Transitional care: part of care coordination across time and settings, specifically for patient populations at high risk for poor and costly outcomes as they cross health care settings.
There is the ideal (smooth, patient and family-centric) transitional care and then there is reality.
Case in point is my elderly father with congestive heart failure—the diagnosis associated with the highest Medicare health care costs. My father has been in four different health care settings over the past six weeks. These include an inpatientacute care hospital, a skilled nursing care/rehab facility, home nursing care, and as of today, home hospice. I have worked as a nurse in three out of four of the specific health care systems he has moved through. I know something about how they work—the key people to contact—the questions to ask—the code words to use to get things done. In spite of all that—plus flying cross-country to do much of this care coordination in person—it has been more than just difficult. As my father says, “There’s been a mix-up everywhere I go—it’s as if none of them communicate with each other.” Indeed, it shouldn’t be this hard. I keep wondering: how do people with fewer resources do this?
The metaphor for ‘good enough’ healthcare transitions that has occurred to me are those orange safety cones lined up re-directing traffic. Knowing the more ideal freshly paved road of smooth health care transitions is a ways off in the future, all I’ve yearned for are orange safety cones. I did finally see one bright orange safety cone today. It came in the form of a wonderfully compassionate male hospice nurse who spent over an hour patiently and respectfully talking to my father about quality of life–about what matters most to him and how hospice can help support him to pursue those things. Finally! Sanity and clear, direct communication from someone in the health care system. I thanked this nurse and asked him how long he’d been in nursing–14 years–and what he did before nursing–he owned/operated a bar. There are many paths to becoming a really great nurse.
In the Preface of Notes on Nursing, Florence Nightingale wrote, “…every woman is a nurse.” That men were—or could be—nurses was not within Nightingale’s Victorian worldview. Men were doctors (husbands) and women were nurses (wives and mothers). A re-read of her book revealed to me one place in which she hints at the fact that men could be useful as nurses. It comes mid-way through her chapter “Noise”:
“A man is now a more handy and far less objectionable being in a sick room than a woman. Compelled by her dress, every woman now either shuffles or waddles—only a man can cross the floor of a sick-room without shaking it!”
She goes on to condemn the wearing of rustling silk and crinoline and the creaking of stays and shoes. Presumably she advocated simple (and quiet) cotton dresses for nurses.
As I wrote in my previous blog post “More than a few more men needed in nursing” (12-15-10), nursing continues to be the least gender balanced of any of the health professions. The traditionally male-dominated medical profession has achieved almost perfect gender balance. The other traditionally female-dominated profession of social work now has at least 20% men, while nursing continues to have a paltry 7% men in the workforce.
Until this week I considered myself an enlightened female nurse on the issue of gender diversity in nursing. But then I started looking at the required readings—especially the ones from nursing textbooks—that I had assigned for my community health course. I realized how un-gender neutral they are. All of the contemporary community/public health nurses who are quoted or included in photographs in the chapters are female. An otherwise well-written chapter on the history of public health nursing in the U.S. only mentions female nurses and uses terms like “our sister nurses” and “our foremothers.” Where are our brother nurses and our forefathers?
Important facts I learned this week from reading up on the topic of men in nursing include:
Men in nursing have a long and venerable history that is not acknowledged or taught very well in nursing schools. The history includes monastic orders dating back to the fourth and fifth centuries.
In the U.S. beginning after the Civil War men were actively shut out of nursing. For instance, the U.S. Army Nurse Corps banned men until 1955. When men were allowed to be nurses they were mainly confined to psychiatric nursing, which was considered dangerous and undesirable work for female nurses.
The commonly held perception (and resentment) among female nurses that men in nursing disproportionately get promoted and hold higher-paying administrative positions over their female counterparts does have merit. Economists call this phenomenon the “glass elevator,” and it applies to men in all female-dominated occupations (pink-collar jobs). However, within nursing this could also be partially explained by the fact that most men enter nursing at an older age and after time in another career versus their female counterparts. (see NYT ” More Men Enter Fields Dominated by Women” by Dewan and Gebeloff/5-20-12 and “More Men Trading Overalls for Nursing Scrubs” by Vigeland/3-21-12).
The Institute of Medicine’s Future of Nursing report specifically identifies improvement in gender diversity as a necessity for nursing. Running a profession on only half of the population (gender-wise) is unwise and untenable.
