggressive care group (defined by no or late referral to palliative care and/or chemotherapy within the last 2 weeks of life) and a palliative care group (early palliative care integrated with standard oncology care). As expected, they found that those who received early palliative care had higher quality of life scores and lower levels of depressive symptoms. The goal of palliative care is, after all, to improve or maintain quality of life. Surprisingly, however, they also found that the palliative care group lived longer – more that 30% longer (11.6 months versus 8.9 months). Even when we keep in mind that this study examined patients with only one, specific subset of lung cancer, the ramifications are striking; palliative care may offer a chance to live longer and live better.
Other research supports this concept – Dr. Stephen R. Connor and colleagues have reported that patients with congestive heart failure and advanced cancer live longer with hospice care (remember, hospice is palliative care given to a certain segment of terminally ill patients) than without it. Recent journal articles have also reported on the successful integration of palliative care into both the oncology and intensive care environments. And, there are the anecdotal stories. Art Buchwald, former Washington Post columnist, wrote a book (Too Soon to Say Goodbye) chronicling one such story. Buchwald, on hospice for end-stage kidney failure, was expected to die within weeks, but instead survived nearly a year, becoming known at hospice as “The Man Who Would Not Die.”
So, knowing this, perhaps we need to re-define and re-frame the concept of palliative care. Dr. Robert J. Lavaysse, Director of Inpatient Palliative Care at Kaiser-Permanente San Rafael offered me one such description.
"Palliative care is about bringing the patient and their families' values and goals to the fore as the driver for medical decision-making. It is also about alleviating symptoms. We are understanding that these conversations need to happen upstream and not in the last few days, weeks or months of life." And this is an important point – palliative care is more than just narcotics for those on the brink of death – it is about providing support in illness – relieving pain and suffering, bringing family together, provide psychological support, and thinking about living wills and estates.
Hopefully the term palliative care is one that will keep its distance from your life, but should it encroach on you or your loved ones, I hope this column has helped you to understand it benefits – both those that are long established and those that we are just now unearthing.
For more on Palliative Care
www.getpalliativecare.org
Thursday, October 21, 2010
Pumpkin in the Paunch (Marin IJ)
The devilish debauchery is done. Candy wrappers litter the living room and cobwebs cover the corridors. Pumpkins seeds party in the green bin and ghoulish mascara smears the face. It is late Halloween night and if you are like me, there is hell to be paid. If history is any indication, post-Halloween will mean a trick-or-tummy – a pop-pop, fiz-fiz, oh what an abdominal pain it is. I do indeed have an avid sweet tooth and hence many Halloweens past have left me feeling like I have a Jack O’Lantern in the innards. There are surely many others out there who have experienced something similar. Ostensibly, Halloween candy is for children, but in reality many adults take liberties. In fact, according to the National Confectioners Association, an estimated 90% of parents “sneak” some goodies from their children’s treat bags. And, even if you can avoid the sneak attack on the candy bag, there are way too many adult-oriented treats to resist! Consider this entry on stomachachecafe.com…
“On Halloween I invited friends to ‘stop by.’ Not knowing how many would come and how much they would want to eat, I had way too much food to finish. All by myself. I had pigs in a blanket, shrimp, jalapeno poppers, taco dip, wings, chips and dip, cheese and crackers. Then there was pumpkin pie and pumpkin cookies. Not to mention obscene amounts of Halloween candy. I ate and ate until my tummy was aching and then I ate some more. The result was one huge monster tummy with an ache to match.”
Sounds familiar? If it hasn’t happened at Halloween, maybe it has been post-Thanksgiving or a Super Bowl celebration gone a-gorging. There are many variations on this post-feast malaise, with a number of medical terms to match; dyspepsia, abdominal colic and borborygmos (this is my personal favorite and refers to audible gurgling in the bowel). Regardless of the terminology, those whose eyes are bigger than their stomachs are often desperate for treatment. Acknowledging the obvious (that prudent prevention is the best medicine), the following are some recommendations, based on the degree of discomfort.
One Groan. Ouch, the candy corn blew up in your gut. Here are some simple steps towards relief; sipping warm water with lemon or ginger mixed in. Or try honey and cinnamon, perhaps blended with yogurt. A brisk walk around the block might help (but skip the trick or treating this time). If the walk doesn’t work, try a heating pad or a gentle clockwise belly massage.
