What’s in a Name?
December, 2024
People have been asking us how our work is going in Africa, not only because we haven’t sent out an update in months, but also because they know that it has been a complicated year for our family due to our son’s health issues. We are pleased to report that because of the systems we have put in place over the years, and a lot of Zooming, Palliative Care for Uganda (PCFU) has continued to make great strides despite our only visiting Africa twice in the first half of 2024. It was always our goal to make our work overseas keep running without the need of our in-person presence. This year was the perfect stress test to try that out. The program passed with flying colors!
In recent years we have become aware that the name of our NGO, “Palliative Care for Uganda”, had become outdated. The name needed to catch up to how our work has evolved over the past decade, having expanded both geographically and philosophically. In July, we launched “Palliative Care and Education for Rural Africa” (www.PCERA.org).
Let’s look at the new name one word at a time.
Palliative Care and Education in Rural Africa
The heart and soul of our organization is to relieve suffering. That’s what has driven us since 2013 when Randi and our daughter Kaile (a med student at the time) were invited to work at a small rural hospital in Uganda whose director, Sr. Jane Nakafeero, had watched her parents suffer at the end of their lives, the family helpless. Sr. Jane heard of the field of palliative care and did not want anyone to endure what her parents and her family had gone through, so she set out to start a palliative care program in a rural district, against all odds. She felt it was an essential service for a hospital to relieve suffering in the many patients they saw who couldn’t afford or access curative treatments for serious illnesses. Most of the patients are subsistence farmers, living hand to mouth for food, clothing, shelter and to pay for their children’s schooling. Randi and Kaile fell in love with the hard-working people there and seeing all the suffering agreed with the great need to palliate the patients and families. PCFU was begun.
Palliative Care and Education in Rural Africa
A decade later, we continue to focus on the alleviation of suffering in as many patients as we can reach using inexpensive, replicable palliative care techniques throughout rural areas in lower- and middle-income countries. By giving talks to local community volunteers about what palliative care can do, our team is now seeing over a hundred patients every month in an ever-widening geographical area. To keep up with demand, we are now financing the schooling of another nurse to get specialized training in palliative care to run another palliative care team, so we can expand our outreach even more. Medications, supplies, transportation, hospitalizations are all supported by PCERA. There is never a charge for our palliative care services, including medications, to the patients for the duration of their care.
Palliative Care and Education in Rural Africa
We realize the most efficient way to scale up our impact is to train local healthcare workers in palliative care. Doctors, nurses, volunteer village health teams (VHTs) all benefit from education in how to alleviate suffering in patients with serious illness. To accomplish this, PCERA has a multipronged approach.
In person educational seminars to local healthcare workers by US based doctors visiting Africa
· This past year we sponsored three clinical immersion trips to Uganda for doctors-in-training and palliative care medical faculty from US medical schools. Visiting rural villages to see home-bound seriously ill (mostly cancer) patients, bidirectional learning occurred between the visiting doctors and local African healthcare workers. This past year, US physicians from the University of Vermont, Harvard/Mass General, Cornell Medical College, as well as students from Germany, Denmark, and Sweden have participated in our program during their visits in Uganda. While in Uganda, the US physicians and students conducted formal and impromptu educational sessions on topics in palliative medicine for Ugandan healthcare workers, including nurses, doctors, and hospital administrators. In addition, our team in Uganda continues to hold training sessions for local Village Health Teams (VHTs) volunteers in each village, the front line of medical care, to increase awareness of and access to palliative care.
Our online educational programs allowed us to reach 47 countries this year!
● We organized a series of educational webinars presented by two of Randi’s Cornell palliative care social work colleagues, in collaboration with the African Palliative Care Association (APCA). Each webinar was attended by as many as 160 participants representing multiple countries in Africa and around the globe. At last count, 23 countries in Asia, Europe, the Middle East, and North America, in addition to 24 countries in Africa.
Our palliative care video curricula on communication skills are making a difference.
● We continue to develop and produce our palliative care video-based education modules using vignettes filmed during actual palliative care team visits with patients in the villages. The curriculum focuses on palliative care communication skills to be used in the teaching of medical and nursing schools in Africa. These modules have been presented at international conferences and has received praise from delegates from around the world.
We cover all of the costs of this program, including filming, editing, and curriculum development and the materials are given at no charge.
Our program is internationally recognized
● Prossy Nafula, the palliative care nurse with whom we have worked with from the beginning, presented on our palliative care program at the 2024 World Congress of the International Hepato-Biliary Association in Cape Town, South Africa this year.
● Next year we have been invited to present our work in rural Uganda at the 2025 International Palliative Conference in Botswana.
● We have been approached by countries outside of the African continent about our program and are exploring opportunities to expand to those countr
Research to prove our techniques are effective is essential
To get our programs distributed in more countries, governments want proof that our programs work. Currently, we have 3 research projects ongoing.
· Diagnosing and Treating Cancer earlier using video clips of actual patients in rural Africa
Inspired by our team seeing many patients with advanced cancer, and by our recognition of pervasive low health literacy in the area, our patient education video project “When You Have Cancer” aims to provide the trusted local community health workers with tools to help educate community members about cancer, from diagnosis to treatment. Using local speakers, in local settings, and translated into local languages, these 6-minute videos, which can be shown on smartphones, teach about the types of cancer and available treatment modalities to encourage earlier evaluation and treatment of cancer. To date we have produced this video in English, Luganda, Swahili, Luo, and French, as well as sign language with plans to translate in other languages. These languages are the official languages of 31 countries on the African continent and several more around the world. We have partnered with the Uganda Cancer Institute to study the efficacy of these videos on better cancer care.
PCERA covers all of the cost of the development and distribution of these videos and there is no charge to use.
· Destigmatizing Breast Cancer Using a Video Education Tool
Mortality rates from breast cancer in Sub Saharan Africa are among the highest in the world in part because of delayed evaluation and treatment related to poor awareness and understanding about breast cancer among health care workers and the general population as well as widespread misconceptions and local myths about the disease. Especially in the rural setting, where there is very limited access to technology and many people are unable to read printed educational materials, we are developing a patient education video for the local community health workers to help educate about breast cancer and encourage earlier evaluation and treatment. Traveling through rural areas, working with an Africa based crew, we have filmed breast cancer patients in their homes in rural Uganda, interviewing several women on their own experiences to document the struggles they have gone through to deal with this illness.
· Using solar powered lights to improve patient’s comfort.
This fall we began a collaboration with ‘Let There be Light International’ and ‘Solar Health Uganda’ to study the impact of distributing small, inexpensive solar powered lights to the homes of our palliative care patients suffering in rural areas without electricity. The study’s design is to evaluate the impact of having light available in the evening and the night and whether there will be a benefit on patient’s symptoms, their medication usage, and the emotional and physical well-being of them and their caregivers. These lights are provided free of charge to villagers that meet palliative care criteria. We already are seeing a significant impact and will continue this project.
Palliative Care and Education in Rural Africa:
In choosing a new name, we struggled most with words describing our geographical reach. Titling our organization with words such as Global or International sounded too grandiose, although that is clearly where we are headed. Also, many of the organizations with which we partner are city based and they tell us how valuable our work is to urban settings and should not be limited to just rural areas.
But in the end, Randi and I believe strongly that the driving forces for all we do is rooted in the people of rural Africa, so it’s a vital part of our new name.
So, we are now:
Palliative Care and Education for Rural Africa (www.PCERA.org)
Thank you to all our donors.
The work of our organization is solely dependent on donations.
Should you wish to donate to our 501c3 charity, donations must be made to our financial arm, which is still Palliative Care for Uganda, inc. to keep the IRS happy until we can register the new name. Donations can be made through the website www.PCERA.org, through PayPal, or by check to:
Palliative Care for Uganda, Inc.
128 East Avenue, Suite 3
Norwalk, CT 06851
Wishing you Peace and Health in the coming year,
Randi and Howard
12/06/2023
Ten Years and Counting
“How far?” I asked Prossy, the nurse who runs the Palliative Care Outreach Team at Naggalama Hospital as we loaded into the van one morning a couple of weeks ago.
