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Caring for Bereaved Family Members During the COVID-19 Pandemic: Before and After the Death of a Patient

      Abstract

      Bereavement care is considered an integral component of quality end-of-life care endorsed by the palliative care movement. However, few hospitals and health care institutions offer universal bereavement care to all families of patients who die. The current coronavirus disease 2019 pandemic has highlighted this gap and created a sense of urgency, from a public health perspective, for institutions to provide support to bereaved family members. In this article, drawing on the palliative care and bereavement literature, we offer suggestions about how to incorporate palliative care tools and psychological strategies into bereavement care for families during this pandemic.

      Key Words

      Introduction

      The coronavirus disease 2019 (COVID-19) pandemic has upended the way our society functions, including how we care for the sick, dying, and bereaved. Palliative care clinicians have been called on to care for patients and their families in ways we have never done before, without many of the tools we usually rely on at end of life. In-person patient and family meetings, conversations at the bedside, and efforts to discharge patients to home or to hospice have been replaced with remote conversations, isolation, and the very real possibility that patients will die alone, separated from their loved ones. Similarly, rituals that normally bring comfort and opportunities to access support after a death are not possible, which can increase feelings of isolation, loss, and despair in bereaved individuals.
      All these factors can lead to problematic grief reactions after a patient dies. As the medical community works actively to flatten the COVID-19 curve, a sense of urgency now exists for hospitals to get ahead of the bereavement curve. In this article, drawing from the palliative care and bereavement literature, we offer suggestions that clinicians and teams can adopt before and after the death of a patient to help mitigate a difficult bereavement reaction for families impacted by this pandemic.

      Background

      The death of a loved one is considered the most powerful stressor in everyday life with bereaved individuals at increased risk of adverse mental and physical health outcomes.
      • Holmes T.H.
      • Rahe R.H.
      The social readjustment rating scale.
      ,
      • Stroebe M.S.
      • Schut H.A.W.
      • Stroebe W.
      Health outcomes of bereavement.
      How a person copes after the death of a significant loved one is influenced by personality and coping style, the relationship with the deceased, and the circumstances of the death.
      • Malkinson R.
      Cognitive grief therapy: Constructing a rational meaning to life following loss.
      Although most bereaved individuals adjust to their loss without requiring professional intervention,
      • Prigerson H.G.
      • Horowitz M.J.
      • Jacobs S.C.
      • et al.
      Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11.
      public health models estimate that approximately 10% of bereaved individuals are at high risk of developing complex grief reactions possibly requiring intervention from a mental health professional, and an additional 30% are considered at moderate risk and might benefit from group support.
      • Aoun S.M.
      • Breen L.J.
      • Howting D.A.
      • et al.
      Who needs bereavement support? A population based survey of bereavement risk and support need.
      Risk factors for poor bereavement outcomes include a history of psychiatric issues, lack of social support, a sudden or a traumatic death, lack of preparation for the death, a hospital-based death, and a death in the intensive care unit (ICU).
      • Stroebe M.S.
      • Schut H.A.W.
      • Stroebe W.
      Health outcomes of bereavement.
      ,
      • Lobb E.A.
      • Kristjanson L.J.
      • Aoun S.M.
      • et al.
      Predictors of complicated grief: a systematic review of empirical studies.
      • Lundorff M.
      • Holmgren H.
      • Zachariae R.
      • Farver-Vestergaard I.
      • O'Connor M.
      Prevalence of prolonged grief disorder in adult bereavement: a systematic review and meta-analysis.
      • Wright A.A.
      • Keating N.L.
      • Balboni T.A.
      • et al.
      Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health.
      After a death in the ICU, specific risk factors for complicated grief reactions, such as prolonged grief disorder and post-traumatic stress disorder, include the patient dying while intubated, family members not able to say goodbye, and poor communication between physicians and the patient's family.
      • Kentish-Barnes N.
      • Chaize M.
      • Seegers V.
      • et al.
      Complicated grief after death of a relative in the intensive care unit.
      Clearly, some of these risk factors are heightened for any death during this pandemic, whether the death was a direct result of COVID-19 or not. Patients with COVID-19, however, can have a clinical course that increases these risks, including a precipitous decline and death or, conversely, a prolonged ICU stay.
      Families may have other stressors related to the pandemic that can also intensify their experience of a loved one's illness and death. Some families experience multiple members falling ill and dying within a short period. Other families experience financial hardship and are unable to provide resources for their dying loved one. And still other families are prevented from traveling to see their loved ones during their final days, or from visiting them in the hospital, skilled nursing facility, or hospice because of visitor restrictions.
      Research demonstrates that palliative care and hospice services are associated with improved family-reported quality of end-of-life care
      • Wachterman M.W.
      • Pilver C.
      • Smith D.
      • et al.
      Quality of end-of-life care provided to patients with different serious illnesses.
      ,
      • Wright A.A.
      • Keating N.L.
      • Ayanian J.Z.
      • et al.
      Family perspectives on aggressive cancer care near the end of life.
      and better bereavement outcomes for family members.
      • Wright A.A.
      • Keating N.L.
      • Balboni T.A.
      • et al.
      Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health.
      ,
      • Bradley E.H.
      • Prigerson H.
      • Carlson M.D.A.
      • et al.
      Depression among surviving caregivers: does length of hospice enrollment matter?.
      • Christakis N.A.
      • Iwashyna T.J.
      The health impact of health care on families: a matched cohort study of hospice use by decedents and morality outcomes in surviving, widowed spouses.
      • Palmer W.W.
      • Yuen F.K.
      The impact of hospice patient disease type and length of stay on caregiver utilization of grief counseling: a 10-year retrospective study.
      Similarly, in a bereavement study conducted at our cancer institute,
      • Morris S.E.
      • Nayak M.M.
      • Block S.D.
      Insights from bereaved family members about end-of-life care and bereavement.
      bereaved family members were asked what they wished the clinical team could have done before their loved one's death that would have helped them in dealing with their loss. The most common themes identified included providing more accurate information about prognosis, the end-of-life period and dying process, earlier referral to hospice, and more caregiver support before the patient's death. Conversely, when asked what helped them in dealing with their loss, the family members reported compassionate care by the team, including communication that conveyed empathy, caring, and concern for both the patient and caregiver. Bereavement outreach from the providers and the offering of condolences were also found to be helpful.
      Given that bereavement care is best conceptualized as a preventative model of care
      • Morris S.E.
      • Block S.D.
      Adding value to palliative care services: the development of an institutional bereavement program.
      and considered a core component of palliative care,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      providing support to families before and after the death of a patient can help mitigate a poor bereavement outcome. Although the development of standardized bereavement programs has lagged behind other aspects of palliative care,
      • Morris S.E.
      • Block S.D.
      Adding value to palliative care services: the development of an institutional bereavement program.
      hospitals must now implement basic bereavement outreach to help support families impacted by the COVID-19 pandemic.

