Chapter 3: Grief and bereavement
This is devastating. Am I doing the right thing? Why is this happening to him? How will I live without her? I feel empty inside. Everyone tells us something different - I don't know who to believe anymore.
When you respond to a palliative care call, you may encounter various expressions of grief. These responses can vary in degree or intensity. Below are common grief reactions. Click to learn more.
Sadness includes a range of feelings:
- Mildly blue, down, low.
- Hopeless or despairing
- Having thoughts of self-harm or suicide
Most people with an advanced illness and many family members will experience some form of psychological distress. Many individuals will cope with the experience relatively well. Others will have fluctuating levels of distress. A relatively small number of people will become depressed.
The patient - It’s common for patients to be fearful of their last days and hours. They’re often anxious about how well their pain and other symptoms will be managed. They may be concerned about the people they leave behind and how they will fare. Panic attacks aren’t unusual.
The family - Family members often fear they won’t be able to respond to the dying person in a way that feels useful. They may also fear the dying process and how they’ll respond when death happens.
Common fears and worries can include:
- Is the care provided by myself and others falling short?
- Will the person suffer as death approaches?
- How will I make decisions on behalf of this person if they’re no longer conscious or competent to do so themselves?
- What will life be like without them?
- How will I carry on without them?
Heightened anxiety or fear may lead to impulsive or reckless behaviour. Anxiety can also influence decision making.
Many patients and family members experience a lack of emotions or a sense of numbness when significant events occur during serious illness and dying. Feelings of disbelief can occur at times of transition – for example, when the patient’s health unexpectedly deteriorates and a family member calls 911. This numbness can last for extended periods of time and in varying degrees. It’s a form of self-protection when people feel emotionally overloaded. Shock may enable them to keep functioning as they manage their way through a difficult event.
The patient - Temporary difficulties concentrating and staying organized are to be expected. For the patient, fatigue, the distraction of other symptoms, and being overcome by all that happens at the end of life can impact focus and concentration.
The family - Many family members are somewhat "scattered" or disorganized due to:
- The emotional drain of coming to terms with the inevitability of death.
- The enormous demands of caring for someone dying at home.
Anger can have many origins. At the end of life, it frequently arises from feelings about the unfairness of life, or seeing one’s future altered by events beyond one’s control.
The patient - Being diagnosed with a life-threatening illness certainly entitles the person to some degree of anger. The challenge for anybody who’s angry is finding constructive ways to attend to the anger without paying the price for its expression. Patients may need to vent from time to time. However, anger has a way of taking over. Sometimes it may take a passive form like bitterness, or a more active form like rage.
The family - Sometimes families receive mixed messages from healthcare professionals. They may become upset because they don’t know who or what to believe. Not knowing can cause anxiety, which in turn can trigger anger. Some families feel they've been let down by the health system which causes feelings of powerlessness and anger. People will frequently express frustration before they express fear. An episode of rage often masks a deep anxiety, or is a signal of deeper feelings like despair. Anger can manifest in yelling, storming out of the room, blaming or making threats.
For additional information about cultural variations in grief reactions, see Module 6, Supporting the patient and family - Chapter 2, Respecting and responding to cultural practice and traditions.
You may also experience grief in responding to these calls. For more information, see Module 7 - Responding to the stresses of paramedicine.