Mr. Tolani never fully recovered from an infection he contracted sixteen months prior to his death. He progressively declined in spite of the excellent care he received from hospitals, doctors, nurses, and therapists. “We – his family – knew his wishes for medical treatment and end of life,” Sunil Tolani told me, “and the doctors and nurses treated us as peers, partners, confidants, and most importantly, as our Dad’s voice. Dad was at peace and in comfort knowing we were his safe haven. His being in hospice at home meant peace, love, and complete care.” Sunil paused, remembering, “a week before Father’s Day, Dad smiled weakly as I gave him a few teaspoons of tea while praying he would be with me for one more Father’s Day. We are smiling today, secure in the knowledge that we did our best for Dad, and he knew that.” I asked Sunil how the decision was made for his father to transition from curative to hospice care. “The family decided,” he responded, “we had all talked about it.”
Death touches us all. However, most people find end-of-life discussions uncomfortable. A 2012 California Health Care Foundation survey on communicating end-of-life wishes showed 56% of those polled had not discussed their preferences with the ones they would want to make decisions on their behalf. Two out of three Asians had not done so. When asked why, the four most common answers were “I have too many things to worry about right now,” “I don’t want to think about death and dying,” “my loved one does not want to talk about death,” and “it’s a long way off.” Only 38% of respondents had heard of an Advance Directive. A mere 4% of all 2010 deaths in hospice care were Asian.
Why do Indians and South Asians find end-of-life conversations especially difficult? It’s not that we don’t want “a good death.” Sunil Tolani describes us as a “prosperous, intelligent, educated but superstitious community.” Dr. Neelu Mehra, Chief of Palliative Care at Kaiser Permanente in Redwood City, says the Indian community in general believes talking about death will make it happen sooner. “It’s an ominous sign,” she says, “that’s one of the reasons they do not want to fill out Advance Directives or talk about future planning.” Consequently, Indians are often ill-prepared and traumatized when thrust into making difficult medical decisions. “I know many adult Indian Americans, who have elderly parents come to live with them and they find that they cannot raise this topic because it’s a taboo to talk about death,” she adds This can leave doctors frustrated and unable to meaningfully discuss medical options with patients and families. Many are used to being told by doctors in India what to do and unable to respond when asked to make decisions. Some suspect doctors of withholding information or not telling the whole story. “Getting Indian families to agree to end-of-life discussions can be a monumental task,” Dr. Mehra says, “we Indians are very comfortable accepting what comes our way. We accept death when it comes; that’s black and white. However, we are very uncomfortable with the shades of gray in between; we don’t know how to make difficult choices, and don’t know how to support loved ones so they do not suffer. We are hesitant to learn about and make choices that could alleviate suffering.”
Dr. VJ Periyakoil’s course on Health and Healthcare of Asian Indian American Adults – part of Stanford University School of Medicine’s Ethnogeriatrics Program – sheds further light on complexities that shape attitudes of traditional Asian Indian families: Many have a hierarchy of decision-makers, usually beginning with the oldest son as the primary contact and disseminator of information. Families may be reluctant to discuss personal and emotional issues with health-care providers, because these are considered very private and traditionally not shared with anyone other than those in the immediate household. Some families may request that the physician withhold information from their loved one who is ill, concerned that the truth about the illness may negate the will to live. Thus, “Doctor saab, please don’t tell Dada-ji that he has cancer. He will just give up and die,” may not be an uncommon request from a Hindu American family. Despite complete understanding of biological causes of illness, it is often believed that the illness is caused by Karma, the law of behavior and consequences in which actions of past life affect the circumstances in which one is born and lives in this life. Physicians may be perceived as incompetent if they sound unsure, or ask the patient or family member for their opinion. Some studies have shown an inverse relationship between the strength of religious and traditional beliefs and the presence of a completed advance care directive. Susan Thrane also points to major beliefs of Hindus, including family and community interconnectedness, Karma, and reincarnation as drivers of attitudes and behaviors.
Dr. Mehra urges us as a community to “have more upstream conversations about end of life,” and get people to understand that in some instances more treatment is not necessarily better; that choices have to be made, so that when the time comes to make decisions, “they won’t find themselves in a firefighting mode. We have a huge opportunity to build awareness and educate South Asians around this issue and overcome the attitudinal barrier that says, ‘I don’t want to talk about it; talking about it means that I’m going to die sooner.’ Having a fire extinguisher at home doesn’t mean that your house will burn down,” she says, “it just means that you are better prepared! You know what to do, and you have the tools to do it.” Ellen Goodman the Pulitzer Prize winning journalist and co-founder of The Conversation Project sums up the impact of putting off advance-care planning this way: “It’s always too soon until it’s too late!”
“The tipping point for me was when my father-in-law unexpectedly fell ill and went into a coma,” a friend of mine recently confided. “My husband and I were anguished over making very difficult decisions about his medical care because he had never told us what he wanted. The very next week, I sat down with my own parents and told them we had to have this conversation. I never want to be in this position again!” Dr. Nicholas Jauregui, the Palliative Care specialist who cared for Arjan Tolani spoke at his memorial service. ““Often families have a very difficult time making the transition from trying to fix all the medical problems that the patient has to acceptancing that medical technology cannot fix them. This requires them to focus instead on what good can be done: allowing the patient to have a high quality of life at home in their last days.”
Arjan Tolani’s last living act – dying – is his undying gift to the rest of us: a gentle reminder that we too need to think about and plan for the end of our lives. Decide what you want for yourself at the end of your life, share this with your family and loved ones, and fill out an Advance Directive. In the words of Lucy Kalanithi, doing this is “a really soulful thing and an act of love.”
With sincere thanks to Carlos Quintero at Unsplash for the use of his beautiful photograph.
Sukham Blog – This is a monthly column focused on health and wellbeing.
Mukund Acharya is a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South-Asian community. Sukham provides information, and access to resources on matters related to health and well-being, aging, life’s transitions including serious illness, palliative and hospice care, death in the family and bereavement. If you feel overcome by a crisis and are overwhelmed by Google searches, Sukham can provide curated resource help. To find out more, visit https://www.sukham.org, or contact the author at email@example.com.