Growing Up Sick

A teacher asks Doctor D about a diabetic teenager in his class:

“His sugar readings are often over 400. His mom says this is normal. Can this be normal?”

Before we start Doctor D has to throw out his usual disclaimer: No medical treatment advice shall ever rear it ugly head in this post! Okay, I feel so much better! Now on to normalcy:

What is NORMAL?

a) A state of harmony within the body and mind that leads to health and well-being.

b) The typical or status quo for a person; the way things usually are. [eg: “Doctor D’s weekly posts are normally late.”]

c) WTF? There is no such thing as "normal" for a teenager in the clutches of puberty.

I’m guessing that mom meant something between B and C.

The Trials and Tribulations of Puberty:

The teen years are some of the toughest in a life. You suddenly realize that you are no longer a child and find yourself drowning in a sea of raging hormones. You don't want to hear your parents advice or follow their rules, you are desperate to fit in with your peers, you feel invincible, and you can’t wait to take risks (especially the ones adults tell you not to). The only people more stressed than teenagers are their parents.

Now add to a chronic illness to all the “normal” teen drama and you have a really volatile mix! If having a chronic illness and being dependent on doctors, tests, and treatments can push even a stable, well-adjusted adult to the limit, just think of the havoc it can wreck when you are 13!

Type I Diabetes is a perfect example of this:

Patients are often diagnosed as small children. They often don’t remember a time they weren’t constantly counting carbs and taking insulin under their parents direction. Doctor D has seen it again and again: a diabetic kid does fine until about 13 when they suddenly decide they have to live a “normal” life. The teen acts as if there is no illness and begins ignoring all the rules that keep them alive. In my experience chronically ill teens have difficult identity issues and can be in dangerous denial about the seriousness of their illness.

Parent during these times get frustrated and burnt out. The harder they try to manage their teen's illness the more the child resists.

"I SAID take your insulin!!!!"

These power struggles between parents and teens happen in most homes, but when the teen has a serious chronic illness the tension can rise astronomically!

So why did mom say everything’s okay?

Parents of chronically ill teens often feel helpless and very guilty that they cannot protect their kid's health the way they used too.

A teacher asking about his illness could be a very sensitive issue for the the teen and the parent. I can understand the mother just answering "oh that's normal for him" to avoid discussing the extreme stress and difficulty of the situation.

Sometimes when everything’s going to hell in a handbasket it’s easier just to pretend we’re all fine.

So you really want to help?

But if you know things really aren’t fine, and you’re someone like a relative, teacher, doctor, counselor, friend, etc. you really should try to help the frustrated family.

Here’s how you offer assistance without making things worse:

1) You must be sensitive to what the teen and the parents are going through. If you act like you are just going to ride in on your white horse and save everybody you will get shut out by the parents and teen pretty quick. (Doctor D has learned that one the hard way!) Start by acknowledging how difficult the situation is to both the teen and the parent.

2) Make it clear that you will protect their privacy. The teen should know you won’t embarrass them in front of their peer by exposing their illness against their will. The parents should know you won’t shame them as bad parents because their teen’s care isn’t working.

"Embarrassed? Us? No way! We're like the the smoothest guys we know. ...did we seem embarrassed? Because we totally aren't."

3) Talk to them like they are normal. (Normal definition A) Even sympathy can be irritating and isolating for a family dealing with chronic disease. Talk to the teen and the parents like you are talking to normal people dealing with normal problems.

4) Use your strategic position. Parents and teens often struggle to a stalemate. Being neither the parent nor the teen offers you a huge tactical advantage for breaking the deadlock. Let’s say you’re an adult such as a teacher or doctor. Sure you’re authority figure, but you aren’t the parent therefore the teen is much more likely to listen to your advice about sticking with treatment. So many of the stresses in a teen’s life are social so if you are in or around the social environment you may be in a unique position to explain the stresses the kid is going through to the parents. If you are a peer then you can help the teen "normalize" their chronic illness and see that it’s not something to be ashamed of.

Being a semi-independent semi-adult is a weird state that strains the therapeutic partnership with the parents that previously worked so well for the chronically ill child. As an outsider you can help both parties create the new strategy that will help the young person manage their disease for years to come.

5) Be patient. Unhealthy patterns usually don’t straighten out overnight. Nor do strained relationships between chronically ill teens and their caregivers. Often breakthroughs are followed with setbacks. Take the long view and remember the tumultuous teen years don’t last forever.

Thanks to this awesome reader for caring about his chronically ill student!

Doctor D always enjoys hearing your thoughts in the comments.

Have any of you worked with chronically ill teens or their families?

I know some readers have had chronic illnesses since childhood. How did you successfully navigate your teen years?

Dr. D's Guide to Killing Your Loved Ones

A very different question this week:

"What can I put in someone's IV that will kill them fast?"

Now don't start judging yet...

This person was writing out of compassion not hate. Someone they love has a terminal illness and asked them to do this if the pain got too bad. (Think: Clint Eastwood in Million Dollar Baby)

It is a hard question. I feel for the person who wrote because I have been in this situation many times.

The Moment of Truth

There is the moment when doctors say, "I'm sorry, but there is nothing we have that will stop your illness. The disease will win shortly and you will die."

We are all going to die one day—many of us from illnesses that are long and painful. Everyone mentally acknowledges this as a concept, but when you are on the receiving end of such news it still hits you like a ton of bricks.

It is not uncommon for people to get in a very dark place after this news. Despair, fear, and hopelessness are understandable emotions given the circumstances.