      Caring for Families Before the Patient's Death to Facilitate Postloss Adjustment

      Palliative care provides the framework for caring for patients and their families in the most difficult of circumstances. Even without full access to all the palliative care tools used routinely to care for patients, there is still much we can do to help families prepare for their loved one's death. Communication skills and trusting relationships are core elements of palliative care; both are even more important now given the increased distress and social distancing associated with the pandemic.
      Building on the repertoire of palliative care tools and findings from bereavement research, Table 1 outlines suggestions that can be used before a patient's death that can help promote postloss adjustment. We have categorized these tools as communication skills, care processes, and tools to promote connection.
      Table 1Tools for Caring for Families Before the Patient's Death to Facilitate Postloss Adjustment
      CategoryToolRationale/Factors to Consider
      Communication skillsAcknowledge the effect of the pandemic: These are unprecedented timesHelps to externalize the problem, set realistic expectations within a CBT model, especially about social distancing and hospital visitor policies
      • Malkinson R.
      Cognitive grief therapy: Constructing a rational meaning to life following loss.
      Facilitate conversations with the patient and family or with provider, patient, and familyUse virtual platforms as needed and include children as appropriate
      • Kentish-Barnes N.
      • Chaize M.
      • Seegers V.
      • et al.
      Complicated grief after death of a relative in the intensive care unit.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      Care processesAssign a clinician or other team member to check in with the family regularlyProvides guidance and reassurance and helps to lessen feelings of anxiety
      • Morris S.E.
      • Nayak M.M.
      • Block S.D.
      Insights from bereaved family members about end-of-life care and bereavement.
      ,
      • Collins A.
      • Lethborg C.
      • Brand C.
      • et al.
      The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices.
      Screen family members for distress and risk factors for poor bereavement outcomes, provide supportHelps mitigate a difficult bereavement reaction, especially important during the pandemic
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      ,
      • Morris S.E.
      • Anderson C.M.
      • Tarquini S.J.
      • et al.
      A standardized approach to bereavement risk-screening: a quality improvement project.
      Provide family members with up-to-date information, especially in the end-of-life periodHelps to align expectations with reality and prepare for their loved one's death
      • Morris S.E.
      • Nayak M.M.
      • Block S.D.
      Insights from bereaved family members about end-of-life care and bereavement.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      If the family is not present at the time of death, have the physician call immediately to inform them, answer questions, and offer condolencesInitial bereavement outreach considered an essential component of quality end-of-life care, especially important during the pandemic
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      ,
      • Midland D.
      Fast facts and concepts #64. Informing significant others of a patient's death. 2015.
      Tools to promote connectionLook in the chart for hints about the patient before falling ill (occupation, family, and hobbies) and refer to them in conversations with the familyPromotes connection and personalizes care
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      For ICU patients, ask families for photos so teams can see who they were before becoming illPromotes connection and personalizes care
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      Ask families if the patient has a favorite type of music and play it in their hospital roomHelps the family feel involved in their loved one's care
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      Place a Getting to know you poster on the patient's door, created by a staff member with a family member over the telephonePromotes connection and personalizes care, especially because families do not want to think their loved one was just another number
      • Morris S.E.
      • Nayak M.M.
      • Block S.D.
      Insights from bereaved family members about end-of-life care and bereavement.
      Take a team photo alongside the Getting to know you poster to send to the familyPromotes connection and personalizes care and can be an important memento during bereavement within the continuing bonds framework
      • Malkinson R.
      Cognitive grief therapy: Constructing a rational meaning to life following loss.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      Take a photo of the patient speaking to a family member if they are unable to visitHelps the family member feel connected and can be an important memento during bereavement within the continuing bonds framework
      • Malkinson R.
      Cognitive grief therapy: Constructing a rational meaning to life following loss.
      Suggest families make an audio recording that can be played by staff for the patient, telling them the things they would tell them in personHelps alleviate guilt or regret in bereavement, especially if they were not able to be present at the time of death
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      ,
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      Depending on infection status, consider tracing handprints or making hand molds of the patientLegacy-making activity that helps families, including children, maintain a connection with their loved one after their death
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      ,
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      ,
      Obtain a cardiac tracing from the patient's last days to send to the familyLegacy-making activity that helps families, including children, maintain a connection with their loved one after their death
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      ,
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      ,
      CBT = cognitive behavior therapy; ICU = intensive care unit.

