Top 10 Things to Know When Helping a Loved One Deal with a Big Medical Issue

Tuesday, September 10, 2013 at 10am
By John Friedman

Most of us, at one time or another, will help a loved one deal with a serious medical issue — help guide our loved one through a big, gnarly medical journey involving hospitals, doctors, nurses, big medical machinery, constant beeping sounds, tubes everywhere, constant blood draws, yucky bed pans, clean white walls . . . the whole nine yards.

It is a journey like no other, and it can be one surprise after another for first-timers.

Today’s Top 10 List can help you know what to expect when embarking on that sort of medical journey, and provides some tips about how to be the best guide you can be for your loved one as s/he embarks on this big-deal, wish-this-wasn’t-happening-to-me journey.

(There is also a longer, more fancifully-languaged version of this piece here)

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Top 10 Ways to Help Loved Ones Go Through a Medical Journey

1. Make Sure that You Have All the Information, and that Everyone Who Needs It Does Too.

The Internet has had a barely noticeable impact on the medical world, so there is no big database in the sky serving as a repository for the information everyone serving your loved one needs. You need to be that database. Make sure that you get copies (paper-based or scans or whatever) of everything you possibly can (lab results, medication lists, etc.), and then make sure that the folks who need that info to best serve your loved one have it too.

2. Prepare Yourself for the Busy Doc.

It is a sad but near universal truth that doctors are on the clock, and have a limited amount of time to give to you. Set your expectations accordingly, and seek out those who know almost as much as the docs but who are less time-constrained, such as nurses and physician’s assistants.

3. Have a List of Questions When Speaking with a Busy Doc.

As a corollary to number 2, when meeting with a doctor always have a list of questions you want answered.

4. Always Finish a Doc Conversation with a Blunderbuss Question.

Save time at the end of every conversation you have with a doctor for this question uh-one-and-uh-two: Are there any questions I would have been smart to have asked, but didn’t? What are they and what are the answers?

5. Prepare Yourself for Imperfection.

The medical services industry is quite imperfect. It is, by its nature, complex, because the human body is, by its nature, complex, and complexity, by its nature, breeds errors. So do people, and there are lots of people involved. And, as noted in Number 1 above, the information systems those people are using are about 25 years behind the times. So do your best to help everyone involved avoid imperfection, but know also that you, yourself, will be imperfect at this task.

6. Prepare Yourself for Ambiguity.

Along with all that complexity and imperfection comes difficult decision-making. There are few questions that lead to yes/no, 2+2=4 sorts of answers in this realm. Enjoy them when they come your way, and set your expectations for most of the decisions in front of you involving a balancing of competing factors of pro and con. Know also that two doctors will often disagree among themselves on what the best course of action is, and that many (most?) doctors will not tell you what they think you should do, and will not tell you what they would do if they were in your shoes. Expect these things and you will be less put out when they come your way.

7. Prepare Yourself to Be Pushy When You Need to Be.

You need to bring both your biggest bulldog and your most charming self into this arena, and be prepared to use both as the events warrant. Most people you are interacting with will have their heart in the right place, but some will be rotten to the core. Most will be competent, but some will be idiots. Most will be in a right frame of mind, but some will have woken up on the wrong side of the bed. Bring whichever of your behaviors to bear on all of these folks that will get your loved one the proper attention as quickly as possible. Above all, get pushy and squeaky-wheely instantly when something is not right. Do not hesitate, and do not assume that things are going as they should be if you sense that something is off.

8. Divide the Tasks.

Your loved one has one main task: to sit there and lie there and be poked and prodded and to simply be the patient. Most patients want to do a lot more — they want to know exactly what’s going on, they want to make decisions, etc. — and that’s great. Your task is to do everything else, and it is especially your burden to run interference and to shield your loved one from 100% of the unpleasant raise-a-stink sorts of things.

9. Pace Yourself.

Your loved one is going through something not great, but so are you. Cut yourself some slack, and make sure that you can get away from it all when you need to. The medical world has a concept of “respite” for caregivers, which acknowledges that caregivers need time off on a regular basis. Make sure that you do not run yourself ragged — physically or mentally — and that you give yourself adequate respite.

10. Be in Action.

Most medical problems worsen with time. Help your loved one face reality and, if necessary, be a gentle or even not-so-gentle nudge to get your loved one the care s/he needs.

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Great things happen through medical journeys. Patients usually end up far healthier at the end of the journey than at the beginning. Keep this in mind, both for yourself and for your loved one.

Remember also that, by being prepared throughout the journey for imperfection and ambiguity and busy docs and information vacuums and the like, you’re apt to be the best guide possible for your loved one.

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