“It is a bit far,” Prossy replied. We knew from working with the palliative care (PC) team over the past 10 years in rural Uganda that for Prossy to say “a bit far” meant at least an hour of being tossed around the back of the van as we drove over the deeply rutted dirt roads made particularly slow going during the current unexpected rainy season. Randi, Ben and Nav (two doctors from New York Presbyterian Hospital Cornell Palliative Care Division who we brought along on this Uganda trip) and I set off to see a woman about whom we knew no specifics, but had heard was suffering from an unknown illness that Prossy had been told about from someone who knew someone who heard from someone in a neighboring district; that’s how the referral network works out there.
An hour and a half later, shaken and buffeted by the van’s lack of shock absorbers or cushioned seats, we arrived at a village, not more than a kilometer from the shores of the Ugandan Nile River, yes, the same one that’s in Egypt, to find a woman in distress with a severely swollen belly filled with gallons of fluid and a massively enlarged spleen, a very unusual finding. The four US doctors stood baffled after examining her as to what was the underlying cause of her condition, not having the tools we were used to having in a US medical center (blood tests, scans, etc.) to make a definitive diagnosis. So we set to task at hand: Relieve her suffering.
As soon as she was more comfortable, a broad smile on her face, a villager came by to tell us of another person a little further down the road with similar complaints. Off we went to meet him under a mango tree. No sooner had we finished his examination when a young woman with a small baby strapped to her back came running across the fields, breathless, dragging her 6-year-old son who was not well, begging our team to see him. Word travels fast when we arrive in a village.
We originally started Palliative Care for Uganda, Inc (PCFU) to build self-sustainable programs to reduce suffering in people with chronic or life-limiting illnesses. While we continue to honor our original mission to support a team of palliative care nurses and nursing assistants to travel to rural villages in Uganda to provide palliative care and social support to those in need, we have more recently directed our efforts towards palliative care education for local practitioners, community health workers, and patients in effort to raise awareness of palliative care and improve access to alleviation of suffering, whether alongside treatment of the underlying illness or too often, when no treatment of the causative disease is possible.
This past year our organization (PCFU) has gone through what we can only describe as a gratifying explosion of work. As a result of all that we have learned over ten years about the overwhelming palliative care needs of people in rural Uganda, and through the partnerships we have nurtured over the years, we have been able to broaden our reach not only through Uganda, but also to other countries across the continent of Africa.
Here are some of the active projects going on this past year:
Further development and implementation of a PCFU developed multi-modular video-based curriculum which we have created to educate healthcare workers about communication in palliative care. Through a partnership with The Institute of Hospice and Palliative Care in Africa it is being used at the university level to train nurses and doctors in principles of palliative care communication focusing on rural settings, something that, to our knowledge, has not been addressed before. Additional modules are in the planning stages.
A series of webinars on grief and bereavement has been developed by Randi and her palliative care social work colleagues on understanding and managing grief and bereavement. Collaborating with the African Palliative Care Association, each of these webinars have been attended by as many as 150 on-line participants from 16 countries, bringing new ideas and approaches to areas with limited resources where such information is not readily available. More sessions are planned for the coming year.
Statistics show that close to 90% of palliative care needs are not met in many lower- and middle-income countries (LMICs) in Africa. PCFU conducted in-person educational programs at rural hospitals and with village health workers to raise awareness of what palliative care is, what it can do for their communities, and how it can be accessed. Presenting to over 200 people this past year, the Palliative Care Outreach Team has seen a 300% increase in referrals. Consequently, PCFU is now paying to educate and support additional nurses in specialty palliative care training to cover the increased needs in the villages.
Last year we visited a young man with advanced cancer who was suffering in pain. We treated his pain, but when we explored how much he and his father understood about his cancer and its treatment, they presented a booklet they received from the Uganda Cancer Institute at their first visit called, “Coping with Cancer, A Booklet for Cancer Patients.” When the boy was diagnosed, no explanation of his disease was given except handing the father the book. “But we can’t read '', he explained to us. Because of this visit, and many similar encounters by our team in the rural villages, this year PCFU engaged with US- and African-based filmmakers to begin developing a series of short videos in local languages explaining cancer, its treatment, the side effects of treatments and how these symptoms can be managed. Last month we presented the first completed video to the heads of the Uganda Cancer Institute and the African Palliative Care Association. They loved it and we are now implementing a study with the Uganda Cancer Institute to study the impact these videos have on patients' experiences. The African Palliative Care Association has plans to distribute it to many countries, but this will require dubbing in several languages. More topics are planned for future videos.
Every year we support doctors, doctors-in-training, nurses, and social workers from the US to see patients, develop research projects, give educational talks, and to learn for themselves about palliative care in LMIC’s. We also work with doctors and nurses not only from Uganda, but also from around the world, on the delivery of palliative care in rural areas. As we have heard before, on this past trip one of the four doctors who joined us this year told us, “This experience changed me both as a doctor and as a person.” We plan to continue to support bringing doctors, nurses, and social workers to Africa in the future. We are also hoping to bring healthcare workers from Africa to the US to see how palliative care works here.
Young Benjamin was standing next to his mother, his belly protruding like the adults we had just seen. Prossy translated. His mother said he hadn’t been able to play like other children in the village for at least the last two years. After a brief examination, it was clear that he had findings like the other two adults had. But first thing first, a lollipop for Benjamin that triggered a big smile and a swarm of other village children. So, we handed out more lollipops and balloons and soon noticed several of the children also had very distended bellies and large spleens. Perhaps this didn’t fall in the conventional definition of palliative care, but suffering is suffering so we knew we had to help.
We arranged to have a van pick up Benjamin, his mother and baby sister the next day and drive the hour and half to our base hospital to be hospitalized, see some specialists from Kampala, and get tests done, limited as they are compared to what is available in the US. We also started some treatments pending test results. We covered the costs for all of this, none of which was available to them in their village. We reached out to doctors back in the US for their opinions on this strange ailment affecting this village. As of the writing of this letter, results are still pending, the mystery unsolved, but we hope to help Benjamin and consequently his village.
Ten years ago, we started PCFU to help reduce suffering in a small corner of the world. We’ve grown. The organization is no longer a “mom and pop” organization, but an internationally recognized NGO with a mission to expand the reach of palliative care through education and resources on a continent-wide basis. Prossy and her team have taken care of over 900 patients in distress over the years, all at no cost to them. PCFU has no income other than philanthropy.
But as far as we’ve come, and as big as we’re dreaming, we still come back to the realization that even helping one person at a time, like young Benjamin, makes a big difference.
Howard and Randi
https://www.PCFUganda.org
February 2023 Visit
It's been a busy time since we returned from our trip last month and only now do I have a chance to put down a few words about what a great trip it was. As I've noted before, every trip to Uganda (I've lost count of how many over these last 10 years) is unpredictable and brings new challenges and successes. This one didn't disappoint. Our team on the ground there has ramped back up after the long Covid shutdown and most recently the Ebola outbreak in Uganda, seeing many more patients than in the past couple of years. Traveling to farther reaches in the district they cover, they are now helping to reduce suffering in so many people in the rural communities. It was a pleasure to spend our first week of this trip with Prossy and her staff, seeing them in action, not that there weren't challenges and frustrations due to limited access to specialized care and treatments that we can't provide locally. While we bring supplies with us, some have to be obtained locally and some treatments are just not available without significant amounts of money and untangling massive amounts of red tape. Such was the case of the patient we traveled far out in the villages one day this visit and found she was suddenly paralyzed from the waist down and would have benefited from emergency radiation therapy, a simple task in the US. Despite our best efforts, arranging for transportation to Kampala, providing emergency medications to temporize the situation, and calling our contacts at the only hospital in the country that can do radiation treatments, she never received the treatment. But fortunately, the palliative care team made sure that she (and all the patients we saw) had successful relief of their suffering even if we couldn't get them the treatments they required for their underlying conditions. Bittersweet but sometimes, sadly, that's what you have to accept in under-resourced settings.
Our second week was spent in the capital meeting with Hospice Africa Uganda (HAU) and training them in the use of the video based curriculum we at Palliative Care for Uganda have developed to educate healthcare workers in resource limited settings in palliative care communication and techniques. We presented HAU with some of the educational modules (free of charge) to use in their medical school and nursing school classes in hospice and palliative care medicine.
We always enjoy bringing doctors and nurses from the US with us on our trips to Africa and this time we brought two US physicians, a palliative care attending and a palliative care fellow-in-training , both from Weill Cornell in NYC. It is gratifying to see these young doctors work in Uganda, teaching the healthcare workers there, but also learning a great deal from the Ugandan workers and patients. They also helped out the local doctors at Naggalama Hospital performing health assessments on 1500 secondary school students! It was great to see some healthy patients for a change.
