Supporting patients who are bereaved

What you need to know

• Acute grief is distinct from depression and other psychiatric disorders

• Symptoms of grief include prominent yearning and longing that is focused on the deceased person, and a strong desire to be around other people

• Bereaved patients should have the opportunity to talk about their loved one, their loss, and how they have been coping

• Answer patient questions or concerns about medical care that their loved one received, or about the last days of life

• Encourage the patient to confront loss and reminders, and at the same time begin to create a new life

A doctor consults with a 69 year old patient and notes that she seems distant and sad. It is three months since her partner died. When the doctor asks how she is managing she says the house feels empty without him and she feels low. She no longer sees any reason to cook and struggles to clean. She longs for companionship but refuses invitations from her friends because being with them makes her miss her partner. Her grandchildren are a pleasure but they ask about grandpa, so she doesn’t want to see them. Tearfully, she talks of dreading her future.

A woman presents with sleep disturbance and severe headaches a month after her son died by suicide. She believes that a good mother would have saved him and she is plagued by guilty self-recrimination. She seems irritable and has been fighting with her husband. She has been finding it very hard to care for her two living children.

Loss of a loved one can be very painful. When seeking support, some people turn to their doctor. Because of their pivotal role in the community, physicians can provide excellent support for bereaved people and can often direct them to additional resources.¹ Medical professionals who see bereaved patients consulting for symptoms of grief or about another medical problem have the opportunity to make a positive difference in their experience of loss and grief. This article discusses ways to understand people’s response to grief and adaptation to loss of a loved one, and offers suggestions for strategies to provide support to bereaved patients. Most bereaved people will find a way to adapt to their loss over time, with support from people in their natural environment, and perhaps health care professionals. We highlight symptoms to watch for that might suggest more specialist help is needed.

Assessment of bereaved patients

Data from clinical trials as well as patient and clinician experience suggest the following topics might be important to assess.

Ask about the person who died,² the specific circumstances surrounding the death, and how the patient has been coping since the death. Explore the range of feelings³ and challenges the bereaved person is experiencing and how the loss is affecting their daily activities, social interactions, and work related activities. Explore the effectiveness of their support system.

Recognise typical grief symptoms

Grief is a mix of signs and symptoms in response to loss, and each person’s experience is unique. How, when, where, and with whom these symptoms are experienced and expressed vary depending on the circumstances, context, and consequences of the loss. Culture, ethnicity, and spiritual affiliation can affect how grief manifests and the person’s strategies for coping. Symptoms can fluctuate over time, as a person adapts to a loss and grief becomes integrated into their life. Common symptoms of acute and integrated grief are shown in Box 1.

Box 1: Typical acute grief symptoms

Acute grief is dominant and disruptive, characterised by

• intense yearning, longing, sorrow, emotional pain, physical symptoms like heart palpitations, butterflies in the stomach, frequent yawning, dizziness/fogginess

• feelings of disbelief, difficulty comprehending the reality of the death

• insistent distracting thoughts of the deceased, trouble focusing attention, forgetfulness

• loss of sense of self or sense of purpose and belonging, and feeling aimless, incompetent, without feelings of wellbeing

• feeling disconnected from other people and ongoing life.

When grief has become integrated, symptoms emerge intermittently and are characterised by

• Comprehension of the reality and consequences of the death

• A mix of emotions with bittersweet positive emotions usually dominant

• Thoughts and memories of the deceased are accessible but not preoccupying

• Restoration of sense of self and sense of purpose and belonging; feelings of competence and wellbeing

• Interest and engagement in life and other people are re-established; happiness seems possible.

Be aware of the general picture of grief, but try not to have preconceived expectations about the specific constellation of symptoms or their time course. When patients talk about their experiences after bereavement listen for three themes:

1. Accepting the reality of the death.

2. Envisioning a future with purpose and meaning and the possibility of happiness.

3. Reaffirming a meaningful sense of connection to the person who died.

Be alert to storylines that deviate into a place of excessive avoidance and/or frequent intense or protracted expressions of anger, self reproach, or despair.

