Reposted from here with permission
It is one thing to be a doctor and another to be a patient. It is a radically different thing to be a medical student paired by your medical school to a physician who is your “patient-partner.” Sounds like a word salad, but that is where I found myself as a first-year medical student at The Geisel School of Medicine of Dartmouth a few weeks after moving to New Hampshire, weeks before I would receive my white coat, months before I would have any clear idea of what the medical world is really like.
The founder of the patient-partner program is Dr. Joseph O’Donnell, an oncologist at Dartmouth, editor of Life in Medicine and a colleague of my newly assigned patient-partner. After years of thinking about it, Dr. O’Donnell proposed that, for my class, he would match each student to an adult or child in the community struggling with an illness or the difficulties of aging, and who would complement the student’s personality because of common interests. The idea, as I understood it, was to have us (the medical students) follow a person we would become acquainted with longitudinally. We would get to know these partners in their daily world, and in doing so, become a part of their medical experience and develop a deeper understanding of how illness affects the lives of patients outside of the medical institution.
During my first week of medical school I was assigned to my patient-partner, Dr. K, based on the knowledge that we both loved dogs and that he was searching for a pet-sitter.
Dr. K is a retired cardiologist and medical legend who resides in Vermont with his wife, Mrs. K. From what I’ve been told: he grew up in Chicago, the son of a world-famous cardiologist, entered medical school at the age of 19 at Harvard Medical School and was uniquely trained as a basic-science researcher and clinician. In his career, he produced major discoveries and publications including his textbook, our reading supplement. These days, Dr. K volunteers his time as a lecturer at Dartmouth and elsewhere, attends morbidity and mortality conferences weekly at both the VA and Dartmouth-Hitchcock Medical Center (DHMC), teaches cardiology and physiology small groups, and among many other things, decided to become a patient-partner for a wide-eyed, first-year medical student starting in the fall of 2013.
And so, with Dr. O’Donnell’s matchmaking skills, Team K and Meljen came to be — because of his dog.
I am now a third-year medical student at Geisel — still wide-eyed, I might add. I am the daughter of Cuban immigrants, a graduate from a public school in Union City, New Jersey and an honors graduate from The University of Scranton in three years. I was in a rush to finish college after some traumatic family losses and have an undying infatuation with the concept of learning enough about the human body to be of use to humans anywhere I can find myself.
I met Dr. K when I was 20, right after his first lecture of the year about the physiology of the heart. Later that week I drove over the border to a small town in Vermont, to see Dr. K and meet his pets. In our conversations that afternoon, I learned that his wife Mrs. K was a classicist who had worked for Dartmouth’s Women’s and Gender Studies and Master of Arts in Liberal Studies program, that they had four children and eight grandchildren, most of whom I would meet in the coming year. And most importantly, I learned about his beloved pets, Kleia the springer spaniel and Pyrrhus the long-haired ginger cat. You could tell they had hired a house-sitter before and had the training down to a science, like most other things in their lives. I then had the pleasure of staying in their home to watch the critters for a few days here and there while they were away.
What I learned from a subsequent visit was that my time with Dr. K was what some patients would call “borrowed time.” Both he and Mrs. K were intent on being completely open with me about his medical condition and I was told that I would be made privy to anything I was curious about so that I could get the most out of my experience. This alone was something I had never experienced before: the thought that this couple who barely knew me was willing to be so candid with a student really struck me. I felt incredibly invested in my relationship with Dr. K’s family from that moment because I sensed that I was truly welcome and trusted regardless of how green I was (and still am), to peer into the intimacy of another person’s life and experience his illness with the family.
Dr. K and his wife proceeded to tell me about the day that he fell ill 13 years before. He said that it was a morning in May after several months of fleeting pains in his back and ribs. He woke up feeling pain everywhere, especially in his back, was immensely weak and knew something was wrong. He said he called to get an appointment with his rheumatologist, who made sure to see him within the hour. Dr. K expected that it was just rheumatoid pain and that steroids would be the end of it. His doctor said to him “Arnie, you know when a patient has had an MI [myocardial infarction]… I can tell by looking at you that you have bone pain,” implying that there was an instinctual sense within each specialist for what the patient was experiencing, simply by observation. The imaging studies revealed that he had bones full of osteoblastic and osteoclastic lesions. Dr. K shared that during the conversation, “Both he [rheumatologist] and I knew it was cancer.” A three-day search for the cause of the malignancy followed.
From what we know now, this was an aggressive non-Hodgkin B-cell lymphoma. Twelve years after his diagnosis, Dr. K admitted to my class in our “Profession of Medicine” course that, “these have been among the best 12 years of my life. A diagnosis with terminal illness can have some favorable consequences,” but those “12 best years” included: bowel perforation, failure to obtain a stem cell transplant, crushed cauda equina, sacrum dislocation, chemotherapy, interstitial lung disease, radiation, enlarged lymph nodes, allergic reactions to medications and gait disturbances, among many other painful side effects and procedures. After the bowel perforation and three weeks in the hospital, Dr. K found himself in a nursing home where a sour nursing aide made it clear to him that, “no one ever leaves this place alive.” I listened to this story as it was recounted over his kitchen table to me privately, and then again as he shared the story with my class during the session on “End of Life Care.” Dr. K smiled the entire time he spoke, and though Mrs. K, who was there as a caregiver, smiled I could see the pain in her eyes. It was clear to me that though they had grappled through ailments of the body, the years of his suffering and near-death still caused her pain.
