Words of Relief

One of the most anxiety inducing things in the world, is waiting for medical news. Nothing brings about more worry, strife, or feelings of helplessness, then waiting for information, good or bad, about the health of your family. I have been blessed, in my opinion, to have been a patient myself, awaiting news of a biopsy and CT scan, and imagining every bad scenario, and every catastrophe. This personal experience affords me a better perspective on what my patients and their families, agonize over every day, when they are just waiting.

As a palliative medicine physician, part of what I do every day, is assist other physicians in delivering what is often bad news. All to often as well, I am asked to be the very person to help convey that news to a patient, as communication is part of our expertise in the medical field. Now here in Kenya, I am learning how to provide this type of news with my oncology colleagues. In the US we have the luxury of "medical interpreters," who are paid clinicians skilled in medical language to help us provide important information to families. At MTRH, my team including my RN and clinical officer are both my team members, and my translators in these difficult scenarios.

In palliative care, part of our skill set is in how we communicate important information with empathy, understanding, support, and most importantly, with a sense of non-abandonment of patients. One of my greatest challenges in Eldoret is having 'family meetings' with seriously ill patients and their families, and trying to communicate information in a language I speak superficially at best. (Though I am taking Kiswahili lesson's twice a week!)

Our team held a family meeting with nearly 20 people, squeezed into a tiny "psychological counseling" room, to discuss the results of the "investigations" (Kenyan medical jargon for lab tests and imaging) and plan of care for their father. The patriarch of a large farm in Western Kenya, his family had been awaiting news of his care and diagnosis for several weeks. In this public hospital it can take nearly 72hrs at time for lab results to return, up to several weeks for biopsy results, and depending on whether the radiology equipment is functioning, days to weeks for a CT scan and interpretation. So it is very common here for families to wait weeks before being given any news on a diagnosis, and thus prognostic information to help make decisions for treatment.

When I arrived at the bedside, the family was standing vigil nearby, having gotten word from the nurses that the Daktari was coming. It was obvious from the hallway that their father was actively dying. He was unresponsive, with a faint pulse, and his hands and feet were cool to the touch, all signs that he likely had minutes to hours of life left. After examining him, reviewing the chart which showed significantly abnormal liver function testing, an abdominal ultrasound showing a pancreatic/gall bladder mass and dilation of his bile ducts, and the oncologists concern for cholangiocarcinoma, I grew anxious to explain the bad news to come.

The family understood that he had a mass in his abdomen, and had been told that his jaundice was from the mass, yet outside of this information, it was obvious from the feeling in the room, that they understood he was very ill. I expressed my worry about his condition, and through my nurse as interpreter, explained that their father was dying of incurable cancer. I was speaking to his son who was acting as the interpreter to the family in their tribal language, and after the final word was spoken, I felt a collective sigh of relief.

What I did not know was that the family had been very worried that they had not been doing everything they could for their father. His son was relieved to hear from me that they had done everything possible by bringing him to MTRH, and that despite the fact that he was dying, they were glad that they understood what was happening. The unknown, the worry, and the anxiety was lifted away with even this terrible news. I too felt better, knowing that the burden of this information was actually helpful rather than devastating. At the end of the meeting, the patient's son concluded with a the prayer of thanks, asking that the "doctors have the strength to continue this difficult work." I continue to pray that I do.

Supportive Care

As an internist-psychiatrist, I have led many counseling sessions with patients, often individual therapy, which can have profound impacts on patients health and quality of life. In academic medicine there are often arguments about what type of therapy has the "best evidence" for efficacy for treating illnesses such as depression or anxiety. What I have often found however, is that the most potent form of therapy is that which is found accidentally. By that I mean, most patients come by their therapy, in whatever form it may take (Social Worker, Psychologist, Clergy, Bartender, etc.) by happenstance, and it is this happy accident that often proves to be the most beneficial.

