A good death

TAUREEF MOHAMMED

LISA (not her real name) was always full of life: vibrant, colourful, healthy. A mother of five, she lost her husband when he was just 56 years old. While she silently grieved, life continued. Dressed in colourful saris, she danced at her children’s weddings. She tended to her home, decorated with pink bougainvillea. With her lilting voice and help from the wind chimes hanging among potted plants in the open, covered driveway, she welcomed everyone.

Then, in November 2017, the headaches and dizziness started. Walking became a task; she could not balance. Two weeks passed and the symptoms were still there. Having no prior medical issues other than the occasional infectious illness that lasted a few days, she realised this was different. So she visited a doctor and a CT scan gave the answer: a brain tumour.

But, as it is with many things in medicine, the answer resulted in more questions: What type of tumour? Benign or malignant? Is it curative? Had it spread? If it is not curative, how long again and how can that time be made longer?

She had entered the kingdom of the sick. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag wrote in Illness as Metaphor.

And so, she had more CT scans: the cancer had likely started in the lungs and spread to the rest of her body including her brain. She had prescriptions to fill: steroids, pain killers, antiemetics. She had appointments to keep: oncologist, neurosurgeon, radiology. She had brain surgery. She had chemotherapy. She had radiation.

It was a roller coaster: every treatment provided temporary relief before another nauseating drop. But with the support of her family and medical teams she persisted.

“She always had a positive spirit and was never a person to complain. At nights she would even try to manage on her own, not wanting to inconvenience anybody,” her youngest child and main caregiver said.

But in late 2018, her body started to plead: it had had enough. Her bones pained; she coughed up blood, stomached very little, lost weight and became weaker and weaker.

Medicine’s algorithm – test, diagnose, treat – was not delivering the quality of life she had hoped for. And while before there was some comfort in knowing the rapidly multiplying cancer cells invading her body were being killed from all different directions by a multitude of advanced, scientifically-proven therapies, now that these treatments appeared to be failing, the uncomfortable question – what is next? – faced her.

“At this point, you start questioning. Is there something more that can be done? Is there a cure abroad? You even start thinking about things like CBD oil and herbal remedies.”

But she was prepared to grapple with reality.

Earlier in the year, a doctor, who she had grown to trust, suggested a referral to palliative care at Caura Hospital and she did not hesitate.

With guidance from the team there, Lisa and her family had already started the difficult conversations, exploring the diagnosis, treatments and possibilities.

“Now, it was about making the decision whether or not she was going to continue with life-prolonging treatment. We saw with our own eyes how her condition was deteriorating.”

After a series of palliative care sessions, she made the first step, her son explained, to having a good death: acceptance. She was dying.

“Getting the information that the cancer was at an advanced stage, that she had a terminal illness and fully understanding this made us able to plan for her to be comfortable and have a good death.”

Her eldest son returned from Ireland to spend Christmas at home. Music and dance filled her house once again. She cracked jokes, lifted everyone’s spirits, and all of it was recorded on camera.

In March 2019, she was admitted to the Palliative Care Unit at Caura Hospital. She spent her last days in the Hibiscus Suite, breathing the clean, crisp Northern Range air. On good days, her children wheeled her bed into the unit’s garden: the brilliant yellow buttercups and trickling water fountain reminded her: life was not over yet.

After two weeks at Caura, she died. “When she took her last breath, a wind passed through the entire hospital, and it felt special. It brought closure.”

She was dressed in a red and gold sari for her funeral – she had chosen it.

In the end, Lisa died how she lived: full of life.

Taureef Mohammed is a graduate of UWI and a geriatric medicine fellow at Western University, Canada