Examined Lives: The tale of the bungled biopsy

By Margaret Brunner*

In December, I went to Starsen Radiology* for my annual mammogram. They called me at the end of the month. They said I needed to come back immediately for another mammogram because they had found a suspicious mass in my right breast. So I went in that day for another mammo. They definitely saw something, and said I needed to get a biopsy done ASAP, and could perform it, f I wanted.

Of course, I panicked.  I called my Ob-Gyn to see what she had to say. The Gyn office said that Starsen* did biopsies all the time, and that it would be okay to schedule it with them. I called and set the appointment for January 7th. I’ll never forget the date.

The big day arrived and I went to Starsen for the biopsy.  I was nervous as heck. I’d never had this done before, so I didn’t know what to expect.  There were two nurses there to help me prep. Then the doctor came in to explain the procedure and had me sign a paper, of course.

The procedure, called stereotactic biopsy, was pretty painful – they said there would be “some discomfort.” They gave me a local anesthetic, but it was never enough.  Boy, was I glad when it was over.  They told me that they would send the tissue sample to the pathology department in a local hospital and that it would take about one to two days to get the results back.

The waiting was the worst part.  You start to think about horrible possibilities.  Starsen never gave me an idea of how many biopsies show a malignancy, though I did find out from another breast center that 80% turn out to be benign. I’ve been relatively healthy all my life.  So, when I got the call that I would need a biopsy, I was very worried. I kept on thinking, “What if do have breast cancer?  How am I going to tell my kids? I haven’t done so many things that I still would like to do.”

This then led me to develop hives, which happens when I’m psychologically stressed.  On day two, I called Starsen to see if they had the pathology report. Nothing yet.  Day three, still nothing.  Day four, nothing.  Day five, nothing.  Imagine my fears growing and my hives getting worse.  Day six: Starsen had finally gotten the pathology report back. It was benign!  Hallelujah!  I was so happy.

Fast forward to a week later. I get a call from Starsen, who tell me that they took a sample of the wrong area.  Are you kidding?? I couldn’t believe it.  When they mentioned risks before the procedure, they mentioned infection. They did say they might not get the right sample, but that it was very unlikely. Not only did I have to endure the pain of the procedure and many days of waiting for the pathology report, I now found out that they got the wrong area. I never found out why, and another radiologist told me the news – not the one who had done the procedure. They tried to make me go to them for another biopsy.  I declined.  I didn’t pay anything for that procedure out of my pocket – I guess insurance picked up the tab.

I wasn’t sure what I should do.  Should I see a surgeon?  I got a few names in my area. Then I talked to someone in my town and found out about a breast surgeon in Manhattan. Apparently, many women in this area have gone to see her and she is well regarded in the field. I wanted to see someone who really knew about breast issues.  I finally got to see her on February 6th.  Because the mass was so far back in the breast, she recommended another stereotactic biopsy, instead of surgically getting a sample of the suspicious mass.  But she said she wanted the radiologists at her location do the biopsy. That was fine with me.  I loved the breast surgeon.  She was a kind doctor.

On February 12th, I went in for my biopsy.  What a different experience.  There were two nurses there for my procedure, but they really “held my hand” to tell me what was going on and what they needed to do during the procedure.  I really liked that aspect.  I also got to meet the two radiologists who were working on my case.  They introduced themselves to me beforehand and told me what to expect during the procedure.  And they gave me their phone number in case I had questions.

After the procedure, the radiologist got another image to make sure they got the right area. The radiologist in New Jersey hadn’t bothered with that.  I loved the radiologist who performed the biopsy.  She kept asking how I was feeling. Although she gave me a lot of lidocaine, I still felt quite a painful tug and pull during the process.

They sent the sample to their pathology group and said to expect the report within 24-48 hours.  After my last experience, I was very skeptical about getting it that soon.  I was ready to wait six days again.  But boy, was I wrong.  The pathology report came back incredibly quickly – 24 hours!  And happily, it was benign!

If I had to do it over again, I would have found a doctor that other women have seen and speak highly of.  I would asked my friends right away to see if they knew of a good doctor.  Telling my friends also helped relieve the stress of worrying about whether I had cancer. My friends are truly one my pillars of strength.

*Names have been changed to protect privacy.

Visit TEDMED’s Great Challenges website to discuss how to eliminate medical errors.

What’s your definition of stress?

This guest post is by Benjamin Miller, PsyD, Director of the Office of Integrated Healthcare Research and Policy at the University of Colorado School of Medicine.

Stress. You’ve experienced it. Chances are, even as you read this blog, you are in the process of experiencing it. No, not that reading blogs is inherently stressful, but rather because we live in a society that is go, go, go. We move at breakneck speed always aware of the next deadline we must meet or the next place we must be. We are a society on the move. What happens when too much “need to” starts to wear on us? What happens when we start to feel a bit overwhelmed like we just can’t take on one more thing? How do we respond?

