Every year at Thanksgiving, Engage with Grace asks bloggers to participate in a yearly “blog rally”, a term I’d never heard of before. Bloggers encourage their readers to spend a little time discussing end-of-life (EOL) values with their families while giving thanks. An excellent tool for this is the One Slide Project, which is found on the Engage with Grace website. The site gives suggestions on how to introduce the subject and facts on why it is so important.
On more than one occasion, I have watched families struggle to determine the best course for a loved one who could no longer decide for herself. Sometimes, family members from out of town are unwilling to give up their loved one and futile care goes on much longer than anyone anticipates, leaving a swath of guilty and angry family members and damaged relationships that can last for years.
On Tuesday night, the #HCLDR twitterchat centered around end-of-life issues. We had been thoroughly primed by Lisa Fields’ thoughtful blog post (@PracticalWisdom) and the thoughts flew fast and furiously. For a transcript, please click here. Above all, there was agreement that EOL discussions are important and if your primary care physician is not asking you what your wishes are, you should be telling him. Don’t wait until it’s too late and people that you don’t know or don’t want are making decisions for you. Make this holiday of thanks an opportunity for your family to understand your wishes. And you theirs.
Brenda works as a nurse at the other big healthcare system in town. She is a bit of a stoic. During our 25+ year relationship there were times I thought she didn’t like me until I realized what a no-nonsense personality she possesses. Thus it was upsetting to see distress in her face and hear her frustrated tone as she said, “You’ve been my doctor a long time, but I have been told that I can only see doctors in our system for my visits to be covered on my insurance.”
This came as no surprise to me. Just a few weeks earlier our hospital president made the same announcement to our employees. It is infuriating to hear relationships destroyed with a flippant “We have good doctors here. There is no reason for our employees to see doctors in other systems.”
First of all, a 25-year relationship with someone makes for a damn good reason to continue to see them. And yes, we have great doctors in our system. But sometimes better talent is in another hospital. I want my patient to benefit from the best talent available. And sometimes a better physician with a bedside manner that engenders patient trust trumps a “best” physician. Trust goes a long way in helping patients heal.[1,2,3] Creating more silos for our patients is not the answer to improving care but in these days of tightening budgets regardless of how much “patient engagement” rhetoric is thrown about, the bottom line is what is most on the hearts and minds of the system CEOs.
As administration continues its attempt to be transparent, I may scream on hearing one more “faith-based platitude”. I do not believe that putting dollars before patient care is a religious value. On the competition’s side their mission statement urges quality health care in a manner that responds to the needs of the community and also honors a faith heritage. Regardless of the faith heritage, shattered trust is not a community need.
In the aforementioned meeting, our hospital president also stated that discussions to join with the competition for supply volume discounts were in process. How about negotiating the salvation of patient-doctor relationships with them as well? Systems can continue to insist on patients using the facilities where they work for testing and procedures but this strategy could encourage doctors, regardless of where they work, to continue to have privileges in BOTH systems. Then we have a win-win for patient employees, their doctors and the systems.
As hospital networks struggle to balance their budgets in this competitive marketplace, here is my prediction: healthcare systems will survive based on the level of care they give the patients they serve, not by destroying the trust that patients put into those systems and their physicians. As Karma will have it, what goes around, comes around. Or if you prefer, in your faith-based work culture: Proverbs 26:27 – Who so diggeth a pit shall fall therein: and he that rolleth a stone, it will return upon him.
Mrs. Jones presented to my office approximately six months ago having been told that she had type 2 diabetes two years ago. Her HbA1c was 8.2. This is a measurement of how well glucose has been controlled for the previous three months. Normal is under 5.7 and anything over 7 is typically considered too high. Her number correlated with an average blood glucose of 186 and we know it needs to be under 120 to avoid serious diabetic complications. Since her previous primary care doctor had not been able to adequately help her, I sent her to an endocrinologist. She returned to my office six months later and was proud to point out her HbA1C which was down to 6.2. She said to me, “I read my records from my previous doctor. She told me to diet and exercise. That’s all she ever said. She never told me why it applied to my diabetes. Now I understand how increased weight and lack of exercise affects insulin. Why didn’t she tell me those things?” I thought about it. Why didn’t I tell her? I assumed that the physiology and treatment of her condition had been well explained to her and that she was just ignoring her doctor’s advice. Diet and exercise alone as words are not powerful enough for people to understand their importance. Education is more than advice. It includes understanding the significance of the recommendations.