Doctor D is by no means the final word on such a heavy topic, but perhaps I can offer some perspective from a doctor who has accompanied many patients on that difficult final path...

A Cry for Help

Depression is miserable. Anyone who has depression can attest that the mental anguish of hopelessness can be just as terrible as the worst physical pain. Often depression is triggered by traumatic life events.

The good news is that depression is not the end. Most people recover from depression, especially depression that is due to horrible news.

We all work very hard to convince a suicidal but otherwise healthy 20 year old that life can be better and their depression can be treated. Why should we not similarly address the depression of terminally ill patients? Whether someone's life will be decades or days they can live to the fullest when supported by people who love them.

Often when a dying person asks someone to kill them it is a cry for help. In their despair they are asking, "Am I worth anything anymore?"

The answer they need to hear is, "Yes, you are still worth everything to me! I may not be able to save your life, but I will cherish and honor you to the very end."

Every terminal patient that ever asked me to die, they later expressed to me their joy in life and how much they value their time once they had made peace with what was happening. Depression can be treated allowing people to pass with a peaceful heart.

Do not doubt the value of a human spirit, even during the final hours! Doctor D once watched a dying woman do more good during her last day of life in a hospital bed than he has done in all his years of practice.

Fear of Pain

Hurting sucks. We all hate pain and want to avoid it. The thought of dying in pain is intolerable even to consider. And a lot of fatal conditions are also very painful. Many people who otherwise are at peace with dying might contemplate suicide to avoid the pain at the end.

I believe that the field of Hospice is perhaps the finest breakthrough medicine has made in recent decades. Hospice is care for those with terminal illnesses.

Hospice is the art and science of comfort, and as a discipline they have made amazing discoveries in the treatment of people in the dying process.

There is no reason that anyone with terminal illness needs to die alone and in pain these days.

It is sad, but many people still don't know about Hospice. (I guess it's because they don't have their own TV dramas like every other field of medicine. I suppose the ratings wouldn't be good for a medical drama when the patient dies every episode.) Many patients seem shocked when I tell them there are teams of medical professionals that are skilled at managing every aspect of care at the end of life.

Not only do they insure you don't physically suffer, but they address the emotional and spiritual pain of facing death as well. Hospice patients are able to pass in peaceful environments or even in their home. There is support for the family as well. And yes, insurance does cover it.

Many patients are skeptical if Hospice can really deliver.

People figure that if fighting an illness was miserable, then loosing to it must be torture. Back in the old days that may have been the case, however, hospice has an advantage: they aren't trying to cure you. The very thing that seems like the problem they use to create solutions. Without needing to cure anything they can avoid any procedure that causes pain, and they don't have to avoid treatments that might not be good for your illness because fixing your illness is no longer the goal. Your comfort becomes the ultimate goal.

I have never seen a hospice patient die in pain.

Some patients wonder if they can trust the doctors and nurses involved with Hospice to really care about their pain. "Aren't a lot of doctors jerks who enjoy hurting patients who complain too much?" I admit, there are some callous doctors, but I have yet to see a single one involved in the hospice system that wasn't about as kind as a human can be.

Please don't touch the IV!

So in response to the question: Your loved one is asking for your help, but it is important to recognize help they need. Putting down your loved one like a dog is not the solution—despite what Clint Eastwood says.

Love, support, respect, and connecting them to resources that can help them through this difficult time is the right and humane approach.

Doctor D always loves to hear your thoughts. Have you ever had someone you care about feel this way? Have medical professionals ever wanted to help someone die?

Anyone have any experiences with Hospice?

I realize that suicide is a difficult topic with lots of emotion on all sides. Please share opinions and discuss with respect.

Doctors and Abuse

An email follow-up question from the Review Of Systems post:

I don't understand why they ask, "Have you ever experienced physical/verbal abuse?" This doesn't have anything to do with establishing a diagnoses. What's the point?

Doctor D doesn't enjoy asking prying personal questions. It makes everyone uncomfortable, but this is a question that doctors should be asking more often.

Medical professionals do a terrible job identifying people in danger from family violence. Statistics show that people who seek more medical attention have higher rates of abuse than the general population. A study found 1 in 3 females who visit emergency rooms have been recently abused. Doctors usually just don't find out. We may do a great job protecting someone from Hypertension, while the biggest threat to their health is the person with whom they live. Doctor D knows he has missed opportunities to help patients in dangerous situations. Sometimes simply discussing abuse can be a step towards connecting to resources that save lives.

Because doctors do such a crappy job at this, we are frequently reminded to ask everyone about domestic violence. Doctor D must admit, he is still pitiful at broaching these questions. It makes people uncomfortable when doctors ask, and doctoring is already an uncomfortable job. You expect us to be friendly and trustworthy while asking about how much you really drink and sticking our fingers in your orifices. It makes for awkward interactions!

Asking such questions in a trusting doctor-patient relationship can be very useful, and usually a patient will understand the doctor has good motives. The reader who emailed Doctor D was asked on a paper questionnaire. Sounds like the doctor was trying to follow the recommendation to ask while avoiding the awkward conversation. Unfortunately it shifted all the awkwardness to the patient and also confused her. I also imagine the paper-based format won't uncover many cases of abuse, because patients may hesitate to disclose this on a form.

I think this reader's doctor had good motives, just an ineffective approach. Doctor D personally apologizes for doctors. We all do a lousy job at discussing these sensitive topics. It is harder than you think. Please be patient with our fumbling attempts at difficult questions.

A question for you:
What is the most uncomfortable question a doctor every asked you? How did you respond? You can comment here or e-mail Doctor D.