We also arranged for the visiting doctors to round with the palliative care doctor at Mulago Hospital in Kampala, the main government hospital for the country. (Thank you Dr. Liz!) Additionally they gave a lecture to the staff of one of the community hospitals as well as helping with the implementation of our educational modules at Hospice Africa Uganda. I think Drs. Larry and Lauren both had a valuable visit.
September 2022
Palliative Care for Uganda – An update on our work in Africa
The ibis, cloaked in his dark, feathery coat, struts across the lawn behind the Naggalama Hospital guest house, challenging me with his black eyes and scythe-shaped beak, reminding me of the illustration of a medieval plague doctor that hangs in my office. With the distant groan of rainy season thunder, he flaps his way to the shelter of a nearby tree as I sit here watching the downpour and reflecting on our current travels which will soon come to a close. After a year-long pause due to Covid travel restrictions, this is our second trip in 4 months back to Africa.
I haven’t written in quite some time, my pen quelled by Covid even though our work in Uganda has continued. Long overdue, it is time to let you know how we weathered the pandemic storm and where our organization is headed. Coming into our 10th year of work, we have accomplished so much of what we initially set out to do, but as time has passed, our mission has taken on more breadth as needs came into focus.
Palliative Care for Uganda, Inc., (PCFU) the organization we started nine years ago to support palliative care services in an under-resourced area of rural Uganda has grown from a small NGO intended to help a 3-person team of Ugandan healthcare workers at a 100-bed hospital into an organization supporting programs that are poised to be used throughout Africa and even in countries in the Middle East, Far East, Europe, and North America.
Palliative care (PC) is a medical specialty whose focus is to reduce suffering in patients with life-changing and life-limiting illnesses and aims to improve the quality of life of patients stressed and distressed by the symptoms of their illness and the medical treatments they may be undergoing. Given the medical, pharmacologic, psychological, spiritual, and socioeconomic aspects of palliative care, mastering the skills to deliver quality palliative care requires specialized education. Not surprisingly, there are not enough doctors and nurses who have been properly trained to provide palliative care to suffering patients, especially in the developing world.
In Uganda, only 11% of those who require palliative care have access to it. When we first started PCFU, our mission was to help Naggalama Hospital in rural Uganda to build a self-sustaining Palliative Care program with one palliative care trained nurse and 2 assistant nurses to serve a single district of 300,000 people.
Along the way, there have been many challenges, especially during Covid when the president of Uganda put the country into lockdown, prohibiting vehicular travel, closing all schools and many businesses for almost 2 full years. The economy crashed, healthcare and consequently health suffered. Poverty, as abject as it was prior to the pandemic, became even more pervasive. Yet the Naggalama PC team made adjustments to their routines in order to continue to serve those in dire need despite many threats and obstacles. Over the years, this little PC Team has cared for well over 400 patients who would otherwise not have access to this essential care.
The Naggalama PC team is now recognized by many palliative care organizations. as a model for sustainable delivery of palliative care in rural Africa. The team leader, Prossy Nafula BSN, DPC is now consulted by others for her expertise in rural palliative care program development in order to help other organizations start their own PC programs in under-resourced areas.
Just this week, The St. Francis Naggalama Palliative Care program was recognized at the 7th International African Palliative Care Conference for “Contribution to Improving Access to Palliative Care Services in Africa”, this little hospital in rural Africa sharing the honor with other awardees that included large national and international service organizations.
While the pandemic raged, and we were unable to travel to Africa, PCFU, aware of the need for more trained providers of PC, used the time to develop with a documentary filmmaker a video based educational curriculum to help train more healthcare workers in skills needed to provide PC to other rural areas, not just in the Mukono district where Naggalama Hospital is situated. We forged partnerships with other African based PC organizations, to help disseminate the curriculum not only to educational institutions in Uganda, but to other countries in Africa, free of charge. Randi, PCFU’s medical director, has recently been appointed Visiting Faculty at the Institute of Hospice and Palliative Care, the educational arm of Hospice Africa Uganda, the major source of PC education across Africa to help train PC educators in the use of our video-based curriculum. Additionally, in an effort to expand PC education through digital modalities, a necessity in the age of Covid, PCFU has been engaged to provide educational content for monthly webinars through the African Palliative Care Association to countries throughout Africa and the world, all free of charge.
As you can see, as PCFU approaches its 2nd decade, our mission has significantly expanded.
We have grown from a local organization serving a small community hospital to a developer of educational program providing content for PC education internationally. Moving forward, the core of PCFU’s efforts will encompass further development of PC educational curricula, and efforts to broaden distribution through partnerships with larger PC institutions including Hospice Africa Uganda, Palliative Care Association of Uganda, and the African Palliative Care Association. Self-sustainability of programs is paramount to their design.
There is no cost to users of our programs. All that PCFU does, both patient care and education, is totally donor supported, with every dollar going to patient care and educational programming. Administrative costs are covered entirely by our voluntary board of directors. Thank you to all of our past and future supporters; you are what makes all this happen.
As we emerge from the pandemic and move into the future, we continue to actively explore and develop new ideas to further enhance access to palliative care in Africa:
A formal Global Health Palliative Care track within a US medical school to train US physicians, nurses, social workers and chaplains, philanthropically supported.
A Stroke and Spinal Cord Injury Rehabilitation Program at Naggalama Hospital in Uganda
An Inpatient Hospice and PC unit at Naggalama Hospital, something relatively unheard of in Africa, accepting referrals from other hospitals and districts.
Tuition Support for PC education for more nurses and doctors to become certified specialists in PC.
Development of technology-based learning modalities that work better in rural areas.
Expansion of the Naggalama PC team’s reach to a wider geographic area due to great demand.
Support for bringing Ugandan physicians and nurses to the US to learn from their PC colleagues in the US and broaden our understanding of palliative care needs in the developing world.
Finally, with all of these changes, we realize it is time to rebrand PCFU to reflect its broader purpose. Within the coming year we will announce when the new name Palliative Care and Education, Uganda Inc. (PC&ED Uganda) comes into effect. While we will never neglect our initial task to help relieve the suffering of individuals, we aim to fulfill our expanded mission to train more healthcare workers in the community to provide PC services to more people who are suffering.
As the storm passes and the sun comes out, the ibis lands softly back on the lawn and looks at me as if to say “I see we are both still here.”
Howard and Randi
May, 2021 Traveling Back to Uganda after a 19 month Covid imposed hiatus
Many of you have been asking about how the pandemic has affected our work in Africa and I am happy to report that we continue to make strides in providing palliative care to those in need despite the many hurdles imposed by Covid. Until recently, we were restricted from traveling to Uganda, but despite that, we stayed in constant touch with our African partners to help with the increasing challenges there during the pandemic, doing the best we could from so far away.
Here at home during the lockdown, we continued to work on our comprehensive educational curriculum to train on-the-ground healthcare providers (nurses, doctors, community health workers) in techniques of palliative care that can easily and inexpensively be employed to relieve the agony of chronic and life limiting conditions in the poor rural communities in Africa, and around the world. The uniqueness of this curriculum, unlike any other, is that the education is done with video clips from actual unscripted patient interactions out in the field.
We are happy to report that we just returned from our first trip back to our home-away-from-home in rural Uganda after over a year of not being able to travel, and were impressed by the work being done there by our team. Despite being restricted to traveling to patients in the remote areas due to the country’s lock-down, Nurse Prossy and the team carried on with a “pop-up” palliative care clinic they set up at Naggalama Hospital for patients and relatives who could travel by foot or bicycle. If the patients were unable to travel, relatives would come to get counseling and medications for their loved ones. Mobile phones (ubiquitous even in the poorest villages) were a valuable tool. Fortunately, now that the restrictions to vehicular travel have been lifted, our team is back out in the field delivering critical care and supplies to those in need.
While seeing our amazing palliative care team at Naggalama Hospital was special, one of the big highlights of this trip was presenting the palliative care video-based educational curriculum to the "Institute of Hospice and Palliative Care in Africa," a center for higher learning offering diploma and degree level programs to doctors, nurses, and healthcare workers from across the world. IHPC is very excited to begin using our program, which we will be providing them at no cost, so more can be trained in the principles of palliative care.