How many times am I guilty of the same poor communication technique? Doctor comes from the latin docere, to teach. It is part of my job and I hope my patients feel comfortable enough to say, “Hey, I don’t understand that” when I am unclear. Only by working together can we hope to improve the “outcomes of chronic disease”. And more importantly, my patients will feel better and live longer.
Sitting next to +Ronan Kavanagh in a nice French restaurant after the first day of the Doctors 2.0 conference, he commented, in his lovely Irish brogue, “You know, at our age we are not supposed to have the opportunity to make so many new friends. But look at this table, all brought together by a common bond.” What great fortune, to be sharing dinner with six interesting people who I’d had the fortune to meet on Twitter during the last year. The cool thing was–they were every bit as awesome IRL (in real life) as they are on line. All of us share a passion for making the patient experience better using digital tools–gamification, the quantified self, video patient information, social media for physicians and patients, etc. And while I didn’t meet John Brownlee on Twitter, he was the other common bond amongst us; the CEO and founder of ClearMD who organized the meal. The Doctors 2.0 conference brought doctors, patients and entrepreneurs together in an incredible setting, la Cité Universitaire:
We heard from healthcare startups, e-patients, pharma, doctors and medical futurists among others while networking and eating French snacks. Maybe it was the wine, but when the two day conference was over, I was left with a hopeful feeling that patients, doctors and healthcare entities who put patients first can brainstorm and make a difference for the better in patient lives.
My nose and sinuses feel like they are about to explode. I am moving into the third week of this and it’s getting old. At first I thought that my cold had morphed into allergies but now it is apparent that two viral loads in a row have slammed me, both affecting my upper respiratory tract. If a patient walked into my office as miserable as I am right now my advice would include a steroid dose pack to shrink the swelling, some decongestants, lots of fluid and rest. Since it has been going on for so long if the patient insisted I would probably toss an antibiotic in there as well though it is clear (to me) this is not a bacterial infection. I am using a multi-symptom nighttime OTC cocktail along with a topical antihistamine at night and a decongestant with a expectorant during the day. I have no fever and there is nothing to suggest a bacterial component. Reflecting on my illness, it occurs to me that one of the reasons doctors are uncomfortable taking care of doctors is that we are the ultimate e-patient. We are participatory, we understand the underlying disease processes and we often waver between allowing the treating doctor to be in charge and taking charge. We want to be partners in our healthcare because we have the training for it and yet hesitate because that’s not the way it’s done. It brings to mind a moment in my first pregnancy (in eastern KY) when my nurse midwife told me to skip the hospital prenatal courses because I needed to be a patient, not a doctor, and the classes would thrust me into a difficult role in such a small community. I remember feeling relief and feeling good about “only” being a patient. Those times when I have needed to be a patient my choices in physicians have assured me that I would be a partner in my healthcare decisions. Most doctors find taking care of other doctors, or their family members, challenging. This can be both self-inflicted and patient-generated. As patients become more engaged in their healthcare perhaps taking care of our own kind will become less anxiety-producing. We will feel confident that no one is “only a patient” because all patients will be partners if they so choose.
A text lights up my phone late in the evening. It’s from someone who is a patient but we’ve been together for so many years I consider her a friend. She has my phone number from other times she’s needed medical advice. She knows me well enough that she can assume I am adept at texting though we’ve never communicated that way before. The patient is immune deficient and somehow managed to scratch her leg. It didn’t originally look all that bad but in the last hour or two it has become red and swollen around the scratch and she is concerned about cellulitis.
There are no Immediate Care Centers open this late on a Sunday night. It is not clear to me from the description, even after speaking with her on the phone, if it is bad enough to need hospitalization. If not, the best care would be to start an antibiotic tonight and check it in the morning. My choices: send her to the ER at the height of flu season (a terrible idea for anyone but especially an immunocompromised individual), have her wait eight hours until morning and I can see the wound, treat it empirically, or have her send me a picture. The picture can’t be in a text because that’s not HIPAA compliant. It also can’t be email because that’s not HIPAA compliant. SKYPE? Maybe but I’m not sure how good the encryption is.