The experience of acute grief is often intense and disruptive. Patients might worry about whether what they are experiencing is “normal.” They might be surprised at the uncontrollability and intensity of emotions and the difficulty paying attention to things as they normally do.

Data from nine observational studies suggest that people can experience a sense of presence of the deceased person and even overt visual or auditory hallucinations of them.⁴ These are not necessarily a sign of a serious mental disorder as many bereaved people report these experiences.

Sometimes a bereaved patient can experience a profound sense of despair and express a wish to die. Establish whether the wish to die is accompanied by any active suicidal thinking.

Assess for the presence of stress related mental health problems ⁵

Observational data indicate that bereavement can trigger a psychiatric disorder. For example, death of a loved one is associated with increased risk of major depressive disorder⁶ that can be confused with acute grief. Box 2 gives tips on how to differentiate grief and depression. It is important to differentiate the two, as the management strategies are different. Acute grief needs understanding, support, and monitoring, but major depression might need additional treatment.

Box 2: Distinguishing grief and depression

• Unlike depression, grief includes prominent yearning and longing

• The capacity to experience positive emotions is maintained in grief and compromised in depression

• Symptoms are experienced most profoundly when the patient is focused on the deceased person, who is strongly missed

• Grieving people tend to want to be with people, whereas depressed people tend not to. Sadness related to social loss draws us toward other people, while sadness related to feelings of personal failure does not⁷

Bereavement can also trigger anxiety disorders, alcohol abuse, mania,⁶ and post traumatic stress disorder.⁶ Patients might need referral to a mental health professional if there is concerning substance use or self harm, suicidal thoughts, or other serious behavioural disturbance.

Concerns about medicalisation of grief

• Acute grief can be highly distressing and disabling, but grief should not be medicalised. Grief is the body’s natural response that evolves as a bereaved person adapts to their loss

• Complicated grief occurs when adaptation is impeded. It can be reliably diagnosed and effective short term treatment is available

• While there is no universal time frame for adaptation to loss, evidence for complicated grief has been found across cultures after a minimum 6 months

• Draft diagnostic proposals by the World Health Organization International Classification of Diseases, 11th edition (ICD-11), and the Diagnostic and Statistical Manual of Mental Disorders (DSM), 5th edition, have not yet been accepted and there is ongoing debate about specific criteria for prolonged or complicated grief

• Pending resolution of these debates, the ICD-11 proposal¹³ is a simple, validated way to identify clinically significant, treatable problems with adaptation to loss

Assess for the possible onset or worsening of physical illness. Bereavement activates physical pain centres in the brain, and triggers a physiological stress reaction. Observational data have shown that bereaved people are at increased risk of physical disorders ^{5 8} including cardiovascular illness⁹ and cancer. Bereavement can trigger or exacerbate existing sleep disturbance.¹⁰ Exercise and eating are also frequently disrupted, and bereaved people might forget to take prescribed medications.

The stress and physical toll of grief can (rarely) produce stress cardiomyopathy or exacerbate underlying heart disease, disrupt immune functioning, or worsen any ongoing medical condition. Grief can also manifest as anxiety with palpitations, clammy skin, and an increased heart rate, and can mimic the symptoms of heart disease. Ask about the person’s sleep, eating, exercise, and social relationships.

How to offer support

It is possible even during a relatively short conversation to offer support. It might be helpful to explain grief to a patient in non-clinical terms. Observational data suggest the following additional strategies to guide the discussion. Figure 1 shows expected responses to acute grief and suggested management approaches in primary care. A leaflet for patients is included as a supplementary file with this article.

Offer empathic listening

Offer a place where the patient can talk and feel that someone is listening. Bereaved people might want to talk about their deceased loved one with others, including with clinicians who care for them. Discussions with bereaved people should be warm, inviting, and open ended. It can be difficult to bear witness to the pain of loss without trying to fix the problem.