Well, rest assured, you are not alone. According to the American Psychological Association’s 2012 “Stress in America” survey:

  • Americans report their mean stress level as a 4.9 on a 10-point scale where 1 means “little or no stress” and 10 means “a great deal of stress,” while they define a healthy level of stress as a 3.6 on the same scale. Twenty percent of Americans report stress levels that are extreme (an 8, 9 or 10 on a 10-point scale).
  • The most commonly reported significant sources of stress include money (69 percent), work (65 percent), the economy (61 percent), family responsibilities (57 percent), relationships (56 percent), family health problems (52 percent) and personal health concerns (51 percent).
  • Only 17 percent of those with high stress say that they are doing an excellent or very good job of managing their stress, compared with 59 percent of those with low stress and 37 percent of Americans nationwide.

These data help shine a light on an often dark corner in healthcare – the role of stress. Before we dive any deeper on the topic, let’s define what we are talking about here. According to Merriam-Webster, there are no fewer than six different definitions of stress.

Rather than pick one of these definitions, I would like to propose a more simple definition for us to consider – stress is change. When you read through all the various definitions of stress in the dictionary it becomes quite clear that whether good or bad, stress is something happening to us within our environment.

With this definition in hand, let’s begin to consider how stress plays a role within health and healthcare. Like many things in healthcare, we try to separate out stress; we try to isolate it as its own entity when in reality this could not be further from the truth. You see, stress, whether you identify it or not, is having an impact on your health. For example, over thirty years of research examining the effects stress on cardiovascular health have suggested:

  • Chronic stress related to work and/or one’s personal life is associated with a 40-50% increased likelihood of coronary heart disease.
  • Those already diagnosed with coronary heart disease have poorer prognoses if they have more work-related stress and social isolation.
  • Increased risk of heart disease is now thought to be due to repeated and long-term stress on autonomic and inflammatory processes.
  • This persistent long-term stress in the workplace, in particular, has been found to impact health and has been characterized as both 1) high psychological demands such as multiple responsibilities with high productivity demands, and 2) low personal control and restricted ability to make decisions.

The costs of stress to you, the consumer, and to the healthcare system are exorbitant:

  • Over $300 billion is spent in legal and insurance costs, and reduced productivity, absenteeism and turnover due to job stress.
  • Healthcare spending was 46% higher for workers with high levels of stress.
  • An estimated $2 trillion in annual healthcare costs are due to the management of chronic diseases, which are largely contributed by chronic stress.

Now, consider that we have novel ways to treat stress.

Meditation for stress reduction programs are demonstrating long-term health improvements. In a recent five-year study examining Transcendental Meditation, participants experienced a 48% decreased risk of stroke, heart attack, and death, as well as reductions in blood pressure, stress and anger.

Laughter and learning to take yourself less seriously are approaches that are also receiving more attention for reducing stress and improving health. Humor is known to release endorphins, those feel-good neurochemicals, and reduce circulation of stress hormones. Laughter Yoga Clubs, which combine laughter and yogic breathing, are becoming more popular at companies and colleges worldwide.

More generally, positive thinking is thought to improve immune function and coping with pain, and reduce incidence of depression and overall distress.

“How stressed are you today?”

I remember once working in a primary care practice where every patient was asked the same question: “On a scale of zero to ten, how stressed are you today?”

The answers were always telling, and would in some ways predict how the rest of the visit would go. For example, if a patient said:

“Well, you know I have been feeling a lot of deadlines at work recently. I just haven’t been able to relax as much as I used to. These deadlines have kept me out of the gym, too, which is one way I always fought off my stress. Right now, I would say I am a 7 out of 10.”

With a patient like this, it was fairly obvious that they knew what the stressor was, knew possible solutions on how to manage it, and saw the entire issue pretty clearly. Other patients, on the other hand, were not as insightful.

“On a scale of zero to ten, how stressed are you today?”

The patient, calm, cool, and collective, would look at you straight in the eye and say “zero”. It was during these moments that you knew something was really going on; because, let’s be honest, who has no stress in their life? How do you manage change in your life? How do you identify “stress”?

Follow Ben Miller @miller7, and watch him moderate our Great Challenges live event about  coping with the health effects of stress on Thursday, March 14th at 1pmET.

The dementia tsunami is headed your way

A Guest Post by Amy Goyer

Anyone who has ever encountered someone who has dementia, much less been involved in the intense care for or a loved one with the wretched disease, has three thoughts that permeate his or her mind:

  • First, pleading: “Please, please don’t let it happen to me…and if it does let there be a cure.“
  • Second, reality: “Who will care for me if I do develop dementia?”
  • Third, fear: “How am I going to amass enough money to pay for my care?”

I was first a caregiver for my grandmother who had dementia and now for my Dad, who lives with Alzheimer’s disease, a common form of dementia. I have these thoughts on a daily basis, and I know I’m not alone: 25 million people are projected to develop dementia by the year 2050 unless we find ways to prevent, treat and cure it.

Who will care for these people? What will be the personal, medical and economic impacts of this surge?

Recently, I participated in a TEDMED Google+ hangout chat about the dementia tsunami headed our way. I was encouraged by the robust discussion of these and other key questions by experts, doctors, researchers, service providers and caregivers. Not because there were answers to all of these questions, but simply because the discussion was taking place.

Those of us who work in the field of aging have been riding our virtual horses through the night shouting, “The boomers are coming! The boomers are coming – and they’re bringing dementia!” for many years. Some in the medical community have also been sounding the alarm. In fact, it’s not only the boomers. By 2050, Gen Xers and even Generation Y will be in dementia range.

