O-Mama-Care II
"Hey, this is the only mom I got!"
by Brian Wright

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Background

Phyllis Wright, aka Mom (84), has been undergoing hemodialysis at a facility associated with St. Mary Mercy Hospital in Livonia, Michigan, since roughly October 2009. It's a treatment for latent polycystic kidney disease (PKD), which runs in our family—my mom's mother had it, too, and (without dialysis) lived to be 92. Mom is covered by Health Alliance Plan, which is a PPO associated with Henry Ford Healthcare System, whose physicians and personnel are paid by the plan for Mom's medical treatment.

At her session on Wednesday, 11/10, a clot had developed in her fistula—a blood vessel for access to the kidney machine surgically placed between the arterial side of her arm and the venal side—and dialysis could not be performed. So we had to take her to Henry Ford Hospital Detroit for vascular access surgery to remove the clot.

Thursday 11/11

Based on a handwritten note given to my mother by the lead technician at St. Mary, I drive her down to Henry Ford by 8:30 a.m. The note gives us a department—Vascular Access Surgery (VAS)[1]—and the building location, in the basement, and office number, that's it. Deposit Mom. I've brought my laptop, so I can do some work while she is being attended to. Up to the first floor for me.

In a couple of hours, my cell rings. Nurse (RN) 1 leads me into the examining room where Mom has been prepped. But we learn that Dr. 1 has concerns about her potassium (K) level, approximately 0.3 higher than the limit he considers all right for surgery. He decides not to perform the out-patient surgery. I question his decision. He gives me the "potassium is used for lethal injections" argument.

She's sent to Emergency (EM) triage, of all places—Dr. 1/RN 1 give us a vague notion of what's in store: some blood tests, get the K down, and eventually admit Mom to the Nephrology-Dialysis (ND) ward.

I go with Mom down to EM, and help with all the entry questions. Nurse B, who seems to be a routing nurse, is quite considerate, but it seems instructions from VAS have not been posted down to EM, EM has a call in to VAS. To whom? No matter, she gets processed to a room where less-critical patients are found. It's a waiting game. Why is she here? Who sent her here? Where is she going? Will a doctor come by and tell us whassup?

I make some calls to VAS. No answer. So I walk over there, and RN 1 sees me. She doesn't know anything; I have the card of the head guy Dr. 2. I tell her, "I want Dr. 2 to call me, tell me what's going on." She looks at me like I have dog doodoo on my nose.

I walk back to EM, through the metal detectors. Back to Mom's room and Dr. 3, from ND, has shown up. Also two EM women, a nurse and an NP (physician's assistant)[2], seem to be taking notice. He's good, they're good. But they seem like wide receivers in a football game who have caught a pass but don't know the coach's play.

The consensus: Mom will do blood tests in EM then be admitted to ND where she will be prepped for tomorrow: a) hope for a schedule opening for VAS declot procedure in the a.m. and b) in case they can't find a schedule opening or the procedure isn't successful, they'll install a temporary catheter in her groin for dialysis.

My usefulness is done, although no one seems to be in charge the people are friendly, probably won't hurt her or lose her. Mom is okay with them. I go home. Approx. 8:30 p.m. I receive a call from a Dr. 8[3] that she, the doctor, has successfully installed the groin catheter. I like this one's confident voice and demeanor, but she tells me her cell battery is dying and she'll call back right away. She doesn't.

Friday 11/12 thru Wednesday 11/17

On Friday, Dr. 2 (VAS Top Banana) performs declot surgery, but dialysis later that day is not successful through the fistula. Rats. [During the day when Mom is in VAS, I call from home via ND RN 4. I get Mom's room number and call her directly, also notify the relatives and friends of the family of her status/contact info. ND dialyzes her again on Saturday, I show up in the afternoon to visit, bringing her cellphone charger. Sunday is a down day, dialysis on Monday (11/15), but the fistula still doesn't work, so they dialyze through the catheter. Tuesday (11/16) a.m. it's back to VAS for Declot II, followed by dialysis, which is, finally, successful. Hallelujah!

I pick Mom up on Wednesday (11/17) after a dialysis and a catheter removal. She's weak, but ambulatory. Still, we get the wheelchair. And I drive her home.

During this six-day period, my primary point of information has been RN 4 and RN 5. And they are both exceptionally motivated and caring; I have no concerns that Mom is going to fall through the cracks. But I constantly want information about the surgery and its results, the dialysis results, and so on. The best these nurses can do is refer me to VAS NP 2, leaving her my phone number with a message to call ASAP, then finally giving me her number. It is Tuesday before I hear from NP 2. "Unacceptable, woman! This is my mom for chrissakes, and she deserves to know what you're doing!"

Lessons Learned

The main problems with HFHS (and probably other systems which are far worse) are:

Lack of continuity of care—Nobody maintains core responsibility for a patient from one process to another: patients are like cars going down an assembly line, when your operation is done, the patient is stamped and sent down the line. Next.
Lack of communication of care—Associated with (1). Nobody has fundamental Quality responsibility. Doctors make decisions that are the patient's to make in consultation with them, and the patient has to a) find out what the decisions were, and b) who made them.
Lack of integration of care—I made a list of all the personnel and departments involved in resolving my mom's relatively simple dialysis issue. 23, if you don't count office staff. The primary-care doctor has no realtime responsibility for overseeing the healthcare solution.
Lack of personalization of care—If you have a problem away from a facility, after hours, you're told to call 9·1·1. Mom practically fainted on the drive home, then suffered pretty serious vomiting and runs the next morning. I needed an explanation, not an ambulance...
Lack of "laying on of hands"—As kind as Mom's nurses were—and presumably the dialysis technicians and doctors, too—she said for the most part, lying in that hospital bed with nothing to do was like being in a Romanian orphan farm in the Ceauşescu regime.

Well, that's what I come up with for this five minutes.

Basically, I love Henry Ford Health Systems. In comparison with other systems, I give Henry Ford an 8 out of 10. The problem is not the people, or the caring, it's the nature of large hierarchical systems serving large masses of people. We need to move forward.

The ultimate solution, IMHO, lies toward "humanization and decentralization:" an imaginative, voluntary, widely distributed, neighborhood-focused, self-responsible system. Think "family doctor who does house calls" times a million, each working with his/her patients to cocreate care solutions, occasionally managing services of other medical professionals. Let's put on our thinking caps.

Oh, "turning healthcare over to the government"... not a solution.[4]

[1] Using my own acronyms for efficiency.

[2] Physicians Assistant (PA) considered sort of the "right hand man" of the doctor, a front person. I believe Nurse Practitioner (NP) performs the same role. I will refer to both as NPs. It turns out in the current health care systems, one of the main job descriptions of an NP is COMMUNICATION WITH THE PATIENT! HELLOOOOO!

[3] Yes, Dr. 8. Doctors 4-7 are ND "Fellows" whom I contact (or learn about) in the course of trying to find out what decisions are being made regarding dialysis or scheduling for VAS surgery. When a shift changes, the patient chart is handed off to the next guy.

[4] Perspective is so important. Think of the extremities of war or aggression that afflict people far more unfortunate than we: Iraqi civilians killed by the falsely pretensed aggression of the Neocons: >100,000. Dispossessed Iraqis: ~5,000,000!!! [Then how many persons everywhere who have no one to look after them or simply to hug them occasionally? We are so lucky.]