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Death By Stubbornness: What’s A Doctor To Do?

Over the years that I’ve worked in acute inpatient rehab centers, I have been truly vexed by a particular type of patient. Namely, the stubborn patient (usually an elderly gentleman with a military or armed forces background). I know that it’s not completely fair to generalize about personality types, but it seems that the very nature of their work has either developed in them a steely resolve, or they were attracted to their profession because they possessed the right temperament for it. Either way, when they arrive in the rehab unit after some type of acute illness or traumatic event, it is very challenging to cajole them into health. I suspect that I am failing quite miserably at it, frankly.

Nothing is more depressing for a rehab physician than to see a patient decline because they refuse to participate in activities that are bound to improve their condition. Prolonged immobility is a recipe for disaster, especially in the frail elderly. Refusal to eat and get out of bed regularly can make the difference between life and death within a matter of days as leg clots begin to form, and infectious diseases take hold of a body in a weakened state. The downward spiral of illness and debility is familiar to all physicians, but is particularly disappointing when the underlying cause appears to be patient stubbornness.

Of course, the patient may not be well enough to grasp the “big picture” consequences of their decisions. And I certainly do not pretend to understand what it feels like to be elderly and at the end of my rope in regards to prolonged hospital stays. Maybe I’d want to give up and be left alone too. But it’s my job to get them through the tough recovery period so they can go home and enjoy the highest quality of life possible. When faced with a patient in the “wet cat” phase of recovery (I say “wet cat” because they appear to be as pleased to be on the rehab unit as a cat is to being doused against their will), these are the usual stages that I go through:

1. I explain the factual reasons for their admission to rehab and what our goals are. I further describe the risks of not participating in therapies, eating/drinking, or learning the skills they need to care for themselves with their new impairments.

2. I let them know that I’m on their side. I understand that they don’t want to be here, and that I will work with them to get them home as soon as possible, but that I can’t in good conscience send them home until it’s safe to do so.

3. I give them a projected discharge date to strive towards, with specific tasks that need to be mastered. I try my best to give the patient as much control in his care as possible.

4. I ally with the family (especially their wives) to determine what motivates them, and request their presence at therapy sessions if that seems fruitful rather than distracting. (Helpful spouse input: “Mike only wants to walk with me by his side, not the therapist.”)

5. I ask loved ones how they think the patient is doing/feeling and if there is anything else I can do to make his stay more pleasant. (Helpful input: “John loves ice cream. He hates eggs” or “John usually goes to bed at 9pm and gets up at 4am every day.”)

6. I meet with nursing and therapy staff to discuss behavioral challenges and discuss approaches that are more effective in obtaining desired results. (For example, some patients will always opt out of a task if you give them a choice. However, they perform the task if you state with certainty that you are going to do it – such as getting out of bed. “Would you like to get out of bed now, Mr. Smith?” will almost certainly result in a resounding “No.” Followed perhaps by a dismissive hand wave. However, approaching with a “It’s time to get out of bed now, I’m helping you scoot to the edge of the bed and we’re going to stand up on 3. One, two, three!” Is much more effective.)

7. If all else fails and the patient is not responding to staff, loved ones, or doctors, I may ask for a psychiatric consult to determine whether or not the patient is clinically depressed or could benefit from a medication adjustment. Typically, these patients are vehemently opposed to psychiatric evaluation so this is almost the “nuclear” option. Psychiatrists can be very insightful regarding a patient’s mindset or barriers to participation, and can also help to tease out whether delirium versus dementia may be involved, and whether the patient lacks capacity to make decisions for himself.

8. If the patient still does not respond to further tweaks to our approach to therapy or medication regimen, then I begin looking for alternate discharge plans. Would he be happier in a skilled nursing home environment where he can recover at a slower rate? Would he be amenable to an assisted living or long term care facility? (The answer is almost always a resounding “no!”) Is the patient well enough to go home with home care services and round-the-clock supervision? Does the family have enough support and can they afford this option?

