Death and Dying

One thing in life is certain – we will all die. We tend to ignore this fact and find confronting the inevitability of dying uncomfortable. In working within a palliative care approach, however, you must be able to confront the fact of death and to discuss death and the process of dying with your colleagues and with your clients, their families and others as a regular part of your job. We all have our own ideas, beliefs and feelings about death and dying. These ideas may be based on our cultural traditions, religious and spiritual beliefs, and our personal experience. Awareness of our own values and beliefs is essential because we need to maintain a nonjudgmental approach if and when we are confronted with values and beliefs that are not the same as ours. This applies to all aspects of community services work and is especially important in palliative care.

Diagnosis

The impact of finding out that you have a life-threatening condition can be devastating, and the effects can last for a long time after the initial diagnosis. We will discuss the grieving process in more depth in a later topic, but for now we need to look at grieving as a response to the loss or threatened loss of anything that is significant to us. A diagnosis of a condition that is probably terminal involves many different potential losses, including loss of life itself, so it follows that the emotional, psychological, social, spiritual and physical impacts must be significant.

The Impact of Diagnosis

Physical

Physical responses may include symptoms of stress, anxiety and depression, such as changes in appetite, sleeping patterns and other physical responses. Social The diagnosis will also have an impact on those close to the person and on their social contacts. People often feel unsure of how to react when someone they know is diagnosed with a serious illness. This might mean that friends stay away, and that the person becomes socially isolated. The person’s social roles and status may also be affected; for example, a serious or terminal illness may mean the loss of valued roles such as occupation, and may affect family roles, friendships and intimate relationships.

Emotional

The person may experience a wide range of emotions such as fear, sadness, anger, and guilt or shame. Psychological - There may be psychological impacts on the person’s sense of identity or self-esteem, and the person may experience mood swings, feelings of hopelessness, despair and symptoms of depression.

Spiritual

During this process, the person often starts looking for meaning in what is happening to them. This might include reviewing their spiritual and religious beliefs and beliefs about the meaning of life, perhaps returning to earlier values and beliefs, or seeking new ones.

Our culture shapes our values, beliefs and perceptions of the world around us. Culture includes material culture or artefacts (objects and things such as furniture, buildings, machines, clothes, tools, works of art) and non-material culture (knowledge, technology, values, beliefs, attitudes, perceptions of the world and how it works, and ways of behaving and interacting with each other).

It can be difficult to become aware of all the aspects of our own culture, particularly those relating to beliefs, perceptions and ‘rules’ for how to behave, because we are immersed in our own culture every day and come to take it for granted. Sometimes we only become aware of aspects of our own culture when we encounter a different culture and begin to examine the differences.

Cultural, spiritual and religious beliefs about death and dying

Cultural, religious, and spiritual differences play a significant role in shaping how individuals perceive and approach death and dying. These differences influence beliefs, rituals, practices, and attitudes toward the end of life.

Here are some examples of how different cultures view death and dying:

1. Hinduism (Indian culture): In Hinduism, death is viewed as a natural part of the cycle of birth, death, and rebirth. Reincarnation is a fundamental belief, where the soul is reborn into a new body. Cremation is a common practice, as it is believed to release the soul from its current body to be reborn. Belief in reincarnation and cycle of birth and death. Cultural practices vary by region and sect. Diverse funeral practices, often cremation. Dying is viewed as a transition of the soul from one physical body to another. The religious belief circles around the transition of the soul after death based on karma and spiritual progress. Spiritually, death is seen as a transition, not an end Liberation from cycle of rebirth is the ultimate spiritual goal.
2. Buddhism (Various cultures): Buddhism teaches the impermanence of life. Death is seen as a transition to another form of existence. Funerals and memorials in Buddhist cultures often involve chanting, meditation, and rituals that help guide the deceased on their spiritual journey. Emphasis on impermanence and change. Diverse practices influenced by cultures. Cultural variations in funeral practices Death are seen as a transition to another form of existence. Funerals and memorials in Buddhist cultures often involve chanting, meditation, and rituals that help guide the deceased on their spiritual journey. Dying is seen as a transition to another form of existence, and the process of death is seen as a natural progression. The religious beliefs are around the emphasis on the Four Noble Truths and eight fold path Acknowledgment of death's inevitability and teaching on non-attachment. Spiritually there is contemplation of death as part of meditation. Reflection on impermanence and suffering and emphasis on letting go of attachments.
3. Christianity (Western cultures): Christian views on dying can vary among denominations. Many Christians believe in an afterlife where the soul goes to heaven or hell based on their faith and actions in life. Death is seen as a passage to eternal life with God or a separation from Him, depending on one's beliefs. Belief in an afterlife and resurrection Mourning traditions vary by denomination Varied funeral practices, Burial or cremation, religious ceremonies. Religious believes are based on Salvation through faith in Jesus Christ Belief in heaven, hell, and final judgment Unction for the dying Prayer for the dead, Mass for the departed. Spiritually, Hope in resurrection and eternal life. Comfort in faith during the dying process Belief in God's mercy and forgiveness
4.  Islam (Middle Eastern and various cultures): In Islam, death is viewed as a natural part of life, and the focus is on preparing for the afterlife. The deceased is typically buried within 24 hours, facing Mecca. Mourning practices include prayer and support for the grieving family.
5.  Judaism (Jewish culture): In Judaism, death is seen as a part of God's plan, and the focus is on honouring the deceased and comforting the bereaved. Funerals are simple and held as soon as possible. Shiva, a mourning period of seven days, involves communal support and prayers for the deceased.
6. Native American (Various indigenous cultures): Many Indigenous cultures view death as a continuation of existence in the spirit world. Rituals involve honouring the deceased's spirit, and there is often a deep connection to nature and the land.
7. African Traditional Religions (African cultures): Death is often seen as a transition to the spirit world, where ancestors continue to play a role in the lives of the living. Rituals and ceremonies celebrate the life of the deceased and honour their connection to the community.
8. Chinese Culture: In Chinese culture, death is often viewed with a strong emphasis on respecting ancestors. Ancestor worship is common, and rituals and ceremonies are held to ensure the deceased's well-being in the afterlife.

These examples illustrate the rich diversity of cultural perspectives on death and dying, showcasing the ways in which beliefs, rituals, and practices shape the approach to this universal human experience.

Cultural and Religious Requirements Around Death and Dying

Different cultural and religious traditions have different requirements for how to behave and respond to death and dying. These requirements also change over time as culture changes and evolves.

Again, you are not expected to know all these variations in detail but understanding such differences will help you to show respect for your clients’ cultural, religious and individual beliefs, traditions and requirements during the process of dying and after their death. This will be particularly important for supporting family and others during this time and after the person dies.

Spiritual and religious beliefs are also important and are part of a person’s culture. Religious and spiritual requirements may include rites and ceremonies as the person is dying, after death, and for disposal of the body. For example, Christian traditions have last rites to help the person’s soul after death; Buddhist traditions believe the soul lingers for a while after death and is later reincarnated; most traditions include washing the body after death in preparation for burial or cremation.

You can research your client’s culture and religion and their traditions. You can also ask your clients and families about their preferences and requirements. This is good practice and shows interest, respect and empathy. Your role may also include helping with practical arrangements.

Grief is usually defined as a response to experiencing a loss of some significance. This can be any kind of loss, from the death of a loved one, breakdown of a relationship, loss of important possessions, loss of status, migration, failure to achieve a goal, and many other experiences, including being diagnosed with a serious illness and facing imminent death.

The more significant the loss, the more intense the response is likely to be.

Grief affects all aspects of our being and may last for a short time, for many years or may never be resolved. Grief is more than simply ‘feeling sad’.

Signs and symptoms of grief can include:

1. Emotional Responses:

• Sadness: Overwhelming feelings of sadness and sorrow are hallmark symptoms of grief.
• Anger: Grief can also trigger anger, often directed towards oneself, others, or even the deceased.
• Guilt: People may experience guilt about things they said or did, or didn't say or do, before the loss.
• Anxiety: Grief can lead to heightened anxiety, including worry about the future or fear of experiencing more loss.
• Depression: Grief and depression share many symptoms, such as feelings of hopelessness, low energy, and changes in appetite and sleep patterns.

