By Maya Jane Bates, FRCGP, PhD
IAHPC Board Member & founder of the Tiyanjane clinic, Malawi
What words would you use to describe your work in palliative care?
Rewarding? Tough? Intense? Life-changing? These are a few of mine.
I had the privilege of working for 20 years with an amazing team of people at a Malawi hospital and in the community. Patients waited on concrete benches outside the Tiyanjane clinic, a small room at the hospital, in the early morning being briefed by Mrs. Magombo, the hospital’s first nurse to work in palliative care. She spoke about HIV prevention, nutrition, and why it was not a good idea to try to remove the irritant of unsightly, highly vascular Kaposi sarcoma lesions oneself. Meanwhile, Fanny boiled a kettle to prepare tea and buns, providing “a small something” for those coming from far away. That day, their money was spent on transport to come to the clinic. Mark and Harriet collected patient records from a cabinet as people came and wrote their name on the attendance list (a scrap of paper). Decisions were made about who would cover the wards and who would stay to assist patients at the clinic.
As the day went on, the sun grew hot, and the clinic room grew busy with the steady stream of clients referred each day. Tiyanjane clinic provided a rare confidential space for patients and their families in an often chaotic hospital. Wrapped in bright zithenje (African printed cloth) clothing, eyes expectant and tense, smiles (and, occasionally, tears) were shared as the clinic provided a confidential space to discuss anything from pain relief to wound care to preparing for a hospital patient’s return home. Feeding was always high on the list of priorities for families, anxious to provide adequate nutrition at home for someone too weak to sit up.
Palliative care in Malawi is enriched by a strong engagement with all things spiritual: from loud, long prayers literally shouted by pastors within the hospital grounds, to quiet words of encouragement delivered in difficult times. Although often referred to as “one of the poorest countries in the world,” the richness of community, faith, and human warmth is something many in so-called high resource countries sadly lack and for which many have a deep thirst.
But it is not always—in fact it is very rarely—possible to meet ALL the needs of patients and families we see, whose needs can be financial, spiritual, and can encompass resources that we provide as well as medical resources that we wish were available but are not.
In palliative care we connect with our patients at a time when they are facing pain, frailty and death. Holding that space both “for” and “with” them takes mental and emotional effort. We provide comfort through being present for others, sometimes in health systems which are themselves brutalized. This can take its toll.
Here, I offer two simple questions to ask your patients, and one encouragement to tell yourself as you go about your vital work today.
Ask your patients and/or their carers:
“What is your main concern?” While we cannot do something about everything we have documented in our comprehensive holistic summaries, we can take time to find out, acknowledge, and bear witness to what is bothering them the most. This helps guide us in our planning.
“Do you have any questions?” At the end of the task at hand—be it dressing a wound, changing a bed, preparing a meal or syringe driver, completing some vital transfer documentation or reviewing a drug chart—take time to ask this question. And then take the time to listen.
And an encouragement for yourself:
Do what you can! There are many limitations at the hospital where I worked. Window frames were broken and in the rainy season family caregivers crouched along the walls with their feet in puddles waiting for the wards’ visiting hours to begin. Regular supplies of medicines were a rarity. I wondered whether we could really call our hospital a place of healing.
I would find myself walking between in-patient consultations repeating to myself, “Do what you can, do what you can,” so as not to be crushed and rendered helpless by the mismatch between limited supply and overwhelming need.
The reasons we find ourselves overwhelmed are useful to discuss, as are possible remedies. That is done away from the frontline of patient care. If you’re having a tough day while providing care, whatever your situation, keep this phrase, “do what you can” in mind. I found its focus encouraging and useful. I hope that you might too.
Dr. Bates started the clinic in October 2003, worked there full time until 2013, then worked in a supervisory position until 2022. Read her bio.
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