And as our team’s reputation has spread, they are now getting calls from other districts (counties) requesting their services. Pre-Covid, the team saw patients only in their own Mukono District, traveling the muddy rainy-season roads to see as many patients as possible, but now because of the dire effect of the pandemic on the whole area, they are answering calls from surrounding districts, some many kilometers away, doing their best to serve a much larger catchment area of about a million people as the only palliative care team in the area. A huge challenge, but one they are dedicated to meeting. Obviously, we hope to develop and financially support their efforts during this very critical time.
And finally, the documentary “Oli Otya – Life and Loss in Rural Uganda” by award winning filmmaker Lucy Bruell, that follows our work in Uganda is now being used by several U.S. undergraduate universities, nursing schools, and medical schools to enhance the teaching of their students in a wide-ranging list of courses including medical, public health, journalism, film, and ethics, to name a few.
In addition, the film has been garnering accolades at film festivals worldwide, most recently the 2021 African Film Festival. Congratulations to Lucy! Film link: https://www.oliotyafilm.com/ .
June, 2020 - In The Midst of a Pandemic
On a continent where healthcare is severely under-resourced, where there is little or no access to medical care in vast swaths of the population, where there are less available hospital beds and health professionals than anywhere else in the world, a crisis of COVID-19 related suffering has ignited in Africa affecting millions of socio-economically vulnerable people.
Not since HIV emerged has there been more of a need for palliative care in Africa than during this pandemic. Alongside the urgency to advocate for access to life-saving care for those affected by COVID-19, there is a just as important need to incorporate palliative care strategies to alleviate suffering and uphold dignity during this crisis.
There is a crucial need to care for those suffering and those who will die of COVID-19 throughout our world, but because of the very nature of this illness, palliative care is an important piece of the total care of those affected by it. Whether it is addressing the physical symptoms, the emotional toll, the spiritual burden, or the economic stresses of the illness, palliative care must be there to reduce the suffering of the patient and providing psychosocial support for their families.
Palliative Care for Uganda, Inc. (PCFU) has been working in rural Africa for many years and understands the evolving needs of the population there. We have developed educational as well as clinical programs to help the local healthcare providers provide palliative care to reduce suffering in this underserved area. Communication is the cornerstone of effective medical care and PCFU has the understanding to address these issues despite many obstacles specific to this pandemic.
But resources are scarce and outside support is needed to help our organization meet the challenges of COVID-19 in rural Africa. We at PCFU believe that we have an ethical duty to relieve distressing symptoms such as pain, anxiety, and breathlessness as much as possible for those who will survive, and also for those who will not. Ensuring adequate supplies of medications, and the means to provide them to those who need them are key for treating symptoms and minimizing suffering effectively. Complicating matters, travel restrictions instituted in many areas of Africa during this crisis, even the ability of our team traveling from village to village, or patients coming to us, means that the innovative use of communication technology is something that our organization is investigating along with other strategies to help people maintain contact with our palliative care team there. This is useful during illnesses but also during times of grief and bereavement.
This pandemic means that PCFU has the added mission of relieving suffering in the COVID patient as well as for those afflicted with the other chronic and life-threatening illnesses for whom we’ve cared for all along. Please consider helping. Go to the “DONATE” page and give what you can. It will be appreciated by those who benefit.
Howard
December 2018 - Nervous Energy
There’s an entire railway network running through our bodies known as the nervous system. We all have one and most of the time it works fine. A bi-directional grid transmitting messages south from the brain, telling our muscles to contract and move our various parts, and north delivering signals from our skin, our organs, our senses back to Grand Central allowing us the opportunity to relate to our world.
But sometimes the trains get derailed.
He suffered in silence, no sensation from his abdomen to his toes, feeling nothing but uselessness since his fall from a high branch, breaking his spine in half. His wife was in the fields doing “his work” as he sat propped up against a tree trunk under a suspended tarp shielding the midday sun, the starving children crying until their mother comes back to prepare them a meal with which he cannot help.
~A neighbor had called us to see him after hearing about our team while she was at the hospital visiting a friend who had received palliative care there.
Sometimes, the tracks deliver a message of a problem back to our brains.
She suffered in silence from the pain in her bones; the growing cancerous spots gnawing day and night, selfishly never taking a rest from their relentless invasion of her body. But with a typical Ugandan shrug of “it is what it is” stoicism, she sat quietly, only her facial tightening tattling her misery. “What good is it to complain when there is nothing to be done?”
~Her village health worker had called us to see her. Village health workers (VHT’s) have minimal formal medical training and are community volunteers who triage health issues of their neighbors to local medical practitioners and facilities. Fortunately, this VHT had sat through a day-long presentation with 85 other VHT’s invited by our organization to learn from our Ugandan palliative care team that something can be done to alleviate the suffering of their fellow villagers.
In his book, “The Nature of Suffering,” writing about the treatment of ailing patients, Dr. Eric Cassell states that success comes from not only treating the disease, but also treating the person and their unique web of social interactions including family, job, and community. “No person exists without others; there is no consciousness without a consciousness of others, no speaker without a hearer, and no act, object, or thought that does not somehow encompass others. Furthermore, the extent and nature of a sick person’s relationships influence the degree of suffering from a disease.” In other words, a person’s suffering cannot be treated by medicines or surgery alone.
Or as Nobel Prize winner Dr. Bernard Lown wrote, “Caring without science is well intentioned kindness, but not medicine. On the other hand, science without caring empties medicine of healing.” (The quote familiar to my patients hangs framed on the wall of my office examining room.)
But in a country like Uganda, and particularly in the rural areas where the science side of the balance is critically limited, it is the humane caring and communication that fills the deficit, and enriches the treatment. The crux of caring comes not from medical technology, but through trained and practiced communication, a skill as difficult to learn as any medical procedure.
Our organization, started some 7 years ago, Palliative Care for Uganda, recognized the gap between science and caring in medically under-served areas, and set out to reduce the suffering of people that couldn’t get adequate disease treatments found in more economically sufficient areas. Initially our work involved bringing supplies and palliative care expertise from the first world and adapting them to the third world. Yet the old adage, “You can give a man a fish and he’ll not be hungry for a day, but you can teach a man to fish, and he’ll never be hungry again,” made us rethink our approach.
Over the past couple of years, we have started developing an educational curriculum in Communication and Palliative Care for healthcare workers in rural Africa. With the help of the filmmaker that is making a documentary of our work in Uganda (Yes, believe it or not, someone actually thinks a documentary should be made about us), we have had access to video footage of patient encounters with our Ugandan team that demonstrates very clearly many of the palliative care principles that can be learned and implemented by local African teams who take the educational program we are designing based on the videos. We rolled out a pilot program this past spring to several rural Ugandan health facilities to great success. Our hope is to develop the course further so it can be given to many local healthcare teams to teach workers how they can implement what we do, on their own.
And while we originally felt that the curriculum would be helpful primarily for rural Uganda, when we presented the pilot curriculum to the pan-African organization, The African Palliative Care Association, they told us that they believe that this self-study course is relevant to many countries in Africa, not just Uganda. In fact, they have requested that we present it to its 28 member countries at the International African Palliative Care conference in Rwanda next year.
Remember those two types of nerves running to and fro? Well, our organization has a nervous system of its own. One is feeling the need, sensing the suffering of the people around us. But the other drives the mechanisms of action, to make things change, to make things better, to educate more health workers, to move things forward. With the help of our supporters, we aim to make sure that the signals function at optimal levels – in both directions - and help as many people as we can.
Thank you,
Howard and Randi
March 2018 - Glaring Similarities
I’m in Uganda today. Surrounded by friends, colleagues, and so many patients. Sitting in my chair, at my desk. The light shifts, I look out the window and it’s snowing. Really coming down. Those big flakes, sticking to the railing of the fence surrounding the deck. How much snow has fallen, 5 inches, maybe 6? I redirect my gaze back inside and look again at my laptop. The picture of 4-year-old Willie high-fiving me, his big belly stretched tight with fluid and tumor, a momentary smile caught by the camera, in the blinding equatorial sun.
