Tag: Seattle

Aging (and walking) In Place

It has been a year since my father first started showing symptoms of congestive heart failure. His symptoms started last August when he was visiting me from his home in Richmond, Virginia. His symptoms worsened as he did his daily walk, and necessitated a visit to the local emergency room. Last September his cardiologist gave him 3-6 months to live. My first blog post “A Practical Man and Modern Medicine” was about the end of life decisions my father and I were facing—and my frustrations over the fragmentation of the health care system as we wended our way through the labyrinth. The term “rough crossings” for these health care transitions is an apt one. It was difficult for me and I am a health care insider. He was briefly hospitalized in September at the same university hospital where I ‘trained’ as a nurse and nurse practitioner. I coordinated his home nursing care and then (briefly) hospice care—and convinced my father to give up driving. I thanked bad boy Clinton and my university for FMLA (Family Medical Leave Act) so that I could be with my father during what we were told were his final months of life.

A year later, my father is back here in Seattle for a visit. He ‘graduated’ from hospice and home heath after only a few weeks—he was too healthy and independent. So much for medical predictions of mortality. He has come out to Seattle every year for the past fifteen years. He leaves a clunky pair of walking shoes here so he doesn’t have to pack them. A few weeks ago, while he was still in Virginia, he developed pneumonia. He refused to be put in the hospital for it, so my brother nursed him back to health—and then put him on a direct flight from DC to Seattle. Every day since he arrived (rain or shine—it’s Seattle, so it is mostly rain), my father straps on his walking shoes, grabs the lightweight REI collapsible stool I gave him, and heads out for a 30-minute walk. When he gets short of breath, he sits down on his stool for a while and checks out the neighborhood gardens. Back in Richmond, he continues to live at home, relying on neighbors, church friends, my brother and sister-in-law to help out with things like getting groceries and driving him to the bank. He continues to have a huge garden in his backyard which he tends every day. He rides his stationary bicycle nine miles a day and walks outside when it’s not too hot. A retired minister, he visits “really old” people in nursing homes and vows never to live in one: “They just sit there all day and look really bored.” He has a point, and one that is supported by research: aging in place can be cheaper and have better outcomes than the alternatives of nursing homes.

Most people prefer to stay in their own homes or apartments for as long as possible. There is a bourgeoning business related to smart home design and various technologies to support people aging in place. Besides the home monitor, which measures my father’s blood pressure, oxygen saturation and heart rate daily—and which he loves—there are now smart toilets (which measure urine sugar levels) and smart rugs (assume they are wall-to-wall—detect changes in an older person’s gait for fall prevention). But then there is the issue of informal care (unpaid care) by relatives and friends, because that is what allows aging in place to not be dying alone in place.

Current estimates of the economic value of informal care in the US puts it at $306 billion a year, compared with nursing home care spending ($115 billion/year) and formal home health spending ($43 billion/year). Source: RWJ and Peter Arno, “Economic Value of Family Caregiving, 2006.  Upwards of 70% of the informal care workers are female, although the proportion of male caregivers is steadily increasing. Anecdotally, I think that FMLA is partly responsible for this evening out of the gender disparity in caregiving—an explicit purpose of the act. Also, just as in my parents’ case, older married men are becoming the informal caregivers for their wives, as men begin to outlive women. There is growing recognition of the rewards—but also of the burdens—of informal caregiving. Most informal caregivers are spouses or adult children of aging parents. They rarely have any training or experience in caregiving of the sort needed for aging in place, and it is difficult to find needed support for the work they do. Informal caregivers have the stress of lost wages/lost retirement savings, the stress and isolation and physical demands of in-home care, and they often neglect their own health.