Two Groans. That caramel apple is on fire! Now might be a good time to consider medicating. There are numerous over-the-counter options and your choice will depend on your symptoms. For a sour stomach, try Tums, Maalox and/or famotidine (Pepcid). For excessive gassiness, try simethicone (Gas-X). For looseness from below, loperamide (Imodium) is worth a shot. And finally, for a repeated pattern of reflux, talk to your doctor about starting a course of omeprazole (Prilosec).
Three groans. This is getting severe. At this point, it is time to consider whether something more serious is going. Heart attacks sometimes present as upset stomachs without chest pain, and there are plenty of potentially life-threatening abdominal conditions that are associated with bloating and cramping. Some clues that the post-feast beast in the gut needs medical evaluation include; fever, dizziness, chest or neck pain, repeated vomiting, bloody or black stool, a hard or rigid belly, or one that is tender in a particular spot. Don’t follow the stoic example of Harry Houdini, who ignored an ache in his right lower abdomen for several days before seeing the doctor. He died from a ruptured appendix on October 31st, 1926.
Most belly pain gets better on its own, and the chances are pretty good that the pumpkin in your paunch will soon pass. But, take this opportunity to make a resolution for the next holiday. Think smaller portions, less booze and some exercise. For the kiddos (and for parents who can’t fight temptation), consider Halloween toys rather than candy. Believe it or not, this choice has been scientifically studied, and kids choose small toys just as often as they choose chocolate. The same, however, is not necessarily true for adults, so it is best to have some ginger ready to go.
“On Halloween I invited friends to ‘stop by.’ Not knowing how many would come and how much they would want to eat, I had way too much food to finish. All by myself. I had pigs in a blanket, shrimp, jalapeno poppers, taco dip, wings, chips and dip, cheese and crackers. Then there was pumpkin pie and pumpkin cookies. Not to mention obscene amounts of Halloween candy. I ate and ate until my tummy was aching and then I ate some more. The result was one huge monster tummy with an ache to match.”
Sounds familiar? If it hasn’t happened at Halloween, maybe it has been post-Thanksgiving or a Super Bowl celebration gone a-gorging. There are many variations on this post-feast malaise, with a number of medical terms to match; dyspepsia, abdominal colic and borborygmos (this is my personal favorite and refers to audible gurgling in the bowel). Regardless of the terminology, those whose eyes are bigger than their stomachs are often desperate for treatment. Acknowledging the obvious (that prudent prevention is the best medicine), the following are some recommendations, based on the degree of discomfort.
One Groan. Ouch, the candy corn blew up in your gut. Here are some simple steps towards relief; sipping warm water with lemon or ginger mixed in. Or try honey and cinnamon, perhaps blended with yogurt. A brisk walk around the block might help (but skip the trick or treating this time). If the walk doesn’t work, try a heating pad or a gentle clockwise belly massage.
Two Groans. That caramel apple is on fire! Now might be a good time to consider medicating. There are numerous over-the-counter options and your choice will depend on your symptoms. For a sour stomach, try Tums, Maalox and/or famotidine (Pepcid). For excessive gassiness, try simethicone (Gas-X). For looseness from below, loperamide (Imodium) is worth a shot. And finally, for a repeated pattern of reflux, talk to your doctor about starting a course of omeprazole (Prilosec).
Three groans. This is getting severe. At this point, it is time to consider whether something more serious is going. Heart attacks sometimes present as upset stomachs without chest pain, and there are plenty of potentially life-threatening abdominal conditions that are associated with bloating and cramping. Some clues that the post-feast beast in the gut needs medical evaluation include; fever, dizziness, chest or neck pain, repeated vomiting, bloody or black stool, a hard or rigid belly, or one that is tender in a particular spot. Don’t follow the stoic example of Harry Houdini, who ignored an ache in his right lower abdomen for several days before seeing the doctor. He died from a ruptured appendix on October 31st, 1926.