My conclusion: Nursing needs the best and the brightest no matter what their chromosomal make-up happens to be. We need more men in nursing. We need better nursing textbooks….
Theresa Brown, RN has a new NYT monthly opinion piece column called “Bedside.” In a recent e-mail, Theresa describes her column as, “…a nurse’s eye view on ways to make health care better and more humane.” In her debut piece “Money or Your Life” (6-23-12/print version 6-24-12 in Sunday Week in Review section), she argues for the Affordable Care Act (ACA) based on her work as a hospital-based oncology nurse. She describes working with an uninsured male patient with leukemia who asked her about death panels, hoping they existed. It seemed he wanted to be put out of his misery, while avoiding bankrupting his family. Ms. Brown then does a good job of describing some of the complexities of–and the argument for–the individual mandate component of the ACA. This, of course, is a key element of the ACA, and one before the US Supreme Court as to its constitutionality. Their decision is due out this week.
Congratulations Theresa Brown! And thanks NYT editors for recognizing and including a nursing perspective on the continuing health care debate in our country.
Since this is a blog, and since Theresa Brown asked for feedback on her new column, I offer a few reflections. The name “Bedside,” as in bedside nursing, implies direct patient care in an inpatient hospital setting. As such, it is descriptive of the type of nursing Theresa Brown is involved with. But bedside nursing is a term often used as code for “real nursing,” as if community/public health, home health, school and occupational health, and nursing home nurses are somehow not real nurses. The name “Bedside” also perpetuates the notion that nurses spend the most time with patients of any health care team member, and are, therefore, in the best position to advocate for patient’s needs. This belief undermines patient care and safety by working against good health care team communication. It is a paternalistic (maternalistic?) belief that undermines the patient autonomy and agency central to patient-centered care. The belief is also not supported by facts.
Recent studies indicate that hospital-based nurses consistently (and significantly) overestimate the amount of time they spend on direct patient care. Whereas many nurses ‘guesstimate’ they spend over half their time during a given shift on direct patient care, national studies (sophisticated versions of time/motion studies) indicate that hospital nurses spend just 15% of their time in direct patient care. (see RWJ study by Hendrich, et al, “A 36-hospital time and motion study: how do medical-surgical nurses spend their time?” The Permanente Journal, Summer 2008) The largest percentage of their time was spent on charting and other administrative tasks. And a recent study found that physician hospitalists also spent 15% of their time in direct patient care (“Hospitalist time useage and cyclicality: opportunities to improve efficiency” Kim, et al. Journal of Hospital Medicine, July/Aug 2010). So nurses’ time-honored claim to spending the most time at a patient’s bedside is no longer true.
The Truth About Nursing had a post yesterday, “Amanda Trujillo: Fired for Educating A Patient?” Briefly, it is reported that in April 2011 the hospital administration where Ms. Trujillo was employed filed a complaint against her with the Arizona Board of Nursing (BON) and also fired her. The firing and BON complaint were allegedly for Ms. Trujillo referring her patient with end-stage liver disease to have a hospice consult—when the patient’s surgeon had already scheduled the patient for a liver transplant. As stated in the Truth About Nursing post, the Arizona BON was scheduled to decide on the case at its meeting at the end of March, but there are no public reports of their decision.
What I find most interesting about this case is the level of social media presence about the issue, and much of it directly from Ms. Trujillo. Unless there is someone posing as her, she appears to weigh in with details about her case on high profile forums such as KevinMD (see guest post by a semi-anonymous ‘J. Doe’, RN. “Why Physicians Should Care About Amanda Trujillo” date unstated). Ms. Trujillo set up an online legal defense fund to help defray the costs of retaining a personal lawyer to assist with her case with the Arizona BON. A psychiatric nurse who goes by the name Mother Jones and blogs under Nurse Ratched’s Place, has a link to the NurseUp! nursing advocacy website that reports having raised $1,700 in additional support for Amanda Trujillo. Mother Jones speculates in April 25th blog post that the case is headed to the court system, and that this is why there is no public information on the Arizona BON decision. There have been numerous letter-writing campaigns to the Arizona BON and the Arizona Nurses Association, as well as to various state officials and even to the ANA. There were allegations of close ties between the Arizona BON and the hospital which filed a complaint against Ms. Trujillo. There have even been calls to boycott the Arizona tourism industry in protest of the Arizona BON in the their handling of the case of Amanda Trujillo. Maybe boycotting Arizona’s hospitals would have made more sense?