I spend every day in Uganda. Even though it is 7000 miles away. Because anyone who has been there, anyone who has done the type of work we do, knows that Uganda gets inside of you and you can never be away from it. Whether it is with little Willie and his shy smile, or old Suleiman, lying on a woven mat, reaching his hand up to shake mine, because that’s the only part of his body he can still lift on his own due to the ravages of disease and hunger. Mustering the strength to say thank you. For what little we can do for him.
Uganda sits on the equator in East Africa, a country about the size of Oregon (but with 10 times the population), once called the Pearl of Africa by Winston Churchill. * It’s indeed a beautiful country, not so much by the landscape, but by the people we have met there. No matter what worries they have, what troubles they carry, the Ugandan greeting is always, “You are welcome.” Hospitality, in the Ugandan style, is a fresh clean mat laid out onto the floor on which to sit, always brought for a visitor even if the family must sit on the dirt floor.
People who know us know we carry Uganda with us. Many don’t know why. Many don’t know much about Uganda and what draws us there. I can tell them facts, like, “You know, if you were born a Ugandan instead of in the US, your lifespan would be 25 years shorter.” Or “You’d make 97% less money if you worked in Uganda”, or “Your children would be 10 times more likely to die in infancy.” Harsh statistics that make us all very uncomfortable. Certain to cut conversations short. And we don’t want people to back away when we tell them about why we go to Uganda, so we don’t tell them these things, certainly not at the beginning of the dinner party. Maybe after a couple of drinks.
But it’s not the differences between countries that draw me to do the work we do, rather it’s the similarities between us that absorb me. A cough, a pain, or breathlessness are all blind to where we live, and who we are. Worries that the headache or dizziness might be a sign of something serious. Something all people experience no matter where we were born, what we do to survive. That we fear that an illness will debilitate us, perhaps make us unable to earn a living, care for our families, is the same in Uganda as it is here in the US. Weakness, nausea, and worry know no culture or government. And above all, pain. Pain ignores geopolitical borders or socioeconomic status, we all experience and fear it the same.
But the main difference between “us” and “them” is access to relief. The ailments and the misery are something we all share. To be free of symptoms is something we all strive for. To gain comfort; that is the great divide. There is the inequality born of chance.
I look out the window again and the snow has now stopped. It’s really pretty, all clean, but the afternoon sun hurts my eyes with its silent glare. I turn toward Uganda.
__________________________________
*Winston Churchill, 1908 “For magnificence, for variety of form and color, for profusion of brilliant life — bird, insect, reptile, beast — for vast scale — Uganda is truly “the Pearl of Africa.”
August 2016 - Core Values*
It is when I have just returned from Uganda, at least once the jet lag burns off, that the reason I go to Africa becomes evident. Not while I am there, and certainly not in the unsettled time leading up to my trip; those weeks when I question most why I am going. It is when I resume my “normal” life, my real life, my “day job” when the reason I have just spent a month eating bad food, riding along bumpy dirt roads for hours to see one patient, and feeling adrift in a medical world of uncertainty becomes suddenly clear to me, like the condensation on the windshield evaporating when you turn on the defogger. It is when I return from the humid equatorial climate of Uganda that I finally see where I’ve been and why.
So many people who greet me upon my return offer up their own understanding of why I go:
“It must feel really good to go there and help.”
It does. But that’s not why I travel 7000 miles to a remote country. There are so many people to help right here at home.
“It must be so completely satisfying to go there.”
Sometimes, although a lot less than you’d imagine. But I don’t tell them that. I just smile and nod; avoiding a discussion about the frustration I feel that there isn’t more that I can do for the patients I see there.
“The people you see must really appreciate what you do.”
They do, but again, not why I go.
“We have a new patient to see,” says Prossy, our head nurse, as our 9 member team squeezes into our 7 passenger car, leaving our base of operations at the rural hospital we stay at while in Uganda for our daily trip into the outlying villages to make our palliative care rounds. “Is it far?” I ask, knowing that the roads will be deeply rutted; our aged vehicle’s worn out suspension groaning with every unavoidable bump. “Yes”, she replies. How far? “An hour.” “An hour!” I exclaim, trying unsuccessfully to remove the American whine in my voice. “OK. A half hour,” she smiles.
After an hour and a half of rocking over narrow mud roads, nudging stubborn cows with my horn and bumper, dodging trucks overloaded with sugar cane careening toward us, and as courteously as possible allowing women balancing oversized bundles on their heads to climb up the embankment to allow us to pass, the worn out springs of the driver’s seat imprinted on my butt, we drive up to the patient’s home, a small mudbrick hovel surrounded by a few sprouts of maize, a couple of coffee bushes, and some chickens running amok. There, sitting very quietly on a bench in the dirt yard, drawing hard on his breath, is young Julius, fifteen years old, head hung low, staring at his bare, swollen feet.
My jaw tenses, my stomach twists when I look at the boy. I walk up close to him, his loneliness becomes mine. The discomfort of realizing how very sick he is and how much he is relying on me to relieve his suffering unnerves me. Me, a data driven, tech-addicted doc from the west, stripped bare of his laboratory tests and scans, struggling with only my senses and my knowledge to find my way in the barren rural Ugandan healthcare landscape. No blood tests, scans, or specialists pointing me toward a diagnosis, suggesting a treatment. Feeling exposed, dispossessed of my comfy blanket of technology, I sit down on the bench. This is what it means to me to practice in an underserved, undersupplied area of the third world.
Abraham Verghese, best known as the physician author of the bestselling novel Cutting for Stone, is also known among doctors as a brilliant diagnostician and a vocal proponent of the lost art of the doctor’s hands-on physical examination of patients. He has coined the term “iPatients” decrying the deterioration of the doctor-patient relationship through the ever increasing use of electronic medical records and technology instead of the humanness of personal interaction. In a 2011 New York Times Op-Ed “Treat the Patient, Not the CT Scan”, he wrote, “Rituals are about transformation, the crossing of a threshold, and in the case of the bedside exam, the transformation is the cementing of the doctor-patient relationship, a way of saying: “I will see you through this illness. I will be with you through thick and thin.” It is paramount that doctors not forget the importance of this ritual.”
I was trained in the day when CAT scans were a new and rare commodity, MRI’s were only a sketch on an engineer’s table, and computers were big as rooms and required someone called a “key punch operator” rather than the click of a mouse to make them work. Some people, including my children, both newly minted physicians, might consider that educational background a disadvantage. But sitting on that bench in the dusty air of rural Africa, I thought of how fortunate I was to have been forced to rely on my hands, eyes, and ears, rather than radiation, blood, and microchips to do my diagnostic testing. Humbled, questioning my skills, at that moment I wished that I could make Abraham Verghese appear to help me figure out what was wrong with young Julius.
Back in the US, Randi and I recently met with the filmmaker doing a documentary about palliative care in rural Uganda and she was telling us how she viewed what we did there. Lucy explained to us that the way she sees it, when we are there, we return to the “heart” of medicine. Stripped of all the modern bells and whistles, in rural Uganda we become doctors from a bygone day, spending great amounts of time patiently listening to patients, talking with patients, examining the patients, looking for clues to their diagnosis, trying our best to understand what was ailing them as people, as a part of a family and a community and to figure out what we could do to help them best with our limited means.
It’s like being in a dark movie theater for a matinee and walking out into the afternoon sun, the light is so much brighter. Coming back to the US after being deprived of all the medical data that I typically rely on to get to the crux of my patient’s problem; my low-tech physical diagnostic skills are sharper, more sensitive to picking up the subtleties. I see each patient more clearly, I hear their complaints more sharply, and I feel their discomforts more personally. Returning to my tech laden medical practice, I find myself ordering fewer tests, calling fewer consults; I am more confident in my abilities as a physician to minister without the crutches of data. Sure I still use tests when I’m back to confirm my instincts; Uganda brings me not only confidence but humility in my abilities to care for people. But my perspective shifts as a result of being in Uganda, and the relative importance of what is available and what is necessary is redefined when I return. Just like the more you use a GPS in your car the harder it is to find your way when you don’t use it, as I reacclimatize to the computerized medical world, I lose my more well-honed sense of direction until I return to Africa.
It is in the weeks that I return that I realize why I have gone and why I will return. Sure it is satisfying to get an email from our team leader that young Julius is doing so much better, happier and more active, since being on the heart medications (and reading the schoolbooks) we brought him. And of course it makes us happy to hear how many of the patients we saw are asking for us and tell our team to thank us yet again for our help. But it is in the weeks following my return that I realize why I keep going back despite all the challenges. Simply, it makes me a better doctor to my patients. All my patients, both in the US and Uganda. And that’s good for everyone.
