End of Life Planning Begins with Living & Celebrating Life
By Roshni Kavate, RN
Introducing myself as a palliative care nurse draws either a cloud of discomfort or a wave of non-stop stories. Some people don’t know what to say when I share my work with people navigating the end of their lives. And when they do there’s sadness, a yearning for the stories to be heard and spoken, and a longing for their experiences to be validated. Open discussions about death and dying in the U.S. are rare, especially in immigrant communities. As a first generation immigrant myself, and working with a wide range of families from around the world, it’s not that people are death-averse, it’s the medicalized nature of these conversations.
Conversations are usually initiated in a hospital or doctor’s office. Families are rushed to make important decisions, and most often those choices are framed as what should be stopped. When patients walked into our meetings, many were undergoing treatments for cancer, some had complex chronic conditions that made their life expectancy shorter, and for many aging brought a myriad of challenges to the forefront. When we focus on the end of life and dying, we sometimes forget the fullness and vibrancy of lives our loved ones have lived.
My recommendation for starting these deeply important, but challenging conversations is to start with our origin stories. Maybe you are a child with aging parents and starting to think about their end of life, or maybe you are wondering about your own life. Death and dying happens in many forms, but so does living. Living is an active expression of our identities, cultures, spiritual beliefs, and values. So to think about the end, we should think about how we live. A good place to start these conversations to ask about how our grandparents died, who cared for them, how did we mourn, what was our own birth like? What was our parent’s childhood like? What has it been like for them to get older? How are their values and beliefs changing? And there is no set time for these conversations. They can happen over years and months in small chunks of time. It’s best when people are fairly healthy and independent so we can fully imagine what makes a good life for us, what would be acceptable and unacceptable in terms of medical care and living circumstances as we transition through our life stages.
During the pandemic, I have started asking my parents to tell me the stories they want me to remember about them and their families. We talk about favorite recipes, foods and holidays, helping each other remember times past, and taking a first step toward documenting and recording this wisdom. It’s in this rich discussion that we all have felt comfortable to share that we miss the family members that are no longer with us, and that we will be sad and heartbroken when our parents are gone. These are moments we can ask our family members how they would like to be cared for when they may become slower, weaker, and their medical conditions more complicated to manage.
I recognize that I can counsel others to complete an advanced care directive or decide on a decision maker. But for many families the documentation is deeply frightening and antithesis to their culture. Birth and death happen in the community, families tend to each other and many elders within our community lend their wisdom and support while making difficult decisions. The American medical system does not operate with this understanding. The values of the medical system reflect the dominant White culture values. It places supremacy on the individualistic belief of “I” as a patient: ‘I want to be independent, and I will dictate how I will die, and I will think about it many years in advance so i am not a burden on anyone.’
This is in direct contrast to how immigrant communities and communities of color operate. Our parents don’t consider themselves a burden, but see caring for each other as how we love each other. We make decisions together, we don’t necessarily put our values and wishes into writing because we know our loved ones will take care of us like generations before us have. These cultural beliefs can sometimes clash with the medical system, while families living all over the world means we are not able to care for our parents the way generations before did.
Talking and planning for the end of life does not have to mean we have to forgo what we believe in and stop practicing our culture. If anything, it’s an invitation to start sharing how we want to celebrate and preserve our cultural practices in the last moments of life. They can be death rituals, they can be the foods we want to eat, they can be trips we want to take, or the spiritual practices we want to include. Dying is an extension of how we live and I invite families to open up to having these soulful and sometimes difficult conversations. This dialogue helps with decision making and planning so we can continue to live, even in the last moments of our life. And it is a blueprint for how we want to be remembered and alive in the memories of our loved ones when we are gone.
Roshni Kavate is the Founder and Creative Director of Cardamom and Kavate, a wellness platform dedicated to reclaiming nourishing practices rooted in ancestral wisdom for collective liberation. She believes grief is a portal to wholeness. Through rituals and storytelling, we can reconnect to our origins and be our wild selves. Roshni’s early childhood was marked by the grief her mother and ancestors experienced by living on the margins based on gender and caste. As a Palliative Care Nurse in the US, Roshni witnessed racialized trauma and its lasting impact on the health and wellness of communities of color. Combining her interest in food, wellness and advocacy she has launched Cardamom and Kavate to reimagine what it means to rebirth ourselves, embody our freedom.