Chronic illness needs to be managed at home, not at the hospital

“You know, what Mr. HD really needs is for his mom or somebody to chain herself to him…” [the ICU team laughs] …

“But seriously, he needs to be watched over, he needs to be talked to. He needs someone to give him his medications, someone to take him to his appointments, someone to take care of him. With that somebody he can live for years to come. Without that somebody he will die next week.”

It wasn’t the kind of thing you hear in the medicine, let alone in the ICU. Usually, rounds in the ICU are a string of numbers punctuated by phrases in the passive voice such as “anesthesia was called,” “pressors were started,” and “patient was then coded and died.” But here amongst our General Electric ventilators, continuous heart rate monitors, and dialysis machines, in front of an ICU team of over a dozen doctors, nurses, and pharmacists, the attending physician was suggesting that it wasn’t going to be technology or specialized medical knowledge that ultimately saved this patient’s life; rather it was going to be the people in his life. He went on to ask my intern and I to sit down with Mr. HD and his mother to discuss his illness and suggest they reach out to local churches or other organizations to help him stay healthy and out of the hospital.

It’s not every patient that stands so clearly on the edge of a long life and imminent death. Many, if not most, of the patients we care for in the ICU suffer from chronic, irreversible conditions such as end-stage COPD or untreatable, metastatic cancer. At best many of them are looking at a few months of life left, in spite of the heroic measures we take in the ICU. But Mr. HD was different. At 32 years old, he was as far as he knew healthy until just 4 months earlier. He was losing weight and occasionally woke up in sweat but otherwise was doing okay. But then, almost suddenly, he began to feel short of breath and developed fevers. Reluctantly, he went to an outside hospital ER, where he was admitted to hospital and eventually taken to the ICU and intubated. He awoke days later from the ventilator to learn that he was HIV positive. HIV had not only devastated his immune system, which caused him to develop a life-threatening pneumonia, but had also ravaged his kidney and heart. In addition to AIDS, Mr. HD now had to contend with end-stage kidney disease (ESRD) and heart failure.

Since then Mr. HD had been in and out of hospitals with pneumonia and other complications of his multiple severe illnesses. HIV/AIDS, ESRD, and heart failure are treatable. But Mr. HD had never been ill before and was “not compliant” with this treatment regimen. He often missed doses of his HAART (highly active retroviral therapy, pronounced “heart”) that would have combated the HIV virus and allowed his immune system to recover; he refused to go to dialysis and have a machine do what his kidneys could no longer do for him until absolutely necessary; and he continued to eat what he wanted and miss his doctor appointments that would have kept his heart failure at bay.

So on a recent trip to Chicago to visit his mother, he once again became acutely short of breath. When he finally got to our ER, his lungs were tiring out, and he was immediately intubated. Four days later, after treating his pneumonia with broad spectrum antibiotics and pulling liters of fluid off his lungs, I finally had the opportunity to introduce myself as one of his ICU doctors once he recovered enough to have the breathing tube removed.

With his acute illness resolving, the question was what to do next. We were proud to have brought Mr. HD back from the brink of death, but at the same time knew what would happen if we didn’t reach out to him and help him better manage his chronic illnesses. Here in the ICU he never missed a dose of medication, always went to dialysis, and ate whatever he gave him, but what would happen once he got back home? And with three very treatable illnesses, the opportunity to make an impact could not be any greater. People with ESRD can live for years on dialysis; life expectancy for people adherent with their HIV/AIDS regimen is now well over 65 years; and heart failure is a readily managed condition. But without better self care, Mr. HD was life-threatening illness away from death.

Though less dramatically, this is the same problem faced by the millions of people with chronic illnesses. Chronic illness is not managed in the clinic, the hospital or the ICU. People live and die by their chronic illnesses by what they do at home. Right now, only a fraction of people with chronic disease take their medications as prescribed, make the right lifestyle changes, and follow up with their doctors regularly; they in fact are the minority. Most people need additional support, but tragically, the health care system is designed around doctors and clinics, not patients and communities.

The question for these millions of people with chronic disease, and for Mr. HD, is how to better support self-management. In my research, as a way to extend the reach of the health care system into people’s homes, I am using checklists to translate complex medical care into simple to-do lists and automated text messages to remind people to take their medications. But in thinking about Mr. HD, I realize that for many people even these innovative approaches won’t be enough. As my attending suggested, what would make a difference is connecting Mr. HD to his community. People with chronic illness not only manage their diseases largely outside of the health care system, but also largely do it alone. What we need for people like Mr. HD is a community-based approach to health care: a care van that takes him to his dialysis sessions, lay health workers who check up on him from time to time, and peers with whom he share the experience of living with HIV.

After a couple more days in the ICU and then a week on the general medicine floor, Mr. HD went home with his mother. As his health care team we took a number of steps to ready him for the transition. At varying points in his hospital care over a dozen doctors, nurses, medical students, and social workers sat down with Mr. HD to talk about his medical condition. They found him a new dialysis center closer to his mother’s home, set up additional services at home including physical therapy, and counseled him for hours about the importance of following his medical regimen.

But it wasn’t enough. Yesterday, early morning, Mr. HD returned to the ER short of breath. Again, sensing impending respiratory failure, the doctors in the ER immediately intubated him. He’s now back in the medical ICU comatose on the ventilator. Like millions of others living with poorly controlled chronic illness, it’s going to take a village to keep Mr. HD healthy and out of the hospital. Let’s hope he finds his village before it’s too late.

Shantanu Nundy is an internal medicine physician and author of Stay Healthy At Every Age: What Your Doctor Wants You to Know.

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  • Janet

    I sometimes wonder if this level of non-compliance is akin to passive suicide. Of course, the other question is how much should society spend to reel someone back from the brink of their self-induced destruction repeatedly.

  • Jeff J.

    I agree that Mr. HD and many others would benefit from a community based approach to their care. Many of my patients can’t access to the resources they need without assistance. Some of the barriers they face are language, the absence of a strong support system and their unfamiliarity with our confusing health care system. In the past year I’ve had the pleasure of working in a long term home care program whose goal is to keep our elderly in the community and prevent unnecessary hospitalizations.

  • Pattie, RN

    I (sadly) agree with Janet. In my experience, patients like this gentleman fall into two categories: those who really are depressed and overwhelmed and want to die, and those who can’t get their brains wrapped around the severity of the illness or illnesses, and are convinced that the hospital can fix whatever is made worse by their medication, diet, and lifestyle choices. The trick is~~~group one needs to be uplifted by support, and group two needs a kick in the ass and the clarity that medical intervention can not…or WILL not…fix their self-inflicted maladies.

  • greg zurbay

    Dr Nundy makes an excellent point about what needs to be done to solve the problem of the chronic patient. But it may be that some patients are totally outside the realm of logic.

    By this I offer the example of the 50% of people in the US that believe in creationism – that this world is less than 10,000 years old. These deeply held beliefs do not change even with direct evidence. Does the chronic patient also believe that since they made it through the last crisis now reality will again conform to their expectations? I knew a high functioning drug and alcohol abuser. He lurched from crisis to crisis for years while having a life. His brain chemistry seemed to be changed so he was incapable of the thought that what he was doing might harm him. This was in spite of input from many individuals.

    I help people with muscle overuse injuries, and often after resolving one injury they will guarantee additional problem injuries as though they did not have the learning experience of the first injury. Rather than being stubborn I now think it may be a case of some personalities being such that they believe reality will conform to their belief system. I would be interested to hear of research that has been done in this area.

    I recall the saying of disfunction goes something like: you know they are crazy when they keep engaging in the same behavior, while expecting a different result.

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