Dr. K himself said at one point, “the caregiver suffers the most. The patient is the orchestra conductor and sets the tone. If you can help the patient set the tone, it can help set the tone of the family … Only a very unusual patient can handle the burden of the family. If that patient becomes depressed, all are depressed.” He whistled a happy tune for his family and his medical team from what I could see.
Sometimes it is easy to listen to the story about someone’s illness once it is in the past and a story of triumph. Some people have never grappled with illness themselves and can’t possibly empathize for the patient. I heard his story, but as 20-year-old doctor-to-be at that time, I never pictured that I would become a part of it. Though he was in remission, the story of this patient is not in the past.
Ironically, Dr. K was not only a lecturer and my patient-partner, but the random process of small group selection had placed me in his cardiology small group as well. Jovial as ever, he started the small group and we listened to his stories as he answered our questions. As we showed up to small group every few days, I began to feel concerned about Dr. K. At first we saw him have a dry mouth and difficulty speaking, and then over time he would need to sit throughout the session and we the students would take over the white boards. He told us he was undergoing chemotherapy for his illness that was no longer in remission. To me, seeing a physician in an ill state was a conundrum.
We, the students, came to the realization that no one is immune from major disease, that doctors can easily become the patient, and that though medical school will help you to live a healthy life in many ways, it cannot prevent what is out of your control.
These small groups were during the very first semester of my medical education, and I found it challenging to keep tabs on everything. I really wanted to make the most of the patient-partner arrangement though, so I did my best to join in on the family-wide emails with his up-to-date lab work, faithfully tracking the LDH (lactate dehydrogenase, a blood marker for cancer cell activity) as I am sure his children were doing from their respective homes across the world. I asked to tag along with him to his visits at the oncology department when I could get out of class. I would spend some time with him at infusions, and continued to step in to watch Kleia and Pyrrhus whenever he and Mrs. K went away for trips or to visit family.
Little by little I could feel dynamics shifting. In class, I was his student, though he didn’t participate in grading me. At his home, I was his patient-partner, but to his family, I was a young addition to the clan who could spend time with the grandkids and play a mean game of fetch with the dog.
Where I felt the doctor-patient relationship evolving was when I followed him to the oncology department. I was there for him like his family, but I was also there as a medical student and provider-in-training. I felt like I was partly shadowing his treating physicians to see how they handled the situation. I watched the oncology fellow as he spoke to his patient (Dr. K), who had enough experience in medicine to run circles around us all. The fellow referred to him as “Dr. K,” like we all do. The whole gamut of titles got quite confusing in my mind. It was no longer a clear-cut doctor patient relationship for anyone in that room. Here we had the oncologist, the oncology fellow, the retired cardiologist/patient/professor, and the medical student/patient-partner/dog-sitter. The doctor-patient relationship that I observed between the oncology team and Dr. K was the epitome of shared decision-making. I didn’t believe for a second that they spoke in the same manner with all of their other patients, but I do believe that every one of the individuals they cared for was treated with equal respect and attention.
Where I really struggled with the role of the in-training physician helping the ill physician was during a weekend in May 2014, when I had planned on dog-sitting for the weekend. I received a message from Mrs. K the night before they were scheduled to depart. Her husband’s white cell counts had remained low and he wasn’t feeling well; he would be staying behind with me to help out around the house while she made the trip to NYC alone.
Their eldest granddaughter was graduating from The New School, and Mrs. K would attend to represent them both at the ceremony. Without any required classes that day, I decided to stay at the house in Vermont to hold down the fort while studying microbiology.
Mrs. K made it very clear that if he were to spike a fever over 101 degrees or continue to cough as heavily as he was, we were to immediately report to the oncology department and have him admitted. I kept that in mind, and as I studied that morning at the kitchen table, I kept listening for shortness of breath or coughing from across the house. At one point, I heard him admit that his fever had reached the hospital-necessitating temperature, but that he would be damned if he would let himself go to the hospital yet again that week and that he did not want to worry Mrs. K. As his student, I respected that he knew best and was afraid to mention that we should go, but at the same time I questioned his judgment. Though doctors should know better medically, they sometimes act as if the rules of medicine don’t apply in the context of their own illness or that of a loved one. It was obvious that Dr. K was sick of being sick and seeing the sterile walls of DHMC, but the overarching feeling I had was that he really didn’t want to ruin the weekend for his family and wife who would worry about him if he were to take a turn for the worse.
Things looked pretty stable for the first four hours of the day — not great, but consistent, and I decided it would be okay to leave for an hour to make it to an appointment. In my mind I had planned on returning and if his temperature hadn’t dropped, somehow muscling up to encourage him to let me take him to DHMC. When I got back to the house, I found an empty house with just pets and an update from Dr. K that he had gone to DHMC. When I arrived at DHMC, I found my professor, my Patient-Partner, curled up under heaps of warm blankets shaking violently in his febrile state. He had decompensated immensely in the hour that I had been away.
