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Federal Government Requests Public Comments on Interventions to Improve Care of Bereaved Persons

Dec 10, 2023 | Advocacy, Data Collection, Federal Government

Federal Government Requests Comments on Interventions to Improve Care of Bereaved Persons

In 2023, and as a result of your hard work, Congress directed The Agency for Healthcare Research and Quality (AHRQ) to establish an evidence base for what constitutes high-quality bereavement and grief care. This systematic review will inform an independent subject matter expert panel that will assess the feasibility of developing consensus-based quality standards for high-quality bereavement and grief care.

AHRQ is seeking comments from the public for a limited time. Outlined below are AHRQ’s initial findings and how you may submit your comments directly. The deadline for public comment is January 11, 2024!

Background & Objectives

Bereavement – the state of having lost someone – and grief – the emotional response to the loss – are fundamental aspects of the life course and most individuals will experience the loss of someone during their lifetime.1 In recent years, a growing number of individuals report experiencing grief and bereavement, due to both better identification of grief and grief-related needs, as well as a large aging population, the COVID-19 pandemic, and more frequent mass trauma events. Emotions related to grief can include feelings of deep sadness, longing, and shock.2 There are a range of interventions to support individuals through their grieving process, ranging from informal supports (e.g., online resources, pamphlets, bereavement support groups) to formal supports such as individual and group therapy. Most individuals experience acute grief without formal intervention, yet a small subset of individuals develop complicated grief or grief with a high level of distress that extends 6 to 12 months following the death.3-5 This type of grief was named prolonged grief disorder by the WHO and included in the ICD-11 in 20186 and classified as a formal disorder in the DSM-V TR in 2022.7 Symptoms of prolonged grief disorder include persistent longing for the deceased person, difficulty accepting the death, emotional pain, and feelings of bitterness.8, 9 In addition, recently bereaved individuals face higher medical risks as well, including increased risk of morbidity and mortality,10-13 suicide,14, 15 and lower functional status and quality of life.10, 16

There are a range of decisional dilemmas related to the screening, intervention, and follow-up of bereaved individuals for grief and grief-related needs over time. Broadly, there is ongoing debate about the “medicalization” of grief and its characterization as a disorder. Potential consequences of this medicalization of grief include the overdiagnosis,  overtreatment, and the loss of traditional and cultural methods of adapting to the loss of a loved one.17 Then there are important questions related to the appropriate screening of bereaved individuals, or those who may become bereaved, to identify and intervene on maladaptive grief responses, such as prolonged grief disorder. In general, mental health services for bereaved individuals, especially bereaved individuals who are caregivers to individuals at the end of life, are considered to be underutilized.18 The public health model for bereaved individuals focuses on identifying and supporting three groups: a) the bereaved population as a whole (universal approach), b) individuals who may be at risk for prolonged grief disorder (selected approach), and c) individuals who have signs or symptoms of a grief disorder (indicated approach).19 Some argue that a universal approach to screening may overlook some individuals who need more tailored support, while engaging other individuals who may not need intervention.20 In contrast, a selected or indicated approach may overlook the opportunity to support and intervene a wider group of bereaved individuals who could benefit.

Related to approaches to identifying and supporting bereaved individuals is the timing of screening and intervention. A variety of factors are related to the grieving processes that make it challenging to determine the most appropriate time to conduct screening. Bereavement processes are unique to each bereaved individual and the trajectory is cyclical, rather than staged.21, 22 The type and circumstances of death (e.g., expected vs unexpected), preparation for the death, awareness of prognosis, acceptance of death, and readiness to engage in bereavement can all play a role in grief processes and timing. While proactive and early screening provides an opportunity for early intervention during the normal bereavement process, screening that comes too early in an individual’s bereavement process may at best be ineffective, and at worst, create undue distress and anxiety. In contrast, screening that happens later in the course of bereavement may miss a window of opportunity for intervention.

In general, clinicians feel that bereavement screening could be useful yet there are various contextual barriers to implementation in health care settings.23 Many bereaved individuals have time-limited contact with the healthcare system in the context of their loss and typically only if their loved one dies in a healthcare setting such as in a hospital, intensive care unit, emergency room, nursing home, or hospice. This limits opportunity for screening and intervention as well as consistent follow-up, with potential for wide variation in how screening is conducted and by whom. Numerous tools exist, but with little consensus or standardization regarding what to use when, and inconsistent implementation.24-27

There are several decisional dilemmas pertaining to appropriate interventions for grief. Given the cyclical and non-linear trajectory of grief, identifying the optimal time for intervention is a persistent challenge for the field. For example, could bereaved individuals experiencing “normal” or typical grief still benefit from formal interventions, and if so, what types of interventions might be most useful? When does normal grief cross a threshold into prolonged grief, and when is formal intervention likely to be most effective? And who is best suited to deliver grief interventions (e.g., health care providers such as a psychologist or psychiatrist for therapy/pharmacotherapy vs community-based practitioners such as a grief counselor or spiritual counselor)? 28-30