Now, by shining a light in the darkness on this critical issue, TEDMED is helping to create the only thing that will really change the course of the dementia tsunami: public demand. We must, as a society, reach that “I’m mad as hell and I’m not putting up with it anymore” stage that creates an overwhelming energetic shift. That shift is what it takes to increase research and treatment options for dementia, as well as affordable care for those who have it and support for those of us who take care of them.

Experts in the Google+ hangout shared their perspectives and some key issues in the chat:

  • About 1 in 8 older Americans have Alzheimer’s disease now (one form of dementia).
  • At this time, some medications and treatments can slow certain types of dementia for some people, but nothing stops it. Nothing. There is no cure.
  • The National Institutes of Health spends only about $500 million a year on dementia research – much less than other diseases.
  • Less than 1% of nurses, physicians assistants and pharmacists are trained in geriatrics, yet 26% of their patients are geriatric. There is a dearth of geriatrician physicians (geriatricians) as well. There are simply not enough medical professionals who are trained in dealing with the diseases of old age (including dementia) and the necessary unique treatments and approaches for this population to meet the demand.
  • Family caregivers are bearing the bulk of the burden of care and will do so increasingly in the future – many without connections to resources and supports that are in place. Caregivers for those with dementia have higher rates of depression and other health problems themselves. More funding for training and supporting family caregivers is needed.
  • More people need to participate in dementia research – but caregivers of those who suffer from it are generally so exhausted and overwhelmed we often can’t get it together to register our loved ones or ourselves to participate in research.
Amy Goyer with her parents.

From my perspective as a primary caregiver for both of my parents who live with me, a full-time worker, and an individual who probably has a strong likelihood of developing dementia myself some day, I could feel horrifically hopeless. What keeps me from falling into the abyss of fear? Taking action. I choose to do something about all of this; I do my part in creating that necessary energetic shift.

I do so personally, by making the necessary sacrifices in my life so that I can ensure my parents are getting the best possible care and by taking a relentless approach to doing my homework, asking questions of their health care professionals, leaving no stone unturned when it comes to possible treatment for dementia and their other illnesses. I also honestly share my own personal caregiving experiences in my blog and other forums. Professionally, I take action by raising awareness and helping other caregivers – in particular through my work with AARP and the Ad Council as a spokesperson for their caregiving campaign. We are working hard to connect caregivers with much needed supports through the AARP Caregiving Resource Center. It’s a big job and it will only get bigger.

Whether you are a doctor, researcher, lawyer, nurse, family caregiver or an individual who doesn’t want to get dementia – do something. Keep the discussion going. It’s better than sitting back and waiting for the flood. In the TEDMED chat, expert leaders and participants all agreed on one thing: we must advocate for those with dementia – they can’t advocate for themselves. I might add that, truth be told, when we advocate for prevention, treatment and a cure for dementia, we are actually advocating for ourselves too. The tsunami is coming, and you never know if you will be in its path.

I look forward to more pointed and hopeful discussion about caregiving and dementia at the TEDMED event in Washington, DC coming up April 16-19.

Follow Amy @amygoyer and on Facebook.

 

 

Examined Lives: A firefighter lives dangerously – while sleeping

By Thomas Zotti

With hindsight, it’s easy to see the roots of my sleep issues.

After college (almost 30 years ago now…yikes!) I found a part-time job in my chosen field of radio, which required working a 2am-10am shift. It was located about an hour’s ride from my parents’ home, where I lived. I did that for a few months (and worked another part-time gig as well) before being offered a full-time position at the same station. This involved a 6pm-2am shift. I took it and commuted for a few months until I found an apartment nearby.

About nine months later I was promoted (?) to the 2am-10am weekday shift. Although the commute was down to about 15 minutes, the shift wreaked havoc on my circadian rhythms. But I was young and managed to adjust. I also tried to keep a fairly normal schedule on weekends.

I also developed the ability to fall asleep at any time and in any place. It was under control…I never felt like I would fall asleep without intending to do so. Just chalked it up to the crazy work schedule.

Eventually I moved on to another radio station. This time it started with a mid-morning-to evening shift with an occasional meeting to cover at night. Much more in line with the rest of the world. Later, I was given the morning host/anchor duties, which meant getting up at 3:30am to get to work, and working until 1:15pm or so most days. Back to falling asleep any time, any place.

Thomas Zotti on the job.

Fast forward to 1996 and a career change. I was hired as a full-time firefighter in my town. This involved working a 24-hour shift twice per week. Obviously, that included some downtime at the station, but I was required to respond to emergencies at all times of the day and night. While off duty, I could also respond as needed…often in the middle of the night. Everyone likes overtime, right?

However, my wife started to comment on my snoring. I didn’t think too much about it, and it was not much of an issue. With being away two nights a week (more if covering an open shift) it never seemed like anything to worry about. Later, a promotion resulted in changing to a day shift and being home every night. It took about a year to feel normal after the change. The comments about the snoring became more frequent.

Then, during a routine physical, my primary care provider (PCP) asked if there was any reason to think I had sleep apnea. I remember being somewhat surprised by the question. I knew apnea involved not breathing for a period of time, and my wife had not said anything like that. I had no reason to think that was the case. So I said no.