I continue to be dismayed by the lack of understanding by nurses (and the general public) of just how corrupt and inefficient our state-level health professions regulatory system is. It will be interesting to see if higher profile cases such as Amanda Trujillo help bring much needed reform to this system. (see my previous post “Not Just Culture” 11-19-11 for more information on the health professions regulatory system and its relation to nursing and public health.).
Nurse and NYT’s Well Blog contributor Theresa Brown has a NYT Op-ed piece today entitled “Hospitals Aren’t Hotels,” in which she states “…the growing focus on measuring ‘patient satisfaction’ as a way to judge the quality of a hospital’s care is worrisomely off the mark.” She points to the patient satisfaction section of The Centers for Medicare and Medicaid’s Hospital Compare website, where consumers can look up individual hospital quality of care information. Based on Medicare patient data and hospital reporting mechanisms, Hospital Compare includes process and outcome of medical care measures, use of medical imaging, patient safety measures, Medicare payment/volume, as well as a 10-item survey of patient’s hospital experiences.
It is instructive to note that patient satisfaction is only one of six categories of quality of care data on Hospital Compare from which consumers can make more informed medical care decisions. Obviously it is only useful for planned procedures and hospitalizations, since patients having a heart attack aren’t likely to stop and look up Hospital Compare data on their iPads. I used Hospital Compare several years ago when my sister asked my advice as to Seattle-area hospital choices for her planned abdominal hernia repair. At the time, Swedish Hospital had the highest volumes and best patient outcomes (including patient safety) for this surgical procedure, so my sister then picked a surgeon from their list. She had a decent hospital experience. Today for grins I pretended I needed to have laparoscopic gallbladder removal (I don’t) and ‘shopped’ for Seattle-area hospitals based on this specific procedure. Of the three geographically closest hospitals—Group Health Central, Northwest, and University of Washington Medical Center (UWMC), Group Health came out the clear winner overall for quality of care measures that are most meaningful to me: patient safety (UWMC is worse than national average for hospital acquired conditions such as infections and things besides vital organs left in after surgery—and for the ominous sounding “accidental cuts and tears from medical treatment”), having medications explained to me before they are given, nurses and doctors who communicate with patients well, and the area around patient rooms being quiet at night.
It can be and is argued that patient satisfaction with care is not a valid measure of outcome of medical care. I know from teaching that I can make my students happy and get high ‘student satisfaction’ with teaching scores, and still not have done my job of actually teaching them anything of importance. In her NYT Op-ed piece today, Ms. Brown uses an example of an elderly cancer patient who was told by the hospital oncologist that he was basically too old to qualify for treatment and was sent home. He may have not scored that hospital very high on his Medicare hospital survey, since he didn’t get what he wanted. Ms. Brown links to a recent study by Joshua Fenton at UC Davis showing that higher patient satisfaction scores with individual doctors was linked with greater use of hospital services (higher medical cost) and increased mortality. To me that’s a no-brainer and points to the danger of overuse of health care—more health care is not better health care, and health care can be dangerous to your health.
US doctors have been fighting consumer ratings of individual doctors. (see Ron Lieber’s “The Web is awash in reviews, but not for doctors. Here’s why.” NYT, 3-9-12) The developer of the online RateMyProfessors.com site created RateMDs.com. RateMDs.com now includes ratings of close to 1.4 million physicians in the US and Canada. The founder of RateMDs.com gets at least one lawsuit threat a week from physicians who don’t like what’s been posted about them. A physician reputation management service, Medical Justice, set up a system whereby physicians had patients sign a “no web posting opinions of the doctor” agreement in exchange for enhanced patient privacy protections. That’s almost like a restaurant owner asking you to sign an agreement not to post a review on Yelp in exchange for not putting flies in your soup. The Medical Justice system collapsed after a complaint was filed with the Federal Trade Commission.
Insurance companies and health plans collect consumer ratings and medical outcomes data for individual doctors and other providers, but they don’t make these data available to consumers. With the Affordable Care Act/health care reform, starting January 1, 2013, Medicare will be required to provide consumers more information on doctors as well as on hospitals. (As of this writing, they have a “Physician Compare” site, but it only allows searches to find physicians who accept Medicare.) I disagree with Theresa Brown on this issue. I think that patient satisfaction as one aspect of judging the quality of hospital or other medical care is essential for improving our health care system. It is an essential component of patient-centered care.