Most belly pain gets better on its own, and the chances are pretty good that the pumpkin in your paunch will soon pass. But, take this opportunity to make a resolution for the next holiday. Think smaller portions, less booze and some exercise. For the kiddos (and for parents who can’t fight temptation), consider Halloween toys rather than candy. Believe it or not, this choice has been scientifically studied, and kids choose small toys just as often as they choose chocolate. The same, however, is not necessarily true for adults, so it is best to have some ginger ready to go.
Follow the Herd (Marin IJ - Dr. Goel)
This week, our guest columnist is back – discussing “herd immunity.” This important public health concept is often mentioned in the media, but it’s rarely explained in depth. So, here to remedy this situation is Anju Goel, MD, MPH, the Deputy Public Health Officer for the Marin County Department of Health and Human Services…
You’ve probably seen the advertisements on public buses and in movie theatres in Marin: “Herd Immunity…Join the Herd! Build Community Immunity!” The ads encourage you to get immunized as a double whammy against disease: 1) to protect you, the individual, and 2) to protect the community.
It’s the protecting the community part that can be confusing. How can a vaccine, given to individuals, have a far-reaching effect across the county and beyond? Herd immunity is like a firewall that prevents a contagious disease from taking hold in a community. Immune people don’t become sick from the disease and thus cannot pass it on to others either. The higher the proportion of immune individuals, the lower the likelihood that a susceptible person will come into contact with an infectious person and become ill. As long as that number of non-immune individuals remains low, the disease cannot easily spread.
Most commonly, protection is the result of having been vaccinated. Having previously had a disease also plays a role since we build immunity to many infections that we experience. The duration of immunity, whether via immunization or illness, varies from a few months to lifelong. The level of immunity needed to achieve community protection varies by disease and depends on how easily an organism is transmitted between people. The greater the transmissibility, the higher the immunity threshold required to keep most of us safe. For measles and pertussis, 94% of the population must be immune to protect the 6% that are not. The figure is around 85% for rubella and diphtheria. Below these critical thresholds, diseases will spread more easily.
Herd immunity is vital to people who cannot get a vaccine because of age or medical conditions. It also helps those with impaired immune systems who receive a vaccine but don’t build a sufficient immune response to it. In short, herd immunity protects everyone who is not immune, including those who choose not to vaccinate for personal belief reasons.
Here’s a concrete example of just how important herd immunity is, especially to families with young children. In the last 14 years, nearly every person (except one) in California who died due to pertussis was less than 3 months old. Why are infants so susceptible to severe pertussis? Children receive their first pertussis vaccine at 2 months and their last at 4 to 6 years of age, excluding the booster. So infants under 3 months of age have only partial to no immunity. To protect them, family members and caregivers must be vaccinated. These vaccinations form a cocoon, or circle of protection, around the infant.
Lack of herd immunity and breaks in the circle, then, are partly responsible for the current pertussis outbreak. Though most Marin children have received their primary vaccine series, many pre-teens, teens and adults have not received the booster shot. They serve as a reservoir for the disease. California is one of only 11 states that does not require the pertussis booster for middle school students. Now that Assembly Bill 354 has passed, this will change in the 2011-12 school year and boosters will be required for 7th through 12th graders.
Once we achieve herd immunity, we have to keep immunizing to maintain it. If we were to stop immunizing, we would see resurgence in disease. As the CDC describes on their website, the situation is much like bailing out a boat with a slow leak. When we started bailing (immunizing) the boat was filled with water (the community had rampant disease). But we have been bailing fast and hard, and now it is almost dry and disease is almost gone. We could say, "Good. The boat is dry now, so we can throw away the bucket and relax." But the leak hasn't stopped. Before long we'd notice a little water seeping in, and soon it might be back up to the same level as when we started. Until we can "stop the leak" (eliminate the disease), it is important to keep immunizing.
This risk of disease resurgence is more than theoretical. There are numerous recent examples. Some, such as the resurgence of measles in Europe, have been well publicized. When an (intentionally) unvaccinated American child visited Switzerland in 2008, he returned home with measles and consequently San Diego experienced it largest measles outbreak since 1991. The child exposed 839 people. Eleven of them, all unvaccinated children, became seriously ill including an infant who needed to be hospitalized. All as a result of a potentially deadly disease that is vaccine preventable.