So I sit on my couch and weigh options–all the while thinking, “How did we get in such a quandary, where taking the best care of the patient is not first on my list of considerations? Where common sense is delegated to the back of the bus behind government regulations and insurance rules? And where the technology to make all this simple can’t be utilized to help my patient or me?” Patient portals are great but can she figure out how to load the picture on it? And our portal only accepts up to a 50 MB file. What if it’s larger? Will she know how to reduce the size? Yes, I could do what my 1950’s MD ancestor would do, which is hop in the car and make a house call, but he only saw 12 patients in the office the next day and made relatively leisurely rounds at the hospital. Not the frantic 20+ I’ll see tomorrow, needing all the rest I can get.
Last week I attended the Mayo Clinic’s Annual Social Media Summit in Rochester. What most impressed me had nothing to do with the conference. On Tuesday afternoon before the Summit began I toured Mayo Clinic. It was supposed to be for an hour but lasted more than two because our group, consisting of one doctor and nineteen PR professionals, was so interested in the information being fed to us. I don’t know why the publicity folks were so intrigued, but for me Mayo’s philosophy of “patient-centered, physician-led” care hearkened back to a time when the patient-physician relationship was inviolate. It was stimulating to realize that my instincts of how medicine is best-practiced are right on target. My myopic opinion regarding the fragmentation of healthcare sees the destruction of the patient-physician relationship by multiple entities, who are primarily interested in a piece of the economic pie, as central to our healthcare mess. At Mayo, no project moves forward unless there is a physician who champions it and it is the physician’s responsibility to ensure that every project is dedicated to improving some aspect of patient care. Physicians are salaried so they spend the time necessary to care for patients and are not incentivized to increase the numbers of patients seen or do procedures to enhance the bottom line.
Every person I met who worked for Mayo reiterated the importance of putting patient care and comfort first. It was incredibly refreshing. The Mayo logo emphasizes a patient-first policy as well. I’d seen the logo multiple times but somehow never thought about what the three shields represent. Our tour guide explained: Patient care, research and education. The educational aspect was obvious as we walked multiple floors of patient care areas. I noticed no TVs in patient waiting rooms but many had computer screens where patients could learn about their conditions. It is a refreshing and calming atmosphere without the cacophony of media noise. There is art everywhere. Waiting rooms are spacious and well-lit. Meditation rooms and educational spaces abound.
Children’s waiting area
Mayo has always represented excellent healthcare in my mind. Patient reports that come to me after a visit there are extraordinary due to the extent of the integrative care the patient experiences from multiple medical disciplines coming together. I expected to be impressed. I did not realize I would also be reassured. Putting patients first is what I’ll continue to strive to do, despite insurance interference, governmental policies or EHR dysfunction.
Somewhere mid-morning on Friday I lost control. Things were perking along very nicely and then suddenly (or so it seemed to me), I was nearly an hour behind. Up until then even my EHR notes were signed at the end of each visit. Perhaps it is my German heritage, but my skin begins to crawl when patients wait more than fifteen minutes. For years it has been a matter of pride that they rarely waited longer than five or ten minutes and frequently they were seen within a minute or two of their appointment time. Nor did patients feel they were getting short shrift from me. My scheduling clerk knew her business and the patients well enough to pad an appointment when necessary. In the last three months that has not been the case. Hopefully this is temporary due to the extra time involved in learning our new documenting system but being behind brought me to a reflection on the importance of timely appointments.
Sometimes, no matter how good my intentions, the cards are stacked against me–Mrs. Jones lost her job and her mother in the same month; Mr. Bausier came in for a cold but just happened to mention the pressure sensation in his chest that seems to be more frequent and is associated with exertion; and in listening to Mrs. Roberts’ heart it is obvious that the rhythm is just not right. And all in the same morning. Other times, it’s more personal–I’m talking to a patient whose daughter went to high school with mine and we have to catch up or my favorite French national comes in who prefers to tell me her medical problems in her native tongue. Not because it’s better for her but she knows I need the practice.
