原文
Chapter 17 Future Models of Care
Brittney is a thirty-nine-year-old mother of two young girls. She was diagnosed with insulin-dependent diabetes at age eleven and had gotten used to self-injecting with insulin. Despite rigorous control of her diabetes, the disease had begun taking its toll on her body and various organ systems over the course of the last four years. She was developing kidney disease and had been put on medications to help slow the progression of kidney failure. About two years ago, her heart function began to worsen. This came as a surprise, because she felt pretty good and was actively teaching her class of first graders without any limitations. And then a year ago, she developed osteomyelitis, a bone infection involving her big toe. For this she had to receive a six-week course of intravenous antibiotics that inadvertently hurt her kidneys further, and she developed full-blown renal failure. She had gone on dialysis six months ago. By this time her heart condition had worsened despite medications, and now she effectively had kidney, heart, and pancreas failure. She was being evaluated for a triple organ transplant. My job was to implant a defibrillator in her heart so that I could protect her from any fatal heart-rhythm disturbance while she went through the next steps of evaluation of her suitability as a candidate for transplantation. This could take several months or years.
The picture gets a little more complicated when you take into consideration other factors. Brittney lives in rural New Hampshire, and for her to get this care 5 meant that she had to travel multiple times a week to Boston, which is a little over a two-hour drive, one way. Even though she got her dialysis at her local hospital, she had to see multiple specialists across the Mass General Brigham system. Her endocrinologist was at Brigham, her kidney and heart doctors were at Mass General, her primary care and dialysis care was local, close to home, and her general 10 cardiologist was at Wentworth-Douglass Hospital in New Hampshire. She was, in effect, getting her care from four locations, six primary subspecialty clinicians, with another twenty doctors involved in her care as she got her tests and evaluation studies performed, over different practices, hospitals, and states. One can only imagine how complex it can be to coordinate this care across hospitals and doctors working within their own silos. Also, for the patient, just the hassle of traveling, waiting rooms, variable expectations, different practice patterns, and the additional uncertainty of each clinical encounter can make for a miserable experience. But is this problem fixable? Can we make this better?
This is where the concepts of “systemness” and “networkness” come into play. The hospital system is a dynamic, ever-changing, always morphing behemoth. Some of this evolution is happening organically because of the evolving needs of the hour, and some of it is deliberate in anticipation of the needs of tomorrow. The world of clinical care is evolving from an individual, siloed approach to a much larger form of care called systemness, which in turn can lead to a grander form of connectivity, or what could be called networkness. Networkness is an era of openness, where one can seek care anywhere from anyone. There are no borders and no rules, with a change in the social order of the practice of medicine and care delivery to every human being on this planet.
参考译文
第 17 章未来的护理模式
布兰妮是一位三十九岁的母亲，有两个年幼的女儿。她在11岁时被诊断出患有胰岛素依赖型糖尿病，并习惯于自行注射胰岛素。尽管她的糖尿病得到了严格控制，但在过去四年里，这种疾病开始对她的身体和各种器官系统造成损害。她患上了肾病，并开始服用药物来减缓肾衰竭的进展。大约两年前，她的心脏功能开始恶化。这让她大吃一惊，因为她感觉良好，还在积极地教她班上的一年级学生，没有任何不便。一年前，她患上了骨髓炎，一种大脚趾的骨感染。为此，她不得不接受了为期六周的抗生素静脉注射，这无意中进一步伤害了她的肾脏，她的肾功能完全衰竭。六个月前，她开始接受透析治疗。此时，尽管服用了药物，她的心脏状况仍然恶化，现在她实际上已经出现了肾衰竭、心脏衰竭和胰腺衰竭。她正在接受三器官移植的评估。我负责在她的心脏中植入除颤器，这样我就可以在她进行下一步评估是否适合器官移植时保护她免受致命的心律失常干扰。这可能需要几个月或几年的时间。
如果考虑到其他因素，情况就会变得复杂一些。布兰妮住在新罕布什尔州的农村，为了接受这种治疗，她必须每周多次前往波士顿，单程车程超过两小时。尽管她在当地医院接受透析治疗，但她必须去麻省总医院布里格姆系统的多个专科就诊。她的内分泌科医生在布里格姆医院，肾脏和心脏科医生在麻省总医院，她的初级保健和透析治疗在当地，离家很近，而她的普通心脏病医生在新罕布什尔州的温特沃斯-杜格拉斯医院。实际上，她在四个地方接受治疗，有六位初级亚专科临床医生，另外还有二十多位来自不同诊所、医院和州的医生参与她的检查和评估研究。
我们可以想象，在医院和医生各自为政的情况下协调这种医疗服务是多么复杂。此外，对于患者来说，仅仅是舟车劳顿、等待室、不同的期望值、不同的诊疗模式，以及每次临床就诊额外的不确定性，都会给他们带来痛苦的经历。但是，这个问题可以解决吗？我们能让它变得更好吗？
这就是“系统性”和“网络性”概念发挥作用的地方。医院系统是一个动态的、不断变化的庞然大物。其中有些演变是由于当前不断变化的需求而有机发生的，有些演变则是为了满足未来的需求而刻意为之。临床医疗世界正在从单个的、孤立的方式演变为一种更宏观的医疗形式，即系统性，这反过来又会导致一种更广泛的连接形式，或者可以称之为网络性。网络时代是一个开放的时代，人们可以在任何地方向任何人寻求医疗服务。在这个时代，没有国界，没有规则，为地球上每个人提供医疗服务的社会秩序发生了变化。