Manage symptoms

Offer management for any physical or psychiatric disorders identified. Encourage a healthy lifestyle and provide advice on sleep disturbance if relevant, but avoid giving medication where possible. Suggest monitoring symptoms with the patient for a period of time, and if considerable time passes with no attenuation of grief intensity, consider whether there are barriers to adaptation to their loss, such as excessive avoidance and/or frequent intense or protracted expressions of anger, self reproach, or despair.

Help patients adapt to their loss

Help patients to accept the reality of the death, restore interest and enthusiasm for ongoing life, and reaffirm a sense of connection to the deceased. In this way, grief can eventually find a place in the patient’s life along with meaningful engagement in ongoing activities.

Explain that it can be helpful to both confront the pain of the loss and also allow themselves to set it aside. For example, encourage people to gradually confront reminders of the loss such as belongings of the deceased, notifying colleagues of the deceased, attending social events as a single person, and making new friends. At the same time, remind bereaved patients that their lives matter too. Encourage the person to start to consider what they might want for themselves in the future. This conversation might be jarring in the beginning.

Identify those who are likely to struggle

Patients can benefit from referral to a grief counsellor when the circumstances or consequences of the death are especially difficult, such as suicide¹ or child loss.¹¹ Those whose natural support system is inadequate might benefit from peer or faith support, or grief counselling. If acute grief persists for periods longer than a year, and is associated with substantial impairment in functioning, a diagnosis of complicated grief might be warranted, with referral to specialist mental health services.¹² Patients who have difficulty adapting to their loss can experience prolonged grief accompanied by troubling thoughts, dysfunctional behaviours, and difficulty regulating their emotions. Physicians can sometimes clear up a misconception that is preoccupying to the patient. For example, encourage and address questions or concerns about medical care that their loved one received, or about the last days of life, where appropriate. At times this might not be possible. For example, it can be difficult to explain a stillbirth.¹¹ Encouraging patients to gradually confront situations they are avoiding can also help. For example, they might make plans to start going back to a pub that they fear will evoke memories that will make them miss the deceased more.

If problems persist or increase in intensity, a diagnosis of complicated grief might be warranted and referral to psychotherapy might be indicated. There is evidence from randomised controlled trials and eight smaller studies from Australia and western Europe for efficacious treatment.¹³ These studies use an approach that is outlined in a recent article.¹⁴ Based on these existing data, if multiple symptoms continue to interfere with day to day life more than six months after the loss then non-specialist clinicians might consider using draft ICD11 guidelines to diagnose prolonged or complicated grief and encourage patients to seek help.

Clinicians’ response to grief

Clinicians should be aware of their own wellbeing when dealing with death and supporting people through grief. Clinicians might also grieve when a patient who they have cared for dies, particularly if they feel responsible in some way, or had cared for the patient for a long time. Seek appropriate support and consider counselling from colleagues with mental health expertise.

Education into practice

• How do you typically frame consultations in which grief is addressed? Can you think of anything you might alter after reading this article?

• How comfortable do you feel discussing the circumstances of a patient’s relative’s death as a mechanism to help the patient better come to terms with it?

• What questions might you ask to distinguish between depression and acute grief in recently bereaved patients?

• How might you offer a lay explanation of what normal grief is?

• How have or would you deal with your own feelings of grief following the death of a patient whose care you have been involved with?

How this article was created

Preparation of this manuscript included a review of the authors’ personal and professional experiences and a wide range of papers in the literature.

How patients were involved in the creation of this article

This paper is co-authored by a patient. She considers the following topics to be important for clinicians to know and they have been covered in the article as a consequence of her involvement:

• Common psychological and physical symptoms of acute grief

• How to talk to a bereaved patient about their loss

• How to evaluate the patient’s progress of adaptation to their loss