Back to Blog Home

Category Archives: Examined Lives

Examined Lives: On World Lupus Day, one patient’s story about life with a mysterious disease

Posted on by

By Tiffany Marie Peterson

This February 20th was my third-year anniversary of being diagnosed with lupus.

I have had joint problems since I was little. But in January of 2010 I lost my grandmother to throat cancer and shortly afterwards my symptoms because so severe I couldn’t move out of the bed. It took me about a month to be properly diagnosed. I was first diagnosed with rheumatic arthritis, but my general practitioner (GP) is so hands-on; he referred me to a rheumatologist right away so I wasn’t misdiagnosed for long.

Lupus is such a mysterious disease. One moment its not active at all, and the next moment completely active. I could be having symptoms like swollen achy joints or chronic fatigue without any warning. There are so many “ifs.” You never know how your day is going to go until it ends and you never know what what’s coming down the pike.

Putting a Team Together

When you have lupus, you have to manage multiple care providers, including nephrologists, GPS, and a rheumatologist.  I’m on my third rheumatologist now, because the first two wouldn’t let me an empowered patient. That means that you’re enabled and educated, and you know how to take part in your own care. I just started seeing my new rheumatologist that I have only seen a couple of times. I finally found a rheumatologist who was willing to sit down and work with me and not at me. It took me about two years to get this team together.

I’m on a drug that may cause eyesight issues, so I also have an opthamologist. I have to see a psychotherapist and a psychiatrist – lupus itself causes depression – so each month I have about six doctors’ appointments minimum.

Technology Helps Communications

I first go diagnosed my rheumatologist wasn’t open to sharing my medical files, so when it came to making decisions she didn’t care about what I had to say. Now, I have a patient portal that allows me to send my GP e-mail, so I can email him whenever something’s up, and he can get in contact with the other doctors.

I don’t know if many patients have patient portals, but it helps me a lot.  The fact that I can just email my doctor is wonderful, because when you call the office you almost never get the doctor.  But when I email my GP, he responds within a day or two.

Of course, you also have to have a copy of your own health records to share when necessary. It’s so important. I tell my lupus brothers and sisters, make sure you always have your own health records with you.

Still, it’s not like I can look at my charts online.  All of my records are paper records.  I have no idea why I can’t get them electronically. Or diagnosing or medications. Even my GP will still use a book to find out whether or not medicines will clash, and I’m like, ‘Can’t you go online and find out whether that’s happening?’

I usually use a health app, CareCoach. It helps me prepare for my visits so I can write down all the questions I have to my doctors. It also helps me record all my doctors’ visits, so I can just play back my experience and get the information I need.

It does make me feel more in control, and definitely more hopeful. It’s a good feeling when everyone is on the same page and all of your doctors are working towards the same goal.  It definitely feels more empowering, and it gives me hope that I’ll have a better outcome.

On Insurance Hassles

There was a huge hurdle in getting health insurance. I couldn’t afford it.  I’m listed as permanently disabled, so managing my healthcare is a lot more straightforward, but there are still some hurdles. I have so many doctors appointments and it all adds up, especially when it comes to medical billing. Every single time the mail comes I get a new bill, so I’m always busy getting through all that.

In the Hospital

There is so much that happened to me in the past six months. I had a hospital stay recently. I had a urinary tract infection that went straight to my bloodstream and caused all of my organs to shut down, so because of that I had to have a blood transfusion.

I went to many different hospitals during my recent visit.  I have a family hospital, which is in the Bronx, but prior to that I was in two other different facilities that did not work with me. They weren’t practicing participatory medicine, where the patient is at the head of the table in their own care. They worked hard at my family hospital to follow my wishes and to work closely with my care team.

Finding a Patient Network

One thing I would tell other Lupus patients: Don’t be shy to ask your doctor questions.  A lot of us can get intimidated when we go into the doctor’s office, because maybe the doctor’s bedside manner is not that great.

Maybe the single biggest step a patient with chronic illness can take is talking to other patients. Lupus patients are always talking to each other online to help us manage our care teams. It’s like, ‘We’ve discussed the issues with each other, now let’s go talk to the doctor.’

I feel like social media in itself has been really helpful in managing my own care, because there are so many patients out here who are veterans and have been managing this disease for 20 years and more. That’s how I found my first mentor, my first year with lupus, and now she’s one of my great friends. She’s been one of my close mentors ever since.