Howard
August 2016
*Core - from Latin cor (“heart”); or from Old French cors (“body”)
May 2016 - Rules Made to be Broken or the $16 Wager
I broke a rule today.
Whenever I am asked why we do our global palliative care work where we do, I describe Uganda as "the sweet spot of misery." Usually met by puzzled looks, I explain that unlike many places with dire need where there are governmental, geographic, and societal forces countering sustainable progress no matter how much money and resources are poured in, Uganda for many reasons responds better to outside assistance than many other countries. Like a lever moving a boulder, nudging things forward takes less effort with a greater effect in Uganda than elsewhere. But it’s still a really big boulder.
Now don't get me wrong. Places like Haiti deserve the ongoing attempts to help their people, but our organization Palliative Care for Uganda (PCFU) has neither the vast amount of money nor access to the abundant resources needed to make long-lasting changes in those places where the lack of infrastructure and meager governmental support hampers well intentioned efforts. The type of work we do in Uganda, and this is for many different reasons, reacts to outside efforts more effectively and sustainably than other places. Among other things, a big part of this is due to the partnerships that we have forged there. Working with motivated organizations and caring people such as Sr. Jane of Naggalama Hospital in a country with an infrastructure, albeit flawed, allows our efforts to impart a greater impact than elsewhere.
When one visits rural Uganda for the first time, you quickly realize how much need there is. Poverty and the attendant suffering are pervasive. As a non-governmental organization (NGO) there to provide aid, it is especially difficult to have to say no to the many reasonable requests for our financial help. We learned quickly that hard decisions have to be made, such as turning down groups asking us to support the building of a new obstetrical ward to replace the poorly functional and overcrowded one that exists. Or paying for a new vehicle to transport children to school. With limited funds, we have to stay within the guidelines that we set up when we began our NGO devoted to the delivery of palliative care in rural Uganda. Even so, it is still hard to say no.
Yet, those institutional requests are not nearly as hard to turn down as when an individual has an obvious desperate need for food, clothing or a few shillings and I have to deny my own impulse to give them a handout. At those times we have to remind ourselves over and over that PCFU’s goal is to support changes in infrastructure and educational needs, and not function as a social charity. There is a bottomless pit of need and we unfortunately have a limited amount of resources that leads to a severe imbalance between necessity and solutions.
I am writing this at 37,000 feet flying back from a week of work in Uganda, an emotionally draining few days of seeing some very desperate people. The most difficult moments were seeing patients in the outlying villages, down the muddy paths, with illnesses that have readily available treatments in the developed world but not in Uganda, even at the main medical center in Kampala. And even if they have the diagnostic technology and effective treatments at Mulago Hospital, the system is inefficient and cost prohibitive to our very poor sustenance farmers and laborers away from the big city.
Every day, all day, case after case, at each stop along those bumpy roads with our palliative care team, I wanted to tap the PCFU bank account and give these people the money required to send them to the main government hospital for the "advanced" medical tests (a simple ultrasound or blood test is advanced there) and treatments, whether surgery, chemotherapy, a pacemaker; not to mention much needed food and daily essentials. But the bank account would empty very quickly.
When I see a patient in Uganda for the first time, attempting to make a diagnosis out in the field with no lab tests or scans available, just my hands-on diagnostic skills, I run down the list in my head of what the patient needs medically to diagnose and how to best treat them. At the top of the list are the tests and treatments I would do if I were back in the US, but quickly I dismiss those possibilities as unavailable, and move further and further down the list until I reach the meager compromises of care that is attainable in this socially and medically hobbled area of the world. That is why I often leave the home of a grateful patient and their family as they are effusively thanking me for talking with them, listening to them, attending to them, treating them with the limited resources available, keenly aware of a wretched gnawing in my gut that I should be able to do more.
Andrew* was one such patient I saw the other day. We know him from our visit last summer when we first saw him. A 39 year old taxi driver, father of 3, he cashed in his savings to be seen at Mulago Medical Center in Kampala because of a rapidly growing swelling on his lower lip. Diagnosed with cancer, he was told that the treatment was radiation therapy costing more than his savings would allow. He left the hospital. When Randi first saw him with the very large swelling of his lip, she advised that he should go back to Mulago for treatment. He cast his gaze downward and embarrassingly told her that he didn’t have the money to be treated. Looking up, he then pointed at a bicycle hanging on the wall of his one room home.
“Unless,” he said, “I sell the bicycle. But then my children won’t be able to go to school.”
The bicycle still hangs on the wall, a memorial of his decision. His cancer has now spread to his tongue and gums. He will soon starve to death.
The next day I saw Grace*, a 42 year old mother of four with an advanced gynecologic cancer. A cancer that when I examined her last week I knew would have been cured had she been diagnosed and treated had she lived in the US. Raising her children on a meager income, her husband having left her when she got sick, she sought medical attention first at a local hospital that diagnosed her with cancer, and then told her she needed surgery and radiation therapy and chemotherapy at the big government hospital. It would cost more than all of her possessions.
A common dilemma in the third world, whether to take your life savings, take away food and other essentials from your children now, in order to “possibly” save your life and hopefully be able to care for them in the future. And that's a big "possibly", even at the best hospitals in Uganda where care can be of variable quality and effectiveness. More than a dilemma, it is a huge financial gamble with dire risks that these patients face.
That day I learned from Grace that there is another option that I didn't know about. She had gone to a bank and gotten a loan to cover the cost of the promised “curative” treatment, using all of her belongings as collateral. She then sent her children to their grandmother in another village, and after a 2 month wait (and her cancer growing rapidly every day) she finally got the proper appointments, with the loan of 800,000 Ugandan Shillings in hand (about $250). After several weeks of costly appointments and tests, she was abruptly told that the cancer was no longer operable, and there was no point to undergoing radiation or chemotherapy without the surgery, and she was sent home with an envelope of Advil pills for her mounting pain.
(Even if she could have the radiation therapy, it was recently announced that the only radiation therapy machine in Uganda became irreparably broken and another won’t be available for at least a year. Ugandans with money will go to other countries for radiation therapy. Our patients don't have the means to do that.)
Sick with cancer, unable to return to her job, the loan officer has told Grace that if she doesn't keep the payments of 20,000 shillings ($6) per week, she will be imprisoned, where she will not get any medical care, not to mention palliative care, and never see her children again. (This fact was confirmed by other members of our Ugandan palliative care team with me that day, nodding knowingly how the system worked.)
I broke a rule today.
Whether due to jet lag, my own emotional fatigue, or the maternal look in Grace’s eyes in the doorway-lit 4 x 6 foot room she lives in, I reached into my pocket and started counting a few shillings that I had shoved in there as an afterthought just before I boarded our vehicle to go out on the day's rounds. I had about 200 thousand shillings ($62) on me. I started to give them to her and she said “no.” I insisted and she relented, saying she would only take the 20 thousand she owed for the week; pride showing in her eyes. She would find some way to get the following weeks’ payment, she reassured me. I forced 50,000 shillings ($16) into her hand and she started to weep. Actually heaving sobs, her hands moving up to hide her face from me. Eventually she regained her composure. At that point the nurse who had been standing behind us and gave out a big laugh. In her heavily accented English she exclaimed, "Doctor, look at how she has relaxed, her shoulders have come down. We have never seen her like this; we have never seen her smile before." I thought, these few shillings are at this moment better than any pills we could give her, better than the morphine we had been supplying her for her cancer pain.
Harvard professor and a leading authority on palliative care in developing nations, Eric Krakauer MD PhD stresses that palliative care has to be defined differently in places like rural Uganda than in wealthier countries. While wealthier countries have programs that address the socioeconomic plight of the poor, this is not the case in less developed countries where there are no such safety nets and palliative care must address not only the medical symptoms and sufferings of the illness, but there is no way that one can succeed in ameliorating a patient’s sufferings without addressing their socioeconomic situation as well. It is a lesson we are learning in Uganda.
With Grace finally relaxed, she started to talk about her fears, her cancer, her future, as she never was willing before. We talked for a long time. And by the end, we had cried and laughed together. I walked out into the sunlight and this time I felt a little less remorse than usual. Well, if I'm to be honest, I still felt the gnawing regret that I should have done more. But there's tomorrow and I will be in touch with the team by internet to follow up with Grace. The goal is to hedge the bet and improve the odds. That’s what we do.