Time went by and the talk about snoring became more frequent. At the same time I began to find myself awake at various points during the night. No rhyme or reason to it…just would suddenly be awake. Very infrequently, I would awaken to a feeling of claustrophobia. The feeling would dissipate almost immediately, especially if I got up to use the bathroom. I had never been claustrophobic before, and as a firefighter we routinely do claustrophobia-inducing things, so it had never been an issue. I attributed it to stress and didn’t think a lot about it. Besides, it didn’t happen very often.

Other times I would awaken in the morning with a low-grade headache. More stress? It would go away after 10 minutes or so. My exercise program had taken a bit of a hit as I had little energy in the mornings, but I managed to muddle through. But I could always chalk it up to something else…the fire pager went off twice last night, the cat sat on my chest, etc.

Then my wife started saying I sounded like I was choking at night…and more than once she ended up on the couch because of the noise.

I had little energy in the morning, but after two cups of coffee (big ones!) I would get through the day. But I was getting regular exercise and an annual physical, which typically ended with the doc and/or technicians commenting on how healthy I was.

I’m not sure exactly what made the lightbulb come on last fall. I had the sudden realization that somehow this was all related. After finally putting two and two together, I went to see my PCP, and he agreed. I left with a referral to a sleep clinic.

The clinic was an experience. It’s set up like a small private hotel room. On arrival the technician reviewed the plan and set me up. About 18 electrodes were attached to my head. Two straps around my chest to measure breathing. Electrodes on my legs. A camera on the wall to record my movements. Finger probes. Then the instructions…go to sleep. We’ll wake you if there’s a problem. Easy for you to say, pal.

I slept…at least a bit. Seemed like it took forever to fall asleep while hooked up to all that stuff. In the morning I asked the technician who had to unhook all of it if he saw anything to be concerned about. His response: “I can’t tell you anything official…but you’ll be back for your CPAP (continuous positive airway pressure) machine.” Probably should have seen that coming.

As expected, the sleep clinic diagnosed moderate sleep apnea. By that time I was resigned to it and had done a bit of research on line. The total freak-out came in the fine print of the sleep study report. As a firefighter/EMT, I have some familiarity with vital signs. Oxygen saturation (O2 sat) is a measure of the relative amount of oxygen attached to the hemoglobin in one’s bloodstream. Perfect is 100%.  Most non-smokers have an O2 sat of 96-99%. Smokers and people with respiratory disease may run 90-95%. My sleep study report said my O2 sat had dropped to 81% at one point. In the field, if we have a patient with an O2 sat of 81% we start calling for medflight helicopters. I guess that explains the headaches.

I was prescribed a CPAP machine, which I now use nightly. It forces air into the airway under enough pressure to overcome any obstructions like overly relaxed muscles (the sound of breath passing relaxed airway muscles is snoring). I’m still getting used to sleeping with a mask on my face, but it seems to help tremendously. I have had a noticeable improvement in alertness. Although it often takes many weeks of treatment to “rebuild” a broken sleep cycle, I am very encouraged by fewer aches and pains, more energy during workouts, and that urge to nap after lunch is just about gone. My energy level seems much more steady throughout the day.

I also feel my job performance is improving as my mental acuity improves. Again, it’s one of those things that sneaks up over time and you didn’t realize it’s a problem until it’s being fixed. Having said that, I am extremely grateful that I have not been responsible for getting one of my firefighters hurt or worse while my brain was fogged up. My wife says there is no more snoring and choking. The only issue…since the mask is vented, if I turn on my side facing her she gets a wind chill. It’s been two weeks on CPAP, and I follow up with the sleep clinic next week.

Only now that it’s being treated am I realizing how big an impact my sleep problem had on my health. It seems as it creeps up on you, you slowly adjust to feeling tired all the time. It becomes the norm. I had pretty much chalked it up to aging. Having long had the ability to fall asleep any time, it took quite a while to realize that what was happening was actually a sleep problem. With sleep apnea, it’s not that you can’t sleep at all; it’s that you never quite get to the most restful phase of sleep. Before last fall, if you had asked me how I slept at night I would have said “like a baby” and believed it.

As I mentioned, I run and go to the gym regularly, which I can only assume probably kept the worst of the symptoms at bay for longer than otherwise. Like most people, I could stand to lose a few pounds, but it appears in my case sleep apnea is mainly a heredity issue.

Please don’t feel badly for me…there are plenty of people with much more serious problems than mine. But if any of this hits home with you, get it checked. Today.

Read more here about the Great Challenge of sleep deprivation, and join our live online event Thursday at 3:30 pm ET to discuss it and ask questions of leaders in the field.

Examined Lives: Truth at the end of life

By Elaine Waples

Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”

Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.

I have cancer that is incurable, aggressive, and has negligible survival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.

I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.

Elaine Waples with her husband, Brian Klepper.

Of all things, the simple act of truth has become most important to my husband and me. We talk about my dying. It is a poignant, painful and sometimes funny honesty. We have done it after solemn consults with physicians, during long hospital stays, through gut-wrenching disappointments, and sometimes over toast and coffee on Sunday mornings.

We have learned to be forthright and unafraid of saying it out loud. We deal with small moments – planning vacations, making purchases, visiting family, entertaining old friends – in a sober and reflective way. Routine plans – Christmas with the family; the vacation cottage; an annual trip – become critical decisions. We discipline ourselves to push aside the things that are trivial. It becomes easy to ignore the cracks in the driveway and the clutter in the closet.

