By Investigative Staff
In the modern landscape of healthcare, the phrase “Choose life” is often interpreted through the lens of medical intervention: more treatments, newer clinical trials, and the relentless pursuit of remission. However, a growing movement within the Jewish community—and the broader American public—is arguing that truly choosing life requires a courageous confrontation with its eventual end.
Rabbi Melanie Levav, BCC, LMSW, the Executive Director of the Shomer Collective, recently highlighted a startling discrepancy in American social behavior. While the vast majority of individuals acknowledge the importance of end-of-life planning, a fraction of that group actually takes the necessary steps to secure their legacy and medical wishes. This gap between intention and action creates a crisis of preparedness that organizations like Sharsheret and the Shomer Collective are now working to bridge.
Main Facts: The Statistical Divide in End-of-Life Literacy
The central tension in contemporary end-of-life care is not a lack of awareness, but a paralysis of action. According to data cited by Rabbi Levav, 92% of Americans believe it is vital to discuss their wishes for end-of-life care with their families. This overwhelming consensus suggests that, intellectually, the public understands the value of advance directives, wills, and medical proxies.
However, the reality on the ground tells a different story. Only about one-third (33%) of adults in the United States have actually engaged in these conversations or documented their wishes. This "preparedness gap" often leads to traumatic decision-making for family members during medical crises, where the burden of choice falls on grieving relatives who may not know what their loved one would have wanted.
For organizations like Sharsheret—a national non-profit supporting Jewish women and families facing breast and ovarian cancer—this issue is particularly acute. For a patient facing a life-altering diagnosis, the "D-words" (death and dying) are no longer abstract concepts; they are immediate, looming shadows. Yet, the research suggests that the best time to address these concerns is long before a diagnosis ever occurs.
Chronological Perspective: From Wellness to Diagnosis and Beyond
The journey of end-of-life planning is best viewed as a continuum rather than a reaction to a crisis. Experts categorize the timeline of this process into three distinct phases:
1. The Pre-Diagnosis Phase (The Ideal Window)
This is the period when an individual is healthy and under no immediate medical duress. In this phase, conversations about mortality are philosophical and logistical. For Meredith L., a beneficiary of both Sharsheret and Shomer Collective support, this phase was crucial. Long before her cancer diagnosis, she and her husband, Ben, had already discussed wills and medical decision-making.
“I was thankful that a lot of basic things… were already something that Ben and I spoke about,” Meredith noted. By handling the "business of death" during a time of health, she was able to focus entirely on her treatment and recovery once she became ill, rather than being buried under legal and ethical paperwork.
2. The Point of Diagnosis (The Crisis Shift)
When a serious illness like cancer enters the frame, the psychological landscape shifts. The focus naturally moves toward "choosing life" through treatment options and self-care. However, if the foundation of planning was not laid in the first phase, the diagnosis introduces a secondary layer of stress. Patients are often forced to make complex legal and spiritual decisions while simultaneously processing the trauma of their illness.
3. The Living-with-Illness Phase
Post-diagnosis, "choosing life" takes on a more intentional meaning. It involves navigating the medical system with a clear understanding of one’s values. This is where support networks become vital, guiding patients through the intersection of medical necessity and personal heritage.
Supporting Data: Jewish Wisdom and the Theology of Preparedness
The reluctance to discuss death is often rooted in a cultural superstition that speaking of mortality might somehow invite it. However, Jewish tradition offers a counter-narrative that encourages active engagement with the reality of the end.
Rabbi Levav points to the Talmud, specifically a teaching by Rabbi Eliezer, who famously instructed his students to "repent one day before you die." When his students logically asked how one could know the date of their death, the Rabbi’s point was made clear: one should live every day in a state of preparedness.
This theological framework serves as a precursor to modern "death literacy." By acknowledging that tomorrow is not guaranteed, individuals are liberated to live more intentionally today. In the Jewish context, this involves several traditional components that enrich the planning process:
- The Ethical Will (Zava’ah): Unlike a legal will that distributes property, an ethical will passes on values, life lessons, and hopes for the future.
- Kavod HaMet (Honoring the Dead): Ensuring that one’s final arrangements align with Jewish law and personal beliefs.
- Nichum Aveilim (Comforting Mourners): By planning ahead, the individual performs a final act of kindness for their family, sparing them the agony of uncertainty during the mourning period.
Official Responses: Meeting Patients "Where They Are"
The partnership between Sharsheret and the Shomer Collective represents a holistic approach to patient care that combines medical advocacy with spiritual and logistical support.
In her official capacity as Executive Director of the Shomer Collective, Rabbi Levav emphasizes that the goal is not to dwell on death, but to "normalize talking about mortality while choosing life." She argues that expressing wishes for how one wants to live—even in the face of death—is a profound gift to caregivers.
Meredith L.’s testimony underscores the efficacy of this collaborative model. She highlighted that Sharsheret "meets you where you’re at." For patients who have not yet established long-term plans, the organization provides a roadmap that respects both the "medical side" and the "Jewish heritage side."
This dual focus is essential. Many Jewish patients face unique cultural and religious questions regarding end-of-life care, such as the use of hospice, the definition of brain death, or the requirements of ritual burial. Having a support system that understands these nuances provides a level of reassurance that standard medical social work may lack.
Implications: The Future of Death Literacy in a Medicalized World
The implications of Rabbi Levav’s message extend far beyond the Jewish community. As medical technology continues to advance, the "end of life" has become increasingly medicalized and prolonged. Without clear, documented wishes, the default path is often an escalating series of interventions that may not align with a patient’s quality-of-life goals.
The Psychological Benefit of Control
Studies in palliative care suggest that patients who have completed advance directives experience lower levels of anxiety. There is a psychological "unburdening" that occurs when an individual takes agency over their final chapter. By "taking care of the business of death while we are most alive," as Levav puts it, individuals create a vacuum where only living remains.
Reducing the Burden on Caregivers
One of the most significant implications of the 33% planning rate is the secondary trauma inflicted on survivors. When a patient cannot speak for themselves and has left no instructions, family members often experience "decisional regret" and long-term guilt. Increasing the rate of EOL conversations is, therefore, a public health necessity that protects the mental health of the next generation.
A Shift in Cultural Narrative
The work of the Shomer Collective and Sharsheret suggests a shift toward a more "death-positive" culture within religious frameworks. By framing end-of-life planning as an act of chesed (loving-kindness) and a fulfillment of the commandment to "choose life," these organizations are removing the taboo surrounding the "D-words."
Conclusion: A Call to Action
The fundamental question posed by Rabbi Levav remains: "What matters most to you, and what are you going to do about it today?"
The evidence suggests that the most profound way to honor life is to acknowledge its limits. Whether one is currently facing a diagnosis or is in a season of perfect health, the act of planning is an act of love. It ensures that when the time comes, the focus can remain on the person and their legacy, rather than on legal disputes or medical uncertainty.
By integrating ancient Jewish wisdom with modern advocacy, the Shomer Collective and Sharsheret are providing a blueprint for a more compassionate, prepared, and intentional society—one where "choosing life" means embracing the whole of the human experience, from the first breath to the last.
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