There are also outstanding questions regarding the effectiveness of treatment for bereaved individuals who have been identified as having a grief disorder. Interventions to treat prolonged grief disorder include interpersonal psychotherapy, cognitive behavioral therapy, bereavement programs, peer support and group therapy. Most studies on interventions to treat bereaved individuals, however, are small pilot studies.29 There are conflicting results related to the effectiveness of preventive interventions prior to the death, while interventions after the death have resulted in short and long-term improvements.31 Information on their implementation and use in practice is varied, and there are inconsistencies in the extent to which current practice is substantiated by grief and loss theory. This in turn may diminish their credibility and further limit their use in practice. Innovative interventions such as narrative storytelling32 have recently been developed to address averse emotional outcomes of grieving, but little is known about their effectiveness in clinical practice.

We know little still about how contextual factors might impact the effectiveness and even appropriateness of grief interventions.33 The same factors that might influence the timing and appropriateness of screening likely impact the adoption and effectiveness of grief interventions such as circumstances of the death (e.g., traumatic death, anticipated death, overdose, suicide), and place of death such as the ICU, relationship to the deceased person (e.g., child, spouse, estranged relationship), and social isolation and loneliness.34 Comorbid mental health conditions – both pre-existing as well as new onset – may play a particularly influential role, for example the interaction between grief and comorbid depression, and how this should be integrated into intervention. Cultural preferences may influence whether a bereaved individual engages in the intervention, and what types of interventions are likely to be useful and effectives.

Finally, questions remain regarding feasible and appropriate follow-up of bereaved individuals identified as grieving and with grief-related needs. Because grief and bereavement are cyclical non-linear processes unique to each individual,22 follow-up screening may be particularly useful to capture any new, maladaptive (or otherwise benefitting from intervention) responses to grieving. However, follow-up and longer-term screening and intervention is complicated by the various settings in which bereaved individuals may interact. For example, bereavement support might be available in the hospital following an inpatient death, but service is often discontinued once the bereaved individual returns home. Community bereavement support may be available but is often only accessed if the bereaved individual proactively seeks it out, and even then, systematic follow-up in the community is likely highly limited. Some emergency departments report bereaved family members commonly requested referral to community bereavement resources, but found that consistent follow-up was resource intensive and difficult to implement.35 This gap between intervention and follow-up risks overlooking the potential for maladaptive grief response over the longer-term, when it may actually be more likely to develop.

Key Questions

The key questions proposed for the systematic review, addressing screening approach (Key Question 1), screening tools (Key Question 2), bereavement interventions (Key Question 3), and maladaptive grief-related disorder interventions (Key Question 4) were generally supported by key informants, and slightly refined following their input. We sought input from six key informants; including a patient advocate, a caregiver representative, a supportive medicine physician, a clinical psychologist, an expert in spiritual grief, and a social work representative focusing on policy. Key informants emphasized that grief is nonlinear and differs by individual person, and noted that the lack of guidance around grief and bereavement care reinforces the need for a systematic review. Major considerations or revisions recommended by key informants included 1) the importance of extending the screening and follow-up period to more than 1-year following the loss; 2) the need for clinical interview or qualitative assessment in addition to standardized screening and diagnostic tools; 3) the importance of taking spiritual, religious, and cultural differences into account when screening, assessing, and diagnosing; and 4) the importance of considering different bereavement contexts including the type of death (e.g., illness), nature of the death (e.g., sudden death), setting of death (e.g., hospital), relationship to the deceased person (e.g., spouse), and age of the deceased person (e.g., child). Finally, key informants also noted that screening and intervention can take place in the community beyond healthcare settings; for example, facilitated through religious institutions, support groups, and online organizations.

Following the described input, the key questions are as follows:

Key Question 1: What is the effectiveness and harms of universally screening people for bereavement and response to loss?

  1. Timing: predeath, acute, or 6-12 months post loss, and more than 1 year post loss?
  2. Does effectiveness vary by patient characteristic or setting?

Key Question 2: How accurate are tools to identify bereaved persons at risk for or with grief disorders?

Key Question 3: What are the effectiveness, comparative effectiveness, and harms of interventions for people at risk for grief disorders related to bereavement?

  1. Timing: predeath, acute, or 6-12 months post loss, and more than 1 year post loss?
  2. Does effectiveness vary by patient characteristic or setting?

Key Question 4: What are the effectiveness, comparative effectiveness and harms of interventions for people diagnosed with grief-related disorders?

  1. Does effectiveness vary by patient characteristic or setting?

Logic Model

The analytic framework depicts the patient population, the interventions, and the outcomes that will be addressed in the evidence synthesis

References

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