Grief & Bereavement
Introduction
Grief is defined as the ‘anguish experienced after significant loss, usually the death of a beloved person’ (dictionary.apa.org). Following a significant loss, grief is not only characterized by deep sadness but also by an intense yearning or longing to be with that person again. Grief is best described as coming in waves, which provides a realistic framework to help the bereaved understand their experience and progress. Most bereaved individuals report that the intensity and frequency of the waves lessens over time even though there will be triggers that result in an intensification of emotion. Some triggers can be anticipated, such as a birthday or anniversary, while others seemingly come ‘out of the blue’, for example, hearing a song on the radio. Conceptualizing grief as following a wave-like pattern helps illustrate the differences between individual responses and explains why some people appear to struggle more than others. Thinking ahead about potential triggers and making a plan to tackle them, helps the bereaved increase their sense of control (Morris & Block, 2012).
Even though bereavement is a normal, universal human experience, the death of a loved one is considered to be the most powerful stressor in everyday life where bereaved individuals are at increased risk of serious mental and physical health outcomes (Holmes & Rahe, 1967; Stroebe, Schut & Stroebe, 2007). While the majority of bereaved individuals adjust to their loss without requiring professional intervention, public health models estimate that approximately 10% are at high risk of developing a complex grief reaction requiring intervention from a mental health professional, and another 30% are considered at moderate risk, possibly benefiting from group support (Auon et al., 2015). Bereavement care is therefore best conceptualized as a preventative model of care and providing support and guidance to families before and after the death of a patient can help improve bereavement outcomes (Morris & Block, 2015).
Bereavement care comes in many forms, including:
- Individual counseling
- Peer group support
- Structured group programs facilitated by psychosocial clinicians
A range of organizations offer bereavement care, including hospices, faith-based groups, and nonprofit community organizations, in addition to informal support provided by local doctors, funeral directors and other clinicians. Yet few hospitals offer standardized, hospital-wide bereavement programs. As a result, the types of support and treatment options available vary considerably and can be difficult to find.
Guidelines
Bereavement care, including the assessment of risk, is a central component of high-quality end-of-life care as described by The National Consensus Project for Quality Palliative Care (2018) – Guideline 7.5 Bereavement (https://www.nationalcoalitionhpc.org/wp-content/uploads/2018/10/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf).
Screening and Risk Factors
Identifying those individuals at risk of a difficult bereavement is an essential task of the clinical team. Screening for risk throughout the course of the patient’s illness and providing psychological support to family members prior to a patient’s death, is believed to mitigate complex grief (NCP, 2018). Screening should ideally incorporate an assessment of the risk factors listed below with appropriate recommendations for follow-up as indicated (Morris, Anderson, Tarquini & Block, 2020).
Risk factors for poor bereavement outcomes: (Lobb et al., 2010; Probst e al., 2016; Stroebe et al., 2007).
- Limited social support
- History of psychiatric disorders, such as depression and substance use
- Concurrent stressors, such as financial concerns
- Previous losses
- Death of a child
- Dependent relationship with the deceased
- Unexpected diagnosis
- Sudden or unexpected death
- Lack of preparation for death
- Unanswered questions
- Hospital-based death
- Witnessing a difficult death
Evaluation and Diagnosis
How a person copes with a significant loss is influenced by many factors, including the nature of the death, the relationship with the deceased, their personality style, and the social and cultural context in which bereavement is experienced (Stroebe et al., 2007). Distinguishing normal bereavement from complicated grief reactions has been the focus of much research over the past three decades. Research primarily based on spouse loss, shows that normal bereavement can manifest as intense symptoms that subside slowly by six months usually with little significant impairment to functioning (Maciejewski, Zhang, Block, 2007; Prigerson et al., 2009). For bereaved parents the grief experience is considered to be more intense and severe, lasting much longer (Morris, Fletcher & Goldstein, 2019).
Complex grief reactions following the death of a loved one include Prolonged Grief Disorder (PGD) and other psychiatric disorders as described in DSM-5, such as Major Depressive Disorder (MDD), and Posttraumatic Stress Disorder (PTSD) (APA, 2013). PGD, a disabling form of grief, has recently been added to the latest version of DSM-5. It can only be diagnosed after 12 months of distressing symptoms of grief in adults and 6 months in children (Prigerson, Shear, Reynolds, 2022). The defining features include an intense yearning or longing for the deceased person where distressing symptoms impact daily functioning, lasting longer than conventional social norms. Bereavement related depression tends to occur in individuals who are vulnerable to depressive disorders, and PTSD associated with bereavement often involves the presence of distressing memories related to the death (APA, 2013).
The challenge for clinicians is identifying those individuals who might be at risk of a complex grief reaction. This task is made more difficult because no two bereaved individuals will present in the same way and how a person copes in the future, can be hard to predict at the time of their loved one’s death. Considering known risk factors in a systematic way and intervening early, are essential (Morris, et al., 2020).
Bereavement Care
Clinicians can play an important role in supporting family members before and after the death of a loved one that together can positively impact their bereavement outcome. Physicians and nurses can help family members prepare for their loved one’s death by providing accurate information about the dying process to facilitate decision-making, including the opportunity for family members to say goodbye. Involving palliative care early to ensure good symptom control and the provision of psychological support, especially in complex cases, is also beneficial. Psychosocial clinicians can help support family members and make appropriate referrals or recommendations as needed (Morris & Block, 2012). Recommendations include a referral to a community mental health clinician, and for individuals with a previous psychiatric history, they should be encouraged to make an appointment with their treating mental health clinician. It is recommended that all bereaved individuals see their family doctor.