2. Physical Symptoms:

• Fatigue: Grief can be physically exhausting, leading to persistent tiredness and a lack of energy.
• Aches and Pains: Some people experience physical symptoms like headaches, stomach-aches, or muscle tension.
• Sleep Disturbances: Grief can disrupt sleep patterns, leading to insomnia or excessive sleeping.
• Loss of Appetite or Overeating: Changes in eating habits, either reduced appetite or overeating, are common.

3. Cognitive and Behavioural Symptoms:

• Difficulty Concentrating: Grief can make it challenging to focus on tasks or make decisions.
• Memory Problems: Some people may have difficulty remembering things or events.
• Withdrawal: Grieving individuals may withdraw from social activities or isolate themselves.
• Searching and Yearning: A strong desire to see or talk to the deceased person may be present.
• Preoccupation with Loss: Thoughts and memories of the loss may dominate one's thinking.

4. Spiritual and Existential Symptoms:

• Questioning Existence: Grief can lead to questions about the meaning and purpose of life.
• Searching for Meaning: People may seek a deeper understanding of the loss and its significance.
• Spiritual Crisis: Some may experience a crisis of faith or a re-evaluation of their spiritual beliefs.

5. Social and Relationship Changes:

• Social Isolation: Grieving individuals may isolate themselves from friends and family.
• Changes in Relationships: Grief can strain relationships or lead to a re-evaluation of social connections.
• Feeling Abandoned: Some people may feel abandoned or unsupported by others.

6. Physical Manifestations of Emotion:

• Crying: Frequent crying or bouts of uncontrollable tears are common.
• Sighing or Breathlessness: Some people experience sighing or shortness of breath.

It's important to note that these symptoms are a normal response to loss and grief, and they may come and go over time. Grief is a highly individualised process, and there is no specific timeline for how long it should last. If someone is struggling to cope with their grief or if their symptoms are severe and persistent, seeking support from a mental health professional or a grief support group can be helpful. Additionally, providing support and understanding to someone who is grieving is essential in helping them navigate through this challenging time.

Stages of Grief

The Kubler-Ross model, also known as the Five Stages of Grief, was developed by psychiatrist Elisabeth Kubler-Ross in her 1969 book "On Death and Dying." Later, it was expanded to include two additional stages by Kubler-Ross and her collaborator David Kessler. These stages are not necessarily experienced in a linear or fixed order, and individuals may move back and forth between them. It's essential to understand that grief is a highly individualised process, and not everyone will go through all these stages or experience them in the same way.

The seven stages are:

1. Shock and Denial: This initial stage involves shock and a sense of disbelief. Individuals may have trouble accepting the reality of the loss, and they may feel numb or in a state of denial.
2. Pain and Guilt: As the shock wears off, the pain of grief begins to set in. Feelings of sadness, anger, and guilt may emerge. People may question whether they could have done something differently or feel guilty for not doing more.
3. Anger and Bargaining: During this stage, individuals may experience intense anger. They might direct their anger at themselves, others, or even the person who has died. Bargaining may involve making deals or promises in an attempt to reverse or mitigate the loss.
4. Depression: In this stage, the full weight of the grief becomes apparent, leading to deep sadness and a sense of despair. People may withdraw from social interactions, experience changes in appetite and sleep patterns, and lose interest in activities they once enjoyed.
5. The Upward Turn: As time passes, the intensity of grief may begin to subside. Individuals may start to adjust to life without the person or thing they have lost. This stage can involve small glimpses of hope and the ability to envision a future without constant pain.
6. Reconstruction and Working Through: During this stage, individuals work on rebuilding their lives. They may find new ways of living without the presence of what they've lost. This can involve creating new routines, establishing new relationships, or finding meaning in the loss.
7. Acceptance and Hope: In the final stage, individuals come to terms with the reality of the loss and find a way to move forward. While the pain may never completely disappear, they learn to live with it. They can also experience a renewed sense of hope for the future.

It's important to note that these stages are not a strict roadmap for everyone's grief journey. People may move through them in a different order, skip stages, or revisit them at various times. Grief is a highly individualised process, and it's essential to allow individuals the time and space to grieve in their own way and at their own pace. Additionally, not everyone will experience all seven stages, and some may experience other emotions and reactions that are not covered by this model.

