JW is a 33 year old black female with sickle cell anemia (SS) who presents with an acute pain crisis. This is her third admission in the last 6 months and she is a “bounce-back” having just been discharged 7 days ago. Her past medical history is pertinent for multiple admission included 2 ICU admissions for acute chest in the past couple of years. She is here today for pain control and is on Dilaudid 1 mg every 2 hours

Intern presentation at morning report

 

Sickle cell “disease” is an example of a chronic illness. It is actually a family of genetic disorders with the most well known being sickle cell anemia.  People who have the disease inherit a substitution on chromosome 11 from both parents. Folks who are unfortunate enough to inherit this disorder are destined to suffer:

The lack of tissue oxygen can cause attacks of sudden, severe pain, called pain crises. These pain attacks can occur without warning, and a person often needs to go to the hospital for effective treatment.

The red cell sickling and poor oxygen delivery can also cause organ damage. Over a lifetime, SCD can harm a person’s spleen, brain, eyes, lungs, liver, heart, kidneys, penis, joints, bones, or skin.

 

This is the medical condition. As a doctor, we give pain medicine to make the pain go away, we give antibiotics to treat the infection, we treat the low blood count with transfusions…in other words, we do what we can. What we can, for some patients, isn’t enough. This is one example of a chronic illnesses that is not curable but instead is characterized by folks getting better and getting worse. What we in medicine call “exacerbations and remission.” There are many other such illnesses.

Sickle cell disease is also characterized by what we call “variable penetrance.” Although the science of sickle cell is easy (Sickle hemoglobin differs from normal hemoglobin by a single amino acid: valine replaces glutamate at position 6 on the surface of the beta chain. This creates a new hydrophobic spot. In a sickled red blood cell, valine 6 (beta chain) binds to a different hydrophobic patch) the body’s response to these sickled cells is dependent on a lot of other things. Some people with this will have a problem with pain only once a year. Others (about 20%) will struggle on a daily basis with pain, fatigue, and the consequences of damage to other organs as a consequence of the randomness of genetic inheritance. This is also true for a number of chronic illnesses. Some folks, for example, have diabetes for years and have no problems. Other folks develop kidney and heart disease almost immediately. How someone reacts to their disease is also, in a major way, genetically determined.

The real consequences of chronic illnesses, for those who are affected the most, are an inability to work and dependence on a healthcare system. Inability to work because, well, people who are tired, in pain, or short of breath all the time make terrible employees. Dependence on the healthcare system because without a job many have no food and can’t pay rent. If there is no food at home or even no home to go to, people with a poorly controlled chronic illness can almost always get admitted to the hospital. Poorly controlled chronic illnesses are the reason 1% of Americans account for 20% of healthcare costs and 5% account for 50% of all costs. Much of that cost is generated by recurrent, preventable hospital admissions that are as much a consequence of an untenable living situation as they are to medical conditions. A sickle cell patient without money for pain medication, for example, will use the emergency room and likely get admitted. The same for a diabetic without money for insulin.

The Affordable Care Act, as written, forced all of us to care about people with chronic illness. Insurance companies would have to give them insurance. Not-sick people would  have to pay for the care provided to those with chronic illnesses though their insurance premiums. Our society would start to feel pressure to move some of the money we spend on healthcare (expensive doctors, expensive drugs, too many needless procedures) into value for patients with uncontrollable chronic illness (food security, supportive housing, transportation assistance, self management support, legal assistance). The challenge in designing the ACA was in figuring out how to cut costs, wisely and fairly, for the disastrously ill and preventing diseases before they become chronic.

We as a practice elected about a two years  ago to work to provide value-based care to our patients with chronic, expensive illnesses. We wanted to reduce avoidable hospitalizations. Mostly because it was the right thing to do but we were encouraged to do so by our healthcare enterprise. They want us to figure out how to make money from “not hospitalizing” a patient.

We changed the way we practice. We employ a care manager to help our patients obtain needed transportation and housing when they are unable to afford such. We employ behavioral health specialists to help patients to learn self-management techniques which will reduce their dependance on the health care system. We use pharmacist to make sure medications are appropriately managed. Physician work on facilitating good care and making sure therapeutic goals are met. It is entirely possible that the patient who suffers from this severe form of sickle cell anemia would be presented to me in this manner:

JW is a 33 year old unemployed woman with hemoglobin SS who suffers from chronic pain and is unable to work full time. She is unable to afford a car and has to rely on public transportation. She lives in supportive housing. Her pain is a 4/10 with her chronic pain medication today. The behavioral health specialists are in the room now, working with her on non-pharmacologic adjuncts to pain. The Care Coordinator is working to get her transportation to her specialty appointments as well as make sure she qualifies for food assistance. She believes that with an increase in her oral pain meds she can overcome this so I will give her a small increase to last for the next several weeks. My nurse will give her a call in 3 days to see how she is feeling.

Despite the current administrations decision not to enforce the health care law (explained here) our intent is to continue to practice medicine and teach others to practice medicine in this manner until we are directed to stop. It is our belief that keeping people out of the hospital is better, always. I hope America feels the same.

Advertisements