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.
Saturday, November 20, 2010
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
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