Watch

Watch the following video about The Seven Stages of Grief.

In your work in palliative care, you will need to use effective strategies for managing your own reactions to grief as well as for supporting people experiencing grief and loss .

Supporting someone who is experiencing grief requires a mixture of practical and emotional support.

Here are a few simple guidelines: 

• Always work within the boundaries of your job role, and make sure that you explain these boundaries clearly.
• Follow a relevant code of ethics or code of practice.
• Follow your organisation’s policies, procedures and practices.
• Ask the person what you can do and how they would like you to support them, to provide them with choices and control.
• Allow the person to take the lead and identify their own needs and preferences.
• Use active listening skills and other communication skills to show empathy; remember that body language is a powerful means of communication. Simply sitting quietly next to someone, or placing a hand over theirs, can convey strong messages of empathy.
• Let the person talk about the loss and their feelings if they wish to – do not avoid painful subjects.
• Manage your own emotional responses so that your emotions do not ‘take over’ and become a distraction.
• Maintain a non-judgmental attitude.
• Respect and follow relevant cultural traditions and requirements for expressing sympathy, offering condolences, and providing support and assistance.
• Allow the person to grieve in their own way.
• Offer practical assistance, such as help with making funeral and other arrangements, doing the shopping, housework and other routine tasks.

Personal Strategies for Managing reaction to grief and loss

1. Acknowledge Emotions: Allow yourself to feel the emotions that arise, whether it's sadness, anger, or confusion. Suppressing emotions can prolong the healing process.
2. Seek Support: Reach out to friends, family, or a support group. Talking about your feelings and memories can be therapeutic and provide a sense of connection.
3. Self-Care: Engage in activities that promote physical, emotional, and mental well-being. This could include exercise, proper nutrition, getting adequate sleep, and engaging in hobbies.
4. Express Yourself: Find healthy ways to express your emotions, such as through journaling, art, music, or other creative outlets.
5. Professional Help: If the grief becomes overwhelming or leads to prolonged distress, consider seeking professional help from therapists or counsellors experienced in grief counselling.
6. Establish Routines: Maintaining some level of routine can provide a sense of stability and control during a tumultuous time.
7. Mindfulness and Meditation: Practices like meditation and mindfulness can help manage anxiety and stress by promoting relaxation and self-awareness.
8. Celebrate and Remember: Create rituals or ways to celebrate the life of the person you lost. This can provide a positive way to remember and honour them.
9. Give Yourself Time: Grief doesn't have a set timeline. Be patient with yourself and allow the healing process to unfold naturally.
10. Avoid Major Decisions: Try to avoid making major life decisions during the immediate aftermath of a loss. Grief can cloud judgment, and it's best to make significant choices when you're in a clearer emotional state.

Remember, the journey through grief is unique for each individual. These strategies can serve as a foundation for navigating the difficult path of grief, but it's important to tailor them to your personal needs and circumstances.

Communication Strategies and Skills

You have probably heard it said before that communication skills are the foundation for establishing trusting, supportive and professional relationships with your clients. This is just as true in providing palliative care and support as it is in any area of community services. Your relationship with the person and their family will be a key factor in determining how effective your services are, and your communication skills will be a key factor in building this relationship.

Here is a list of various communication strategies that you can use:

1. Active Listening:

• Paying full attention to the speaker means putting aside distractions and focusing entirely on what the person is saying.
• Maintaining eye contact and open body language conveys that you are fully engaged in the conversation.
• Nodding or providing verbal cues, such as "I understand" or "Tell me more," lets the person know you are actively listening and interested in their thoughts and feelings.

2. Empathetic Responses:

• Reflecting back the person's feelings shows that you understand and empathise with their emotional experience.
• Phrases like "I can imagine that must be difficult for you" validate their emotions and demonstrate your empathy.

3. Open-Ended Questions:

• Encourage the person to share more by asking questions that cannot be answered with a simple "yes" or "no."
• Questions like "Can you tell me more about how you're feeling?" invite deeper exploration of their thoughts and emotions.

4. Respect Silence:

• Silence can provide space for reflection and allow the person to gather their thoughts.
• It's crucial to respect the person's pace in responding, as some individuals may need more time to express themselves.