9. At this point, after exhausting all other avenues, if the patient is still declining to move or eat or be transferred elsewhere, some sort of infection might set in. A urinary tract infection, a pneumonia, or bowel infection perhaps. Then the patient becomes febrile, is started on antibiotics, becomes weaker and less responsive, and is transferred to the medicine floor or higher level of care. Alternatively at this phase (if he is lucky enough not to become infected) the patient might have a cardiac event, stroke, blood clot with pulmonary embolus (especially if he is a large man), kidney failure, or develop infected pressure ulcers. Any of which can be cause for transfer to medicine. In short, if you stay in the hospital long enough, you can find a way to die there.

10. After much hand-wringing, angst, and generalized feelings of helplessness the wives and I review the course of events and ask ourselves if we could have done anything differently. “If I had acted like a drill sergeant, do you think he would have responded better?” I might ask. “No dear, that would only have made things worse.” She’ll reply. I’ll see how disappointed she is in his deterioration, staring off towards pending widowhood, engaging in self-blame and what-ifs (E.g. “If we had only had more money perhaps we could have taken him home with 24 hour nursing care until he was better…” “If I had cooked all his meals, maybe he would have gained enough strength to avoid the infection…” etc.) I try to be reassuring that none of this would have made a difference, myself reeling from the failure to get the patient home.

This 10 step process happens far more often than I’d like, and I certainly wish there were a way to head off the downward spiral with some kind of effective intervention. Would it help to have a volunteer unit of ex-military peer counselors in the hospital who could visit with my patients and help to motivate them to get better? (Operation “wet cat” perhaps?) Should I change my approach and put on my drill sergeant hat at the earliest stages of recovery to force these guys out of bed? Can educating younger law enforcement and military workers about illness help to prepare them to be more compliant patients one day?

I don’t know the cure for stubbornness, but it sure leaves a lot of widows in its wake.

Bulimic Baby Boomers? New Study Reveals Eating Disorders In Over Fifty Crowd

American Medical News drew my attention to a recent study published in the International Journal of Eating Disorders. Among the surprising findings, 62% of women surveyed (all over the age of 50) said that their weight or shape negatively impacted their life, and 13.3% had eating disorders. About 7.5% of respondents admitted to trying diet pills to lose weight, while 2.2% used laxatives, and 1.2% vomited to reduce their weight (aka bulimia).

Eating disorder treatment facilities have noticed a surge in older patients, including one center that experienced  a 42% increase  in the number of women older than 35 seeking treatment at its clinics nationwide over the past decade.

Healthcare providers should be aware that eating disorders are not just a problem for young women. Women of all ages are now struggling with a rail-thin beauty ideal in a country of rising obesity rates, sedentary lifestyles, and ubiquitous junk food. And for older women with eating disorders, the health risks of osteoporosis, stomach ulcers, and cardiovascular abnormalities are much higher.

Perhaps primary care physicians should include an eating disorder questionnaire in their regular visits with boomers? We may be surprised by the prevalence of this issue, and I bet that many of our patients will be glad we asked.