Howard
October 2015 - Building Blocks
He looked like a frail, wizened old man, right hand grasping his chin, his eyelids appearing tightly closed in deep contemplation but actually sewn shut, a turban of rags wrapped around his bald head. But Ibrahim is a 9 year old boy, wise beyond his years, having endured a sagacious elder’s lifetime of suffering.
We first saw him sitting on the straw mat in his homemade brick and mud hut in rural Uganda, in a shaft of sunlight, his face passive and turned toward the warmth. Yet his tense stillness and the slightly too taut clench of his fingers betrayed the immense pain he was hiding from the mzungu doctor from the US visiting that day. Withered and weak from not eating for weeks, unable to walk on his spindly legs, his grandmother’s eyes glistened with concern and angst. What could the palliative care team do to steel her little Ibra from his continual suffering? What could she say when he asked “Grandma, why doesn’t God take me from my suffering?
As the doctor kneeled next to the boy, the palliative care team recounted the few lines of medical history they had obtained. At one year, the little boy started having problems with one of his eyes, and with no relief from drops, the doctors in the government hospital removed the eye. By age 3, the other eye was removed. No reason given. And now he had growths on his scalp that were diagnosed as cancer. “That’s all we know?” asked the palliative care doctor taking the boy’s bony fingers in hers, his skin coarse like sandpaper and speckled with a starry sparkling like flecks of mica in a granite rock. “Yes, that is all we know.”
Turning her attention to the boy’s scalp, she watched grandma peel away a thin layer of gauze revealing cotton batting stuck to the lumps underneath. With as much care as possible, the palliative care nurse moistened the cotton and teased away the fibers of cotton from the weeping lesions on Ibra’s head. With every gentle tug, a tightening grip of the boy’s hand on his chin, a tensing of facial muscles, and a muted whimper. Trying to distract him from his suffering, the doctor asked Ibra whether his friends ever come to play with him. “They used to,” he said. “We would pretend we were building with bricks, but they don’t come anymore. Now I’m mostly alone except for the thoughts in my head.” When each shred of embedded cotton and gauze had been dissected away, both the doctor and Ibra sighed as the full impact of what had laid beneath the crusty dressing was revealed. Tumors the size and color of rotten potatoes had burst through the boy’s scalp, weeping and draining, one invading from behind his right ear piercing through, pus oozing forth from what was once his ear canal.
“Ibra,” the doctor asked,” how are you?” A squeaky voice replied softly and swiftly, “Fine.”
Ibrahim was transported by the Palliative Care team to the nearby rural hospital in Naggalama the next day, his grandmother dressed in her finest clothing for the bumpy dirt road ride. Ibra, in a too loose polo shirt and shorts, with a bright orange terry cloth hat for the outing, winced with each rut in the road the van navigated and explored his surroundings with his hands. Soon, with IV in hand, he was on the pediatric ward in the corner bed, in a section removed from the other sick children. Whether the charge nurse was keeping him from the disruption of the other families and children, or protecting the other patients from the sight of this alien-like child, the palliative care doctors didn’t ask. But in his corner bed, with grandma kneeling on the floor mat at his side, he received his first dose of oral morphine, a test dose, intentionally lightly dosed, to see the response by his wasted little frame and to reassure even the palliative care team of the efficacy and safety of using morphine for this young, frail boy.
A smile. Not a wide grin but a little smile as the morphine chiseled away some of his pain for the first time. The next dose even better, and with some oral numbing medication, Ibra greedily slurped a box of mango juice after almost no food for weeks. A happy grandma. Eyes gleaming, this time with tears of happiness and not dread.
And now time for the dressing change. Pre-medicated but wary, Ibra heard the doctors come closer, the supplies gathered at the bedside. Grandma looking on with apprehension, Ibra started clutching his chin in what we came to know as his stoic pose of resolve to hide suffering and pain. The cotton teased off the rotten potatoes, shreds and threads scraped from the crevices of the tumors, Ibra’s hand gripping his chin tighter, his eyebrows furrowing with each peeling away of the stubborn cotton.
Two weeks before, prior to leaving, the US doctors had gone to the Americares Medical Outreach website as they do every year before their trips to rural Uganda. Like one of those reality TV shows where people would open a storage unit not knowing what they had won, the website would reveal what was available for the doctors to carry with them on their trip this time, different items each time they logged on. Picking and choosing from the available medications and supplies, always having to decline certain necessary items due to weight and space limits, the doctors would debate back and forth what would be most useful and would fit in their luggage. Never knowing what patient problems would be encountered on each trip, there was always a balance of guessing and gambling on what would be the most helpful on the trip. Antibiotics, diabetes and blood pressure medicines, those were easy to choose, small and definitely desperately needed, they always found their way into the doctors’ big duffels. But bulky items had to be chosen much more prudently. Do we have room? Is this too heavy? Will they be able to use it?
This year, for a reason they can’t remember, the US doctors decided to take Xeroform gauze, a Vaseline and iodine impregnated dressing, and Kerlix gauze. Never having a need for this type of wound covering on past trips, they decided to bring several boxes of it on this trip. What a lucky choice! The Xeroform dressings, heavy though they were, and the Kerlix gauze that was light and compressible enough to shove into our bulging duffle bags turned out to spare Ibra from one of the worst daily moments of his many tortured days, the dressing change. With the cotton removed, the raw scalp gently cleansed, the soothing Xeroform dressings were applied with care and wrapped in a turban of Kerlix. Crowned with his bright orange terrycloth hat, the young man’s body relaxed as he lay back in his bed to rest from the ordeal.
The next day’s dressing change was mostly free of pain, as the Xeroform was easily removed and fresh pieces were laid gently over the tumors. Barely a grimace, Ibra sucked down a mango juice while the procedure was carried out, his grandmother studying the process of trimming and fitting each piece to insure proper coverage and minimal waste of supplies. By the following day, she expertly copied the doctors’ technique and from then on managed her grandson’s daily dressing changes with loving care and without fault.
Like so many others in rural Uganda, Ibra’s cancer is so advanced that it cannot be cured, but the palliative care team is doing its best to help prevent and treat his suffering. Ibra left the hospital a week later, his pain controlled, his appetite improved, his strength returning with his replenishing reserves. The van dropped him off, and he got himself out of the vehicle’s seat, and walked through the rain, only lightly holding his grandmother’s arm, back to his mat. She carried a bag of Xeroform and Kerlix; Ibra carried the bag of plastic blocks we had gotten him so he could build the structures of his imagination.
Howard Eison MD
Randi Diamond MD
July 2015 - As the Days Are Getting Shorter
The weather in Connecticut was nice this weekend, and as autumn is rushing at us sooner than we want, I went looking for any excuse to avoid writing this letter to my patients and friends about my upcoming trip to Africa. Desperate for distraction, I spied sitting on top of my “procrastination pile” of unread books, Being Mortal, by the surgeon/writer Atul Gawande. Not exactly light reading for a summer’s day, but something that holds great interest to my wife and I as directors of “Palliative Care for Uganda, Inc.,” our non-profit that develops and sustains the medical specialty of palliative care in rural Uganda.
And an opportunity to avoid writing this letter on a sunny day.
Although my wife Randi Diamond MD has been a professor of Palliative Medicine for some years now, it is a specialty that was until recently kept in the dark corner of the medical field. With early accusations of “Death Panels” and other misunderstandings of what palliative care doctors do, it is only in the past 1-2 years that the specialty is finally moving to the daylight of medicine, not only as a means to address many of the economic healthcare issues facing our country, but as a much needed cog in the complicated gears of patient care.
Simply put, palliative care is specialized medical care for people living with serious illness. It focuses on relief from the symptoms and stresses of a serious illness—whatever the diagnosis or prognosis. The goal is to improve quality of life for both the patient and the family. It is typically provided by a team that may consist of a palliative care doctor, nurse, social worker, and spiritual counselor who work together to provide medical treatments and emotional support to alleviate suffering and improve the quality of life of the patients and their loved ones. It is appropriate at any age and at any stage in a serious illness.
Further evidence of palliative care’s movement to the forefront are the increasingly common newspaper articles, the recent announcement that Medicare will reimburse doctors to have discussions with patients about their goals of care in chronic illness, and Dr. Gawande’s book sitting on the top of the NY Times Bestsellers list for the past 6 months.
