Access to quality health care is vital in supporting bereaved people in the aftermath.
1. As it does for children in the foster care system, the Centers for Medicare and Medicaid Services should extend automatic Medicaid eligibility to all bereaved and orphaned children below the age of eighteen and offer means testing and other eligibility pathways to individuals up to the age of twenty-six.
Childhood bereavement is a social and health risk that can render a child uninsured or underinsured. It also places children at risk of poor health outcomes. It remains unknown just how many of the nation’s 2.2 million bereaved and orphaned children are currently enrolled in Medicaid and the Children’s Health Insurance Program, which provide health insurance coverage to nearly thirty-nine million children, including many children of diverse racial and ethnic backgrounds. However, racial and ethnic bias in the quality of pediatric care delivery is well documented.
These biases place additional hardships on grieving families by compounding negative social determinants. The Centers for Medicare and Medicaid Services (CMS) should extend automatic Medicaid eligibility to all bereaved and orphaned children up to the age of twenty-six, consistent with the Affordable Care Act. In addition, as it does for children in the foster care system, CMS should extend automatic Medicaid eligibility to all bereaved and orphaned children below the age of eighteen, with continued coverage up to the age of twenty-six for individuals with significant health and health-related needs.
2. The Center for Medicare and Medicaid Innovation should develop reimbursement payment structures that support and promote qualified bereavement care and bereavement care systems outside the medical-industrial complex.
Reimbursable bereavement care is an important strategy for shifting the focus of the nation’s healthcare payment and delivery systems toward the prevention of disease and poor outcomes. Bereavement providers may exist within healthcare systems, but more often they exist within communities (such as Rotary clubs and food pantries) who understand the multidimensional challenges families face. The Centers for Medicare and Medicaid Services should consider reimbursing these providers if they meet eligibility and certification standards. Reimbursing providers outside medical settings may also help prevent the overmedicalization of bereavement and overpathologizing of grief. Indeed, the great majority of bereaved individuals grieve within the normative-adaptive range, which does not require specialized therapeutic intervention. Rather, normative grief reactions may instead benefit from community-based support measures that promote adaptive coping and adjustment instead of, or in addition to, clinical diagnosis and therapeutic intervention, which requires specialized training and can be very costly. The Centers for Medicare and Medicaid Innovation should pilot new payment and delivery systems among qualified bereavement providers.
3. The Health Resources and Services Administration and the Community Oriented Policing Services should institute training and support programs to prevent burnout among healthcare workers, first responders, law enforcement personnel, and others who are routinely exposed to intense death events and grief in their occupations.
Prolonged exposure to death poses a real risk of secondary traumatic stress and burnout, both of which diminish a professional’s ability to respond in a compassionate manner. Equally sobering, these prolonged exposures also place providers themselves at risk—not only of poor physical and mental health but also of suicide, particularly among women. Although clinicians, emergency services personnel, and law enforcement officials receive training that enables them to perform the technical aspects of their jobs, when it comes to their most sensitive and difficult duties—such as next-of-kin notification— limited evidence indicates that many of these dedicated professionals have received little or no training or guidance in how to communicate news of a death compassionately and respectfully.
As a result, death notification and bereavement care are often performed in a suboptimal manner, which can further victimize and potentially traumatize individuals and families. Since interactions with healthcare workers and death-scene investigators can either positively or negatively influence a family’s experience and long-term ability to cope, the White House should direct the Department of Health and Human Services’ Health Resources and Services Administration and the Department of Justice’s Community Oriented Policing Services to develop professional bereavement-care resources and tools to support frontline responders throughout the United States.
4. The Health Resources and Services Administration should expand the Title V Maternal and Child Health Block Grant program to include bereavement services for families in addition to child death reviews.
Today, 98 percent of all infants and 60 percent of all children, including those with special needs, have access to health care and public health services as part of the Title V Maternal and Child Health Block Grant program (MCH). The degree of overlap between current MCH beneficiaries and children who are parentally bereaved or orphaned remains unknown; however, in many states, MCH funds are used to conduct child death reviews. Yet little or no attention is directed toward bereavement care or programming. The White House should work with the Health Resources and Services Administration to expand the definition of “preventive and primary care services” under MCH, thus enabling states to attend to the health needs of bereaved and orphaned children.
4. The Health Resources and Services Administration should expand the Title V Maternal and Child Health Block Grant program to include bereavement services for families in addition to child death reviews.
Today, 98 percent of all infants and 60 percent of all children, including those with special needs, have access to health care and public health services as part of the Title V Maternal and Child Health Block Grant program (MCH). The degree of overlap between current MCH beneficiaries and children who are parentally bereaved or orphaned remains unknown; however, in many states, MCH funds are used to conduct child death reviews. Yet little or no attention is directed toward bereavement care or programming. The White House should work with the Health Resources and Services Administration to expand the definition of “preventive and primary care services” under MCH, thus enabling states to attend to the health needs of bereaved and orphaned children.
5. The Agency for Healthcare Research and Quality should develop evidence-based practice standards for therapeutic providers who serve as frontline bereavement responders.
Today, therapists and social workers can self-identify as having the skills and training needed to serve bereaved families simply by checking a box stating that they will accept patients experiencing grief. Notably, grief can result from many conditions, including job loss, divorce, relationship breakups, and limb amputation. Bereavement, by contrast, is the loss of a loved one through death, and given the vast variation in causes of death, therapeutic professionals should retain demonstrated competencies in subspecialities.
For example, a bereaved child who loses a parent to cancer may receive hospice support but experience severe financial hardship in the aftermath. Or a bereaved child who loses a parent to homicide may experience prolonged judicial proceedings in which the value of a parent’s life is continually compared to the value of an incarcerated individual’s life, a situation that may be sensationalized by the media without family consent. Current standards are thus too lax, allowing unqualified professionals to clinically practice mental-health bereavement care without proper training.
This type of cavalier practice endangers well-being, risks lives—in the case of suicidal individuals—and can add to the profound pain bereaved children and families face. It also runs contrary to the basic tenets of responsible professional care that are hallmarks of evidence-based medicine and evidence-based mental-health practice.
Quality providers are a necessary component of any comprehensive public health strategy. In this sense, bereavement care merits national attention and a resource investment of the kind that trauma-informed care has maintained for the past twenty years.