And we occasionally treat it with laughter although, perhaps to the horror of some, it is gallows humor. We joke that when I am gone, the piano, the house, the cars will all be his. We laugh and mimic Homer Simpson, believing he is doomed, reading a pamphlet headlined, “So You’re Going To Die.” It reminds us that we are in a real world where playfulness is a part of life.

There is no bucket list. There are no plans to see the great pyramids, kiss the Blarney Stone, or throw a party in Times Square. We look to the small things we have known for decades that have become precious to us now: a walk on the beach, a Saturday matinee movie, sharing a bowl of ice cream, holding hands as we go to sleep at night.

Details – advanced directives, the will, the attorney, the broker – are easy. These will help put affairs in order but they do not address relationships with the world and the people who inhabit it.

The hard things that tug at the heart and create the pain are the unbearable truths to parents that they will lose a child; to siblings that the person they’ve known their entire lives will be gone; to children that they must overcome and move on. They convey a clear and undeniable message to doctors that they must relinquish the desire to salvage, fix and prolong.

But most of all, the truths we come to know lie in the depth and clarity of our bonds. For me, this is reflected in the conversations with my husband, the beloved person in my world. I want him to go on with life; to find someone to share it with; to help the children as they struggle with the loss; to remember the laughter and how much we loved each other. That is all I have left to give him.

And for that I extract a bittersweet promise that he will make me laugh until the end, that
we will hold hands every night, that we will share the ice cream, that we will always talk
about what is happening, and that I will die with him beside me.

It is the dignity, the finality, and the truth at the end of life.

Click here to read more about and to share your thoughts on the Great Challenge of Coming to Grips with End-of-Life Care.

Examined Lives: A med student learns to listen

By Nichole Boisvert

I remember the first story.  It was my first day of eight months working in an HIV clinic in Trinidad; I was unsure of where to go, when a young woman sat beside me.  She looked to be in her late 30s. HIV had begun to ravage her body, her bones eerily visible, her teeth chattering with fever.  She simply started talking, as if she had been waiting for this moment to tell her story.  I listened.  This woman taught me volumes about HIV and a person’s experience with a disease that carries such stigma.  What I remember most though, is when she told me about her boyfriend.  “He loved me,” she said.  “He knew he was sick and he kept telling me, ‘Don’t be like me.  Don’t you be like me.'”

Nichole Boisvert in Cambodia, where she worked with a medical NGO.

The ideas of narrative medicine enlivened me from the moment I heard them at a conference nearly five years ago.  I had recently “converted” from my fourteen-year dream of veterinary medicine to “people medicine” because I simply wanted to do more to help, and with human medicine, I could save lives, heal, or be present and fight for patients who needed it.  I was filled with ideals.  I still am.  Naomi Shihab Nye told me once that without idealists in the world, no good would ever happen, and I try to live by that.  I felt elated and affirmed that these ideals of how I wanted to practice medicine—to be present, to listen, to work the person’s story into the standard history and physical—could be reality.  From that point, I read as much as I could by physician-writers like Danielle Ofri and Abraham Verghese, and read Narrative Medicine; Honoring the Stories of Illness by Rita Charon, a pioneer of the narrative medicine movement from Columbia University.  I wanted to learn how to listen, how to carve out time, how to maintain compassion.

Everywhere I turn, there are stories.  In Trinidad, part of my job as a clinic volunteer was simply to sit and listen to patients share their experiences, their fears, their hopes.  I could borrow an office, sit beside a hospital bed, and just be present.  These patients told me of stigma and strength, of abandonment and suffering and the things that kept them alive.  They gave me Winnie the Pooh stickers, mangoes, and perspective.

Patients in Cambodia take a number to receive treatment; a shortage of medical personnel means that many will be turned away.

As a medical student, perhaps one of the greatest blessings is the gift of time.  We are only expected to carry only three or so patients on any clinical rotation, and so have the ability to spend the extra ten minutes just to listen.  In these moments, I have heard sources of strength in the patient who told me of her developmentally delayed 12-year-old, or the man who told me that he had just got married in the hospital a month ago, after coming out of a coma.  I have picked up on idiosyncrasies that indicated cognitive decline and felt edges of fear in questions about a recent diagnosis.

Rita Charon once wrote, “I was thinking of receiving the stories as gifts.”  There truly is no greater privilege then to be allowed to bear witness to someone, particularly in the place of vulnerability that is a medical setting.  It is a chance to see the individual behind the illness.  As a future physician, it is my duty to take those extra few minutes and listen, notice; healing is not simply eradication of the physical maladies but, as is present in Georgetown University’s motto, cura personalis, care of the whole person.

Nichole Boisvert is a third-year medical student at Georgetown University.  For more from our narrative medicine series, click here.

Examined Lives: A younger face of dementia

My mother was diagnosed with frontal lobe dementia at the age of 63. Cause: unknown. The symptoms crept up over years, in retrospect, but really got our attention following surgery to repair a broken wrist. Mom became moody and withdrawn. She had trouble speaking in complete sentences. She baked a cake and forgot the sugar. When driving, she felt compelled to pass whomever was in front of her — a white-knuckle experience for her passengers, particularly on a highway.