Today our team hosted a "day care" session for the patients throughout Moi Teaching and Referral Hospital. I discovered that our team of nurses and clinical officer, rounded up nearly every ambulatory patient on our service and their families (nearly 40 people), and brought them to the chemotherapy tent next to the AMPATH building. We met in a circle and for the next two and a half hours, the patients and I were treated to a spiritual sermon, a teaching lesson on nutrition for wellness, and an information session led by our Clinical Officer on the dosing of morphine and safety of opiate storage at home. The meeting was capped off by singing, some dancing, and finally chai tea, mandazi (Kenyan donuts) and sausages. It was quite amazing to see Kenyan's from nearly 15 different tribal communities and villages, young and aged, singing, praying, and eating together. The therapeutic value was not in the sermon, the teaching topics, but in the community of patients and families struggling with living with cancer.

I was pleased to see the patients from different cultures speaking to each other over hot tea. Patients from various wards tending to each others wounds and care needs after the session. Some patient's families helping other patients with ambulation needs back to their wards and beds. I was told by our RN and Clinical Officer that it was helpful to the families to see the "Dakatari" joining in the session and just showing "love and support." I told our RN, that in fact, this experience was personally moving, warming, and in many ways therapeutic beyond words, to my own self care to share this experience with our patients and families.

Morphine

As I rounded on the palliative care service at the hospital today, we came across an empty bottle of morphine sitting alone on a shelf in the nurses station.

This lonely, empty bottle, speaks volumes regarding the access to appropriate analgesia in Kenya for patients with pain. As a palliative care physician, when you find an empty bottle of morphine in the nurses station at high noon, you have a pretty good idea how much pain relief the patients have received thus far that day, and it breaks your heart.

Meeting the Team

(Note: Any discussions of patients in this blog uses different demographics than the actual patient to protect privacy. Their stories however, are all too real.)

The first day on ward rounds, anywhere, in any hospital, is always a challenge. New admissions and new consults. Patients just plain "new to you" as the rounding physician.

I looked at this photo of Mt. Kenya from my flight into Kenya this morning to remind myself of the "mountain" I was to climb as my first day on rounds began at Moi Teaching and Referral Hospital in Eldoret, Kenya.

The challenge of rounding in a Kenyan public hospital, on the first day on rounds, on the oncology-palliative care service, is an major experience. At MTRH we consult only for the AMPATH Oncology Institute, so all of our patients have a primary diagnosis of cancer.

I met with our clinical officer and nurse at 8:30am in the basement office for the palliative care service, to exchange introductions, discuss the weeks schedule, and run the list of ongoing consults. The clinical officer noted at least 3 deaths over the weekend, and already had calls for 2 new consults today. We gathered our tools for the day - BP cuffs, hand held pulse oximeters, stethoscopes, and some candy for the pediatric patients - and headed to the wards.

The public wards at Moi Teaching and Referral Hospital are open wards, meaning, unlike my home institution with its luxurious single patient rooms with floor to ceiling windows, there are around 20-25 patients per wing, with little more than a sheet between beds. The patients lie two people to a bed, one head at each end of the bed. The only sense of modesty comes from the fact that men and women are segregated to separate wards based on gender. These aspects of the hospital are often striking, but it is not these differences that make the work emotionally challenging.

The burden that the medical staff carry every day here is the obvious suffering of the patients and their families. The public hospital is under immense constraints due to poor access to medications, supplies, adequate staffing, and advanced symptom directed therapies such as radiation treatments. So as we make rounds, these issues are always at the forefront. 

One of our first consults of the day is a prime example of the challenges faced with oncologic care in this constrained setting. The most common reasons we are consulted by the oncologists are pain management and assistance with communicating bad news to the patient/family. Our team met with "Patrice" a 24 year old woman sitting bolt upright in bed, with 8 Liters of oxygen flowing via facemask, who was breathing so fast she could barely talk.

Patrice was suffering from an large tumor of her left humerus, medically referred to as an osteogenic sarcoma, which had spread quickly to her lungs and abdomen. She was in obvious pain with each breath. And each breath appeared to require an enormous amount of effort to meet her needs for oxygen. Their was no family at her bedside, as it was explained to me via translation from our RN that she was orphaned. She did not know that she was dying of cancer, as she had not been told her diagnosis. (The withholding of cancer diagnosis is commonplace in Kenya, and a stark challenge for a U.S. trained physician).

