Caring for Someone with a Serious Illness, Part 2

While doctors and hospitals help manage actual health treatment, you’re on your own with making medication and treatment decisions. Get-It-Done Guy has 13 tips on caring for someone with a serious illness.

Stever Robbins,
October 1, 2012
Episode #238

In Part 1 of this series on taking care of someone with a serious illness, I discussed professional sitters and weekly action planning to relieve day-to-day pressure. Today, we’ll discuss managing medications and evaluating treatment options. Most of these tips are things I learned while caring for my mother in the final days of her life.

Unlike my colleague the House Call Doctor, I’m not a doctor. I always wanted to be a surgeon, and then I saw Mel Brooks’ Young Frankenstein, and it scared me into a more traditional career path. Accounting started to look really exciting. This episode does not give medical advice! What we’ll be discussing is how to work with your doctor when you need to make medical decisions.

Tip #1: Take Responsibility

In America, doctors are often trained to behave as if they know everything. This confidence helps inspire trust in patients. But confidence does not mean a doctor is perfect. Your doctor is not a god. Your doctor is not even a minor underling of the demon Cthulu. Doctors are human. They can make mistakes.

Unless you can afford concierge care, a doctor will spend 15 to 30 minutes to diagnose problems with the most complicated biological system we know of—the human body. My car mechanic takes longer than that to diagnose that funny noise in my car (and the car comes with an owner’s manual)!

Like it or not, you have to take responsibility for the course of medical treatment, even though you’re clearly way less qualified than the doctor. You can exercise that responsibility by just blindly doing everything your doctor says, or by taking a more active part in the medical care.

Tip #2: Take Time to Understand

When your doctor describes a diagnosis and recommends a course of treatment, take the time to understand what she is talking about. If she says, “your loved one’s hip bone somehow got connected to the head bone,” ask to see the hip bone and the head bone on a chart of a normal human body, then look at the X-rays, and have her show you where the connection is screwed up. You don’t need to understand what’s going on as if you were a molecular biologist (unless you are a molecular biologist), but learn as much as you can.

Tip #3: Read Medication Information Sheets

When you buy a medication, always ask your pharmacist for the detailed medical information sheet. Sometimes you’ll get it automatically, but other times you have to ask.

Read the sheet carefully. Check out the “contraindications.” That’s fancy talk for “if you have any of these conditions and take this medication, your eyeballs will explode.” My mother was prescribed medicine that would have killed her, given her condition. We found out in time by asking for and reading the medical information sheets.

Tip #4: Check for Placebo-Level Effects

The information sheet tells you how good a medication is compared to a placebo. A placebo is a sugar pill with no medicinal value. Some people respond to the sugar pill as if it were medicine. That’s “the placebo effect.” A drug is judged effective if more people respond to the drug than to the sugar pill.

If the information sheet says it works 14% of the time, compared to a placebo, which works 12% of the time, that means the medication is only slightly better than a sugar pill. If it has nasty side effects, you might want to ask your doctor if it really makes sense to give this medicine when a sugar pill would have almost the same chances of working.

Tip #5: Ask About Alternatives

In fact, always ask about alternatives. Doctors get most of their information about medications from the companies that make the medicine. Some drug companies provide weekly lunches for a doctor’s entire staff as a free promotion. They only do that because it leads to doctors prescribing more of their medicine. This is called “unbelievable, phenomenal, inordinate, extreme conflict of interest” and even if doctors have the best intentions, they’ll still be influenced by it.

By asking for alternatives, you may jog your doctor’s memory about other forms of treatment. My doctor once remembered that instead of an expensive pharmaceutical treatment for a skin condition, I could buy an over-the-counter brand of soap that would have the same effect. It pays to ask.