Photo: Gordon Donovan

Later, though, she had more falls and began to walk with slow, birdlike steps, suggesting another fiendish disease at work. She was undiagnosed for quite a while, until her thoughtful gerontologist looked between the lines and found she had progressive supranuclear palsy (PSP), a neurodegenerative disease. Eventually, she would become completely rigid, and, at the end, lose her ability to swallow. Her dementia was one of the symptoms that particularly unlucky PSP patients face.

It didn’t manifest in forgetfulness.  Rather, it was a series of behaviors that were off kilter at best and painfully embarrassing – and dangerous – at worst. Like wandering off holding my three-year-old at Disneyworld, swallowed by the enormous crowd as I frantically tried to follow.  Eating off of a stranger’s plate at a nearby table while waiting for her dinner at the local tavern.  Opening the passenger door on a highway.

Mom’s dementia was an especially startling, as she had previously been so capable in so many fundamental ways. She was a wizard with numbers and a top-performing saleswoman. She could wallpaper a room flawlessly.  She sewed elaborate prom dresses, and stuffed animals and quilts that she donated to children’s hospitals. She grew and canned her own vegetables and baked, decorated and transported an elegant, three-tiered wedding cake for my cousin’s wedding. On her first trip outside the U.S., she made her way alone around Paris, not knowing the language, including a long Metro trip to return a train ticket.  She got the refund. Then she drove us to Belgium – in a stick shift, of course.

Mom in 2009, one month before her diagnosis.

Because she looked even younger than her age, and was otherwise healthy and fit, save for the blankness in her brown eyes, people she encountered were often taken aback by her behavior. But I was humbled by the kindness and humanity we encountered, especially once when Mom reached over and grabbed a pair of socks from a woman’s hands at a clothing store.  The woman leaned over to me and whispered, “My dad was like that.  I know. God bless you.”

She was able to express humor and love the longest.  One day, two gents at the nursing home had a little shouting match, all up in each other’s faces – typical guy stuff, even though one was strapped to an oxygen tank and the other wobbled precariously behind a walker. Everyone in common area could hear their salvos:

“You talkin’ to me?”

“Yeah, you.  I don’t like the way you look.”

“Well, I’m sick of your shit, too.”

“Get up!  I’ll show you what for!”

I turned to see Mom soundlessly giggling.  Our eyes met.  Recognition.

And whenever I told her I loved her, her response came back, clear as a bell: “I love you, too, sweetheart.”

There was a lot that worked for us in the healthcare system.  I was lucky to be able to take her to the one of the world’s top PSP specialists, Lawrence Golbe, who carefully examined Mom and gently confirmed the diagnosis.  But much of our help came from outside the system. My parents had life insurance that kicked in when mom entered hospice and helped defray the enormous costs of nursing home care, which long-term care ombudsmen helped us find.  Lawyers helped us have the necessary paperwork in place, which in turn spurred necessary talks about hard decisions; a friend who is a neurologist had given me frank advice as to what was in store for Mom. The CurePSP Foundation publishes information about the disease and organizes online discussions and local support groups.  Knowledgeable and caring hospice nurses – brought in by our private nursing home – provided continuity and were our mainstay during those final weeks.

Dementia robs its victims of their chance to share their stories. But early on, I asked my mother for permission to tell hers, and she agreed. Like most patients I’ve interviewed, she wanted to help others, especially those who might follow in her unsteady footsteps.

By Stacy Lu

Join TEDMED’s online live discussion with experts on the Great Challenge of our epidemic of dementia this Thursday at 1pm ET.

Can a novel med school curriculum improve doctor-patient communication?

Anyone who has worked – or been a patient — in a large teaching hospital knows what a traditional third-year medical student clerkship can look like: Specialist sweeps in, accompanied by a gaggle of students; specialist has a few words with the patient; students nod and occasionally take notes; specialist leaves, accompanied by retinue.  Students move on to next rotation and never see patient again.

A relatively new model, the longitudinal integrated clerkship (LIC), wants to change all that.  It answers decades of increasing calls from the medical education community to revise the prevailing century-old current “block” model of clinical learning, which can present fragmented views of disease and allow only snips of caregiving in the current outpatient care-based healthcare system.

Within an LIC, students work with mentors in core specialties on their principal clinical year and follow cases from beginning to end — be that an hour, a day or a year — in a process that is patient- rather than program-oriented. It is designed to give students a broader and more empathetic view of healing, and lasting lessons in doctor-patient relationships and communication. Some 15 schools in the U.S., Australia, Canada and South Africa have large and established programs, but more than a 100 schools have joined an international consortium to discuss and explore the option.

“Students are there as things unfold for the patient. They are part of the team. They see the evolution of the disease. They follow patients long enough to see them recover, to see the denouement and the outcome of their decisions,” says David Hirsh, MD, director and co-founder of the Harvard Medical School-Cambridge Integrated Clerkship at Cambridge Health Alliance, assistant professor of Medicine at Harvard Medical School, and lead author of the most comprehensive study of program results to date.

In that study, published last March in Academic Medicine, LIC students performed at least as well as their peers on measures of content knowledge, and reported feeling much more prepared in patient-centered aspects of care, including handling ethical dilemmas, involving patients in decision-making, and relating well to a diverse population.