Vaccines are one of the most significant public health advancements in the last century. They save literally millions of lives each year. They’re most effective when a substantial portion of the population is vaccinated. Choosing to vaccinate means choosing to contribute to community immunity. The majority that does vaccinate provides protection to the few who do not.
So give it some thought, and if you haven’t done so already, I hope you decide to join the herd and immunize. Do it for yourself and for your family. Do it for your community.
You’ve probably seen the advertisements on public buses and in movie theatres in Marin: “Herd Immunity…Join the Herd! Build Community Immunity!” The ads encourage you to get immunized as a double whammy against disease: 1) to protect you, the individual, and 2) to protect the community.
It’s the protecting the community part that can be confusing. How can a vaccine, given to individuals, have a far-reaching effect across the county and beyond? Herd immunity is like a firewall that prevents a contagious disease from taking hold in a community. Immune people don’t become sick from the disease and thus cannot pass it on to others either. The higher the proportion of immune individuals, the lower the likelihood that a susceptible person will come into contact with an infectious person and become ill. As long as that number of non-immune individuals remains low, the disease cannot easily spread.
Most commonly, protection is the result of having been vaccinated. Having previously had a disease also plays a role since we build immunity to many infections that we experience. The duration of immunity, whether via immunization or illness, varies from a few months to lifelong. The level of immunity needed to achieve community protection varies by disease and depends on how easily an organism is transmitted between people. The greater the transmissibility, the higher the immunity threshold required to keep most of us safe. For measles and pertussis, 94% of the population must be immune to protect the 6% that are not. The figure is around 85% for rubella and diphtheria. Below these critical thresholds, diseases will spread more easily.
Herd immunity is vital to people who cannot get a vaccine because of age or medical conditions. It also helps those with impaired immune systems who receive a vaccine but don’t build a sufficient immune response to it. In short, herd immunity protects everyone who is not immune, including those who choose not to vaccinate for personal belief reasons.
Here’s a concrete example of just how important herd immunity is, especially to families with young children. In the last 14 years, nearly every person (except one) in California who died due to pertussis was less than 3 months old. Why are infants so susceptible to severe pertussis? Children receive their first pertussis vaccine at 2 months and their last at 4 to 6 years of age, excluding the booster. So infants under 3 months of age have only partial to no immunity. To protect them, family members and caregivers must be vaccinated. These vaccinations form a cocoon, or circle of protection, around the infant.
Lack of herd immunity and breaks in the circle, then, are partly responsible for the current pertussis outbreak. Though most Marin children have received their primary vaccine series, many pre-teens, teens and adults have not received the booster shot. They serve as a reservoir for the disease. California is one of only 11 states that does not require the pertussis booster for middle school students. Now that Assembly Bill 354 has passed, this will change in the 2011-12 school year and boosters will be required for 7th through 12th graders.
Once we achieve herd immunity, we have to keep immunizing to maintain it. If we were to stop immunizing, we would see resurgence in disease. As the CDC describes on their website, the situation is much like bailing out a boat with a slow leak. When we started bailing (immunizing) the boat was filled with water (the community had rampant disease). But we have been bailing fast and hard, and now it is almost dry and disease is almost gone. We could say, "Good. The boat is dry now, so we can throw away the bucket and relax." But the leak hasn't stopped. Before long we'd notice a little water seeping in, and soon it might be back up to the same level as when we started. Until we can "stop the leak" (eliminate the disease), it is important to keep immunizing.
This risk of disease resurgence is more than theoretical. There are numerous recent examples. Some, such as the resurgence of measles in Europe, have been well publicized. When an (intentionally) unvaccinated American child visited Switzerland in 2008, he returned home with measles and consequently San Diego experienced it largest measles outbreak since 1991. The child exposed 839 people. Eleven of them, all unvaccinated children, became seriously ill including an infant who needed to be hospitalized. All as a result of a potentially deadly disease that is vaccine preventable.
Vaccines are one of the most significant public health advancements in the last century. They save literally millions of lives each year. They’re most effective when a substantial portion of the population is vaccinated. Choosing to vaccinate means choosing to contribute to community immunity. The majority that does vaccinate provides protection to the few who do not.
So give it some thought, and if you haven’t done so already, I hope you decide to join the herd and immunize. Do it for yourself and for your family. Do it for your community.
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