Listen to this story:
When Joey left his hometown to attend a prestigious out-of-state university, his mother was in hospice care for a rare sarcoma, a terminal cancer affecting the body’s soft tissues and bones. Two weeks into his freshman year, her nurses warned the family that Joey’s mother was in the final days of her life. Joey returned home, and his mother died the next day.
Joey’s mom had encouraged him to go to college, find community, and engage academically and socially with his campus. In the wake of her death, he no longer knew what that looked like. Joey went back to school one week after losing his mother, uncertain of his options and fearing the academic consequences of missing classes. When he emailed a dean at his university to explain his weeklong absence, an administrative assistant wrote back, asking Joey to provide a copy of his mother’s obituary.
“I didn’t want to dig myself into a deep hole in my first semester,” Joey says. “My university didn’t really know what to do with me, so I went back after a week. That’s when things really started to go downhill.” He describes feeling “indirectly rushed” to return to campus, having no knowledge of the university’s academic accommodations or leave policies. No one from his university’s administration reached out to make Joey aware of his options for support in or out of the classroom. He did not know until his second semester, after months of depression and isolation had taken a toll on his transcript, that he could have been graded on a Pass/Fail basis, allowing him to proceed with a clean slate.
“My grades were very poor,” he recalls. “I had no study habits whatsoever. Seeing my GPA, seeing that it didn’t reflect the kind of student I am, it just made me more depressed. And then socially, it also took a huge toll. I was living in my dorm room most of the time.” Watching his grades drop over the course of his first semester, Joey says, compounded the cycle of anxiety, overwhelm, and pain—but what choice did he have? Without clarity on his university’s policies on grief and bereavement, Joey believed his only option was to keep going, soldiering on through the daily slog of academia, held to the same standard as his peers.
Death is a sensitive subject even for family and close friends, often leaving us at a loss for words, choosing to say nothing for fear of saying the wrong thing—so how should a college or university respond when a student loses a loved one? That question, at once ethical and practical, is the driving force behind UGrieve, a new initiative by the Parmenter Foundation designed to help colleges support students as they navigate the loss of a loved one while balancing academic and social commitments at a time when they may be living away from home for the first time.
Established in 1949 as a provider of medical care in MetroWest Massachusetts, the Parmenter Foundation offers end-of-life and bereavement programs, resources and education, as well as grant funding for other nonprofits that provide services such as grief support groups for all ages, guidance for educators, and hospice care. The foundation launched UGrieve with interviews of three college students who describe feeling isolated, disoriented, and unsupported while grieving on campus.
"Our understanding, based on anecdotes from bereaved students, parents, and also counselors and administrators, is that higher education institutions do not have systems, policies or protocols in place to support students who have experienced a death in their family,” says Angela Crocker, Executive Director of the Parmenter Foundation. “It seems colleges and universities can be accommodating to students who are grieving, but only if the students know what to ask for and whom to ask."
The confusion and ambiguity that accompanies students reentering campus life after losing a loved one is an additional stressor for grieving families. “We’ve talked to moms who have lost a husband who say, ‘I'm grieving. I'm in shock. And then my son needs to go back to school, and I feel like I'm sending him into a black hole, and nobody's looking out for him,’” says Jennifer Siegal, Communications and Programs Manager at the Parmenter Foundation.
The fear of sending a student back into a “black hole” of grief and bereavement protocol is far from unfounded, as Joey’s experience lays bare. Colleges tend to be pro-active only when a death (usually of a student) occurs on campus, assuming that what happens at home falls outside their institutional responsibility. As a result, according to Crocker, bereaved students are not only emotionally gutted, but often left feeling pulled between family and school obligations.
Joey’s older sister was their mother’s primary caretaker while their dad worked, he says. She made the preemptive decision to take the entire fall semester off from school, because she did not know when her mother would pass away. Joey describes feeling torn, longing to be at home to grieve with his loved ones but fearing falling behind in his academics. He reminded himself that his mother had encouraged him to make friends and “make his mark” on campus, something that seemed impossible as he struggled just to stay afloat.
“When college students have to confront the loss of a family member, they are immediately pulled between their two worlds of school and family life,” said Crocker, who noted the chasm is even wider for international students. “This pull is aggravated by geographic factors, multi-faceted academic demands, and oftentimes by the uncertain timeline at the end of their loved one's life. No one is prepared for this. Colleges and universities need to understand this painful dynamic and provide balance and support—not demands—to students who are grieving.”