Patient Care With Context

Students also reported a higher level of satisfaction with their med school education. Not surprisingly, patients seem to like the arrangement, too.

“ ‘I have my own personal medical student,’ ” they’ll say. And to me, they’ll say, ‘Where’s your student today? Because you’re a much better doctor when your student is around.’ ” Hirsh says.

Students in an LIC are also ideally better able to understand a patient’s values and social context and to spot communications roadblocks. As one student wrote in a reflective narrative on the LIC experience:

“Without me I can confidently say this illiterate, non-English-speaking patient, even with his very supportive and involved family, would have fallen through the cracks. The number of appointments and communications and miscommunications would have been so numerous, and it would have taken so long, that he probably would have just stopped showing up.”

“It’s not the student just accomplishing some task. Nor are they seeing the patient as  a case study. It’s not ‘the liver in room six’ – it’s ‘Mrs. So-and-So whom I have known many months, whom I know well,’ ” Hirsh says.

Though patient outcomes haven’t yet been studied, Hirsh believes an LIC, in which students navigate our complex healthcare system in tandem with their patients, can also give them a better vantage point from which to treat chronic disease.

“For example, say a diabetic patient has low blood sugar. You’re there for that, and you’re there for the treatment. Commitments are fostered. You might try harder to help with education and secondary prevention. There comes a stronger desire to learn, ‘Who is that person? Who is that patient?’ “ he says.  As another student wrote,

“Each time we see Ms. O, attempting to understand her evolving health adds another piece to our medical repertoire. Each time we grow to understand a bit more about the toll that hospitalizations and chronically deteriorating health can have on a patient and her family.”

A Lasting Humanism

Perhaps most significantly, graduating from an LIC can give a future doctor a better grounding in the humanism necessary to her or his profession, Hirsh says.

Research suggests that as students progress through medical school, med students become more cynical, with a resulting decline in patient centeredness.

“Their moral development is shattered, their empathy is declining – how can that be? That’s the opposite of medicine’s goals. We want to sustain and nourish our students to be their best selves. Who they will be when they’re doing their life’s work?” Hirsh says.

In contrast, Hirsh’s research shows that students show an increase in patient-centeredness as they go through their training as compared to those doing a traditional clerkship.

From a student:

“I’ve heard traditional third- year students describe their horror at the sight and smell of the necrotic feet seen in vascular clinic. It had never occurred to me to be disgusted by F. When we noticed the first signs of an ulcer on her toe and when erythema gave way to necrosis, then osteomyelitis, I remember feeling concern, but not disgust. And when we finally had to serially amputate her forefoot, I remember thinking only that I wanted to do right by her—to find vital tissue. “

Hirsh says, “Ethics has to do with the students having meaningful roles. The student needs to matter to the patient, and the patient needs to matter to the student.

“Our students want to know the science because they want to help their patient.”

— Stacy Lu

Examined Lives: Withdrawing care in the ICU

by Kristen McConnell

We all want to die quickly and easily, and old. But now that everyone has a cell phone in his pocket and transport to a hospital is rapid, the sudden heart attack, massive stroke, hard fall, or even pneumonia that would have swiftly ended a life a couple of generations ago is less likely to kill you and more likely to get you admitted to a hospital and intubated. At that point, decisions must be made.

Intensive care is the place where we hold back death after an acute illness or injury, largely by breathing for patients with machines and by stabilizing their vital signs with a host of powerful drugs. Some patients do well and recover, others can’t, and sometimes a patient’s family realizes that his health won’t meaningfully improve, or that he would not want to live in his condition, and decides to withdraw care.

The first time I saw this was haunting. I was a brand new nurse, and I knew the patient because I’d cared for her previously. She’d had a devastating stroke, and almost no visitors in over a month. Her body had deteriorated in many ways, and we were juggling treatments, fighting a losing battle. The family made the decision to withdraw care from afar. Her eyes were always open, and it was possible that she was conscious but unable to respond with any type of movement. There was no way to tell.

She’d been taken off the ventilator and given morphine to ease her discomfort from air hunger. At the end of my shift I walked by her room and saw it darkened, the monitor off, the whites of her eyes the only pops of light. I was shocked to see her left alone in her last hours. I snuck in and squeezed her hand, talked to her a little, told her she would be okay soon.

The second time I saw care withdrawn was almost joyful. The patient was elderly and his wife was confident that he didn’t want to live on life support. Now off of the vent and breathing insufficiently but independently, his nurse said he seemed so much better. He looked comfortable, his arms free from the restraints he’d been struggling against, and his blood pressure, which had been high enough to require pushes of IV labetelol, was now normal. “He was fighting it so much,” she said. His wife stood at the foot of the bed while I helped my friend bathe him. “Give his bottom another wipe,” she said. “This is probably the last time.”

Last week my own patient had care withdrawn. He was in his nineties and had broken his spine in a fall, going overnight from independent to intubated and on vasopressors, to keep him breathing and to maintain viable blood pressure.  His aging children were scared to enter his room. They peered through the glass door, asking me, “What’s his prognosis? What’s going on? He wouldn’t even know if we went in there now, right?”