      Caring for Families After the Patient's Death to Facilitate Postloss Adjustment

      It is likely that many bereaved individuals will experience great distress associated with the impact of COVID-19 on the death of their loved one and subsequent bereavement. Routines and rituals, such as wakes and funerals that normally provide comfort after a death, are not readily available, and bereaved individuals will most likely have limited access to practical support from others because of social distancing and stay-at-home orders. They might also have less access to emotional support from family and friends if those people are struggling with worries of their own. Already, mental health clinicians are beginning to see an increase in bereaved individuals seeking support. Experts predict increased rates of prolonged grief disorder and post-traumatic stress disorder in several months' time. As such, it is now crucial from a public health perspective for hospitals to adopt a proactive stance and for clinicians to intervene early.
      One important tool in treating complex grief reactions, including prolonged grief disorder, is cognitive behavior therapy (CBT).
      • Litz B.T.
      • Schorr Y.
      • Delaney E.
      • et al.
      A randomized controlled trial of an internet-based therapist-assisted indicated preventive intervention for prolonged grief disorder.
      ,
      • Shear M.K.
      • Reynolds C.F.
      • Simon N.M.
      • et al.
      Optimizing treatment of complicated grief: a randomized clinical trial.
      The CBT model proposes that the way we think affects the way we feel and behave. Helping people learn to evaluate their thinking and generate more realistic or accurate thinking patterns improves both their emotional state and their behavior.
      • Beck J.S.
      Cognitive behavior therapy: Basics and beyond.
      The cognitive model provides a framework for identifying and challenging unhelpful thoughts or beliefs that might result in feelings of guilt, anger, or blame.
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      For example, during the pandemic, a family member might blame themselves or others for their loved one's death or feel extreme guilt about not being present when their loved one died. Helping them shift their perspective and in turn, the level of responsibility they endorse, can lead to healthier coping.
      Table 2 includes CBT strategies along with other tools to help clinicians and teams support recently bereaved individuals. Based on an education, guidance, and support model,
      • Morris S.E.
      • Block S.D.
      Adding value to palliative care services: the development of an institutional bereavement program.
      these strategies promote a healthy integration of the loss.
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      Many of these strategies are relevant soon after the death of the patient. Others are applicable at a later date and/or within the context of a therapeutic relationship.
      Table 2Caring for Families After the Patient's Death to Facilitate Postloss Adjustment
      CategoryToolRationale/Factors to Consider
      Communication skillsRespond to emotion:

      Name it: This is so very hard

      Explore it: Can you tell me more?
      Helps bereaved individuals feel supported and allows them to process information once emotion is acknowledged
      • Ambuel B.
      Fast facts and concepts #29. Responding to patient emotion.
      Acknowledge the effect of the pandemic:

      These are unprecedented times

      The pandemic took us all by surprise
      Helps to externalize the problem and set realistic expectations about social distancing and other restrictions. Lays the foundation for challenging unhelpful thinking within a CBT model, especially in cases where individuals might feel guilt regarding the circumstances of their loved one's death
      • Malkinson R.
      Cognitive grief therapy: Constructing a rational meaning to life following loss.
      ,
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      Care processesMake a bereavement callHelps bereaved families know the patient and family are remembered, an important component of quality end-of-life care. Ideally, performed in the first week after the patient's death
      • Morris S.E.
      • Nayak M.M.
      • Block S.D.
      Insights from bereaved family members about end-of-life care and bereavement.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      Send a team sympathy cardHelps bereaved families know the patient and family are remembered, an important component of quality end-of-life care. Consider including a photograph of the Getting to know me poster with the team
      • Morris S.E.
      • Nayak M.M.
      • Block S.D.
      Insights from bereaved family members about end-of-life care and bereavement.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      Provide psychoeducational information about griefHelps bereaved individuals have a roadmap of what they might expect (e.g., grief comes in waves). Include age-appropriate information about supporting grieving children as indicated
      • Morris S.E.
      • Block S.D.
      Adding value to palliative care services: the development of an institutional bereavement program.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      ,
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      Refer for grief counselingEspecially for individuals at high risk for poor bereavement
      • Aoun S.M.
      • Breen L.J.
      • Howting D.A.
      • et al.
      Who needs bereavement support? A population based survey of bereavement risk and support need.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      ,
      • Morris S.E.
      • Anderson C.M.
      • Tarquini S.J.
      • et al.
      A standardized approach to bereavement risk-screening: a quality improvement project.
      Outline strategies that help recently bereaved individuals, including adapting ritualsHelps provide structure and support during bereavement. Encourage bereaved individuals to follow a routine, pay attention to their self-care, including checking in with their doctor, and maintain social connections using technology. Suggest they consider holding a virtual celebration of life with family and friends to reminisce, or writing their loved one a letter, telling them what they wish they could have said, especially if they were not able to have a proper goodbye. They can also consider planning a memorial event when able to at a later date
      • Morris S.E.
      • Nayak M.M.
      • Block S.D.
      Insights from bereaved family members about end-of-life care and bereavement.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      ,
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      ,
      Challenge unhelpful thinking without dismissing the emotionHelps restructure unhelpful thinking. Within the context of a therapeutic relationship and drawing from CBT strategies, the bereaved is gently encouraged to express their thoughts and feelings and identify and challenge those thoughts that are leading to guilt, blame, or anger. A useful question to help shift perspective is What would you say to a friend in the same situation?
      • Malkinson R.
      Cognitive grief therapy: Constructing a rational meaning to life following loss.
      ,
      • Morris S.E.
      Overcoming grief: A self-help guide using cognitive behavioural techniques.
      ,
      Suggest support groupsHelps provide social connections and normalization of grieving process. Support groups require careful screening of participants to assess appropriateness, readiness, and timing for a group, especially given the extraordinary circumstances of the pandemic
      • Aoun S.M.
      • Breen L.J.
      • Howting D.A.
      • et al.
      Who needs bereavement support? A population based survey of bereavement risk and support need.
      ,
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      Plan for post-COVID-19Provides support/guidance over time. Consider offering to meet bereaved families at a later date to answer questions or holding a team memorial service where families can come together to meet the clinicians who cared for their loved ones
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      CBT = cognitive behavior therapy; COVID-19 = coronavirus disease 2019.

      Conclusion

      Bereavement care is an integral component of quality end-of-life care.
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      However, few hospitals and other health care institutions offer universal bereavement care to all families of deceased patients. Given the current COVID-19 pandemic, there is an urgency from a public health perspective, to expand bereavement services in an attempt to mitigate poor bereavement outcomes, including prolonged grief disorder and other psychiatric disorders. We recommend that all hospitals implement basic bereavement outreach, using palliative care tools and psychological strategies to prepare families for the death of their loved ones and to support them afterward in the initial months of their bereavement.

      Disclosures and Acknowledgments

      No competing financial interests exist for Ms. Moment and Dr. Thomas. Dr. Morris receives royalties on the sales of her book Overcoming Grief: A Self-help Guide Using Cognitive Behavioral Techniques. The authors declare no conflicts of interest.

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