Tip #6: Pay Attention to Side Effects

Don’t just consider the upsides of a treatment, also consider the downsides. There’s really no such thing as a side effect. That’s just a marketing term for the wacky, fun things a treatment does that the pharmaceutical company doesn’t want you to think about. Like grow an extra head. Some side effects can be worse than the problem they’re supposed to treat. Sometimes, side effects can even include death. Ask your doctor about a treatment’s side effects, and then supplement what she tells you by reading the medical information sheet, too.

Plan for the worst, and never, ever lose hope.

Tip #7: Get a Second Opinion

For a serious condition, get a second opinion on the diagnosis and treatment. Different doctors may pay attention to different things and reach different conclusions. Do this especially if a treatment will have extreme side effects. If the doctor says “to fix your hip bone problem, we plan to amputate your nose,” get a second opinion. Without a nose, you’ll never fulfill your lifelong dreams of becoming a clown.

Tip #8: Get a Second Opinion on Lab Tests

Also look closely at lab tests. Labs are not 100% accurate, and some are much less accurate than others. If a test is super-important, ask your doctor how accurate it is to begin with. Then ask how accurate the lab they use is. Consider asking to redo lab tests if it seems warranted.

Tip #9: Ask How You’ll Measure Progress

You don’t want to be giving someone you love unnecessary medication! If a doctor prescribes a treatment, ask “How will we know when this treatment is working, when it’s stopped working, and whether my loved one is getting better enough that it’s no longer needed?” If they can’t answer all three of those questions, they don’t really understand the conditions the treatment is for, or how to measure those conditions. It’s time to ask for a second opinion.

Tip #10: Create a Medication Log

If you’re dispensing medication, get two notebooks. The first is your medication log. Every time you dispense meds, write down what you gave and when. Also note meals, bowel movements, and any notable events (nausea, pains, etc.). This will let you find patterns over time. You might discover, for instance, that nausea always seems to happen an hour after a certain medication.

Tip #11: Create a Medication Change Log

Your second notebook is a medication change log. List all medications your loved one is supposed to be taking, the dosages, and how frequently. Whenever there’s a change in medication, dosage, or how it’s administered, write it in the change log. If you have a nurse’s aid or other sitter helping out, review the log when their shift starts so they know what’s up.

When you put a change in the change log, in the normal medication log write “MEDICATION CHANGED—SEE CHANGE LOG” so if you forget to tell the next person on duty to check the change log, they’ll see the note when they open the medication log.

Tip #12: Consider Non-Dangerous Alternative Therapies

Western medicine is good at some things, but bad at others. So snake oil hucksters fill the gap with unproven, untested, alternative therapies. Some don’t work. Some do. Few get researched.

We supplemented my mom’s chemo with alternative therapies. Acupuncture got her pain free and out of bed when no other treatment worked. We discussed alternative therapies with her doctor first. She said, “If there’s no reason to believe it’s harmful, go for it.” We did, but only after doing enough research to be sure the alternative treatment wouldn’t do harm.

Tip #13: Never Lose Hope

People told my mom, “Be realistic. Accept your condition is hopeless.” She didn’t listen. She stayed cheerful, loving, upbeat, and relatively stable. Then I left for a few days, during which the doctors convinced her to give up hope. Her condition plummeted and she died shortly thereafter.

Yes, plan for the worst. Yes, make out wills. Plan memorial ceremonies. But never lose hope. Doctors are not gods. They cannot predict the future. At best, they can give probabilities. If there’s a .0001% chance of spontaneous remission, dwell on that.

Ultimately, we all die. But hope keeps us striving and active and engaged as long as we have it.

Be smart about medical care. Get second opinions on diagnosis, lab tests, and treatment. Read your medical information sheets, and pay attention to side effects. Use a medication log and a medication change log, plan for the worst, and never, ever lose hope.

This is Stever Robbins. You can find this episode’s transcript at getitdone.quickanddirtytips.com

I help successful businesspeople create strategies that grow their bottom line, by looking at their organizational capabilities and finding options that work with their strengths. If you want to know more, visit http://www.SteverRobbins.com.

Work Less, Do More, and have a Great Life!