At the Foot of the Bed
I read an article last week in NY Times that reminded me of the importance of being prepared to negotiate with health-care providers on your own behalf or on behalf of someone you love. When facing a health crisis, we are understandably often completely dependent on our doctors to make informed health care decisions.
Yet, these are the days of medical specializations and harried doctors. The impact? Very few of us have a General Practitioner “at the end of the bed” as my dear friend, a physician herself, describes it to help us navigate the treatment choices we face and hard decisions we must make when a serious health situation arises.
So, like it or not, you must take charge of the situation. Some ideas:
- Learn as much as you can about the situation.
There is a wealth of information on the internet ─ so much that it can be overwhelming so stay focused on well known and respected health sites. Start at the National Health Information Center and drill down from there. A commercial but well credentialed site is WebMD . Use this data as a way to create a list of questions you’d like your doctor to answer, nothing more. Your doctor is the professional, not you, no matter how excellent your research skills are.
- Two sets of ears are better than one.
If you’re the patient, ask a friend or relative to accompany you to important doctor’s appointments so that you can both listen to the information.. If you’re the helper, be sure to allow the patient privacy by sitting in the waiting room during examinations but offering to sit in the doctor’s office while the doctor discusses the results.
- Bring a list of medications the patient is taking.
- Take notes when the doctor speaks ─ chances are you’ll need to refer to them later.
- Ask your doctor to repeat or further clarify information you did not understand.
- Ask for a copy of your test results and other records.
If you need to see other doctors, this can save you time and money as well as the possible aggravation of repeating tests unnecessarily.
- Pick one physician whose specialty is most relevant and ask him/her to coordinate with the other doctors involved to be sure they are all in the loop as needed.
- Don’t be afraid to tell your doctor you are going to seek a second opinion if you feel you need one.
This is not an affront to your doctor, competent doctors encourage such due diligence.
- Don’t be afraid to say “no” to a test or procedure you aren’t convinced will help.
Keep an open mind but don’t just go along to be a “good” patient.
- Keep a journal with as much detail as you can.
While it may seem as though you’ll never forget, chances are that a written record of dates and symptoms, etc. will come in handy.
As scary and intimidating as it is, nobody has more invested in your health or the health of your loved ones than you do. Negotiate the best possible outcome.
All of these are very valid points, Carol. My father has recently been diagnosed with non-Hodgkins lymphoma and while in the hospital, I hauled out my notebook every time the doctor came into the room. I asked questions about everything and noted everything down, not only to be able to keep the rest of the family up to speed but also to have a record of what was said so that the next time a potentially different doctor came in, I could refer to what had been said and done in the past.
Also, with my father in his early 80′s, I found out that his interpretation of things weren’t always correct. A day or so after being admitted to the hospital, he told me he had gotten his discharge papers. Knowing that’s not what the doctor told me, I took the papers to the patient advocate. Turns out that the papers were from Medicare, advising my dad that if he felt he was being discharged too soon, he could argue the fact. I’m glad I got that straightened out, as my dad was ready to start packing his bags to go home as soon as he saw the words “Discharge” on the papers.
After my own run-in with the medical field and a false negative Pap test that missed precancerous cells many years ago, I’ve learned to ask every question and not allow myself to be pushed aside or dismissed.
Thank you for a very relevent and informative article!
Comment by Laurie Turner — November 2, 2009 @ 4:55 pm
Very good advice. Remember, we are all responsible for our own care and for our own decisions.
Comment by Marilyn Ziemann, CPA — November 2, 2009 @ 5:11 pm
Very good advice. I’ve learned a lot given that I myself was diagnosed with MS back in 97 and my 2 year-old daughter was born with hydrocephalus and has an entire battalion of specialists. When you have multiple doctors, I recommend a simple spreadsheet, with a tab for each doctor. Have a column for a date, name, subject, and conversation notes. I print out each doctor’s tab, and keep it in a binder and bring that binder to every appointment. I write handwritten notes during the appointment and then later add them to the spreadsheet. That way you’ve got everyone’s notes in one place. I couldn’t manage without it.
Also, keep notes on your symptoms, especially if they are transient, so you can establish a pattern. Nothing is more powerful than coming armed with specific information in terms of helping speed a diagnosis.
Thanks.
Debra
Comment by Debra Curran — November 2, 2009 @ 6:43 pm
Thanks to you all – you’ve added important points. Laurie. I know what you mean regarding people misunderstanding written communications, particularly elderly people who are afraid of words like”Discharge”. And Debra, I love the spreadsheet idea! Marilyn, you are so right – we can’t delegate these things. It’s up to us.
Comment by Carol Frohlinger — November 2, 2009 @ 6:57 pm