My first patient

Follows are edited and revised notes for a six-month class project that I undertook during my first year of medical school, in 2010. These are vignettes written on my first patient, Mr. C., and reflections on the sociopolitical situation surrounding his medical condition.

I’m a little nervous. This is my first meeting with Mr. C., the man that Dr. D.S., my mentor, has suggested that I work with. I know in advance just a few brief facts about him: Almost 80 years old. Former alcoholic. Heart problems. Anemic. Kidney problems. In and out of the hospital. Some arthritis. “He’s not looking…that great,” Dr. D.S. states as we walk down the hall.

As I enter the examining room with Dr. D.S., I see a frail black man lying supine on the examination table. Mr. C. is unresponsive. His step-daughter raises her voice to indicate I am there. He blinks and cranes his neck to see me. I introduce myself again and explain why I am there. He seems exhausted. His step-daughter and friend don’t seem too concerned, however.

Mr. C. perks up when Dr. D.S. begins to speak. “OK, Mr. C., what would you say are your biggest concerns today?” With a little input from Mr. C. himself, we find out he’s had a loss of appetite for about a week and a half, an upset stomach and he looks like he’s lost some weight (though his weight measurement is apparently normal). He’s been coughing, his feet are swollen, he’s not urinating, his lungs are crackling, and he’s worried that his shingles has returned. Dr. D.S. frowns, and takes a look. “Nope, that’s not shingles.” Dr. D.S. has Mr. C. sit up, and he takes his blood pressure (low) and his oxygen (normal). Mr. C.’s hands, gnarled and stiff, are characteristic of the rheumatoid arthritis from which he suffers.

I glance at Dr. D.S.’s face. He looks worried. “You’re not looking too good, Mr. C.,” he says to him. After considering the options, Dr. D.S. decides to admit Mr. C. to the hospital. It’s just a short drive away, but he suggests getting an ambulance. His step-daughter is worried about costs – last time, they were billed for using the ambulance. Dr. D.S.’s frowns deepen – they should not be charged for something like that. But after a checkup on the neighboring hospital’s ED status, which is overflowing, they decide to use an ambulance anyway, as it is most likely going to bump him up a little in the ‘emergency’ level list.

Dr. D.S. and I discuss Mr. C. after he has left. He appears cachexic – a word I don’t fully comprehend, but which I scribble down in my notebook in any case. “His loss of appetite is a poor sign in his heart failure state,” Dr. D.S. intones. His prospective prognosis? The next six months are crucial. “Many patients die from congestive heart failure.”

Six months. By then I will have finished this project. I will have gotten to know Mr. C…what if he dies? I’m scared to get close to him. I don’t want to do that and have him die.

*

When Mr. C. is initially hospitalized, I try to inform myself of his medical background.

His medical record reads as a series of hospitalizations and re-hospitalizations, accelerating in frequency over the past few months for the same symptoms: leg edema, shortness of breath, and weight gain. His heart failure continues to decompensate, and with each hospitalization his kidneys go into acute failure. I use the opportunity to look up and learn about cachexia, congestive heart failure, renal failure, and hyperkalemia – words that are new to me. My perusings do nothing to reassure me.

I stop reading. I feel uneasy, but push my thoughts aside.

*

It’s been more than a month since I last wrote.

Mr. C. is dead.

I found this out yesterday. I had been emailing back and forth with Dr. D.S.. After staying in the hospital for a long time, Mr. C. had been discharged to a rehabilitation center. Dr. D.S. and I had been planning on going to visit him a week later, but something had come up and we had had to postpone our trip.

I had been thinking a lot about Mr. C. all day after our lecture discussing long-term care, particularly with respect to the elderly, since we were taking a required course on health care policy. I was intrigued by the newly-learned fact that Medicare covers post-acute rehabilitation care for 100 days after hospitalization – and that there exists an interesting loophole, namely that this 100 day-period renews with each hospitalization. Mr. C.’s recurrent hospitalizations were a unique feature embedded within his complex medical history that I had briefly mulled over previously. I was excited by the fact that I could take this policy information and understand how it applies in the context of Mr. C., a real-life person who could give me his perspective on his own situation.

And so it was with this excitement that I earnestly emailed Dr. D.S. yesterday evening, to follow up on our visit with Mr. C.

To which Dr. D.S. responded with an email containing the bad news: Mr. C. had passed away the previous Friday.

My immediate response? Nothing. The next morning? Nothing. I wake up with a sense of uneasiness to dreams that are vivid yet forgettable. I pass through the motions of the day, busy with lectures and attending a motivational lunch talk on vegetarianism. My friend, an avid carnivore, snaps at me when I start talking to her excitedly about vegetarianism. Baffled by her sudden unwarranted hostility, I decide to ignore the incident. After organizing every aspect of my life except the emotional one, I walk into the student affairs office with the intention to speak to one of the course administrators.

Twenty minutes later, I’m sitting in front of Dr. N.O., our dean of student affairs. I start asking about what I should do with the course: get a new patient or drop the course? “Wait,” she stops me. “How are you feeling? Your first patient dying? Are you OK?” “I’m OK,” I respond. I pause. “Well…it’s just that…I knew there was the option that he would die and so I was afraid to get close to him. And now, he did die. I didn’t get to know him very well and on one hand, maybe that’s good, but on the other hand, it’s a shame that I never had the opportunity. I never got to ask all my questions.” A sudden wave of sadness hits me. My throat catches but I swallow the emotion down.

I wander into the atrium despondently, hoping someone asks me why I look so sad. Everyone’s busy, occupied with funding proposals and exam preparations. I walk home, and in the biting cold – it’s January – I feel the tears stinging my eyes. I take out my cellphone to call my friend, to find an apologetic message from her. I start to cry.

It doesn’t help that my friend had upset me.

