Goodbye

I am extremely sad to report that due to increasing political turmoil and tensions in Kenya, including recent violence in the Eastern Kenya, we have been told by our AMPATH leadership that all short term visitors need to leave Eldoret out of recent safety concerns. I am currently safe and sound, and have made travel arrangements and will be leaving tomorrow morning.



I am terribly disappointed that my work here is unfinished, and that I have to leave this important work 6 weeks ahead of schedule. Our Kenyan Palliative Care team was in tears today over this news (including yours truly), and needless to say it is a bittersweet and early end. Even in these 2 short weeks I continue to love coming to Kenya and consider it a second home, especially based on all the love and support I get from my friends and colleague here. Thanks to you all who have followed along on my blog while I have been in country. I am hoping for safe travel back to my family this weekend. Asante Sana!

In honor of some of the amazing patients I have cared for in Eldoret at MTRH, I share their images (with their permission) to help spread the message about the ongoing desperate need for better access to palliative care in Kenya and Sub-Saharan Africa. It is due to this sort of political turmoil that we need to continue this mission to provide care, conduct research, and educate our colleagues the world over.

Kwa Heri!

Pole Sana

 (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.)

As a North American palliative care fellow training through the ACGME, we are required to spend at a minimum, two weeks of time rotating on pediatric palliative care. To be honest, I think most palliative care trainees, especially those of us who train in adult medicine, hold our collective breathes during this rotation. We tended to avoid training in pediatrics due to our discomfort working with seriously ill children. I enjoyed my pediatric palliative care experience at Duke, mainly because not a single patient died while I was on service, and I spent the majority of my time working as a psycho-oncologist helping to use my med-psych skills for symptom management.

However, in the short few weeks I have been in Kenya, my pediatric experience has increased exponentially. On the "adult" public wards, adulthood starts anywhere from the age of 12-14. So it is not uncommon for the palliative care team to be consulted for a 14 year old with Stage IV rhabdomyosarcoma or a 16 year old with acute leukemia. This aspect of the work here, has been by far the most challenging to me, especially because I am a new father.

The psychiatrist inside of me understands the "positive countertransference" I develop each time I see a young Kenyan child, and how this causes me to over identify and be less objective. At the same time, I know that the inner strife and sympathy, is an appropriate human response, and so I do my best to keep these "positive feelings" in balance, especially when I am faced with a critically ill child.

Today was by far the most challenging day I have had to face yet here in Kenya.

We had been caring for "Denice," a radiant 18 year old Keyan girl, for the past 4 days after she was admitted with nose bleeds, fatigue, weakness, and recent infections with Typhoid. Denise was the middle, and only, daughter in her family. She was ebulent, talkative, and in many ways, appeared much younger than her age revealed. She reminded me a popular high school senior, who was just getting ready to launch into the world.

Her workup had revealed very low platelet counts, and one of the highest white blood cell counts I had ever seen on a CBC (191k). The oncology team had a working diagnosis of acute leukemia. In this setting, acute leukemia is essentially a death sentence. The supportive care needed (IV antibiotics, bone marrow stimulating medications, sterile conditions, etc.) are non-existent to keep a patient stable with the type of toxic chemotherapy needed for a potential cure or palliative treatments. She was suffering from an oncologic emergency, at high risk for death, and the modern treatments such as leukophoresis are an interesting discussion on rounds, but not a clinical reality.

Denice and her family are some of the few patients on the public wards who speak fluent English. Thus when the palliative care team was consulted to assist the oncology team with breaking bad news to her family, this was an experience which hit closer to home because of a lack of the language barrier. Her mother and father were accompanied by their pastor for a the meeting late last week where we provided a "warning shot" that she likely had a blood cancer, and that her prognosis was likely poor. The family opted for treatment if the oncology team could offer this to her. Since we did not know the exact type of leukemia yet (we were waiting for further "investigations" from pathology) we could not initiate treatment until this week. We planned to re-convene today to discuss her treatment options after we learned she had n aggressive form of Acute Myeloid Leukemia.

So this morning when I stepped onto the wards a little before 9am to have a "meeting before the meeting" with the oncology team I was not prepared for what came next. I rounded the corner on the Nyaya wards, and in her bed, where usually two patients lie, was a single person, lying still, beneath a blanket. I froze for a moment, in shear disbelief. Praying and hoping that it was not Denice lying dead there under the covers. When I stepped to the bedside, the other 40 or so Kenyan patients and family members in the surrounding beds were somberly watching me. I pulled the bed sheet back, and lying motionless and breathless, dry blood on her nose, mouth and bedsheets, was Denice. Tears immediately welled up in my eyes, and my thoughts drew blank with shock. Just 24 hours earlier, this young girl, with a radiant smile had been laughing and carrying on, and now she was dead.