Tiffany Peterson

Tiffany Peterson

 

Tiffany Marie Peterson blogs at www.tiffanyandlupus.com. Follow her on Twitter @tiffanyandlupus.

Examined Lives: My Sarcoma, the story of a tumor told with art

Posted on by

By Jacob Scott

This is the story of a Cancer Connection I never hoped to make and also the one that has brought me the most joy.

About a month before my family and I left for the University of Oxford, my dear friend and neighbor Ray came over and asked if I’d look at this side, where an orange-sized mass was growing.

So, you know I’m a cancer doctor, so you can probably guess how this story plays out.  But before I tell you (or let Ray tell you), I want to share a bit about Ray. He’s an artist whose paintings have always struck me, and my scientist and physician friends, in similar ways.  There is just something alive about them.  Something cellular.  Something moving.

This makes sense as Ray studied biology as an undergrad, but it is also says something about the artist: that there is always something moving in his mind. At the heart of this artist is a scientist.

I’ll let him share his manifesto about his treatment, and the subsequent healing that he has found through this new project, “My Sarcoma.”

My name is Ray Paul. I am a 50-year-old artist, musician, frustrated biologist and myxofibrosarcoma patient. As of my latest scans in February 2013, I am free of detectable cancer. My next round of scans are scheduled for June 2013.

My journey begins in the spring of 2011, when I noticed a rapidly enlarging lump protruding from my left flank. Unfortunately, I fell into the category of the uninsured who wait and hope for their medical issues to resolve magically. Finally, as the mass grew to the size of an Idaho baking potato, I felt compelled to go into the local Emergency Walk-In Clinic. I was told it was likely a lipoma and I needed to find someone to remove it. After weeks of worry and several inquiries, I approached a surgeon friend who agreed, with some trepidation, to perform a tabletop resection, using local anesthesia. It soon became clear that the mass was more than a lipoma.

I was sewn up and a sample was sent to his pathologist who forwarded it to the pathology team at Moffitt Cancer Center. Soon thereafter, I received “The Call.” Shock and confusion rushed in, but curiously, were followed by a sense of calm resolve and numb determination.

I was admitted as a patient to Moffitt Cancer Center in August of 2011. I began neoadjuvant radiation therapy in September 2011, followed by a radical resection in 2012 of the 12 x 12 cm myxofibrosarcoma. In July 2012 I was diagnosed with a lung mass, and underwent a lung subsegmentectomy to remove a metastatic myxofibrosarcoma.  In November 2012 I began adjuvant radiation therapy.

During this life-consuming ordeal I have placed my complete faith and trust in my team at Moffitt, and in my physical and spiritual ability to heal. Never have I dreaded going into Moffitt. The strength and determination of my fellow patients has been humbling and has greatly increased my sense of compassion. I have been inspired to create a painting for the Radiation Department, which hangs in the waiting room.

Porpoise Song

Porpoise Song

and have donated a piece to the Integrated Mathematical Oncology Department.

Sweet Jane

Sweet Jane

I am currently embarking on a collaborative endeavor entitled “My Sarcoma” project.  I plan on combining painting, photographic images of my tumor cells, printmaking, video and music to create an exhibit that illuminates my experiences as an artist and cancer patient. I envision my art to be a prescient, visual manifestation of the battle raging within, and a powerful testament to the beauty of Hope.

As a teaser, here is a prototypical Sarcoma piece from Ray.  You can see his signature style of abstract forms detailed into cellular figures, and beneath, an H&E pathology image of his own tumor.

Ray's Sarcoma

Ray’s Sarcoma

Jacob Scott is a TEDMED 2012 speaker who blogs at cancerconnector.blogspot.com.  You can follow him @CancerConnector. You can follow Ray on Twitter at @raypaul4.

Examined Lives: Why healing health starts with racial equity

Posted on by

By Gail Christopher

At the time my three-month old baby died, I could think of nothing but our family’s sorrow. We had lost a dear, beautiful child. What can you do but grieve?

It was only later that I realized that I was a statistic.

In fact, as I looked back, I could recall a number of early deaths in my community. When I was 15, my best friend’s mother was rushed to the hospital before she was due. It was a shock to us all when she died during delivery. This was, we thought, a healthy woman.