Nurses have long been the backbone of home care services. Home nursing services have increased in the US with the growing geriatric population, as well as with the reduction in hospital stays for all patients. Nurses, along with medical social workers have become geriatric case managers, an unlicensed and unregulated ‘profession’ providing care coordination and links to needed community-based services for geriatric patients and their families. There is a National Association of Professional Geriatric Case Managers with a website and searchable database. I checked today and there a four Geriatric Case Managers in Richmond, two of them are RNs and two are social workers. From what I understand, their services are not reimbursable by Medicare or any other health insurance. I’m not convinced of the value of their services.

The Affordable Care Act included some provisions for home care. For instance, the CLASS Act (Community Living Assistance Services and Supports) is a voluntary insurance program for home care through a voluntary payroll deduction plan. It was scheduled to go into place January 1, 2011. After a five year vesting period it would pay up to $50/day for non-medical services and supports necessary to maintain community residence. Currently, Congress is trying to repeal this act.

Helpful websites/blogs:

Health Affairs Blog, “Informal Caregiving by and for Older Adults” by Donna Wagner and Emiko Takag (Feb 16th 2010)

Aginginplace.com website and blog by Patrick Roden, RN, PhD

Aging Well Consortium website and blog by Liz Taylor, Seattle-area journalist and advocate on aging issues. An advocate of ‘intentional aging.’

KOMO News Problem Makers

Original cast of the show (1994-1995)
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Tracy Vedder with our Seattle-based TV KOMO News Problem Solvers should have been at our panel discussion yesterday on med errors and the consequences for nurses. Perhaps she could have learned something. But instead she was hot on the case of two Seattle Children’s Hospital nurses who were charged with professional misconduct yesterday by the Washington State Nursing Commission. Last night she aired a news piece that sensationalizes and distorts the facts.

The online link to the video news portion is bookended by an ad for UNICEF. A mop-headed sad-faced boy says, “22,000 children die every day for reasons the world has the power to prevent.” It then cuts to the two newscasters sitting behind a desk with a large screen in front stating in large letters: “Nurses Charged”. Then Tracy Vedder is shown in front of the Washington State Department of Health, and states that two Children’s Hospital nurses were charged with unprofessional conduct—with SERIOUS conduct violations (her head spins around to emphasize ‘serious’). She goes on to name the two nurses several times. She describes the transport nurse as giving three medications “without any doctor’s orders” and says the baby in that case died. She states the ER nurse gave an adult patient epinephrine by IV instead of IM. The patient had arrhythmias but was stabilized.

Ms. Vedder fails to mention that the medications the transport nurse gave were appropriate ones, that the medical examiner determined the baby died of natural causes, and that both state and federal authorities cited Children’s Hospital with a lack of clear guidelines for transport staff.  Tracy Vedder also fails to report that in the case of the ER nurse, an ER doctor incorrectly prescribed the epinephrine to be given IV, but was not charged because he “didn’t intend any harm.”  All of this information is in easily obtained publicly available documents, including official written statements by Dr. David Fisher, Medical Director for Seattle Children’s Hospital.

By contrast, Carol Ostrom (please note, this is her correct name–not Tracy Ostrom–apologies Carol!) of the Seattle Times has a remarkably balanced and insightful article today about the nurses being charged. She was at our panel discussion yesterday, but I draw no cause and effect conclusions. I think it was a case of selection bias. Yesterday in the panel discussion, NPR’s Joanne Silburner encouraged the audience to be responsible consumers of news media, and to recognize the limitations of TV news. She also encouraged nurses in the audience to speak out more, to know which newspaper reporters are professional (including ethical), and to talk with those reporters when given the opportunity. I would add: stop watching TV news. Lead by example.

The other lesson I learned yesterday: Kim Hiatt’s suicide should be a “never again” event, and all of us have a responsibility to ensure that is the case. Two of our nurses in Seattle are being publicly fried by KOMO News and others. Let’s not be silent about that. In whatever ways we can, we should each offer appropriate support to these two nurses—and to all of the ‘collateral damage’ nurses who know and have worked with them.

Why Iowa?

