Decades ago after completing my internship, I opted to stay on in the general surgery service at the type B hospital that I had come to call home. During that time I met a lovely lady on the female surgical ward that we will call Mary. The thing that struck me most about Mary was her smile. She was a beautiful woman in her late 30s, but when she smiled, her whole face lit up with a beauty that came from inside, and you felt like the sun came out just for you.

Sadly, Mary had quite suddenly become paralysed from the waist down which meant she was unable to walk, and had no voluntary control of her bladder and bowels. She had been admitted so that we could figure out what had caused this sudden paralysis.

Meanwhile, she was confined to bed and dependent on the nurses and ward assistants for many of the things that those of us with full mobility take for granted. As it turned out, Mary ultimately was diagnosed with breast cancer that had spread to her bones. The cancer in the bones of her spine had damaged her lower spinal cord and this was the cause of her inability to move.

In those days, the hospital where I worked had limited imaging and testing capacity, and Mary actually had to be transported by ambulance to Kingston Public Hospital to have that diagnosis confirmed. A couple weeks after Mary had been sent off to Kingston for further investigations, a pleasant-faced, sad-eyed gentleman appeared at the entrance to our female surgical ward and asked to speak to the doctor. I stepped up to speak to him and discovered he was Mary’s husband. I learned of her diagnosis from him.

The Kingston doctors said she would not recover and advised him to take her home. She had been given a prescription for morphine to treat the back pain she had developed while in Kingston, and the doctors had placed a urinary catheter to allow her to pass her urine freely. She was then discharged from the hospital, and advised to return to our hospital for follow-up, which would include ensuring she got her morphine prescription filled and her urinary catheter changed every four to six weeks.

He had brought her home and made her comfortable for the time being. His worry now, which was reflected in his eyes, was the pain she would have to endure, being transported in a car (these were the days before SUVs were commonplace) to the hospital. He was thinking ahead to the next four weeks’ time when she would need to have that catheter changed, and not wanting to put her through all that pain to bring her to our surgical clinic for that. He also had a more immediate concern of needing to refill the morphine prescription, which was an easier thing for me to help him with at that moment.

My heart went out to this soft-spoken man trying to cope with caring for his wife with very late stage breast cancer. Although I had managed patients with breast cancer during my internship period in surgery, this was the first time that I saw the non-medical consequences of our medical management of patients such as Mary. It was a very different experience to preparing a patient for mastectomy or administering intravenous chemotherapy which I had done before. There was suffering here that went beyond what I was accustomed to managing…and I was not sure how to help.

I took Mary’s husband’s phone number (a landline, as this was also in the days before cellphones), and asked him to give me a little time to talk to my seniors to see how we could help Mary without adding to her suffering. Thankfully, I worked with an amazing senior surgical resident and equally amazing nurses who truly cared about the patients we managed in the hospital. When I explained the situation and wondered out loud if we could go to her house and change the catheter for her, I immediately got permission from my resident to go with one of our nurses and effect the catheter change.

I informed Mary’s husband, and got the instructions to find their house…which, in the country parts, includes directives such as looking for the big mango tree, and the white stone wall. So when the time came, I set off for Mary’s house, accompanied by one of our surgical ward nurses armed with the needed paraphernalia to complete a catheter change. We had to drive on some red dirt roads but we found the house without trouble, and drove into the yard, where Mary’s husband was waiting for us.

We entered a spotless house, and were taken to the room where Mary now spent her days. It was a spacious, airy room, clean, uncluttered, and well lit from the big windows that also allowed her to see what was going on outside. Mary was in bed, propped on pillows and greeted us with that beautiful smile that I remembered from her time on our ward. She remembered both me and the nurse who accompanied me. I spoke with her for a while, did a quick physical exam, and ascertained that she was comfortable. She was not in any pain, and there was a sense of peace tinged with sadness about her, and it seemed to me that she had come to terms with her situation.

Her primary school age son and daughter hovered around in the doorway while I checked their mother. When I was finished, I asked if they would show me around outside. Thus we allowed nurse and patient a little privacy to get on with the task of removing the old urinary catheter and inserting the new one. The children took me outside, and we approached their father who was engaged in a woodwork project. As I spoke with him in their green garden, surrounded by trees, and clean country air, Mary’s husband told me that his greatest wish now was for her to be comfortable. They did not want any interventions that would cause more suffering than relief, and he planned to look after her until the end, to the best of his ability, and allow her to go when the time came.

This sharing occurred in the time it took a skilled, experienced nurse to change a lady’s catheter, which is to say, not very long. But the whole experience left an impact on me that continues to echo today. It was a celebration of love and life that could only come from having accepted the inevitability of death.