Isn’t it ironic that giving patients access to their own medical charts is considered a radical idea? So radical in fact that the Robert Wood Johnson Foundation—that pioneering, cutting edge organization—is funding research on the feasibility and effectiveness of giving patients access to their own medical records. A one-year pilot project called “OpenNotes” was conducted at three hospitals: Harborview Medical Center in Seattle, Beth Israel Deaconess Medical Center in Boston, and the Geisinger Health system in Pennsylvania. Results from the baseline survey data were reported in the Annals of Internal Medicine (12-20-11). Not surprisingly, patients were overwhelmingly (>90%) supportive of the idea of having access to their doctor’s medical notes, saying it would help them remember important health information. In contrast, the majority of the 173 doctors completing baseline surveys expressed reservations over the OpenNote idea. The doctor’s concerns included: 1) worrying/confusing patients with medical chart information, 2) doctors would be less candid in what they charted about patients, 3) it would take up more of their time in having to answer patient questions raised by access to their charts, 4) it could increase the number of lawsuits, and, 5) personal medical information could end up on Facebook. The yearlong pilot has ended and OpenNote researchers are now analyzing data to see how patients and doctors who participated in the project felt about it. They are also evaluating how often patients accessed their medical charts, how often they shared them with family/other providers, and how often they corrected errors the doctors had made in the charts.
As Carol Ostrom points out in her recent article on the OpenNote project, doctors may need to change some of their charting habits in terms of labeling patients. (“Patients eager to see doctor’s notes; physicians, not so much” Seattle Times, 12-25-11). She includes calling patients SOBs and charting on their BS (bowel signs). I’m not sure I’ve ever read a medical chart where someone called a patient a SOB, but I last worked in a clinic that had ‘slovenly’ as a standard term in a menu for describing patients. My colleagues and I had a debate, with some saying slovenly was a perfectly acceptable term for patients—similar to unkempt or disheveled. I maintained it was much more insulting because it implied a slur on moral character as well as physical appearance. And then there’s the still used FLK (funny looking kid) in pediatrics, used for describing a baby or toddler ‘just doesn’t look quite right and might have a genetic or other disorder but who hasn’t been diagnosed yet.’ Supposedly some pediatricians have been known to use FLP (funny looking parent) in children’s charts—I suppose by way of saying the FLK is genetic in a FLF (funny looking family) sort of way. I don’t think these terms would go over well in OpenNote.
Recently, I was in a hospitalelevator when three hospital employees walked up to it separately, all deeply concentrating on their smartphones. Their smartphones collided, and they looked up dazedly, sheepishly apologizing as they stepped on to the elevator. Then all three resumed communing with their smartphones. From where I stood I could see that at least two of them were not doing patient or work-related activities on their phones. I considered this research and not elevator eavesdropping.
By now everyone has heard of the dangers of cell phone and texting distraction while driving, although state laws banning or limiting cell phone use while driving seem to be scoff laws. Being a true Seattleite, I bike to work on our lovely Burke-Gilman bike trail. This used to be almost idyllic but now I have to watch for bikers on their phones, weaving as if they’re drunk. I am not a complete curmudgeonly Luddite: I own an iPhone, but I don’t use it while riding my bike, driving, or walking onto a hospital elevator.
A recent NYT article on distracted doctoring and distracted nursing highlights the extent of hospital personnel using smartphones, computers and other electronic devices for things other than work, including when they are doing patient care—even when they are doing surgery. (“As Doctors Use More Devices, Potential for Distraction Grows” by Mike Richtel, 12-14-11). A neurosurgeon reportedly was talking on his cellphone (using a wireless headset) during a surgery that got botched, leaving the patient partially paralyzed. An OR nurse in Portland was reprimanded for surfing an OR computer for airfares while she was covering a spinal surgery. And then for the truly frightening, over half of 439 technicians surveyed admitted to texting while monitoring heart bypass machines.
When my father was in the hospital last year, I noticed that his nurses spent much more time on the mobile computer stations outside of his room than they did in direct patient care. He had some terrific nurses, and they told me that they hated how much time they had to spend in checking and entering patient data in the computers. The legitimate use of technology in health care is all in the name of patient safety. But at what cost does it come in terms of the human interaction necessary as the core of all healing?