Prairie Lights Bookstore, Iowa City, facade de...
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I have been asking myself this question for the past two days, ever since finding myself in the midst of cornfields and cows. I am at the University of Iowa’s narrative medicine conference “The Examined Life.” This conference seems to be grain-fed on the reputation of the Iowa Writers’ Workshop. So many excellent writers have gone through this program. I envision a young Flannery O’Connor riding by train here from Georgia. But few if any writers were actually from Iowa and few if any stayed in Iowa. Now I know why.  I walked around ‘downtown’ Iowa City yesterday four times in the search of food. This is a drinking college town, as there are only bars. I hear from some current writers in the Writers’ Workshop that the pubs and writing go together. I stumbled into the one coffee shop I could find and it ended up being Prairie Lights, the town’s iconic independent bookstore. When I asked the bookstore staff member to direct me towards books by local authors, he looked at me blankly and then showed me to a table full of the birds and flowers of the Iowa prairies.

The conference itself is interesting in a low-key sort of way. Held at the medical school it is unsurprisingly dominated by physician-types, including many local medical students. As the building is attached to the hospital, some are wearing scrubs and/or white coats. The philosophers don’t seem to be here as they were in Seattle. Much of the talk is about cancer narratives and end of life and palliative care, and about how doctors don’t get enough training in how to talk to patients. The most interesting part of the conference so far was a reading and discussion by the writer Chris Offutt, who is a visiting professor teaching at the Iowa Writers’ Workshop. The short story he read, “Out of the Woods” had a hospital and a dead body in it, so that was the connection to narrative medicine. He’s a great writer and with a theater background, does a wonderful job at reading his own work to a largish audience.

I have been thinking about how place affects the nature of writing and of any other creative endeavor, including the nurturing of narrative medicine. Even though Iowa City is home to the premier MFA writing program in the US, it does not have a creative spirit. Based on my informal street level culture index walkabout last night, this is not a creative place. I did not see any bohemians out and about, except for one lone Rastafarian young man, but he was outside of a smoke shop so must have been part of their advertisement. No street level coffee shops in which aspiring and real writers can go to hang out and work out their writer’s block in community. In fact, I was lugging my laptop around in hopes of being one of those coffee shop writers. Instead, I am writing this on the shiny vinyl floor, in a hallway of the Cancer Research Laboratory. Carts of large red biohazard bins keep rolling past me.

Narrative medicine in Manhattan, seemingly shared between Rita Charon and her colleagues at Columbia, and people at the NYU School of Medicine has more of a cerebral, sophisticated air to it, fitting with the culture of NYC. There is a budding narrative medicine culture in Seattle, fed off transplants from other places, but affected by the writing and creative culture of the city. Seattle—rainy, soggy, foggy, moody somewhat depressed over caffeinated introverted intelligent contrarian process-oriented full of causes and grand passions and changing the world idealist tree hugging serial killer—Seattle. Moss covered alternative healing modalities Seattle. Narrative medicine cannot help but be different in such a climate. I hope that in the PNW climate of inclusiveness, narrative medicine can become more than it is now in the rest of the country.

~addendum reflection after the Examined Life Conference: Iowa City began to cast its spell on me after three days of being there for the conference. The conference cast its spell as well. I am typically not a joiner-love-conferences sort of person, but I ended up attending all but one of the conference sessions. Since returning to Seattle I’ve been trying to figure out if that’s because there was nothing else to do in Iowa City, or if it is a positive reflection on the conference. I think it was the latter. I’ll be going back, and hopefully more nursing-types will join me there next year. A group of us from the conference, along with some PNW narrative medicine/advocacy people are beginning to plan a conference on narrative advocacy, to be held here in tree-hugging coffee-chugging Seattle–hopefully in another year or so, so stay tuned for that. And while you’re here, check out our independent bookstore Elliott Bay Book Company.