Then I remembered my parents’ best friends. The couple had a daughter named Alicia. Alicia also died during childbirth, along with her baby.

What was going on here? Why were these maternal and infant losses so prevalent in families of color?

I made the decision to do something to change these statistics, and began pursuing a career as a holistic doctor.

As I would come to learn, there were gross inequities between whites and African-Americans in birth and maternal health outcomes.

When I graduated from naturopathic medical school in the mid-1970s, I set up a private practice in Chicago. At the same time, I established a company that worked with social service agencies to deliver holistic wellness and well-being services to underserved communities.

Gail Christopher

We focused on getting women to eat healthfully, to get exercise, to manage stress. They did the things that are key in the holistic healing world. And these women began having healthy babies.

It actually became a joke in our community. Women referred to me as “the fertility doctor,” because I saw so many who were expecting, or who couldn’t get pregnant, or who had had babies and lost them. Of course, I wasn’t a fertility doctor. I was making sure that they got the whole health care they needed. Healthy pregnancies followed.

So this was my work: Helping women, children and families become healthier. Helping communities understand and improve disparities in outcomes. Helping reshape the statistics.

And yet I also knew that truly eliminating these differences in outcomes would mean dealing with something much bigger.

To genuinely eradicate health disparities—as a nation—we have to confront the undergirding dynamics that contribute to them. That means addressing African-Americans’ continued exposure to discrimination and lack of opportunity.

That’s hard work: structurally, politically, emotionally.

Challenging the dynamics of discrimination means reaching back through deeply entrenched roots and history. It means reconfiguring the DNA of this country’s belief system.

At a "Save Our School" rally in Cleveland, Ohio, high school junior Gail C. Christopher addresses her classmates as they convene to save their high school from demolition.

For hundreds of years, that belief system has held that it is OK for people to be valued differently based on physical characteristics. We have never as a country dealt with that belief.

Of course, we’ve had a civil war and a civil rights movement—but those dealt with the consequences of that belief rather than the belief itself. We’ve also known that race is a social, rather than biological, construct. But simply pronouncing something false is not dealing with it.

Today, at the W.K. Kellogg Foundation, we’ve put a priority on achieving racial healing and racial equity in this country. This work specifically and openly challenges the historical belief in racial hierarchy.

At the same time, we also work to to equip people with the innate and external resources to mitigate the effects of that historical belief.

It’s a both-and approach.

Dealing with it requires intentional strategies.

Let’s imagine a young boy growing up in a community much like the one where I used to practice. It’s an impoverished neighborhood. He’s enrolled in a failing school system. He’s harassed by police. And he or may not have the benefit of two parents or an extended family.

This child is continually exposed to overwhelming stress responses, something Dr. Jack Shonkoff at Harvard University calls “childhood adversity.” Childhood adversity is a predictive factor in all manner of chronic diseases later in life. And so we see our long racial history playing out across the health of individuals and particular communities from a very young age.

For this boy, and for his children, we have to tackle both the current situation and the historical context.

At the bare minimum, he needs balanced nutrition and social support to cope with the vicissitudes of his body’s adaptation to the stressful environment. People need optimal food for optimal health. The W.K. Kellogg Foundation funds organizations working to improve access to fresh, healthy affordable food for vulnerable children.

Dr. Gail Christopher, with her children Heather and Hassan.

At the same time, we also fund organizations working to acknowledge and dismantle structural racism—the policies and practices that continue to create barriers for children of color.

Which takes us to an evolution of my earlier question: How do we address the early death so prevalent in families of color?

Addressing these health inequities demands that we address inequality more broadly. We must create an environment that supports equity and opportunity while mitigating the effects and consequences of exposure to discrimination.

In other words, I realized that to change the statistics—to change the conditions that resulted in so much premature death in my community growing up—we must bring a racial healing and racial equity lens to our nation’s health discussion.

Until we do, we’re just putting Band-Aids on the hemorrhage.

Click here to read more about the Great Challenge of the impact of poverty on health.

Examined Lives: The tale of the bungled biopsy

Posted on by

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.

Examined Lives: A firefighter lives dangerously – while sleeping

Posted on by

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

Posted on by

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

Posted on by

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

Posted on by

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.

Examined Lives: Withdrawing care in the ICU

Posted on by

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. 

