Patient Advocacy in the Family

I've had a week of capital-P patient advocacy. Per my previous entry I attended the Patients 2.0 meeting in San Francisco. But I admit I was a bit distracted: I had returned home to SF following five days with my dad back east. He's recovering from a revision to a 13-year-old hip replacement. Because it might be educational for anyone reading and because it's therapeutic for me I'd like to note some of the issues we have dealt with:


Wrong Placement
Dad should have been discharged from the acute care hospital to a facility with a reputable rehab program. He had, in fact, conducted research and selected one. However, on discharge day no bed was available. He settled for his second choice, a nursing home (skilled nursing facility, or SNF).


Wrong Room
He was initially placed in a small room with only a curtain between his bed and that of a man with cognitive impairment. Because the other patient was considered at risk of  falling he was outfitted with a shrieking device meant to summon the staff if he tried to walk. Unfortunately the staff response was lackadaisical at best. Dad was subjected to sustained shrieking. Night and day.


Wrong Meds
Somehow my father arrived at the SNF with a prescription for narcotic pain medication -- which he rarely needed -- but no scrip for acetaminophen. It took two days, a charge nurse and a social worker to fix that.

Wrong Space-Time Continuum
A truly "down-the-rabbit-hole" moment occurred when the SNF "lost" my father during a room change. Second Floor nursing admin said he was on the First Floor. First Floor said he wasn't -- even as we stood together, looking at Dad sitting forlornly in his wheelchair. What First Floor meant was that his chart, his orders and the responsibility for him had been transfered to Second Floor. Although his bed had been stripped, no one had answered his call button. No one had arrived to help him wash or shave. No one put clean sheets on the bed so he could relax back into it and no one wanted to take responsibility.


Wrong Answer
We asked for an ice pack to help relieve the pain of Dad's surgical site. None were available upon first, second, third request. Finally I found the cafeteria's ice machine and filled up a ziploc bag for him.


Wrong Risk Management

Hand hygiene was sorely lacking. Attendants frequently failed to wash their hands or put on gloves. Their job is made more difficult by a paucity of dispensers for hand-sanitizer. We brought our own to keep in the room.


Wrong Technology

One night the phones stopped working. Because he rarely uses and didn't have a cel phone with him, we couldn't reach Dad until he called later the next day.


Wrong Therapy
MY biggest problem was this: even though he is two weeks post-op Dad hasn't walked for more than three minutes. That's just wrong.

SNF policy is designed to prevent falls, which is admirable, except when it's inappropriate. I battled to see his surgeon's orders. After a few days (no one works in PT on the weekend) I saw that Dad was restricted in the amount of weight he could put on his affected leg. The SNF used this as an excuse to prohibit Dad from walking with his walker. Until that ruling he had eagerly and nimbly taken short walks in the hallway (Dad has been a gym rat for years). When the authorities from the Physical Therapy Unit forbade it, he compliantly reverted to sitting in his wheelchair.


I contacted Dad's surgeon whose staff concurred it was desirable for Dad to be up and moving. When I explained that the SNF was using his weight-bearing restriction to impede Dad's recovery, the surgeon lifted the restriction. The SNF, however, appears to have dissuaded Dad from walking, at least until their overworked physical therapists return to work on Monday to escort him.


Wrong Response
I don't mean to sound melodramatic: let's not worry too much about Dad. He is very strong and I am still pretty confident he will make a good -- if delayed -- recovery.  I don't mean to villify  any individuals or the institution in which he is living. In our absurd healthcare system it's just another case of  "the situation is getting worse faster than I can lower my expectations " (Venture Capitalist Lisa Suennen at Health 2.0, quoting actress Carrie Fisher).

Right Take-away Message

Patients must advocate for their own wellbeing and caregivers play a vital role. The doctor-patient paradigm is shifting: just look at The Society for Participatory Medicine. Organized advocacy groups are effectively prodding the process and increasingly empowered individuals are creating and using tools such as

1. Internet research
2. The Empowered Patient by Elizabeth Cohen
3. You, the Smart Patient by Drs Oz and Roizen
4. Dozens of online communities
5. Emerging services and products like those demonstrated at Health 2.0.

At the end of the day...get a sleeping pill if you need one but verify it's the right pill before you take it.

May the Road Rise Up to Meet You - and Your Walker

I'm doing my best to advocate for my aging Dad  as he navigates the healthcare system. He may have reservations about becoming an epatient but he appreciates it when I advocate for him -- most of the time!

I've just returned from visiting him, now @11 months post-op and still dealing with surgical sequelae. For my own peace of mind I watched closely as he negotiated ADLs.

As was the case in 2010, I was caring for dad and simultaneously preparing for patient advocacy conferences. I am lucky and grateful to be attending both Medicine 2.0 and Health 2.0 (particularly, the Patients 2.0 prequel).

In my blog post  last year I cataloged frustrating issues in his care. I posted again after he was diagnosed with a surgical site MRSA infection, though I skirted the issue of specifically identifying him.