Head Banging and Health Care

This past May I quit my clinic job where I had worked for 16 years. It was a community health clinic that I had loved for 14.5 of the 16 years. The last 1.5 years of it were a downward spiral of administrative dysfunction leading to moral distress and burnout for me. Towards the end I felt as if I had a bad case of autism and was banging my head against a wall, the wall being an unresponsive, uncaring safety net system. I had the luxury of being able to afford to quit. I don’t miss the clinic, and I am unsure if I will ever work as a clinician in our health care system again. This is after almost thirty years of continuous work as a family nurse practitioner in various safety net community clinics across the US. I love patient care and do miss that.

 

I was reminded of the head banging metaphor this morning as I continued to try and coordinate sane home health care for my father. His family physician ordered hospice last week. The hospice and home health are within the same agency in his hometown. Hospice called home health to discontinue home health and start hospice. But before hospice could even start, my father’s cardiologist cancelled hospice. The cardiologist had ordered home health after my father’s hospital stay, but now it has been discontinued without him even knowing it. Meanwhile, my father continues to fall at home and his hand wound from an earlier fall is not healing. The home nurses have never even looked at his hand because they don’t have a doctor’s order to look at his hand—only his heart. I am back in Seattle trying to catch up on my job and with my family. The home health and hospice agency staff people call me because my father doesn’t hear well enough to answer his phone when they call him. My head hurts….

 

HIPAA at 30,000 feet/ October 22, 2010

At 30,000 feet cruising altitude on a four-hour direct flight between Seattle and NYC, my seatmate pulled out a two-inch sheath of papers, put them on her seat tray table and started writing on them. I was knitting and had my headphones on, trying to relax. I glanced down to see what she was working on and saw that they were patient charts. Individual progress notes complete with full names, dates of birth, addresses, insurance carriers, presenting complaints, physical exam findings, medications, diagnoses and treatments. I discovered all of that by small furtive glances past my knitting project. I tried not to look, but it is like trying not to look at an attractive person starting to undress in public. You know you shouldn’t be looking but it impossible not to.

My seatmate’s progress notes (along with the familiar blue and white billing/encounter forms) also had her name on them and the name and address of the clinic where she worked. From the range of patients she had seen, she must be a family physician. The clinic is outside of Seattle—sort of in the country. But still, I am fairly sure that she is aware of HIPAA and that it is rather odd (and I’d say unethical) behavior to be charting on an airplane. She worked on these charts for three hours, after which she laid her head back to rest, thought better of it and turned the top page over to cover the information. As if that took care of the patient confidentiality part of having just waived patient information under my nose for the past three hours? Oh yes. The other thing that I found fascinating is that all of the patient progress notes she worked on were from over a month ago. And it wasn’t like she had even made short notes already on the progress notes from (presumably) the day she had seen these patients. They were all blank except for the patient’s information and presenting complaint. Perhaps she has a good memory. Perhaps she was making it all up. Maybe she had had some sort of family emergency and hadn’t been able to chart on these people closer to the time she had seen them. But really, on an airplane?

I thought about saying something. I wondered if it’s possible to make a HIPAA citizen’s arrest at 30,000 feet. I did neither of course, and instead kept knitting and composing this blog post in my head. I kept wondering what all of those patients would think/say/do if they knew their personal health information—psoriasis, acne, domestic violence injuries among others—was being displayed on an airplane. I also thought about how it was likely her patients were from a low-income community clinic of some sort, since many of them had no insurance. Would a family doctor from a more upscale clinic be charting on paper progress notes on an airplane? I doubt it. So this leads me to wonder about the inequity even in the application of HIPAA and patient privacy in the US. HIPAA seems to be more about protecting the health care system than protecting individual patients—at least how it has been interpreted and applied. For instance, at a community clinic I recently worked at, the clinic administration decreed that we as providers could not provide patients or parents of children copies of their immunization record. At least we couldn’t give it to them the day they asked for it. Instead, they had to fill out/sign a record request form that went to medical records and presumably several weeks later they could come back to clinic and get their immunization record. When we questioned this, the clinic administration said it was “HIPAA rules.” As if.