When Eating Becomes Disordered

I was thumbing through the newspaper today while my teen was eating breakfast before school.  Watching her measure out a serving size of cereal “just for the fun of it” makes me a tad bit nervous, considering she doesn’t have an ounce of fat on her. I quickly searched for the health section – it gives me an idea of what my patients will ask about during the work day (such as the “swine” flu), and it can also be a good starting point for blog ideas.
The front page of the health section Tuesday had a picture and quote from a beautiful teen who had died of bulimia several years ago.  She looked familiar.  My eyes scanned down to the name below the quote, and upon recognizing the name, my eyes immediately welled with tears.  She had been my patient years ago, and I didn’t know she died.  She was a great, sweet, smart teen who was well aware of her bulimia and the possible consequences.  And she died.
At the very least, eating disorders can ruin their own lives and those of their families.  And they kill.  Although statistics vary based on the study, about 0.5% to 1% of teens and women in the United States have anorexia nervosa, an illness that involves significant weight loss and food refusal.  About  1% to 3% of young American women have bulimia, a condition that includes regular binging and purging.  Over 1 million males have an eating disorder and the numbers are climbing.  Eating disorders are difficult to treat, especially once a pattern has been established and it has become a “way of life.”  The earlier they are recognized, the more likely treatment will be successful.
These days, children have unrealistic expectations of what they should look like and how much they should weigh.  Think about it.   Their role models have changed dramatically over the past several decades.  Girls and teens are exposed to ultra-thin, beautiful women wherever they turn – on TV, in magazines, music videos, and  movies.   And if that weren’t enough, moms, aunts, sisters and other teens and adults they know talk about food all the time – about eating too much, counting their calories, watching their weight, feeling “fat.”  It’s no wonder that almost one-half of first through third grade girls want to be thinner and that over 80% of 10 year olds are afraid of being fat!
Our country’s obsession with food and it’s trickling down effect is readily apparent when we look at the results of the Youth Risk Behavior Survey for middle schoolers, a survey conducted in 10 states in 2005 (see end of blog) .  By 6th grade, almost half of the students surveyed were trying to lose weight (even though only 14 to 18% were actually overweight), 5 to 7% vomited or took laxatives due to weight concerns, and 10 to 20% didn’t eat for at least 24 hours because they wanted to lose or didn’t want to gain weight!  And we can’t forget that boys develop eating disorders, too.  They tend to be diagnosed later than girls, possibly because we aren’t expecting to see males develop these illnesses.
What can we do?  Society must take some responsibility for the large number of teens and adults with eating disorders.  Genetics appears to play a role also.  While these factors are out of our control, others are not.  First of all, we can build our children’s self-esteem and confidence with regards to their academic and moral aptitude, rather than their outer appearance.  We can make sure that we don’t discuss weight and eating around our children and that we act as good role models by eating well and maintaining a normal weight.  We can limit TV, movies, and fashion magazines in our home and spend time together as a family.  We can try to make our expectations for our children realistic and feasible.  We can watch our children and teens closely for signs of an eating disorder, particularly if they are involved in sports, such as ballet, gymnastics, and wrestling, which focus on specific body types.  And, if we are concerned about them, we can immediately make an appointment for them to be seen by their pediatrician and therapist to be weighed and to discuss any concerns.  I can assure you it won’t be a wasted visit, even if your child turns out to have a healthy weight and eating habits.  Don’t ignore signs of an eating disorder, as one of my patients did in the past.  Upon hearing that her daughter weighed a mere 70% of her ideal body weight, her mom said that she was fine and that she, too, had gone through a similar “phase” when she was a teen.  Eating disorders are real, and they kill.

Specific Results of the YRBS for Middle School Students

Across states, the percentage of students who were overweight ranged as follows:
• 6th grade: 14.4% to 18.7% (median: 18.6%)

• 7th grade: 10.0% to 15.8% (median: 14.0%)

• 8th grade: 8.0% to 14.9% (median: 13.0%)
Across states, the percentage of students who described themselves as slightly or very overweight ranged as follows:
• 6th grade: 19.6% to 26.7%
• 7th grade: 24.7% to 29.7%
• 8th grade: 24.2% to 29.7%
Trying to Lose Weight
Across states, the percentage of students who were trying to lose weight ranged as follows:
• 6th grade: 40.7% to 48.4% (median: 46.8%)
• 7th grade: 42.7% to 51.9% (median: 44.2%)
• 8th grade: 41.6% to 49.6% (median: 45.9%)
Ate Less Food to Lose Weight or to Keep From Gaining Weight
Across states, the percentage of students who ever ate less food, fewer calories, or foods low in fat to lose weight or to keep from gaining weight ranged as follows:
• 6th grade: 35.0% to 47.9% (median: 41.4%)
• 7th grade: 39.1% to 47.5% (median: 41.6%)
• 8th grade: 41.1% to 47.5% (median: 46.6%)
Went Without Eating for 24 Hours or More to Lose Weight or to Keep From Gaining Weight
Across states, the percentage of students who ever went without eating for at least 24 hours to lose weight or to keep from gaining weight ranged as follows:
• 6th grade: 10.0% to 19.2% (median: 15.6%)
• 7th grade: 13.9% to 18.3% (median: 16.6%)
• 8th grade: 18.1% to 21.6% (median: 19.5%)
Vomited or Took Laxatives to Lose Weight or to Keep From Gaining Weight
Across states, the percentage of students who ever vomited or took laxatives to lose weight or to keep from gaining weight ranged as follows:
• 6th grade: 4.8% to 7.5% (median: 6.3%)
• 7th grade: 4.0% to 6.2% (median: 4.7%)
• 8th grade: 6.4% to 8.2% (median: 7.3%)

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