Sunday, October 10, 2010

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.


Erica said...

Great post, Eve. I've heard so many stories similar to this that exemplify the need for patients to take an active role in the care they receive.

Anonymous said...

Fabulous post. You're so darn right. It was perfectly clear to me this summer that Gene and I correctly "diagnosed" my mom's Alzheimer's several years before her doctor was remotely aware of it. Problem: fragmentation and distance. The doc only saw her for 15 minutes every few months. Not long enough or often enough to notice the obvious problems.
-Nicolette Toussaint