It doesn’t help that I am PMSing.

It doesn’t help that I found out so impersonally.

It doesn’t help that I didn’t know him that well.

It doesn’t help that I knew this might happen.

It still makes me sad.

*

Reflections:

When I started this project, I had envisioned some exciting medical case, a heroic and tragic story of a person who had been battling with some exotic disease and was waging a personal war against this foreign attack. I planned to write a story about this patient’s life: his childhood, his normal existence as a ‘person’ prior to this disease, his conversion to a ‘patient’, a foot soldier in the battlefield, and – if I could control life – his victory.

From the very first meeting with Mr. C., I sensed that my casebook of excitement and glory was not to be. Here was not an atypical elderly man, suffering from heart disease, something that afflicts millions of people around the world. I remember that first meeting with Mr. C., where he was barely lucid. I talked mainly to his daughter, trying to understand who this man was, with a gnawing and guilty realization that it might not matter. I remember my discussion with his doctor after he had sent Mr. C. straight to the hospital, my heart sinking with the mention of every complication. I went home that night, my head swirling with the fear of getting close to someone who seemed so near to dying. Mr. C. was discharged from the hospital several weeks later to a rehab center. I never got to meet Mr. C. a second time. After several unsuccessful attempts to visit Mr. C., his PCP and then I found out about his death through an anticlimactic and meaningless email, his passing hitting me in that one electronic line. We never did find out exactly how he died.

And yet, even though my casebook is not an exciting tale of a patient overcoming his own personal shortcomings and emerging victorious over a disease, the story is heroic nonetheless. He emerged victorious from his alcoholism with more than a decade of being sober, yet his loss in two other key battles was fatal: one against congestive heart failure; and a war against the maze-like health care system, where Mr. C. was but one soldier against this invisible behemoth. Thus, Mr. C.’s story is of an ordinary man – who could be any of us, our father, our friend – who, in solidarity, rather than solitarity, represents the struggles we face, overcoming our own innate obstacles and trying to make sense of the disorganized system in which we live.

In his last year, Mr. C. was hospitalized – from what I gathered from his clinical records – more than five times, for reasons related to his heart failure. As it turns out, this is not uncommon for patients with congestive heart failure. Are there ways that we can avoid recurrent rehospitalizations? Even more importantly, is it realistic to aim for no readmissions in the setting of CHF?

The current standard of care is the use of visiting nurses and hospice care. Mr. C. was taken care of by a visiting nurse, but this service was not 24/7. Round-the-clock care, through a hospice service, is what is often indicated for end-stage heart failure. However, hospices weren’t designed for the care of patients with CHF in mind. They were originally designed for end-of-life care for patients with solid tumour cancers, and to qualify, the patient’s anticipated survival time must be estimated at less than 6 months, and the patient must not want life-prolonging medications. This model doesn’t really work very well for a CHF patient, who needs medications to be kept alive, and for whom it is difficult to predict how long their heart function can be drawn out. From a physician’s perspective, it is challenging to determine how a patient with CHF is doing, and requires that the doctor evaluate whether the overall trajectory of the patient’s heart function is declining, independent of whether that patient’s heart function has improved relative to a previous appointment. A final problem with regards to traditional hospice care is that most hospices aren’t trained to provide IV medications or inotropes to CHF patients, and that staff have very little expertise and knowledge for palliative care of CHF patients.

Hospice care has, fortunately, been evolving over the past ten years. These new designed hospices recognize that unlike in cancer care, where the patients’ symptomatic care and treatment are two different things, CHF care has the same treatment for both the actual treatment as well as control of symptoms. Thus, these hospices are able to administer IV medications and use advanced technologies (which includes providing inotropes IV, and learning how to turn off LVADs, pacemakers, defibrillators, and other mechanical assist devices). Therefore, patients are given the medications that they need (ACE inhibitors, beta-blockers) while also supporting their psychosocial and spiritual functions, importantly, educating the patients and their families. This new model for palliative care in patients with CHF, known as a “patient-centered, family-focused” structure, has supposedly had positive results, including decreased hospital admissions and readmissions, improved quality of life, decreased stress and distress, and decreased costs of care.

Hospice care is but one of the strategies used to try to decrease hospital readmissions in CHF patients. Other new strategies focus on patient education; studies have shown that simply improving patient health literacy could reduce readmissions. Hospital programs to educate patients on their conditions and what to expect are being implemented, but their ability to reduce readmissions is not yet proven.

What about electronic monitoring? A study was done on the efficacy of the use of telemonitoring, whereby patients are phoned daily to obtain vital HF-related symptoms. Unfortunately, they were unsuccessful in lowering readmissions rates. In another study that tested an implanted device that wirelessly transmitted vital data daily, did show a reduction in hospitalizations, but not in overall survival.

So, what we currently can offer CHF patients in the improved hospice care model isn’t really working, and many new strategies have failed or have not been proven to work. As we move to restructure our health care system, we need to think of better ways to manage patients with chronic conditions such as CHF. There are some key steps that we can do. One is provide reimbursements for end-of-life conversations for physicians to have with CHF patients and their families, to educate patients and to ensure patients can pass comfortably and not in an ER. Second is to provide a framework both to give CHF patients the clinical care they need while managing their psychological, social, and spiritual functions, as some of the new hospices are trying to do. Third is to ensure patients and their families are adequately educated on their disease and its symptoms. Do patients really understand what ‘heart failure’ means? Perhaps a clearer name can solve this problem.

Mr. C. may have fallen through the cracks, as many have before him and many will after him. As our young minds think of ways we can improve the health care system, and as I continue my path in medicine, I will remember the death of my first patient, the vague circumstances in which his death occurred, and the faults in the system that may have accelerated his death…and I can only hope that the times will slowly change.