Facebook, Twitter, blogging, and all the other social media tools, oh my! I have been wading through the realm of social media and health care, specifically as it relates to nurses. Who owns you? Who controls what you can say? I am interested in this topic for many reasons. I am currently writing a book based on my work as a nurse practitioner providing health care to homeless people. Most of my chapters use a specific patient to illustrate larger issues related to homelessness. I have changed patient names, ages and other demographic data—but is that enough to protect identities? In narrative non-fiction, the use of ‘composite’ patients (blending aspects of more that one person in order to hide identities) is frowned upon—at least by purists with a journalistic bent. As a nursing professor, I assign classroom writing assignments relating to narrative medicine/nursing, encouraging students to use a specific health care experience (as patient, provider or family member) and to use that experience to illustrate and examine health care policy issues. I encourage other nurses who are already in practice to speak out about workplace issues as a way of advocating for policy changes. I maintain my own Facebook page, I Twitter and I blog on nursing and health policy, while I maintain my own practice as a family nurse practitioner and as a university professor. What can I say and not say both legally and ethically? What can any nurse say both legally and ethically?
Obviously I am not a lawyer, nor am I an expert on the nuanced legalities of social media, which seem to be amorphous. What I share here is what I have been able to cobble together from a myriad of sources.
Theresa Brown, RN who is a regular contributor to the NYT Well Blog states that HIPAA (Health Insurance Portability and Accountability Act of 1996) rules are easy once you know them: a patient can identify him or herself in whatever you write, but no one else can. (But how can you know that when you are writing it?) Theresa Brown writes about specific patients she works with as a staff nurse on a hospital oncology ward. She also writes about specific interactions she has with other hospital staff, including physicians. For her book Critical Care (harperstudio: 2010) she mixes up the patients by changing race or gender as a way of protecting identity. She can’t do that for her NYT essays for journalistic “truth” reasons, but then she doesn’t disclose a patient’s race, exact age, or physical appearance as a way to protect patient privacy. She states that the hospital she works for tried to get her to have all of her NYT Well Blog essays ‘approved’ by them before publication and she refused, stating that this requirement would not hold up in a court of law. I think that worked in her case because of who she is (for instance, she survived getting tenure at Tufts before becoming a nurse—plus she is writing for the NYT Well Blog). The hospital administration backed down, but they agreed that she would not name the hospital she works for. However, when she was invited to the White House to meet with President Obama during Health Care Reform debates, her hospital was eager to have her identify them as her employer. (see her article, “Nurse as Writer, Writer as Nurse” Clinical Journal of Oncology Nursing, 15(2) April 2011).
Hospitals are risk adverse and tend towards paranoid status. They like tapping into the power of social media for their own benefit, as a way of attracting potential (paying) patients. A rapidly growing number of US hospitals currently have some social media/Web 2.0 presence. Hospital social media staff members also scan other social media sites for any possible negative news items about their hospital, or any infractions of patient privacy by hospital staff that could lead to HIPAA violations and/or lawsuits. Hospital managers and other staff are encouraged to report possible infractions—effectively to rat on their co-workers over their social media use. The recently released 2011 AMA Policy: “Professionalism in the Use of Social Media” encourages physicians to self-police other physicians for unprofessional conduct on social media before resorting to ratting to “appropriate authorities.” The ANA has no policy or guidelines on professional use of social media for nurses.
Many hospitals now have policies restricting use of social media by staff, including residents and physicians. These restrictions range from the concrete/understandable, such as “don’t Tweet from the OR, or add a patient photo on Facebook, or friend a patient on Facebook” to the fuzzy “don’t say anything on social media that you wouldn’t say in a faculty meeting or to a member of the media.” From personal experience, I can say that the latter is highly subjective and not very helpful as a guide. Equally fuzzy is the “elevator rule:” don’t say anything you wouldn’t say on an elevator. That would depend upon the elevator location and whether or not you are on the elevator by yourself… Not a helpful rule.
HIPAA strikes fear into many a health care provider’s heart. The US Department of Health and Human Services (HHS) Office for Civil Rights can levy steep fines on hospitals and individual health care providers for knowingly or unknowingly breeching any of the myriad rules of HIPAA. The University of California at Los Angeles Health System has just agreed to pay a $865,500 fine and add corrective actions in a case where employees viewed electronic medical records of two celebrity patients (for non-patient care reasons). Individual health care providers can be assessed a $50,000 fine and up to a year in jail for knowingly disclosing individually identifiable patient information. Health care providers (mostly nurses and ‘below’) can and have been fired from hospitals and clinics for HIPAA violations.