Examined Lives: A young caregiver helps three generations

Posted on by

By Stacy Lu

This is the first of a series exploring the impact of the Great Challenges through storytelling.

At least five days a week for the past four and a half years, 17-year-old Jimmy Braat has been traveling two miles to the home of his 73-year-old grandmother in Lake Worth, Fla. Along with his mother, Debbie, he usually stays a few hours, doing household chores, helping to change the wrappings on his grandmother’s legs that prevent swelling from lymphedema, giving her medicine.

Then, he and Debbie may take her grocery shopping. At least once a week he also accompanies her on one of her many doctor visits – to the endocrinologist, podiatrist, pulmonologist, cardiologist, or sleep specialist – lifting the wheelchair that’s too heavy for his mom to manage.

His “Grandma Del” suffers from a range of ailments that limit her mobility, including diabetes, neuropathy, and pulmonary hypertension. Jimmy’s dad passed away in 2008 from heart failure. Debbie, 52, has pulmonary hypertension and is easily winded. His family can’t afford private care, Del does not qualify for Medicaid, and Medicare covers home care only for limited situations and periods of time.

Del refuses to go to a nursing home and doesn’t want to move in with Debbie. So much of the work caring for her has fallen to Jimmy, who is an only child.

“He doesn’t mind.  He never complains,” Del says.  “I took care of him when he was a baby, and now he takes care of me.”

Jimmy is one of more than a million children providing some or all care for ill family members or special needs siblings. According to a survey by the National Alliance for Caregiving and the United Hospital Fund in 2005, at least 1.3 million children ages 8 to 18 help care for a sick or disabled relative, with 72 percent of these caring for a parent or grandparents.

A Growing Problem, Yet Largely Hidden

There are no recent national studies, though as many as several million youths could be caregivers now, says Connie Siskowski, Ph.D., president of the American Association of Caregiving Youth (AACY), an advocacy and resource organization. Demographics may be pushing more children into the role: People are living longer with chronic illness, and single-parent or multi-family households are increasingly common, as are grandparents raising grandchildren.

While adult caregiving has gotten more awareness, the issue of a child helping is less known, says Suzanne Mintz, co-founder and CEO emeritus of The National Family Caregivers Association.

Jimmy Braat

“It’s always been assumed that family cares for family, and that, of course, is true. But in the modern age when medical science performs miracles that help people live so much longer, it’s not just kids helping dad or helping grandma, it’s them actually doing medical procedures.  And it’s not just for a couple of months, it’s for years and years,” she says.

A Born Helper

Jimmy’s caregiving journey began at the age of nine, when he began helping to care for his great grandmother, who suffered from dementia. He brought her newspapers, ground her pills into applesauce, and warmed meals in the microwave. She passed away when he was 13.

“He’s always been such a sweet little boy,” says Debbie Braat. “When he was real little, around six years old, I had to have surgery on my feet — one foot one year, one foot the other year. When I had the surgery I couldn’t walk around at all, but he would get up and he would do the laundry. He couldn’t even reach the washing machine, but he would pull himself up and sit on the machine.”

Of his grandmother, of whom he has always been close, Jimmy says, “She’s a difficult person. It’s not really her illness. She’s got a one-track mind. My trick is, when me and her start to argue, I just put my headphones on.”

Still, he says, ” I had a period of time when my grandmother was in the hospital for a few months and on life support for two of those months. The hardest thing for me was seeing her on life support for the first time.”

Jimmy is about three years behind in high school, he says; according to a 2006 report sponsored by the Bill & Melinda Gates Foundation, some 22 percent of high school dropouts surveyed left to take care of a family member. Now he takes high school classes through an online course offered by Palm Beach County. He is often so tired that, he says, “I end up passing out in at least one of my classes each day.” He also suffers from depression; research suggests caregiving raises the risk for depression and anxiety in child caregivers.

When he does have free time, Jimmy joins activities like camping, cooking classes and dinners sponsored by The Caregiving Youth Project in Palm Beach County, Fla., a pilot program that offers kids ages 10 and up who help family members care instruction, tutoring, home visits and activities. Though the AACY hopes to start a national network, to date it’s the only support program of its kind.

Jimmy will care for his grandmother, he says, “Up until the point where she passes away. There’s no exit strategy. Besides, there’s no one else to do it. “

For more on the issue of caregiving, see the TEDMED Great Challenges web site.