On Friday, my schedule was so off that by the twelfth of thirteen patients that morning my sugar was low, my mood was cranky, and my thought processes had slowed to a crawl. Frustratingly, somewhere in the brain fog I recognized those last two patients did not get my best care. Did they recognize my distress or just think that Dr. Nieder didn’t care about their needs? Statistically patients have a problem speaking up for themselves in a doctor’s office[1,2] and in my own uncomfortable state of mind it is unlikely I would have picked up on their discomfort!
Someday, hopefully soon, the office will find the right balance in scheduling for our new system. For now, I’m taking a lot of deep breaths and hoping that patients know I still respect their time and am struggling to give them good care under difficult circumstances.
Mrs. Smith is adamant, “That amlodipine is making me tired! I can’t take it.” Ms. Smith is 86 years old and her blood pressure is reaching a systolic of 200. She’s still mentally alert and volunteers at a local hospital every week, drives herself to places nearby and lives alone. It is scaring me because I don’t want her to stroke. This is the third BP med she has rejected in as many months. I’ve checked for other causes but think her age is just catching up to her. Previously she has had a systolic in the 150’s and several years ago we tried several meds, all of which she refused to take. I gave up then but now I’m much more concerned. She has no family to speak of…we go over the pros and cons of the medication. She reluctantly agrees that if she dies from a stroke that would be fine but being in a nursing home unable to talk or walk would be horrible. She will try the medication for another month. “But doctor if I can’t do the things I want to do, I am not going to keep taking it!” She agrees to try it and surprises me with a hug as she walks out the door. “It’s OK Dr. Nieder, I’m not going to live forever.” Tim Jones slammed his finger in a door and sees the hand doctor on Monday for a non-displaced fracture of his little finger. He wants to ride this weekend in a 100 mile bike ride for some charity or other. “Honestly, what is the risk?” We discuss the fact that the ride itself could cause swelling of the fingers and lots of pain, not to mention if he falls and hits it. “They splinted it really well at the immediate care center. I promise not to take too much ibuprofen.” I give my blessing and hope he is safe. Mary White arrives, late as usual. My staff is used to that, so they try to schedule her at the end of the day. She has a short litany of minor issues, brings me up to speed on her minor medical problems with specialists, has her yearly exam, we discuss her perfect blood chemistries and she is out the door. After 25 years, my patients have me well-trained. And vice-versa–they only call me at night with true emergencies and they apologize when they wake me, they rarely call for last minute refills because they forgot, they bring their meds with them when they come for an appointment and they arrive on time because I’m on time (well, at least I was until Electronic Health Records began three weeks ago). Reflecting on my practice it occurs to me that this is what I hoped my patient relationships would be like at this point in my professional life. Mission accomplished. Wonder what comes next?
My Saturday morning walking partner asked me yesterday, “So when do you get to quit being an IT professional and go back to being a doctor?” Wow, good question.
In the not quite three weeks of this new form of documentation I have been consumed with trying to understand and make the EHR work for me. No longer do I have to consult a “superuser” every ten minutes with questions but every day I’m trying to figure out the most efficient way to care for people using this frustrating new tool. The “muscle memory” is beginning to kick in thank goodness, so time per patient is less. Now my frustrations are more with what seems to be a very inefficient system. I struggle to determine whether I am the problem or the EHR is. Most likely it’s a little of both. The term Mission Hostile User Experience coined by Scot Silverstein comes to mind. What is scary here is the potential for patient harm – between my distractibility due to the steep learning curve of the Allscripts system, the fact that no one has told us how to clean these “Toughbook” fomites that we carry from one patient exam room to the next, and the patient care error potential inherent in the software itself, these are the ever present worries that keeps me up at night.
On Thursday of this week, the EHR Steering Committee for my organization will meet and I will have the opportunity to present the go-live experience and make suggestions for improvement as other offices in the system go live. Throughout this process there has remained a sense of re-inventing the wheel, which seems odd considering that Allscripts EHR has been in existence for years, having gone public in 1999.
At any rate this blog is obsessed with EHR right now–but the essential question remains. When do I get to go back to taking care of patients?