Another barrier is the disconnect around bereavement and mental health support on campus. Siegal and Crocker emphasize that bereavement is a component of mental health, yet as colleges have increased cultural awareness and attention to mental health, grief and bereavement have been largely excluded from the conversation—despite the fact that the death of a loved one is correlated with a higher risk of depression, anxiety, post-traumatic stress disorder, and compromised physical health due to chronic stress.
How to Help
Colleges and universities do recognize the need. According to Siegal, administrators and decision-makers in higher education have expressed uncertainty surrounding best practices—they, too, operate in the dark, without a clear, universal protocol for students. “We saw that there was a demand for support in this area,” Siegal says, “so we started to put a program and initiative together. We interviewed students and created the video just so people could see that there really is a case for this work, and data show there are hundreds of thousands of students losing a loved one each year. This is not a small problem.”
The UGrieve program provides data and information about bereavement and makes recommendations to colleges on how to “build compassionate campuses” through policy changes. The UGrieve program urges colleges and universities to implement a “point person” to inform students of their options, communicate with professors, and coordinate accommodations as needed. The point person, she says, would ensure that grieving students will not be forced to make hurried decisions about their academic futures without full knowledge of the school’s policies and the resources available to them. "College students who have suffered a loss experience a sense of grief and isolation that inhibits them from navigating their classwork, effectively communicating with professors and accessing even the resources that are readily available on campus,” says Crocker. “Colleges and universities can overcome this disconnect by assigning a single point of contact to guide a grieving student on every accommodation available to them."
Additionally, Siegal says, universities can implement training programs for faculty, staff, and students to make it easier for them to approach conversations with people who have lost loved ones. “It can be awkward,” Siegal acknowledges. “If someone brings up the death of a loved one, a roommate or professor won’t always know what to say.” Trainings and educational resources, she says, can create a grief-ready campus. The UGrieve mission is to “build compassionate campuses” where bereaved students are not neglected as they struggle to navigate classwork and social lives in a time of grief. On a compassionate campus, faculty will be better prepared to accommodate students who lose a parent, caregiver, or sibling. Bereaved students will have a point person to direct them to campus resources. Roommates and friends will be better equipped to recognize signs of isolation and depression.
UGrieve suggests that the first step to creating compassionate and informed campuses is to include grief and bereavement in conversations about mental health, including legal conversations. In 2023, several U.S. senators, including Massachusetts' Edward Markey, introduced the Student Mental Health Rights Act, which would require the Department of Education to issue guidance to institutions of higher education to ensure compliance with federal law on mental health disabilities. But for some students, there is a glaring gap in the legislation: “It mandates colleges to provide accommodations for students who have anxiety, depression, substance use disorder, and they don't include bereavement,” says Siegal. “So we're working to compel them to include bereavement in the legislation. The accommodations they are proposing for supporting students with mental health struggles are very similar to what we are recommending for students who are grieving.”
With advocacy and hands-on resources, the Parmenter Foundation hopes all colleges and universities will examine the strength of their bereavement programs and consider them an important part of creating compassionate campuses.
After his mother was diagnosed with cancer, Joey says, “She fought till the very end. She wasn’t willing to give up or back down without a fight. It’s still a huge inspiration. When I’m thinking about giving up, or when I’m at my lowest point, I always think: What would my mom say? What would my mom do?”
When Joey returned to school for the second semester of his freshman year, he arranged a meeting with the dean of students and the dean of the business school. He described his experience, telling them that it was the experience of many students who were suffering in silence, not knowing where to turn for help. He says the deans listened: they wanted to do better. They listened to a student who had felt neglected, left to fend for himself—and they took his suggestions seriously, proposing new protocols for grief support with the goal of making campus resources clear and accessible to all students.
Now a finance major with a minor in economics, Joey has cultivated a sense of belonging and hope on campus, living a life beyond his dorm room. “I don't hate this school,” he says. “I love being here. It's a great fit for me. I just wanted to make it better.” He has worked with UGrieve to build a compassionate campus for future students, who he says he hopes “will be treated the exact opposite” of how he was. For Joey, a compassionate campus is one where students can spend time at home to grieve with their families, knowing that they will be accommodated and welcomed back to campus; where students know who to reach out to and where to go for help; where professors have built-in procedures to grant extensions and forgive missed work when a student loses a family member or caregiver. And a place where an administrator will be less likely to ask a student for his mother’s obituary as proof of death.
To learn more about UGrieve, visit https://parmenterfoundation.org/ugrieve/.