5. Use of Verbal and Nonverbal Cues:

• Using a gentle and soothing tone of voice can help create a comforting atmosphere.
• Offering a reassuring touch, if appropriate and welcomed, can convey empathy and support.

6. Reflective Summaries and Validation:

• Summarising what the person has said helps confirm your understanding and allows the person to feel heard.
• Acknowledging and validating their emotions and experiences by saying, "It's okay to feel the way you do" shows empathy and acceptance.

7. Avoid Judgment:

• Refrain from making value judgments about their feelings or decisions, as this can create barriers to open communication.
• Maintain a non-judgmental attitude, even when discussing difficult topics, to foster trust and openness.

8. Provide Information and Ask for Preferences:

• Offer clear and accurate information about their condition, treatment options, and care.
• Tailor information to their level of understanding to ensure comprehension.
• Include them in decisions about their care by asking for their preferences and involving them in the decision-making process.

9. Acknowledge Cultural Differences:

• Being aware of cultural beliefs and values is crucial for respecting and accommodating diverse perspectives.
• Show respect and sensitivity to their cultural preferences to ensure that care and communication are culturally competent.

10. Share Personal Feelings:

• Sharing your own feelings, when appropriate, can create a sense of connection and vulnerability.
• For example, acknowledging the depth of their care for a loved one can help build rapport and trust.

11. Collaborative Language:

• Using inclusive language that implies partnership fosters a sense of shared decision-making and collaboration.
• Creating an environment where individuals feel comfortable discussing their wishes for care and end-of-life planning is essential for their autonomy and well-being.

These communication strategies not only help individuals feel heard and understood but also contribute to building trust, empathy, and effective relationships in various personal and professional settings, particularly during challenging times.

Emotional Support and Empowerment

Facing a life-threatening illness can make a person feel helpless and powerless, so it is important to address these feelings and offer the person opportunities to regain some control and feel more empowered. Again (as always) effective communication skills are an essential element of this.

Emotional Support

Expressing negative and painful feelings to people close to us such as family and friends can be difficult, so your role in listening to and acknowledging these feelings is important. Opening up to a caring professional and having feelings recognised and acknowledged can provide a valuable option for letting off steam without the fear of upsetting or hurting those close. Your role is not to solve your client’s problems. Providing emotional support can be as simple as listening, acknowledging the person’s feelings, and showing empathy, without trying to come up with a solution. This is one of the reasons that using active listening skills is important.

Maintaining confidentiality and a non-judgmental attitude is also important in establishing a trusting relationship so that your client feels safe and comfortable in expressing difficult emotions and experiences which they might feel ashamed, embarrassed, or reluctant to show to others.

Empowerment

There are many things you can do to help your client to feel empowered and in control in what is essentially a very frightening situation. When we feel powerless, vulnerable and fearful, regaining some control over what is happening can increase our feelings of safety and security.

Empowering strategies include:

1. Provide accurate information about rights, services, resources, supports and options so that your client can make informed choices and decisions.
2. Use client-centred or person-centred approaches to include your client in making decisions and choices.
3. Provide accurate information about your role and its boundaries, and about your responsibilities, knowledge and skills, so that your client has a clear idea of what to expect from you.
4. Ensure that your client understands their rights and responsibilities, and how to raise issues, problems or complaints about services.
5. Accept your client’s rights to make their own decisions and choices and show respect for these.
6. Offer opportunities for your client to make choices and decisions and work to make sure that these are implemented.
7. Communicate openly and honestly with your client and make sure that the decision-making processes used by service providers are transparent and accessible to your client.
8. Follow an appropriate code of ethics or code of practice and ensure that your client understands your commitment to this.

Facilitating open communication

Open communication is important for developing honest, trusting and supportive relationships. Open communication means that everyone can express themselves honestly and respectfully without fear of judgment. Open communication is two-way communication with everyone free to ask and answer questions and to give each other honest feedback. In supporting palliative care, your clients and their families must feel able to raise difficult issues, discuss painful topics, and express painful feelings. They must also feel free to disagree and to express their own opinions.

Establishing and agreeing upon clear ground rules for how you will communicate with each other at the beginning will avoid later misunderstandings and help to create a safe, supportive environment. It is important for everyone to understand what to expect of each other.