We spent the first several moments addressing her severe pain and breathlessness with aggressive titration of pain medications for symptom control. This required a brief teaching session on my part to the bedside RN's about their concern for the doses of morphine for her breathlessness - "Daktari won't this suppress her respiratory efforts?" "Daktari we do not want to make her addicted!" Often quoted concerns by the RN's, based on poor education about the use of opiate analgesics in the control of cancer pain and severe dyspnea. Opiates have time and again been shown to improve cancer patients quality of life, and prior trials have shown no hastening of death related to these therapies. Yet, oncologists, pain specialists, and palliative care physicians the world over are met with these types of questions and trepidation about the use of opiates in pain and symptom management for seriously ill patients.

The patients at MTRH have limited access to pain medications, specifically opiates. In this hospital in Kenya, we use oral liquid morphine at 10mg/mL concentration as our only tool for treating severe cancer pain. We have no IV opiates, no Oxycontin, no fentanyl, no dilaudid, none of these tools which North American patients have the luxury of requesting by brand name back home. Instead, the palliative care team here struggles to get 1mL of this medication scheduled more frequently than every 8 hours due to nursing constraints and access to morphine on the wards (they frequently run out on the night shift and the RN's have to wait to retrieve more from the oncology pharmacy in the morning).

In the U.S. we measure oncologic prognosis in increments often of weeks, months, and years. Here we measure prognosis often in minutes to hours, often due to a significant delay in access to care. For Patrice, I was worried that she had hours at best based on her severe symptom burden. It is this aspect of caring for cancer patients in Kenya that is so challenging.

We are called to the table very late, often to provide assistance at the very waning moments of these patients lives, and it is this very reason that I am here. To move palliative care services as far upstream as possible at MTRH, and if possible, expand this type of service to patients beyond oncology, because all to often, the patient dying in the next bed over, does not have access to the palliative care team, if they are dying of something other than cancer.

Things Change

Some people do not tolerate change well, they appreciate routine, need a schedule, and at times get anxious if life throws them a curve ball.

It has been nearly two-and-a-half years since I first visited Eldoret, Kenya as a senior resident in internal medicine & psychiatry at Duke University. I had never traveled to Africa, let alone done any global health work in a developing country. During my three months in Eldoret, I did some of the most meaningful work of my entire residency training with AMPATH at Moi Teaching and Referral Hospital (MTRH). I treated patients on the brink of death everyday, saw forms of suffering I never fathomed were humanly imaginable, and experienced love and faith in a new light.

When I arrived this morning in Eldoret it was reassuring to see the same basic welcome sign that had greeted me at the small airport. As nice of a "welcome" as it was, it was palatable as I walked off the plane that things around me had changed. On the drive in, new buildings, new hotels, new hospitals, and a bustling in downtown that seemed more frenetic and expansive.

Of the changes however, once seemed to strike me the most. It might seem mundane to those reading this, but for me it was huge.

Working with AMPATH and Duke in Eldoret means that you live in a compound of houses lovingly referred to en-mass as"IU House." Every day the medical students, residents, pharmacists, and attending's walk from IU House to MTRH to round in the hospital, treat patients, perform surgeries, and delivery babies. And every day, in general, the path, the walk, the steps you took to the hospital were along a maroon clay path. A dirt trail along a pot-hole strewn road that when it rained became a muddy, slip-slide, of a walk. I fondly remember trying to navigate the best "off path" steps to avoid some of the deeper sink holes of mud, only to arrive at the hospital with a layer of clay below my boots that required several minutes of scraping to remove. The mud and clay of the trail would leave your boots stained, your pants and slacks colored, and was a badge in some ways of the trek to help patients on a daily basis.

Thus, when I left IU House today for my first walk into Eldoret, I was shocked to see a paved sidewalk where the dirt path used to lie. I just stood a moment and marveled at its simplicity.