By the time Mary’s next catheter change was due, I had left that hospital, but I did organise for continued home visits to get the catheter changes done without additional stress on a family and a patient that was already dealing with so much.

I was no longer in Jamaica when Mary died, but I was moved beyond words when her husband called me long distance (in the days of ICAS numbers and all the expense of a long distance call) to let me know that she had died peacefully at home. He did not have to say how sad he was, I could hear it in his voice, but he did articulate how grateful he was that she had not suffered more than she needed to, and he thanked me for what I had done for her.

Mary died in early 1998. Since then I have encountered many other patients like Mary, with late stage breast cancer. As we observe breast cancer awareness this October, the message we tend to focus on is getting screened because cure is possible with an early diagnosis. But it is important to also highlight that even if breast cancer is diagnosed at later stages, palliative care can add life to the time one has left. It can relieve suffering and improve quality of life even when the quantity has been compromised.

As I recount and reflect on Mary’s story, I realise that what we had provided for her was palliative care. Palliative care can be defined as a response to suffering that is focused on seeing people rather than disease, and affirming life while also accepting death as a natural part of life instead of something to be avoided at all costs.

My encounter with Mary began with my seeing her first as a person: her radiant smile, not the paralysis. When her husband came to the door of the ward that day, what struck me was that he was not dwelling on the finality of the diagnosis, but on the present task of how to make his wife comfortable for whatever time she had left. The worry of how to get that catheter changed without a painful car ride was his suffering and in response to that suffering I set about finding a solution.

Changing a catheter was a straightforward medical procedure that could be done by a nurse with simple, readily available equipment. The ethos of our work team on the surgical ward allowed us to accommodate what was essentially a house call to effect that catheter change with no hassle for the family. House calls were not a service provided by the public hospital, yet moved as I was by Mary’s smile, and her husband’s plea for help, I was able to rally a small team of two people to provide a solution to a care challenge that honoured the patient’s wishes, and supported the family’s capacity to cope with a life limiting illness.

We did nothing to change the course of the cancer that would eventually take her body, but we had a huge impact on the people who were impacted by the disease (patient and her family) by allowing her to remain in the comfort of her home, surrounded by her loved ones, until her time on Earth was up. This is palliative care in practice in real life.

That very personal encounter with palliative care occurred in 1997, and was the result of an individual push to provide care beyond what was explicitly covered by our public health service. I know it was not sustained at that hospital after I moved, despite a very clear and present need.

Since that time, while I was engaged in my individual exploration of palliative care, things were also happening on a global scale. In December 2012, the United Nations General Assembly recognised the importance of universal health coverage (UHC), which is the idea that all people, regardless of income, age, and disease, should have access to a package of basic health services, provided by a national health system.

Then, in May 2014, the World Health Assembly, which is the governing and decision-making body of the World Health Organization (WHO), passed the first ever resolution that directly addressed palliative care. That resolution, known as WHA 67.19, spoke to the need to strengthen palliative care as a key component of full health care that spans the life of a human being. Jamaica, as a member state of the WHO, would have signed on to that resolution.

Since 2020, WHO has listed palliative care as one of the essential components of that UHC package. As a member state of WHO, Jamaica then has an obligation to provide access to the kind of care that my patient Mary got, to all who are in need of it.

My lived experience and the global views on palliative care seem to be converging. Today in our country, in the public health system, we do have access to institution based palliative care but it is in pockets that are limited to a few parishes. So a person diagnosed with late stage breast cancer has some options for government-funded palliative care. But there still is no formal system for home-based palliative care similar to what was provided decades ago as a special service for Mary.

In the private health services home-based care as well as hospital based interventions are more readily available if one can afford them. This does not meet the criteria of universal health coverage, which as a member state of the UN and WHO we should be aiming for. It is something we need to change. Good palliative care is in fact less expensive in monetary terms than aggressive and often futile interventions aimed at curing the incurable. But more importantly, the other unspoken cost of these often expensive medical treatments is the time and quality of life that patients lose… time to make final memories with their loved ones, energy to enjoy a meal, a sunset and to say goodbye on their own terms.

Remember that woodwork project that Mary’s husband was working on the day we made that first house call? He was in fact building with his own hands a coffin for his wife. The wood carefully selected, planed and polished to provide a fitting resting place for his wife’s remains. It was a final act of love that he was able to engage in because he did not have the burden of transporting his wife to a hospital to get simple care that could be provided at home. Imagine being able to provide the time and space for all patients with incurable illness, and their families to find that love and peace as they end their human journey. That is what palliative care has the potential to provide.