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The Notion of a “Good Death”
Defining a “Good Death” is a subjective yet significant aspect of end-of-life care. As Ann Richardson aptly puts it, “We cannot change the outcome, but we can affect the journey.” This concept is particularly poignant in the case of Raj, a young unmarried man, whose journey towards the end of life was marked by confusion, distress, and a struggle for understanding.
Encountering Raj in our clinic, we observed a profound emotional and physical toll on this once vibrant individual. Previously active with his own music DJ group and a vibrant social life, Raj’s world shifted as his illness progressed. Struggling with false hope, he grappled with the harsh reality that his lower oesophagus was affected, leading to an inability to socialize freely. His emotional turmoil manifested in anger and agitation, impacting both family and friends, all while caregivers silently bore the weight of his suffering. Raj’s awareness of a swelling or block in his lower oesophagus fuelled hope for a return to normalcy post-chemotherapy, although this hope proved false. His family, aware of his oesophageal cancer’s lack of response to chemotherapy and its spread to vital organs, faced the challenge of accepting the disease’s progress and prognosis. The absence of Raj’s mother in discussions raised concerns, with caregivers evading the issue by stating she was a heart patient.
Recognizing the complexity of Raj’s situation, a multidisciplinary team, including palliative care doctors, oncologists, a gastroenterology consultant, an ultrasonography-guided interventionist doctor, nurses, and a psychologist, collaborated to enhance Raj’s quality of life. Amidst his bouts of depression and expressed desire to return home, the team faced the challenging task of addressing his complaints about the disease and his yearning to be free from it. Due to the worsening of Raj’s condition, we successfully persuaded the caregivers to bring in his mother. The reunion between mother and son was indescribably touching, an experience that words alone cannot capture. In the calming presence of his mother, Raj’s emotional distress subsided. After the emotional outburst had settled, we carefully initiated discussions to alleviate the distress of the entire family.
We aimed to communicate the difficult news and address the ethical considerations of autonomy. However, the family resisted involving Raj in the discussion. As part of End-of-Life Care (EOLC), we eventually had to broach the sensitive topics of the advance medical directive and “Do Not Resuscitate” (DNR) with his parents. It slowly dawned on them that Raj was on the final path of his life. The most challenging aspects were bringing in the mother, delivering the difficult news, and navigating the ethical considerations. Despite initial resistance, Raj’s mother was receptive, and the gravity of the situation gradually sank in for Raj. At the request of his mother, their priest performed the Christian ritual of Holy Communion at Raj’s bedside, bringing him solace and aiding his acceptance of his disease. Regrettably, he passed away within a day after this event.
Roles and Reflections of the Palliative Care Team
The palliative care team plays a crucial role in alleviating distress and suffering for patients and their families. Our team members strongly advocated for initiating End-of-Life Care (EOLC) discussions with Raj and his family, focusing on defining treatment goals, addressing advance medical directives, and involving them in decision-making. Upon reflection, we recognized the importance of starting the EOLC communication process earlier. Early initiation could have facilitated more helpful discussions and provided relief for everyone involved. Convincing Raj’s father and sister for his mother’s presence earlier might have aided Raj in coming to terms with his disease and prognosis sooner, allowing him to enjoy more time with loved ones and leave behind a meaningful legacy. Although the initiation was belated, the presence of Raj’s mother eased his distress, fulfilling his last wishes for Holy Communion, and we hope he experienced a ‘Good Death.’
Understanding End-of-Life Rights
Furthermore, it is crucial for individuals to be aware of their rights regarding end-of-life decisions. The Indian Supreme Court’s recent landmark judgment on March 9, 2018, has enabled Advance Medical Directives (AMD), allowing adults of sound mind to leave directives regarding the end-of-life treatment they wish to receive. Understanding these rights is vital for informed decision-making in end-of-life care.
Dr.Asoke Chackalackal Mathew
Consultant Palliative Physician
Chennai Bangalore Marthoma Diocesan Palliative Care Services.
Anpin Sparsaham (Madras Marthoma Syrian Church- Chetpet)
SEARCH FOUNDATION- Chennai.
Lakshmi Pain & Palliative Care Trust – Chennai