I explained what they were seeing and told them that now he was stable, but without the treatment and the ventilator, he wouldn’t be. And I told them that for the last few hours he’d been responding to me by sticking out his tongue when I asked, so I thought he would know that they were there. Did they want me to go in with them? No. They went to the waiting room.

Talking with the surgeon, our ICU fellow, and me, the family easily understood that a major operation, at his age and with his underlying health conditions, wasn’t a good option. Without surgery, we could continue to care for him and hope that he would become stable enough to leave. Given his injury, leaving the ICU would mean moving to a nursing home and having a feeding tube, perhaps being dependent on a ventilator, and certainly being unable to walk.  The likelihood of complications in the ICU was high—he was susceptible to infections, he already had heart disease, and his blood pressure, dangerously low due to his injury and now maintained medically with an aggressive, titratable IV drip, might not stabilize. There was a real possibility that he would never become healthy enough to leave.

Otherwise, we could cease intensive management and let the natural effects of his injury take their course, focusing on his comfort.

They asked about thinking it over for a day or so. This is always an option, but I hoped they wouldn’t take it. I was the one tightening the man’s restraints to keep his hands away from the tube and talking close to his ear, telling him we would keep him as safe and comfortable as we could. But after asking us to step out and talking briefly, they’d decided. Under these circumstances, their father would prefer to have medical care withdrawn.

The doctor explained that we didn’t know if the patient would breathe on his without the ventilator, but that we would give him morphine and make sure he was comfortable. I had a Catholic priest come to perform last rites, and stood with the family as they prayed and wept.

The doctor said now that he knew what their father wanted, it was his job to carry it out, trying to absolve them of the sense of responsibility. I don’t think that was what upset them though—and I told them it was okay to be sad that he was dying. “It’s better not to be sick for a long time,” I said. “I don’t disagree,” said the patient’s son. “I just can’t believe it.” His daughter noted the musical tone of our ventilator alarms, and said that he would have told them about it, that he loved music and dancing.

They wanted to leave before we took their father off the ventilator and stopped the medications. I reminded them that he had been responsive, and since he’d had his last rites, probably knew what was going on. But they chose not to say goodbye, telling him they were getting lunch and would see him later.

I wanted to get it right. I wanted to catch up on my other patient so I wouldn’t have to leave this one alone while he was dying. The doctor put in orders to withdraw care and discontinue the medications, but I wanted to wait until the tube was actually out before stopping those, because I didn’t want him to die while he still had a plastic tube taped to his face and snaking down his throat, pushing air into his lungs.

When everybody was ready, the respiratory therapist, doctor and I gathered in the room. I was hushing people when they said something too bluntly or matter-of-factly, reminding them that the patient, though sedated and not alert, had been able to follow commands. I held his hand and said,  “Don’t worry, it’s okay, we’re going to take this tube out because we want you to be comfortable.” That was the best thing I can think of to say—it was true.

With the tube out he didn’t struggle at all, and with the meds off, his blood pressure was dropping. He didn’t need the morphine. He was comfortable. He took a few breaths. While the doctor and I stood by him, his daughter called. I told her that we’d just taken out the tube and he was passing very quickly, that it wasn’t going to take hours or days. He was going now, as we spoke.

In an ICU, the monitor displaying vital signs in a patient’s room is connected to a central system. Alarms for asystole—no heart beat—or other problematic values flash across every monitor on the unit to alert us. When this happens, nurses will stop by the room to see what’s up. Under normal ICU circumstances, the bright lights are on, many people are moving quickly in the room, and we gather, watching to learn, to step in if another person is needed to push a drug, do CPR, or keep track of the interventions, and to be available as a runner for supplies. When care is withdrawn, the monitor in the patient’s room will be off, or silenced, but alarming values are still displayed throughout the unit. But in the room, there’s no drama—just one patient, sometimes the family, one nurse, a doctor.

An intensive care unit is not the ideal place to try to let a life end peacefully, but there’s not always the opportunity to arrange something else. When a decision is made to withdraw care, stop interventions, and let someone die, we do our best. This is what it looks like.

Kristen McConnell

 

Kristen McConnell, R.N., works in a specialized intensive care unit in a large academic hospital. Read more of her work here.  

For more about the Great Challenge of coming to grips with end-of-life care, click here

Today at TEDMED: Two live online events and three new speakers

TEDMED will host two live, online events today to discuss Great Challenges of health and medicine:  Addressing Healthcare Costs and Payment Systems from 1-2pm EST; and Coming to Grips with End-of-Life Care from 3:30-4:30 EST.

Join us for an informal, moderated discussions on these Great Challenges. Share your thoughts and quiz the Team – we’ll answer selected questions on-air. You can also submit questions and share your perspective with the community via Twitter, tagging your tweets with #GreatChallenges.  Follow TEDMED on Google Plus to get started, or join on TEDMED.com.

We’ve also announced three new speakers for TEDMED 2013:  Victor Wang of GeriJoy, Inc., which creates virtual companions for seniors; Zubin Damania (aka ZDoggmd), Director of Healthcare Development for Downtown Project Las Vegas and a standup comedian who mercilessly pokes fun at the foibles of our medical system; and Sara Horowitz, founder and Executive Director of Freelancers Union.

Click here to see our speaker roster to date, and here to apply to TEDMED.