‘Please let me die at home’

Islamabad: Patients approaching the end of life should have a say in their treatment decisions, as well as their preferred place of care and ceiling of treatment. Respecting their wishes and preferences till the very end, provisions should be made for adequate management of their symptoms so that they can peacefully die at home in the company of their family and loved ones.

Talking exclusively to ‘The News’ here on Saturday, palliative care consultant at Shifa International Hospital Dr. Aqdas Kazi expressed these views while sharing the story of one of her cancer patients for whom all treatment options had been exhausted, making her a candidate for supportive care and symptom management so that she could make the most of whatever time she was left with.

“She was in her mid-forties. The Oncology team referred her to the Palliative Care Department after she had undergone multiple lines of chemotherapy for Metastatic Breast Cancer. She knew that the cancer had spread, and the goals of care had shifted from curative to symptom management. She also knew that time was short,” Dr. Aqdas recollected.

Through Telemedicine, Dr. Aqdas had her first meeting with the patient as she was reluctant to visit the hospital due to COVID-19. “She came across as a resilient, clear-headed person who knew what she wanted. Her only wish was that I support her to stay home with her children for the duration and let her die at home. She had a supportive husband who was willing to help her achieve this goal,” she shared.

“Fortunately, the hospital where I work facilitates patients who are approaching the end of life, in the community. We arranged anticipatory medications for home-based management of symptoms of pain, agitation, nausea, vomiting, and respiratory secretions, with nursing support for administration of these medications as required,” Dr. Aqdas said.

The patient did not want a nasogastric (NG) tube inserted for nutrition and hydration, preferring whatever little she could manage by mouth. Dr. Aqdas fully supported her, knowing well that this would only prolong her misery and the burden would far exceed the benefit. Over the next week, she deteriorated slowly, and eventually died peacefully at home with her family by her side.

“As the primary consultant looking after her, I got a thank you note from her husband, expressing gratitude for the compassionate, patient-focused care given to his wife, respecting her wishes and preferences till the end,” Dr. Aqdas recalled.

On reflection, the palliative care specialist thought: “Why do we not discuss death and dying? Why do we not talk about advance care planning and preferred place of care? Why can’t we have open and honest conversations between patients, caregivers, and healthcare professionals, exploring patients’ wishes?” Indeed, lack of public awareness on the subject makes this journey a long and arduous one.

Patients who want to be looked after at home towards the end of their life journey should be allowed to avail home-based, nurse-led, patient-focused care supervised by a palliative care team. “At Shifa International, we are very fortunate to have a robust E-Shifa programme with doctors and nurses, who provide care to patients in the community and who are directly supervised and trained by myself,” Dr. Aqdas disclosed.

Dr. Aqdas believes that there can be other resources, volunteers, and family caregivers who can be taught about personal care, safe handling and transfer, and basic principles of symptom management and patient support. Family physicians who have known the patient and already have a trust-based relationship with a patient and their families, can also deliver end-of-life care to patients in their homes. The goal is to improve the quality of care for dying patients and to allow them to be at their preferred place of care.