Monday, August 31, 2009

Maddy has Crohn's Disease--an ethics tangle

Quite by accident, I discovered that one of my blogs on HR 3200 appeared as a link on a college reading list on medical ethics (so if you commented, you‘re there too). That got me interested in the program and I began browsing some of the other offerings. Some true to life scenarios were presented for students to discuss, and I thought this one about Maddy who has Crohn’s Disease was very interesting. I have a neighbor with Crohn’s (she’s 92, so has managed it well living longer than my parents who had no significant health problems until the final month of their lives at 88 and 89), and I used to work for a dear woman who had IBD (irritable bowel disease) which can be very debilitating.

Reading through the ethical responses by the hospital, her doctor, her friends, and society at large was really interesting. But there was no response from Maddy‘s point of view. What should have been her ethical response as a 25 year old to her illness, which she had known about since junior high school?

According to the information given, she had graduated from college, during which she’d had very few flare ups, but now had become very ill with frequent problems brought on by skipping doctor’s appointments and not eating right, worsened by moving away from home (just a guess, but Mom probably watched her diet). She’d become dehydrated and malnourished, terrible conditions for someone with Crohn’s, but the underlying assumption of the writer of the problem was this was caused by lack of insurance. She then required hospitalization, IVs, antibiotics, and surgery, which she didn’t choose. Her parents in the meanwhile (but not at the beginning) were experiencing financial set backs and she didn’t want to bother them with her problems. So, if I read the responses correctly, the problem then falls in the lap of the doctor, the hospital, the friends, and society at large.

Here’s my thoughts about Maddy.

1) If a person has a chronic or debilitating illness, she may have to modify her life’s dreams and career options. Her chosen field didn’t look promising to me either for income, or for a reduced-stress life (very important for these types of diseases). I don’t know what you do with a degree in “health psychology” but having worked in academe most of my professional life, it sounds like a way to keep the faculty employed. There are thousands of programs at the university level that lead nowhere except to frustration, low-income and living on credit.

2) She, her parents, and doctor had about 12 years to plan for this event (living on her own), knowing her student or parents' insurance would end, and that employer insurance may have requirements about pre-existing conditions.

3) She most likely, although it doesn’t say, became careless about the flare-ups since they had been rare before she graduated. Young people suffer from lack of learning from hindsight and planning with foresight.

4) She began missing doctor appointments and meds after graduation, rather than giving up other things in her life. This has a huge snowball effect. I don’t know what these could have been, and I know it sounds cruel and unAmerican to say “drop cable, cell phone, hair appointments, or nights out with friends“ so you can pay for your meds, but if you know the consequences of these missed steps, you can’t expect to stay healthy.

5) As a result of her own bad decisions, she is forced to return home a sick woman who will get even sicker to live with her family who is already under terrible stress from her father’s lost job and two younger children to support.

[Santa Clara University, a comprehensive Jesuit, Catholic university located in California's Silicon Valley, offers its more than 8,000 students rigorous undergraduate curricula in arts and sciences, business, and engineering, plus master's, Ph.D., and law degrees.]


mdoneil said...

Simply amazing. Everyone else find an ethical duty where I see that none exists.

The friends have no duty to tell her parents, and in fact should not. Maddy is an adult and can make her own decisions.

The hospital has no duty to keep her hospitialized, they cannot keep her from signing out AMA. If she asked the hospital would certainly have made financial arrangements with her. I know CABG patients paying ten dollars a week four or five years out to pay off their (reduced) bills.

Her doctor has a legal obligation to continue you her care, but the doctor does not have an obligation to work for free. Again simply talking with the doctor or his staff will probably result in mutually agreeable financial arrangements.

Maddy has many ethical obligations which she has failed to meet. She has an ethical obligation to maintain her health so as not to become a burden on her family or society. She has an ethical obligation to be honest with her healthcare providers about why she is going against their advice, she has an ethical obligation to society to make sure the care to which she has access be paid for - she has an ethical obligation to insure her self.

Sure I'd love to finish my PhD, but I have to work to pay my bills which include insurance. Failing to provide for yourself when you are able - and Maddy is certainly able as she can do school work and part time employment is an ethical failing.

Maddy can make the greatest difference here, but she does not wish to. It is all a matter of choice, Maddy chooses to get a graduate degree, not take care of her health. Maddy chooses to be a burden on others while satisfying her personal goals.

Life is tough, there are plenty of things she could have done differently, and there are ethical lapses. However what everyone seems to fail to see is the patient is the person most responsible for their health. Not the doctor, not the hospital, not friends or family, but the patient herself must put her health first. Unfortunately Maddy has not done so.

Norma said...

Great response Matthew, and with your experience as a nurse, I'm sure you've seen it all.

Jimmy said...

Crohn’s disease causes chronic, excruciating inflammation of the intestines. Understanding that which food will help to elicit the symptoms would assist in adequately managing oneself from the disease by decreasing the symptoms. By following a diet chart will help to overcome gastrointestinal discomfort symptoms.

MasterG said...

I afraid to be crohn's disease. I have some symtoms. I need to see doctor now.