My sadness then rapidly turned to anxiety, as there was no family at the bedside, and I knew that her whole family was traveling 2 hours this morning for our meeting. The bad news meeting morphed into a terrible news meeting. I spoke quickly with the clinical officer who showed me her chart and explained that she became acutely short of breath, began bleeding, and then suddenly went into cardiac arrest. She decompensated too quickly to be resuscitated and ICU care was not available due to no ICU capacity in the hospital. I surmised that she developed acute hyperviscosity syndrome/leukostasis, likely pulmonary edema, and then sudden cardiac death.

 The oncology team arrived, and their shocked was just as palpable. In Swahili, we say "pole sana" or "very sorry" when tragedy strikes, and many of these were mumbled amongst the group. We discussed that I would break the news to the family once they arrived, and attempt to explain what transpired this morning. Before her parents could arrive, she was taken to the mortuary located adjacent to the hospital. So when her mother rushed onto the unit and saw she was not in her bed, and her father blankly asked, "where is my Denice," I realized I was wholly unprepared for this situation.

I have broken the news of a patients death to family members too many times to count. But as an adult physician, this often is a discussion after a protracted illness, prolonged hospital stays, and in general allows families to have some time to prepare for this event. Instead, I found myself in the unfamiliar waters of breaking the news of a tragic death, a sudden death, not just of a patient, but of a child. I was terrified of their reaction, and concerned that I would make a cultural blunder as well.

Her family was devastated, her mother in shock, and more than anything they just wanted to see their daughter. My nurse and I accompanied Denice's parents and brother to the mortuary, to allow them to see her, and try and make some sense of things. Our team spent almost 2 hours with the family, processing their questions, sharing tears, and trying to offer a modicum of support. Denice's father turned to me at one point and said, "I still do not believe this, it is a dream, one I hope to wake up from soon." He thanked me, with a firm handshake and a deep look in my eyes, for accompanying them to the mortuary, and for being honest with them about what had transpired.

I know, that for Denice's family, I am now a part of a deep seeded memory, of likely the worst day of their lives. I just hope that by just being present with them today, sharing their sadness and grief, that I upheld what I feel is the greatest role in healing that we can play as physicians, which is never, ever, abandoning a patient or family, at their greatest time of need.

Waiting

I have heard all to often from my friends during social events about some of their pet peeves when interfacing with health care in the US. One of the most common complaints I hear is about "waiting" to see a physician for a primary care visit, or how "long they waited" in an urgent care waiting room with their child. As a parent and a consumer of medical care in the US, I too have had my fair share of playing the "waiting game." I often have to keep my mouth shut during these rants on the part of friends, family, and even colleagues, because until I rotated in Kenya in 2011, I had no concept of what some patients will endure, in waiting to see a physician.

I spent today in the Oncology and Palliative Care clinics in the basement of AMPATH building seeing patients referred for pain and symptom management. MTRH serves as the tertiary referral site for most of Western Kenya spanning from Kisumu near Lake Victoria, then East to Nakuru, and North towards Lake Turkana. To millions of Kenyan's, MTRH is the last resort for medical care. My patients often travel two to three hours by "matatu," a small cramped bus, on back roads and poorly managed highways to see me. There is nothing more humbling as a physician, to hear that a patient has traveled so far to see you, let alone to have a patient wait in "queue" for three to four more hours to see the "daktari" for a prescription for pain medications or anti-emetics.

So today when "Janice" painfully walked into the clinic, I knew that she had been through quite a journey to see me today. She had left home at 2am in order to catch a matatu to Eldoret, a 2.5 hour ride later, she then waited over three hours to see the oncologist, and then over another hour to see the palliative care team. A waiting time that I know neither I, nor many American patients, could tolerate.

Janice, a vibrant 38 year old Kalenjin women, is married with four children. She had been enjoying being a homemaker living near Kakamega with her family when she began having abnormal vaginal bleeding and pain in her pelvis. She delayed seeking health care due to tight finances at home, and thus her diagnosis of cervical cancer was made very late. She had been diagnosed at a local hospital near her home after a biopsy, and then referred to MTRH for consideration for surgery. Unfortunately, her cancer had advanced past any benefit from surgery, and so she arrived today for consultation for chemotherapy and radiation, as well as some hope for pain and symptom control.

Compared to the developed world, women in Kenya are at the highest risk of dying from invasive cervical cancer than any other malignancy. Invasive cervical cancer (ICC) is the most common cause of cancer deaths in Africa accounting for 10.4%, which represents one in five of all cancer deaths in African women.  (Note: Please see this 2013 article from PLOS One on the issues surrounding cervical cancer screening, treatment and care in Kenya http://bit.ly/1lAoVqH)

Once Janice had finally made it to our oncology clinic, her cancer had spread into her pelvis, causing pain with most activities at home, and was severely limiting her quality of life. Our team, in conjunction with oncology, developed a plan for palliative chemotherapy, a referral for radiation treatments (which are unfortunately not available at MTRH, and so Janice will have to travel to Uganda for this therapy), and I initiated an aggressive symptom control plan for her pain.

