About the Author: Dr Seema Rao is an Associate Director, Education & Research, at the Bangalore Hospice Trust – Karunashraya. She is also an Honorary Tutor, School of Medicine, Cardiff (UK); and a Member of Quality and Clinical Advisory Board, PALCARE, Mumbai.
Dr Rao is an avid reader and also a poet.
Nina (name changed) was a feisty 68-year-old lady with metastatic leiomyosarcoma of the uterus. For 16 years, she underwent multiple surgeries followed by sessions of chemotherapy and radiotherapy to get the disease under control. With all disease-directed therapy exhausted, Nina was advised comfort care. When she came to the hospice, she was bed-bound and writhing in pain. Once we got her pain under control, we discussed further treatment plans with Nina and her 72-year-old husband, Sharad (name changed). On the first visit, Nina was unwilling to discuss anything besides pain control. Subsequent visits revealed that Nina was aware that her disease was incurable but wanted management of any complications as aggressively as possible to live as long as possible. She wanted to ‘stay alive at all costs’ and ‘never give up.’ The words ‘fighting spirit’, ‘denial’, ‘unrealistic expectations’, etc. swirled in my brain as I tried to explore Nina’s goals of care.
Nina’s final journey was punctuated with multiple hospital admissions; one such admission required ICU care with ventilatory support for sepsis-induced acute respiratory failure. This precipitated discussions regarding foregoing life-sustaining treatment (FLST). As I discussed the concepts of a good death and advance directives with the couple, should another such episode occur, Nina was very clear about her choices. She wanted aggressive management till the very end. The hospital ICU was where she wanted to be. Her concept of a good death, she said, was about ‘fighting death’ till the very end. Sharad though willing for hospice care, chose to support and respect his wife’s choices.
As Nina breathed her last in the ICU, I was besieged with doubts. The maxim, The Golden Rule, ‘Do unto others as you would have them do unto you’ had me in a quandary. As a palliative care professional, I know that home is where most people want to be when they die, with loved ones by their side. As an individual, I would make the same choice as well. Nina’s choices intrigued and puzzled me. I discussed this with my colleagues as well. With compassionate care being the norm, I put myself in her shoes, trying to understand the reasons behind her choices.
- Was there depression?
- Was it denial?
Did not look like it.
- Was there spiritual distress?
Yes, there was. We did try to support her in that journey
- Did she have the decision-making ability?
- Should we have involved her next of kin, her husband, in the decision-making?
Sharad had left the choices with his wife
- Was she at peace?
She was composed and firm in her choices till the end
By aligning myself with their choices, did I do right by Nina and Sharad, who had trusted me to provide care during the most difficult journey of their life?
The Golden Rule implies that I should treat others the same way I wish to be treated myself. In doing so, do I risk becoming self-centric? Is it ethically and morally appropriate to let my own values, preferences, and beliefs influence and impact the decision-making of my patients? Is it right to judge another with my own yardstick? As I was pondering over these questions, I chanced upon the editorial in the Journal of Palliative Medicine, “The Platinum Rule: A New Standard for Person-Centered Care,” which I read with great interest. It talks about a care tenor that is mindful of the choices and preferences of the patient; a care tenor that affirms personhood. The Platinum Rule states, “Do unto others as they would want done unto themselves.”
I asked myself, “What did I need to know about Nina as an individual and Nina and Sharad as a couple to take the best care of them?” Nina’s resilience and coherence emerged from her ‘fighting spirit’, which she hoped to sustain till the end. She equated foregoing life-sustaining treatment to ‘giving up.’ Was there an unrealistic expectation? Maybe yes, maybe not. She was not demanding any disease-directed therapy, but she was also uncomfortable with FLST. She experienced comfort and felt reassured in knowing that the medical team would be by her side till the end. The choice was inherently hers, and Sharad supported her choices till the end. And I decided to accompany them on that journey.
Nina was an outlier. Her disease, her life story, and her choices reiterated this till the end. Treating patients and families the way they want to be treated should be the norm in end-of-life care, more so when complex decisions have to be made amidst uncertainties; medical, cultural, and individual. The Platinum Rule provides the roadmap for genuinely person-centered care.