I knew coming back to Kenya would be different the second time around. I think mostly because I am different. I became a father. I completed residency and worked as faculty for a year and then I began the most emotionally challenging year to date, as a palliative medicine fellow.

I anticipate many more changes, and many more differences on this new journey. And, I appreciate this new change, because in the end, a paved road during the rainy season is a sight to behold.

Fitting it seems...

I am that guy that sits down on a long flight, and tries to make some small talk.

I get anxious when sitting next to a person for several hours, and I don't even know their name. I like to think that despite our smart phones and tablets, that when we travel, that telling our story is part of why we paid for the ticket.

On my flight from Washington D.C. to Ethiopia, as I return to Kenya to work in Palliative Care, I met "Eve" on my flight. I figured since we were going to spend the next 12 hours sitting next to each other in coach we might as well chat. I always start these conversations with the same question - "Are you traveling home, or traveling away." It breaks the ice, because, well, we are all traveling for at least one of these reasons.

Eve was amicable to chat. She smiled and with a sigh, explained that she was headed home to Ethiopia. Eve is American, and she lives in Virginia. She works for an IT company. Eve is also a first generation Ethiopian American. And as she explained, her father died suddenly a year ago. She was going back home for the one year anniversary of his death.

She said this in the way that someone speaks when you know they bare a heavy heart. She told me about her brother, and that his work would not allow him the time off to travel for this event, and that she understood, but was disappointed he was not coming as well. She worried whether she could support her mother back home from so far away, and felt she needed to be there for her family on this solemn anniversary. 

We spoke only at length during the first moments of the flight after my opening question, yet I marveled at her story. I felt as though she needed to share this much about her story, and that was enough. I avoided delving into details like I have been trained to do, but rather, just sat and listened.

Her story was tinged with some irony for me as a physician, who was leaving for Kenya, to support patients and families like her, faced with these most difficult times surrounding illness and death. So it seemed fitting that I was able to hear Eve's story on my return to Africa. On my return as a palliative medicine fellow.

I live in a world as a physician where people's names, lives, and stories matter. As palliative care physician stories matter the most to us. The illness narrative is why most people come to see a physician. They have a story to tell. A chronological series of unfortunate events, or an itinerary of symptoms, which our patients hope we can either turn into a defined problem or in most cases be told that "everything is fine." This is why I chat it up on flights, it allows me to ask questions, to hear a story, and not always have to come up with an answer or a solution. I just get to listen. And in most cases, on both airplanes and hospitals, that all anyone ever really needs.

Jason

Back Again...

Arriving in Africa is hard to describe in words.

An assault on the senses is a more fitting way of describing landing in Addis and Nairobi. The sights, sounds, smells, colors, and people tell you that home is a long way away. After arriving in Kenya in 2011 for my first trip to Eldoret, this was by far the thing that made the transition from the US the most jarring.

Now, returning to Africa in 2014, traveling on Ethiopian Airlines, landing in Addis, transferring to Nairobi, I feel the same, and yet, more at home. The assault on the senses is the same, but now a more familiar controlled chaos. I understand some of the language, can converse at least in pleasantries, and can navigate my way around a Kenyan queue.

Yet, this time, I return, back again, with a new mission, and a new hope.

I return to Kenya in the hopes of expanding access to Palliative Care to Kenyan's afflicted with illnesses only spoken about in whispers. AIDS, Cancer, and Heart Failure. I return a different doctor, and I return to try and be worthy to serve the suffering.

In the coming days, weeks and months, I hope to share my journey as a Palliative Medicine physician, through the generous work done by Duke (dukeglobalhealth.org) and AMPATH (http://www.ampathkenya.org/) at Moi Teaching and Referral Hospital in Eldoret, Kenya. I hope this narrative journey helps to bring more awareness to the needs of those in Sub-Saharan Africa who suffer from serious and life limiting illnesses.

Jason A. Webb, M.D.
Palliative Medicine Fellow
Duke University Medical Center