In general, I try to keep my emotions relatively in check, but I was pumped full of steroids and had a very irritating day-- and I am an insider who knows how to navigate the system. I cannot imagine how frustrating the day would have been if I did not have an idea of how to move things forward.
The recap: I arrived at the Farber on time, then waited for over an hour in laboratory services to have my blood drawn and an IV placed (apparently, they misplaced my lab orders-- again).
I then saw my provider, got a green light, and was shuffled to another waiting room where I waited for about an hour and a half before being informed that, after taking steroids, having my blood drawn and an IV placed, taking off of work, arranging my life to get chemo, and getting emotionally prepared for another round, I would not receive my infusion today due to the need for allergy clearance.
The million dollar question is: Why this was not brought up three weeks ago (when it could have been addressed in the interim) but rather first mentioned after all of these other pieces had already been put into motion?
On top of the error (which I believe to be due to what we refer to in medicine as a "Swiss cheese" effect), the nursing manager was extremely rude to me. Given the circumstances (which were the hospital's fault-- not mine), I requested that she call allergy to try to expedite an appointment. She refused-- and told me that she would send out an email within the next hour or so. She then added on that I "should not expect to hear from her today, or even tomorrow." All of this while glowering at my husband and I.
There is long-standing evidence that, when nurses, physicians or hospital systems make an error, the safest course of action is to admit it and apologize (where I work, we even send flowers!)-- not to blame the patient and to be rude. After all, this error affected a lot of people, and was quite costly (to me-- not to the healthcare system).
(A side note: My providers were excellent advocates for me, and, to their credit, bent over backwards to try to rectify the situation-- I remain extremely grateful for their excellent care and attention).
People very directly affected:
-Me
-My husband
-My children
-My nanny (who has to arrive early on infusion days)
-My nanny's husband, and her children
-My mother-in-law, who picks my son up on infusion days and makes sure he has a happy day and is distracted so he does not worry about me too much
-My boss, and co-workers
-My patients, who will now have to be rescheduled (one of whom needs pre-op clearance from me!)
-My friend from California, who is flying in to Boston, and now will not be able to actually see me due to appointment scheduling
People somewhat less directly affected:
-All of my cheerleaders (who help to get me through the day!) - my family, in-laws, friends, and all of the other people who have gone the extra mile to make me laugh or stuck their necks out to make things smoother for me
-My future boss-- I now may not be able to start on my (delayed) planned start date, because delaying chemo delays radiation which delays my move which delays my start date
.. And so on. You get the idea.
My (rough) estimation of the cost (to me and my family/friends) of this event:
- Cab ride (for me): $25
- Parking: $10
- Lost wages due to day off: $1000
- Extra childcare costs: $40
- Cost of unnecessary laboratory testing and IV placement: $300 (a guestimate)
- Cost of a round trip train ticket to NYC: $200
- Cost of delaying future patients: ????
Total one day direct cost (to patient): Greater than $1575
Note that I had been planning to go on vacation next week- and have paid for plane tickets, have a deposit on a hotel, my sister in law took off of school (to watch the kids), my dogs are being kenneled... And this estimate reflects none of that. The estimate also does not reflect a loss of wages for delay in my start date for my next job, or the mortgage that I am paying for a house I am not living in while I am getting treated.
Nor does it reflect the psychosocial costs of delaying treatment- which are not insignificant.
How I handled it:
A long time ago, one of my long-term cheerleaders gave me a card that read, "When like gives you lemons... Make margaritas." While I did not bust out the tequila, I did actually take some lemons and make lemonade on a hot summer day. I also saw my fabulous trainer, Tara, who helped me to work out my aggression at the gym, and has been a great friend to me throughout all of this.
I then got on the computer and emailed key people, and got on the phone and started advocating for myself. My husband called the patient representative (see below) and I started calling around to my other doctor friends, until I was able to secure an appointment for allergy tomorrow and look toward moving forward.
So what are your options as a patient?
1. Talk with your direct provider- see if your physician can intervene on your behalf. I also recommend contacting your primary care physician, as your primary care provider should be one of your biggest advocates (and should have knowledge of how to navigate the system). A dirty little secret is that specialists require referrals from primary care physicians to stay in business... So a little push from your PCP can go along way (because if the specialist does not respond, the specialist stops getting referrals).
2. Call the hospital ombudsperson (also known as a patient safety advocate or patient representative). The hospital ombudsman is employed to listen to patient concerns, and to communicate these concerns to the powers that be about what happened, and what could be done to rectify the situation. Typically, concerns are reported to your provider, the supervisor of the person you are filing the complaint about, and someone with in the hospital's health care quality division.
3. Ask that an official quality "miss" or "near miss" report be filled out-- these reports are typically reviewed by the health care quality division within the hospital, and can lead to quality improvement reviews, to try to get to the bottom of how the error occurred, and to determine how to stop it from happening to another patient in the future.
4. Phone a friend. Doctors have their own sub-culture and no one knows more doctors than another doctor. Furthermore, because of the way doctors get into medical school, residency, and fellowship, doctors tend to get scattered far and wide. So, if you can call one doctor, chances are s/he knows someone who knows someone who knows someone where you live. And doctors listen to other doctors.
5. If the error is really egregious, or caused you to lose faith in the healthcare you are receiving, ask for a second opinion, or transfer your care. How you receive your care-- and who you receive it from-- is always in your hands.
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