Now Dad sleeps and eats well, follows the news and discusses liberal politics passionately with his friends, enjoys film and theater and reading serious works of historical research on his Kindle. He also works hard at physical therapy. He has great resilience and good strength and energy. But he has been left with that nasty quality of life diminisher: limited mobility.

I'm glad I could provide some practical support for Dad like making phone calls to get a prescription refilled and driving him to both a medical appointment and a discussion group. But we have -

Bigger Issues

While I give props to Elizabeth Cohen, her mom was apparently willing to move over and let Cohen drive (so to speak). The Harrises have perhaps more complicated family dynamics and no rule book for how to sort them out. Not even family precedent, even though my mom died 20 years ago of cancer. 

We grapple with things like: 

• How to support his independence when faced with evidence that his decisions may not be so good? (Dad has toyed with the idea of still more, probably useless but potentially harmful surgery)
• How to interact with physicians in empowered mode / advocate for him when he isn’t willing or able to do so himself
• How to motivate Dad to take responsibility for keeping records such as medication lists
• How to establish roles and boundaries and still communicate our love for one another
  

This daughter's wish? That I could have spared him MRSA; accelerated his rehab; prevented his falls and just provided greater comfort. My experience with Dad motivates me to keep advocating for patient safety; patients' access to their records; for shared decision making and basically the whole epatient manifesto.

Moving forward we'll need to keep an eye on his creatinine, his mood, his foot drop, his balance, his cholesterol, skin and much more. After just four days together I don't know what it's like to walk in his orthopedic shoes, but I know I want to help make his path as easy as possible.

Hope, Manifest

At 15-and-a-half, boys can be a variety of shapes, but this one seemed to come from central casting. His hoodie advertised an athletic brand and was pulled down low over his face. He slumped in the chair, his enormous sneakers protruding into the aisle. He was 5’ 10” and probably growing as I watched.

Unfortunately his recently-discovered cancer was also growing. That day I had the odd, awkward, sad and scary task of navigating him through the process of preserving his sperm in a canister of liquid nitrogen. At least, that’s how I saw it.

“Dad” — I’ve noticed that the social workers tend to refer to family members in this way — was 50ish; a quiet, pale man who was described in the medical record as a white collar worker.  He’s the first family member I spoke with, and only after a few aborted attempts. When you learn that your kid’s body is harboring a heinous cancer, you have a lot of calls to make. I get that. I stuck to the script. His questions were few.

This was not my first cancer-patient's-dad, but it was the first time I would meet the dad of a teenaged boy who wanted to preserve some potential fertility in the face of upcoming chemotherapy. Perhaps because I’m a woman he didn’t ask me to explain the process, and I was glad. At that point I still didn’t know the right nouns and verbs. Is it a “sample?” A “specimen?” Does one “produce” it, “provide” it or something else?

In the end I don’t think anybody got hung up on semantics. Dad accompanied Son to the clinic at 8 am the day after we spoke. They also brought a small woman I assumed was Mom (or at least, Stepmom) whose body language telegraphed fear. I introduced myself, kneeling to meet her eyelevel. She nodded and attempted a quick smile.

All four of us seemed uncomfortable, but I steadfastly proceeded to welcome them, getting us situated in a private corner of the clinic. “Anybody get much sleep last night?” I asked quietly, pitching my voice to a lower-than-usual register. “Some,” Mom said. Son just shrugged. Son was not interested in being drawn in conversation and none of us wanted to prolong the process.

We quickly flipped through the pages of a consent form. I did my best to be respectful as I pointed out the linchpin clause: disposition of the sperm “in case of…” I was forced to use the phase, “in the worst case scenario, of your demise…”

I had never said this to a teenager before.

I know that what this family actually embarked on, of course, was not merely freezing some random teenaged cells. Their assumptions about Son’s future had been tossed into the wind: they were being forced in that moment to face momentous, scary unknowns. It felt to me as if they were at risk of overwhelm in all domains of life. I hope I held that moment adequately for them, and I hope it helped.

Searchable Safety Data - ePatients Love This Stuff!

If you had a choice, would you have your surgery at an “average” hospital? In California, 41 percent of hospitals earned a “C” or lower in a report released recently by The Leapfrog Group, a nonprofit watchdog for patient safety   .

The rankings are based on how well hospitals – large and small -- protect patients from avoidable errors. On average, one medication error per day occurs for each hospitalized patient in the US, and more than 180,000 Americans die every year from hospital accidents, errors, and infections.

In California, Leapfrog graded 264 hospitals, looking at falls and trauma, central line-associated bloodstream infections, very severe pressure ulcers, and preventable complications from surgery such as foreign objects retained in the body, postoperative hazards, and accidental punctures or lacerations.

Postoperative hazards can result in patients being re-admitted a short while after they are discharged. This is of particular concern to hospitals because, in effort to create a safety incentive, the Centers for Medicare and Medicaid Services will begin soon to levy penalties against hospitals when patients are readmitted within 30 days.

Although I was shocked when it happened to my dad, one in four Medicare patients will leave a hospital with a potentially fatal issue they didn’t have prior to hospitalization, according to recent studies.

The Leapfrog hospital safety ratings are available online.