In Being Mortal, Dr. Gawande addresses society’s challenge of our increasing ability to extend life, how we are now commonly faced with finding the difficult balance between quantity of life weighed against the quality of that life. That balance is what palliative medicine addresses for the individual when faced with a serious illness. Through medications, techniques and procedures, and most of all, discussions, palliative care providers help an individual and families make the personal decisions necessary but heretofore ignored.
Susan Block MD, the chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute has said, “These conversations may cover end-of-life topics, but they’re not only about end-of-life. They really focus around how people want to live, and what their priorities are, what’s important to them in terms of living with a progressive, serious illness.”
Gawande’s book reports on a landmark study done by Dr. Block a few years ago. Half of the 151 lung cancer patients studied received usual care from their oncologist, while the other half received the same care but also were cared for by a palliative care specialist who addressed their physical symptoms such as pain or breathing difficulties, as well as having ongoing conversations with the patients on their hopes and fears. Dr. Gawande, who credits his own awakening to the benefits of involving palliative care specialists with his own patients to what he has learned from his palliative care colleagues, writes, “those who saw a palliative care specialist stopped chemotherapy sooner, experienced less suffering, and they lived 25% longer.”
Oddly, Uganda is in some ways ahead of the U.S. when it comes to palliative care. Largely because of the hindrances to providing timely and curative treatments for many illnesses that are adequately dealt with here, the Uganda Ministry of Health has been supportive of palliative care for many years now. The government there realizes that through the use of palliative care techniques, the reduction of suffering and an improved quality of life in these people can be the most important component of patient care.
But efforts by the Ugandan government have been focused almost entirely on the urban centers of the country where only 15% of the population lives and 70% of the healthcare providers of the country work. Randi and I, through Palliative Care for Uganda, focus efforts on the rural populations, where access to medical care of any type is difficult and so palliative care is crucial.
So whether I call it procrastination or “personal palliation”, my time reading Dr. Gawande’s book this past Sunday was more than relaxing. After reading, it became clear to me that my letter to you of my upcoming trip needed to help you understand why Randi and I go and do what we do.
Weebele (Thank you)
Howard
Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End
September 2014 - Banana Liquor
As he smoothed the plaster on the gleaming white cast, the orthopedist smiled at his latest sculpture. The patient’s story was that because he had a little too much to drink, he found himself on someone’s plantation picking a banana, thinking it his own banana tree. The plantation security team dealt their justice swiftly without testimony. Not that the pieces of the banana juiced man’s story fit properly, but then neither did his left humerus bone and 4th metacarpal, with jagged edges meeting jagged edges at right angles instead of end to end. And what in the end needed to get straightened out were the bones more than the man’s story; the police would handle that intervention.
When he was brought in to Naggalama, the bone-setter Kevin felt it was best for the banana man to sober up before consenting to care, but in the meantime sent him to the cashier to pay for the necessary x-rays. Clearly the left humerus was snapped, that was obvious by the patient appearing to have two elbows on the left arm, one in the usual spot, and one 5 inches above the one he was born with. The left foot was puffed out more than the right, and both hands were hugely swollen like boxing mitts. So the patient was sent for 2 views of the upper arm, both feet and both hands to be x-rayed.
A few hours later, when hangover was overlapping inebriation, Kevin was smoothing the sculpted cast on the left arm from left shoulder to elbow, and another from elbow to the left boxing mitt, the alleged thief snoring from banana liquor anesthesia. But what about the right hand? The feet? I asked. Dr. Kevin finished smoothing, almost polishing, the plaster and explained matter-of-factly that the because of the cost of all the x-rays, the patient chose one view of the upper arm and a view of the left hand and left foot because that’s what was hurting him the most. I picked up the x-ray again and held it up to the window. The severe humerus fracture was obvious as was a left hand fracture. The left foot x-ray was normal.
“But couldn’t the right hand be broken as well?” I asked, recalling that it had looked like he had had equal sized boxing mitts on? Dr. Kevin ran his hands down the cast one last time, now smooth and cleaner white than anything else in the small procedure room. He nodded, removed his gloves and apron, said something to the patient, and said, “This is a problem we have in Uganda. People don’t have money to pay, and hospitals can’t survive giving free care. The patient has to make choices.” Obamacare patient directed care taken to an extreme.
August 2014 - The Automat: Palliative Care in Uganda
Naggalama hospital is basically a compound of one story plastered brick buildings with corrugated roofs connected by covered sidewalks. Walking around the grounds, it has a very open airiness, families sitting on the grass preparing meals or doing laundry in the troughs provided. Children run everywhere, both pediatric patients and their supportive services of brothers, sisters, and cousins. Patients languish in beds if they are too sick, but you may find them sitting on the curb outside their ward, heplock IV in place, as if this were a fresh air sanitarium from the early 20th century America.
Observing the care at Naggalama is feels very much like going back in time. Limited technology, patchy knowledge, multi-bedded wards, and nurses in caps, it all seems so sepia toned.
In 1965, we drove our charcoal gray 1962 Rambler station wagon to “The World’s Fair” in New York City. While I don’t remember much about the fair itself, except a telephone with a television screen and some giant plaster green dinosaurs courtesy of Sinclair Oil, I remember staying at the Ambassador Hotel [1] and not sleeping due to the noise of the street below. But the highlight of the trip to me was a visit to “The Automat” where I put a nickel in the windowed wall and took out a slice of lemon meringue pie. This was my first experience of the concept of “self-serve” and I thought it was just swell.
In Uganda they still may not have self-serve frozen yogurt stores, or self-serve Korean grocers’ salad bars, or do it yourself Kinkos office machines, but in Uganda they have something we don’t have in the West. They have self-serve hospitals.
Controlled by the consumer, Ugandan hospitals have all the amenities of a US hospital without those bothersome labor costs. Most hospitals in the U.S. don’t have 24 hour dining services. Uganda does. In order to understand this concept, you first have to know that hospitals in Uganda require that every patient must have an “attendant” that stays with them at all times. In fact a patient will be refused admission if they can’t guarantee there will be someone to stay with them 24 hours a day during their hospitalization, not that there is a bed provided for your sitter. Nor a recliner, not even a plastic chair, but the concrete floor next to the sick person’s bed will be your lodging for the duration.
So you want your dinner at 2 a.m.? No problem. Your spouse or sister or auntie will prepare all your meals for you whenever you want, prepared on the floor just below the edge your bed so you can guarantee freshness. What American hospital can advertise that I ask you? Familiar foods served on your familiar plates from home, how comforting that must be.
Or sleeping on your own bed linens, changed whenever your relative is available, the epitome of “home away from home.” No need for a hospital laundry, or a costly hospital employee to make your bed. Your attendant will change your linens when you soil them at any time without having to find the call bell no matter how critically ill you are.
And medical care? No problem. Phototherapy is just a few steps away from your bed onto the lawn. And it can be combined with respiratory therapy; nothing beats some fresh air for those nasty HIV lung infections than sitting on a bench watching the other patients cough and sputter.
There’s even self-serve hygiene, with your very own wash basin brought from home from which to bathe, and a toilet only 65 feet down the hall. For the less ambulatory, a bucket brought from home stashed under the bed to spare the walk to the WC, though no curtains for privacy.
Need an x-ray? Just walk yourself over to the cashier, plunk down some Ugandan shillings and then walk over to radiology and get your x-ray handed to you in just a few minutes, after it has been hung out to dry in the sun first, of course.
Medications? No problem. Ugandan hospitals have figured that out as well. The nurse just leaves your medications at the bedside in little manila envelopes, with handwritten instructions on the envelope such as 1 x 3, or as we so cryptically would write in the US, one tab TID. And this includes pain pills for the patient to administer themselves prn, what we call Ugandan PCA. No need for those expensive pumps.
And let’s not forget your wake up call, the rooster standing next to your bed at 4:30 each morning.
Remember that the average hospitalization in the US is about $12,600, where the average bill, payable on receipt before they let you out the iron gate at Naggalama Hospital is about $16. Next time you feel your blood pressure spike when you open your bill from your local hospital, remember that Uganda is only an airplane trip away and Naggalama Hospital is there for you.
[1] The Ambassador Hotel was deservedly demolished the following year.