Home at the End: Navigating Care for a Dying Loved One in America

Insights from Dr. Andrea Sankar

Death is an inevitable part of life, yet it’s a topic most of us prefer to avoid. However, for many, the experience of caring for a dying loved one can be both incredibly challenging and profoundly rewarding. In a recent episode of Back in America, we had the privilege of speaking with Dr. Andrea Sankar, a professor of medical anthropology at Wayne State University and the author of Dying at Home: A Family Guide for Caregiving. Her insights, drawn from personal experience and extensive research, offer invaluable guidance for those navigating this difficult journey.

Personal Experience Shaping Professional Journey

Dr. Sankar’s interest in the topic of dying at home was deeply personal. She shared, “My specific interest in this case was when my sisters and I cared for our mother who was dying at home. And at that point, we were all young mothers with little children and full-time jobs.” This personal experience highlighted the overwhelming nature of home-based end-of-life care. “The reality of essentially creating a mini ICU in your home was pretty overwhelming,” she recalled. Despite the challenges, Dr. Sankar and her sisters managed, but she noted the lack of information available at the time. “There was very little information around to help us,” she said, emphasizing the importance of resources and support.

Cultural Perspectives on Death

One of the fascinating aspects Dr. Sankar discussed was the cultural differences in how people approach death. Reflecting on her early days in Hong Kong, she noted, “Where I was living, it wasn’t just nuns. There were a lot of lay women who were there. They were all single women who’d been part of an anti-marriage movement. And they all had urns underneath their bed. They bought all their material for the outfit that they would be cremated in.” This practice of preparing for death and integrating it into daily life was strikingly different from American attitudes. “In the U.S., a lot of times they don’t really think about it that much,” she observed, highlighting a cultural divide.

The Importance of Community and Support

Dr. Sankar underscored the significance of community support in caring for a dying loved one. She shared touching anecdotes from her research, such as neighbors who would help without being asked. “One couple who were caring for a two-year-old son who was dying said, ‘The neighbors just came into our house and took the dirty laundry every week and washed it and then gave it back to us clean.’” These acts of kindness and solidarity are essential. “People would take it upon themselves to say, ‘We can see you’re overwhelmed. We’re going to do this to help you. We’re just going to do it,’” she said.

Interactions and Joyful Moments

Despite the somber nature of end-of-life care, Dr. Sankar highlighted that it can also be filled with joy and normalcy. “People who are very social continue to have their friends visit. They’ll have cocktail parties in the room where the person is,” she explained. This approach helps the dying person remain part of their social world. “They can live while they’re dying. They can be part of the family, they can be part of their social world,” she emphasized. This integration into daily life can create memorable and even joyful moments.

Challenges and Realities

Dr. Sankar also addressed the realities and challenges that caregivers face, particularly the feelings of guilt when unable to fulfill a loved one’s wish to die at home. “Not everybody can do this. And that’s a really important message of our book,” she said. The demands of caregiving are immense, and assessing whether one has the necessary resources and support is crucial. “If you don’t have the resources, then the person who’s dying is going to be safer and their quality of life is going to be better if they are in an institution,” she advised.

Health Disparities in End-of-Life Care

Discussing racial disparities in home-based end-of-life care, Dr. Sankar acknowledged the existing health inequalities in the United States. However, she noted that hospice care, being a federally reimbursed program, is generally uniformly good. “When the actual care is delivered, it’s pretty uniformly good,” she said. The key issue is ensuring families have the resources needed to support home care.

Preparing for Death

Dr. Sankar emphasized the importance of preparation for both the dying person and their caregivers. “You need to make sure that whoever will care for you is not alone. That’s the most important thing,” she advised. Assigning a medical power of attorney and making clear decisions about end-of-life care are crucial steps. “The dying person needs to make all of those decisions clear before the situation happens,” she stressed.

Finding Peace and Leaving a Legacy

Leaving a meaningful legacy and finding peace in one’s final days are central themes in Dr. Sankar’s work. She noted, “The very fact of the family caring for somebody who’s dying is a legacy for the younger generation.” Addressing unresolved issues with friends and family, and participating in religious rituals, if applicable, are important steps. “Making sure that they’re ready to die” helps both the dying person and their loved ones find peace.

Acknowledging Caregivers

Dr. Sankar highlighted the importance of acknowledging the efforts of caregivers. “If they can acknowledge that they are aware that people are doing something momentous for them, it means so much to the people who live on afterwards,” she said. Recognizing the immense responsibility and effort involved in caregiving can provide comfort and validation to those undertaking this challenging role.

Caring for a dying loved one at home is an overwhelming yet deeply rewarding experience. Dr. Andrea Sankar’s insights offer valuable guidance for navigating this journey. From the importance of community support to the cultural perspectives on death, her experiences and research provide a comprehensive understanding of end-of-life care. As we reflect on these insights, we are reminded of compassion and support's profound impact during the final stages of life. Whether you are a caregiver, a healthcare professional, or someone interested in end-of-life care, Dr. Sankar’s wisdom is a source of comfort and inspiration.