Clinicians should also be cognizant that bereavement is a major life event that is heavily influenced by culture and traditions. Given that each loss is unique and that cultural generalizations are limited, clinicians should be encouraged to adopt an approach of curiosity when caring for bereaved individuals from other cultures (Morris & Block, 2012).
Some guidelines include:
- Explore the cultural background of the bereaved individual
- Gain an understanding of how grief is expressed in their culture, the terms used, and common mourning rituals practiced
- Understand how children are involved in the grieving process as appropriate
- Inquire about the type of support the individual wants from the clinician in relation to their specific grieving experience.
Table 1 outlines guidelines for clinicians that can be tailored to the specific family’s situation and cultural context.
Table 1: Guidelines to Support Family Members Before and After the Death of a Loved One
| Before a Patient’s Death |
| Help family members prepare for their loved one’s death, psychologically and practically. |
| Involve palliative care early in the disease trajectory as part of usual care. |
| Provide clear and accurate information about the dying process to aid decision-making. |
| Recommend an early hospice referral. |
| Assess the coping skills of family members, screening for known risk factors of complex grief reactions where possible. |
| Make a referral to an appropriate community based clinician prior to the patient’s death for individuals who present with risk factors for complex grief reactions. |
| After a Patient’s Death |
| Family members who were not present at the patient’s death should be contacted by the physician as soon as possible to inform them of the death, express condolences, answer any immediate questions and offer the family the opportunity to view the body. |
|
Express condolences – an essential component of quality end-of-life care. Make a bereavement telephone call or send a letter of condolence or card from either the individual clinician or the team – see Table 2 for Condolence Guidelines. |
|
Provide psycho-educational information about grief and expectations of progress e.g., grief comes in waves; grief is both emotionally and physically stressful; significant dates can result in larger waves; routine, self-care and social connections are important in the initial weeks and months to facilitate adjustment. Provide age-appropriate information about supporting grieving children. It’s recommended that children be told the truth about the death in terms they can understand and be included in the funeral or memorial events. Provide opportunities for children to say goodbye to their loved one, such as writing a card to be placed in the coffin. For age-appropriate information see www.dougy.org |
| Offer opportunities for family members to return to the hospital at a later date to meet with the team to address any lingering questions. |
| Recommend that all individuals see their family doctor early in their bereavement and not ignore their own health care, given how stressful grief can be. |
| Refer individuals considered to be at risk of a poor bereavement outcome, including those who are dealing with intense emotions, such as guilt or anger, to counseling. |
| Consider offering annual memorial events for staff and bereaved families to come together to remember patients who have died within the previous year. |
| Offer hospital-based bereavement support groups specific to the type of loss, e.g., spouse/partner groups, to promote a sense of connection and reduce feelings of isolation. |
| Suggest community-based group support as appropriate e.g., local hospice bereavement programs or faith-based groups, including recommendations for children and teenagers to organizations specializing in child bereavement, such as grief camps. |
Click here to view table as PDF
Condolences
Bereaved family members report benefit from hearing from the clinical team after the death of a loved one. However, many clinicians are unsure about providing bereavement outreach, especially because they tend to receive little training about bereavement care, including the offering of condolences. The TEARS acronym was developed to help facilitate the offering of condolences (Morris, Paterson & Mendu, 2020). It outlines the components of a condolence call that can also be adapted for writing condolence letters or cards (See Table 2).
Table 2: Condolence Guidelines: Components of a Condolence Call Using the TEARS Acronym.
|
Timing Ideally call the bereaved within the first 1-2 weeks Allow enough time to make the call so not to feel pressured or rushed If you don’t learn of the death immediately, it’s never too late to call or send a card |
|
Express condolences Expect emotion Express condolences: “I am very sorry to hear of ___’s death” Share a story about the patient – what you will remember or miss Emphasize the good job the family did in caring for patient, which helps if they are second-guessing their actions or decisions |
|
Ask Ask factual questions, which are usually easier to answer, especially if the bereaved is upset, e.g., “Have you family staying with you?” “Have the children gone back to school?” If appropriate, ask about the circumstances of the death: “Can you tell me about what happened at the end…?” Inquire about their coping – “How are you managing at the moment?” |
|
Recommend Provide psycho-education e.g., grief comes in waves; grief is unique Recommend that they see their family doctor Suggest individual or community based support Offer a team meeting at a later date to answer questions or to say goodbye to the team |
|
Say goodbye Decide ahead of time whether this call/card will be the final contact or whether you will be available for future contact. Examples include: “It was a privilege to care for _____and to meet you and your family. I wish you all the very best over the coming months.” “It was an honor to care for _____and to meet you. I am not sure whether our paths will cross again – I wish you all the very best.” “It was an honor to care for _____and to meet you and your family. You are always welcome to contact me in the future if questions arise.” |
Click here to view table as PDF
Conclusion
Grief is a normal yet painful response to the death of a loved one. How grief is expressed varies considerably among individuals and across cultures. While the majority of bereaved individuals adjust to the death of their loved one without professional help, grieving nonetheless remains a very isolating and painful experience. Clinicians are well positioned to support family members, both before and after the death of a patient, to help prevent a difficult bereavement outcome. Screening for risk factors, providing early support and accurate information, offering condolences, and the opportunity to meet with the clinical team after the death to answer any lingering questions, can help mitigate a complex or prolonged grief reaction.
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