It was terrifying to be sort of ‘in the know’ about medicine and comprehend what was happening (the terror of a neutropenic fever, flu or pneumonia) but have zero power to help make it better. It felt odd to be the student and now the only caregiver available while the nurses shuttled in and out, and doctors came and went to assess whether he had an infection. I myself had a pesky lingering cough and recall being asked by the oncology fellow to wear a mask because I could possibly be putting Dr. K at risk. I tried speaking with Dr. K about what was going on, and he confused me by telling me that his wife would have a fit if she saw the shoes he had brought with him because she hated them though they were his favorite pair. Sick as he was, when I resorted to asking about medicine, leprosy and Charcot-Marie-Tooth disease, he perked up. The conversation picked up for a bit as he told me about an acquaintance of his with a Charcot joint until he fell in and out of sleep.
I peered over the doctor’s shoulders as they performed the pulmonary and cardiac exams. I sat there like any family member could, helpless. I felt useless, but wanted to jump in with my stethoscope to follow the doctors’ observations and ‘get it.’ I had to explain multiple times to the hospital team members that entered the room, “Hi, I’m Vivienne. I am Dr. K’s student. Well, actually his patient-partner. It’s a program at school … his family is away. I was dog-sitting and helping him for the weekend. No, it’s just me … the family is away. Can I be of any use?” The looks on their faces were priceless as if they were thinking, “What are you doing here?”
I realized that I felt like I was with a family member, but it felt out of context because anytime my own family had fallen ill, it had been far from my medical school experience in terms of distance and my medical understanding. I imagine this is how doctors feel when their own family members fall ill with something that is outside of their specialty, like an obstetrician whose spouse needs cardiothoracic surgery. As a doctor you may know what is happening to the body, but your own skill set may not lend help in that scenario. It was tough to hand over the care of Dr. K to others who know better, when all I wanted to do in that moment was help.
Finally, Dan, Dr. K’s son-in-law from Massachusetts arrived and greeted me and his father-in-law at the hospital. We were still in the infusion suite at that time and decisions about whether Dr. K would be admitted were still underway. Dan told me that he would stay and that I should walk Kleia and check on the house as it was late. I made it back to the house, spent the night and woke up to a houseful of family the next morning.
A good bunch of the clan had made their way in from all over the east coast to see their dad that night. We had coffee together in the morning and they divvied up the family duties. None of this was a burden to me. I learned more about medicine, being a doctor, a caregiver, a friend and patient in that day than in the multiple semesters of clinic visits I had already completed at that point.
Boundaries were blurred at points or totally rerouted, but never crossed. It became less important how to introduce myself to a stranger at the hospital and more important to cover any gaps in care or need at either the home or hospital. That’s where I think my best understanding of the doctor-patient relationship has come from: being of use in any way to help the one who is ill.
I mentioned earlier that Dr. K had said that he found some favorable outcomes in being diagnosed with a terminal illness. Some patients have no choice but to live through the natural history of their disease and acknowledge what they cannot do. For Dr. K, experiencing several life-threatening moments with this disease made him try to live every moment of remission by enjoying his health and traveling. For him and his family, this has meant checking things off the bucket list. It is awful to think you have an expiration date that is nearing, but it has been liberating for Mr. and Mrs. K to find an impetus to do things they had waited many years to do. From what I’ve heard, this has manifested in a lively social calendar and many trips around the world, including a trip to Antarctica documented by a great photo of them surrounded by hundreds of thousands of penguins. I myself have stepped into their calendar quite often for holiday dinners, double dates, and poetry readings. For a while, without morning classes, I would accompany Dr. K to morbidity and mortality conferences at the VA where often I only understood a few concepts, but watched him push the residents and young attendings to think critically.
There have been multiple other doctors’ visits, hospital stays and late night hospital visits where I have brought classmates along to see Dr. K with me. I spent the evening of my twenty-second birthday on the wards visiting him and learning about medical politics while he laid in bed. I no longer think of my relationship with him as anything specific in particular: no title. We are just people with different talents who help each other and communicate like family.
Dr. K has been able to thrive despite his illness because of his family and support system. He made remarks in the infusion suite one day about how he always had family cycling in and out of the hospital to keep him company, but he could see poor souls who would get wheeled in and out by staff, never having visitors throughout their treatment. He pointed out how great an impact he was sure that had on patient outcomes and happiness.
This story continues and a lot has been left unsaid, but what I hope that I have conveyed is that it’s often more than just the doctor-patient relationship that exists. It is a human being caring for another human. More often than not, doctors are so intertwined with the people we care for in our communities that to try to create such distinct roles is artificial and only functions in terms of medical billing and formalities. At the end of the day, there is one human who knows how and is obligated to help another who is struggling with illness, both because it is the right thing to do and because it is in our nature to want to do so. It’s funny to think that I’ve learned so much about medicine and the physician-patient relationship all because of a very special dog named Kleia.
Editor’s note: This piece is published with permission from Dr. K and his family
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Reposted from here with permission