Despite her long travel, and even longer day, she smiled and thanked me at the end of her appointment for "giving me hope." She expressed that her biggest hope was to be able to walk around her home, with little pain, so she can continue to care for her children. It is my hope, that with her palliative therapies, and the psycho-social support of our team, that we can help her achieve this goal for some time to come. I just hope that I get see her, and her vibrant smile, again next month.

Nausea

(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.)

One of my favorite symptom cluster's to manage is nausea and vomiting in cancer patients. My co-fellows at Duke have heard of my affinity for the role of psychopharmacologic agents, such olanzapine, in the management of chemotherapy-induced nausea and vomiting, to many times to count. Thus, when our team at Moi Teaching and Referral Hospital (MTRH) were consulted for a patient with metastatic melanoma, with symptoms of "refractory nausea and vomiting," I was hopeful to be able help this patient significantly with her symptoms.

Our patient, "Emily," a 42 year old Kenyan woman, had been diagnosed with malignant melanoma after she developed a dark lesion on her left hand several months prior to her presentation. She had a large (~2cm) mass on her left middle digit which was excised and found to have invasive melanoma. As is often the case in Kenya, she was lost to follow-up after the excision, and never had the mass fully treated with further surgical or oncologic management. So when Emily was admitted to MTRH with her symptoms it was concerning that her malignancy had progressed rapidly.

Emily presented to our hospital via "casualty," better known as the emergency department, for symptoms of headache, confusion, and severe refractory nausea and vomiting. Her symptoms unfortunately progressed to involve a right arm and leg weakness which eventually progressed to a total right hemiparesis. She initially was able to provide a medical history in the casualty department, however by the time of my assessment on her 3rd hospital day, she was completely aphasic (unable to speak).

The medical team had suspected a metastasis to her brain due to her underlying malignancy. Melanoma is a type of cancer which classically loves to metastasize to the brain, and patients often present with initial symptoms related to brain metastasis. Due to delays in the availability of a CT scan on admission, this had not been performed until the morning of my consultation.

Emily was uncontrollably nauseated, and was unable to eat or drink any food for the preceding 2 days. On exam she was awake, but minimally responsive to verbal or tactile stimuli and showed spastic tone on her right side diffusely. She was notably tachycardic and her breathing was rapid and shallow. She appeared quite ill. I expressed to my team a great worry that she had suffered an acute hemorrhage of a malignant metastasis due to her physical exam findings, and that her respiratory pattern was likely central in origin.

The general medicine team had been treating her nausea with a combination of Plasil (metoclopromide), a dopamine blocking agent used for nausea, and dexamethasone, a potent steroid, to reduce inflammation. Despite these treatments since admission, she continued to have severe symptoms of nausea and vomiting. I discussed with the oncology and general medicine team, a plan for rapid titration of her steroids, a switch from Plasil to haloperidol every 6 hours orally (only formulation we have available), and adding ondansetron IV every 8 hours. In the mean time, I discussed with some of my pharmacy colleagues the availability of olanzapine at MTRH as a back up tool. (I do love the stuff!)

Deep down however, I knew that her status was critical, and expressed my worry that she might not survive through the night. My team wondered aloud "how I could come to such a prognosis without the findings from her CT scan." I replied that, "all I really needed to do was examine her to know the extent of her neurologic injury." The CT scan will only "confirm" what I already saw with my eyes, and felt with my hands.

When I returned later in the afternoon, her CT scan had been performed and my clinical officer asked me to interpret the films at the bedside. As I placed the hard copy of the images on the light box, a small crowd of Kenyan students gathered, and a collective cringe was palpable amongst the group. The scan revealed a massive area of tumor burden in the left frontal lobe, accompanied by evidence of acute hemorrhage, a great deal of surrounding vasogenic edema, and a significant amount of mid-line shift. The images essentially confirmed my exam, and my worries from morning rounds, that Emily was dying of impending cerebral herniation.

Emily took her final breath less than 48 hours after my consultation. Despite the teams best efforts, the biology of her illness was in the drivers seat, and the car was out of control by the time she presented to casualty. Her story is one that happens here at MTRH all to often.

In honor of Emily, I spent the weekend working on a presentation on the management of nausea and vomiting in oncology patients. It is my hope that the Kenyan medical students and residents, and I, can continue to learn from her unfortunate illness and its consequences.

Morning Run

Part of my self care routine while in Eldoret will be some early morning jogging around the city. I was awoken this morning early by the nieghboring rooster and dogs, helping to motivate me to get out of bed and get running.

Eldoret is at an elevation of approximately 2200 meters above sea level, which is higher in elevation then Denver, Colorado (1600m). So a morning jog after the first week at this elevation required several breaks to catch my breath. This region of Kenya known as the Western highlands is home to many of the Kalenjin runners who dominate long distance running the world over.

On my way home from my jog, I passed an artful local Hindu Temple here in Eldoret and was struck by the beauty of the building in the morning light. A small gift for getting out of bed early to take care of my body and mind.

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.