From the brink of hospice to awaiting a reading machine

It was a beautiful Monday morning in May. Yawning uncontrollably, I hopped into a Ford Hybrid with my attending and drove off to visit a patient who lived two hours away from our hospital. I woke up especially early that morning since we knew the commute would take many hours.

We drove past open fields and a few cows before pulling into a driveway of a lovely house with a cute garden behind it. A middle-aged lady peered through the screen door and waved. My attending waved back as we clambered out of the car. She opened the front door and hugged my attending like a long lost friend, which she practically was, as they caught up over a short conversation before moving on to discuss her brother, Mr. R.

Mr. R was blind. He could not and had not left his one-windowed bedroom for many years. When my attending was called about Mr. R a few years ago, it was a consult for home visit evaluation for hospice – Mr. R had such severe COPD that his prior provider thought that there was nothing more medicine could do for him. When my attending first met Mr. R, he was in bad shape – he was bound by yards of oxygen tubes connected to a tank, however not quite long enough to reach anywhere but his bathroom across the hall from the bedroom. That did not matter much, since getting up from bed was a huge feat causing severe shortness of breath. The blindness did not help either.

My attending agreed to see him under special circumstances. Mr. R lived outside the usual range of home care visits provided by our hospital – she was hoping to set him up for hospice during a one-time visit. However, as she looked at Mr. R more closely, she realized that his COPD was not yet optimized and that medicine deserved a fighting chance. She set out to work as his new primary care doctor, driving out to his house over the years to provide medical care – if Mr. R could not get up from bed without gasping hopelessly for air, there was no hope of traveling to the clinic for him.

I looked at Mr. R with a hidden surprise, watching him grin as my attending entered the room. He was thin with a well-kept white beard, looking incredibly full of life for someone previously considered for hospice. I felt his firm handshake and observed in quiet wonder – Mr. R was breathing normally, speaking in full sentences, on 2Liters of oxygen. He reported that he was doing very well, taking inhalers as prescribed and finishing the last of his prednisone taper, which allowed him to titrate his oxygen down to 2Liters. He could get up from bed and make it to the bathroom, although still short of breath by the end of his journey. He appreciated the visit by the good people at the blind rehabilitation center, who helped him cope with blindness and promised him a reading machine.

I stuck a pulse-oximeter on his finger, which beeped after a few seconds showing 94% oxygen saturation and a heart rate of 80 – his vitals were much better than my guesstimate. His lungs were a bit wheezy, although with good air movement. We drew his blood for testing and decided to adjust medication by phone after results came back. We concluded the visit – my attending gave him a hug and promised to follow up on his reading machine. As I asked Mr. R for a trash can to dump a piece of used gauze, a weird sense of humility hit me – suddenly I did not know where things were and was at the mercy of my patients, I could not go into other rooms or touch anything unless permitted by Mr. R – is this what patients feel like on our turf in clinic?

My attending talked with his sister in the hallway afterwards regarding the plans of care for Mr. R, and she thanked us profusely for making the trip out to her house – a familiar happening during a home-care visit. I took my last look at Mr. R facing the one window in his room, as if he was staring through it, and thought about how far he has come – from the brink of hospice to awaiting a reading machine. I turned around and climbed back into our vehicle, driving a long drive back to the city.

In this day and age when our population is growing older and fewer people have the time or resources to go to doctor’s appointments, home care visits by doctors have become increasingly valuable and life-saving. Home-bound population is greatly underserved, and capacity for home-care visits is limited, most of all by time and distance. Doctors can only travel to so many patient destinations in a day.

With the increasing popularization of mobile technology, a new model for home care visits emerged – one that could save time, expand home-care capacity and utilize community-based health care. I amateurly dubbed it, “The Home-Care Node System.”

The Home-Care Node System consists of two major nodes: a single physician node in the center at the hospital interacting with multiple allied health nodes situated in the patient’s neighborhood. In the node system, physicians make the first home-care visit along with a team of allied health professionals (who live near the patient) to perform initial intake together – the team can perform physical exams first-hand to document an agreed baseline on the patient. For subsequent follow-up visits, allied health professionals become the eyes and hands for physicians. They go out to patient’s home, easily since they live nearby, equipped with a video-ready device (maybe an iPad, maybe a laptop, fill in your own blank here).  Video conference is linked to the physicians at the central node, allowing them to take history, maybe take a look at a rash on the patient’s foot, and listen to reports from allied health professionals who can answer any questions that video footage or patient’s account cannot answer. Allied health professionals can take vital signs or draw labs if needed.

The only missing ingredient is the ability to repeat physical exams by the physicians in person, but I argue that this is not extremely important. Allied health professionals can perform the physical exam and share their findings with the physicians. Most physical findings that matter do not require MD training to recognize. If a wheeze is too tiny for an untrained ear to hear, then the lungs are practically moving good air on the grand scheme of things. If a wheeze is prominent and diffuse, a medical student will hear it and so will a physician attending. If there is any doubt, a physician can make a special trip to the patient’s house to investigate further, but for all other non-subtle findings, allied health professionals in the area can free physicians to take care of more patients in wider areas of service. There is also much to be said about community-based health care – local allied health professionals understand the environment that the patient lives in and have invested interest in improving the health of their community.

The Home-Care Nodes will not be easy to set up in our maze of a health care system, but a lot of great inventions sprout from what-ifs that were given a try. As I sat down to write my home-care visit note for Mr. R and pondered about how far he has come, I daydreamed of a day when home-bound patients are adequately and efficiently served. But then again, daydreaming is a powerful thing – as long as we act on it.

“angienadia” is an internal medicine physician who blogs at Primary Dx.

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  • Muhammad Saifudin

    So many systems are cyclic. I am sure many, particularly ‘boomers’ like myself, still remember the family GP coming to the house. As a child in a suburb of Pittsburgh, PA, our family physician was only a few miles from our home, but, one call for one of us with a fever, was enough, and one of two docs came that day. A sensible way of treating patients is being discussed again and indeed, it is not a new discussion. It is but a twist on VNS and with current technology much can and is done in the home. That kind of medicine really develops a close patient/provider relationship.

  • Suellen Nelson

    I am hoping that New York State will pass legislation to allow PAs to be part of the Hospice team!

  • Dorothy Green

    This was a great post. If there were many, many more home visits and perhaps patients going home to hospice much sooner than is the “norm” now, how much more compassionate healthcare would be and pleasant for the patient. Yes, for many families patients it is “more convenient” and sometimes more humane to die in the hospital or a hospital based hospice but it shouldn’t be withheld. Home care visits are a great way to handle the “limit on how long a patient has to live” to qualify.

    Question: why was this patient even on oxygen with a pulse oximeter reading of 94%? This does not follow Medicare or VA guidelines. It does not relieve shortness of breath (only stopping and resting does) and only helps the cells if the SpO2 is 88% or less at rest or on exertion. Oxygen is often over utilized, expensive.

  • jean harrington

    You have no idea what a digital book player, aka ‘reading machine’, can do for the patient’s mood.Players come free  for every disability and there are so many books to choose from.http://www.loc.gov/nls/

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