Just what is individually identifiable patient information? Having read the fine print of HIPAA (available on the HHS website), this includes the obvious date of birth/death, address, Social Security number, fingerprints/other biometric identifiers, and medical record number—to the less obvious age (OK to use an age of a patient up to age 89—after that you need to use ‘age 90 or older’). These unique identifiers have to be removed for individual patients, as well as for “relatives, employers, or household members of the individual.” The HIPAA privacy rule protects all individually identifiable health information “or information for which there is a reasonable basis to believe can be used to identify the individual.” This last stipulation of the privacy rule is where it gets fuzzy and where paranoia can set in.
In 2007 a group of medical bloggers got together to form the Healthcare Blogger Code of Ethics. It acknowledged that bloggers in the medical field have unique legal, ethical and professional challenges to blogging. The code was also developed in response to many medical bloggers being pressured by employers or academic institutions to stop blogging or face consequences, including termination. The code included issues of transparency (limiting anonymous blogging), commercial disclosure, civil discourse/courtesy, reliability of information/citing sources, and patient confidentiality. They developed a system for medical bloggers to apply for membership, be screened for ‘certification’ and then if they passed they could place the Healthcare Blogger Code of Ethics seal on their website to reassure readers (and employers).
I applaud HIPAA and its emphasis on increased patient privacy and security of health care information. I value the privacy of my own health care information. As a health care provider, I honor the trust patients need to have within the health care encounter. Egregious breaches of patient privacy by nurses and others on the health care team are rare, but need to be dealt with quickly and severely. But what concerns me is how HIPAA—as it is broadly interpreted by risk-averse hospital administrators—is further silencing nurses, and hindering their involvement in constructive health policy discourse. We need a more uniform, sane, and concrete guideline on patient privacy and health care providers’ use of social media.
The Healthcare Blogger Code of Ethics seems to be migrating from Blogspot to WordPress, so their website information isn’t currently available or I’d link to it here.
“When Facebook goes to the hospital, patients may suffer: Social networking sites can bolster the image of medical facilities, but privacy standards can easily be violated.” By Molly Hennesey-Fiske. The LA Times, August 8, 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.
Surviving the hospital: Yesterday I brought my Dad home from the hospital. He insisted on opening doors for me and for others as we found our way to the parking garage. He was disappointed he didn’t have surgery. In the 2.5 days he was an inpatient at the teaching hospital he was seen by a total of four doctors, two nurse practitioners and one physician’s assistant all at different times and mostly asking us what the other providers had said (not quizzing us–they really didn’t know). It was confusing for my Dad who kept getting his hopes up that they could do cardiac surgery and fix him up. I was his health care agent and tried to be his advocate. It was exhausting to help him wade through it all. I realized just how messy these “breakpoint conversations” are for everyone and how our health care system really is not set up to help facilitate them. For instance, in a hospital there really is very little in the way of real patient privacy. My Dad had a shared room with a cloth curtain between the beds, which were three feet apart. Without really wanting this information, I now know all of the roommate’s medical conditions and major family situations. He knows ours. I was uncomfortable having the difficult patient/family/provider conversations we were having knowing that Dad’s roomate and his wife were listening. I know it changed what I felt like I could say and ask. At the climax of the main conversation with Dad’s cardiologist (when he was telling Dad his heart was like the engine in an old car–unreliable except to run around town perhaps), the roomate’s colostomy bag exploded and his breathing/forced air machine started beeping loudly. Somehow the conversation continued even though no one could breathe or hear anything. I understand that exploding colostomy bags happen and things hit the fan and you can’t control situations, but this was on a ‘regular’ medical floor and not in intensive care. Surely clever engineers/designers can come up with solutions to the space and privacy issues in hospital rooms, even if they have to be shared rooms. My Dad was ambulatory and the doctor could have taken us to a private consult room somewhere for this sort of conversation and I am sure that would have made it easier for everyone. I was going to suggest it at the time but realized there were no such rooms. I pushed for home nursing care for my Dad and that starts tomorrow–it can segue into hospice/supportive care when the time comes. I had to ask for patient education materials before we were discharged and there really is no clear plan for follow-up with anyone. The home health nurse comes tomorrow and I am hoping that he or she can help pull things together better than they have been so far.