4b - Death, Dying & Bereavement Flashcards
What are some important aspects of adjustment to illness or injury?
- becoming ill can be a shock
- can affect self-image, sense of security
- being healthy is the norm
To what is adjustment needed to disease?
- to symptoms and disability
- maintain healthy emotional balance
- learn about the disease, self management
- feeling vulnerable
- preserving a satisfactory self-image
- sustaining relationships
- preparing for uncertain future (e.g. don’t know how long they will live for)
Challenges in adjusting to disease
• Adjusting to symptoms and disability
• Maintaining a reasonable emotional balance
• Preserving a satisfactory self-image and sense of
competence
• Learning about symptoms, treatment procedures and self-
management
• Sustaining relationships with family and friends
• Forming and maintaining relationships with healthcare
providers
• Preparing for an uncertain future
The Self Regulatory Model (Leventhal, 1993)
Stage 1: Interpretation (e.g. I have headache - what is causing this?)
Stage 2: coping (e.g. I will drink plenty of water and taking some paracetamol)
Stage 3: Appraisal (e.g. the water and paracetamol helped me)
Interplay with
a) representation of health threat (identity, cause, timeline, consequence, cure/control)
b) emotional response to health threat (fear, anxiety, depression)
a) and b) interplay with stages 1, 2 and 3
What is the link between long term illness and mental health?
- significant RF for developing depression (if you have 1 chronic condition you are 2-3x more likely to. develop depression; if you have 3 or more chronic conditions you are 7x more likely to develop depression.
- depression doubles the chances of having CHD; also increases the mortality of CHD by 50%
- people with bipolar disorder or schizophrenia live 16-25 years shorter than general population.
- 30% people in England have a chronic condition and 30% of them have a mental health condition as well
- 20% people in England have a mental health condition and 46% of them have a chronic illness.
- Adults with both physical and M/H problems are much less likely to be in employment
Positive adaptation and benefit finding
- some people fall apart because of a diagnosis and others grow in response to a chronic condition
- Psychological distress is not inevitable – growth is possible too
- Growth is associated with less distress in the short-term and better physical and mental health overall (Barskova & Oesterreich, 2009)
- 60-90% of people with HIV or cancer report positive growth (Sawyer et al., 2010; Shand et al., 2015)
- Pioneers: Shelley Taylor (Taylor & Brown, 1988); Richard Tedeshi & Lawrence Calhoun (Tedeshi & Calhoun, 2004)
Narrative based medicine
- putting more emphasis on listening to the pople’s narratives, particularly in palliative care -> use the narratives to improve clinical care (Greenhalgh & Hurwitz, 1998)
- The events surrounding chronic illness, positive and negative changes, become part of people’s story
- Millions of examples of people describing their experience of illness (e.g., Books, blogs, TV, film, social media) and these “stories” or “narratives” have a number of functions
- there are pre-existing illness narratives e.g. in social media or films.
Illness narratives - function?
• Transform events and construct meaning from the illness
• Help people to reconstruct their Hx to incorporate the illness and reconstruct
their identity to retain a sense of self-worth in the face of illness
• Help people explain and understand their illness
• Relate the illness to their values and life priorities
• Make illness a collective experience
Loss in chronic illess
- loss of physical function
- pleasure
- goals
- hopes
- aspirations
- enjoyment
- health
- relationships
- goals
- normal lifestyle
Existential issues in chronic illness
- very important
- issues around death and dying
Healthcare perspectives of death and dying
- ~ 60% of people die in hospital
- ~3% say they want to die in hospital
=> there is a great disparity
- Most people would prefer to die at home or in a hospice
- Ethical issues:
• Medicine is rightly focused on how best to “treat disease” and “cheat death”
• Just because you “can” doesn’t always mean that you “should” and that’s where decisions sometimes get very complicated
Where do people die? (statistics)
2001 – 2010:
- Hospitals (57%)
- Home (19%)
- Care Homes (17%)
- Hospices/Elsewhere (7%)
Gao et al., 2014
Palliative care
- Founded on providing terminally ill people with compassionate care
- Addressing medical, psychological, social and spiritual aspects of dying
- Relieving/managingsymptoms(e.g.,pain, breathlessness) rather than curing disease
- Collaborative approach with honest communication
- Empowerment – control and choice is paramount
- “It becomes more about the biography, not the biology” (Prof Rob George, Consultant physician palliative care, GSTT)
- But…tension regarding the ethical, moral and legal opposition and comparison’s made to “euthanasia”
What are people’s priorities when asked what they would like if they were terminally ill?
- Improve quality of life for the time they had left (57% - 81%)
- Only 2% said that extending life was most important
Higginson et al 2013
Home palliative care
- effective and preferred by many
- cost effective
- majority of people prefer to die at home
- study with people with CHF, COPD, HIV/AIDS, MS among other conditions
- examined the difference this made for people in terms of issues for patients towards the end of life (e.g. pain) and
family distress - Home palliative care:
- Doubles their chances of dying at home
- Helps to reduce the symptom burden
- Does not increase grief for family/caregivers after death
- Above benefits does not raise cost
- Recommendation: Patients who wish to die at home should be offered home palliative care
Gomes et al 2013
Individual perspectives to death and dying
● Realisation of mortality can create strong thoughts & feelings
● Dr. Elisabeth Kubler-Ross became internationally known in 1969 for her book Death and Dying
● Her work has become associated with “loss” more generally and is a popular theory within the bereavement literature
● From interviewing dying clients she outlined five reactions:
- Denial
- Anger
- Bargaining
- Depression
- Acceptance
Bereavement stages (Dr Elisabeth Kubler Ross)
- Denial
- Anger
- Bargaining
- Depression
- Acceptance
Denial stage
● The person may think “This isn’t really happening”
● They may lie about the situation and tell themselves that this is just temporary and everything will be back to normal soon
● It is often used as a psychological defence in an attempt to cushion the impact of the source of grief
Anger Stage
● The person may think “why me?” or “how could God do this to me?”
● The person feels generalised rage at the World for allowing something like this to happen
● They feel isolated and furious that this is happening to them
● They think it’s unfair and may feel betrayed
● Outbursts of anger in unrelated situations can occur
Bargaining stage
● The person thinks “If I do this, I can make it better, I can fix things.“
● One may feel guilt and feel it is their responsibility to fix the problems
● They make an attempt to strike bargains with God, spouses, HCPs e.g. “I’ll be a good person, if I get another chance”
Depression stage
● The person thinks “my heart feels broken” or “this loss is really going to happen and it’s really sad”
● At this stage, the person is absorbed in the intense emotional pain that they feel from having their world come apart
● They can be overwhelmed with feelings of helplessness and sadness
● “Anticipatory grief”
Acceptance stage
● The person thinks “this did occur, but I have great memories” or “it is sad but I have so much to live for and so many to love”
● The loss is accepted and we work on alternatives to coping with the loss and to minimise the loss
What is anticipatory grief?
- a feeling of grief occurring before an impending loss
- Typically, the impending loss is the death of someone close due to illness
- This can be experienced by dying individuals themselves
- can also be felt due to non-death-related losses like a scheduled mastectomy, pending divorce, company downsizing or war
The embedded nature of Stage Theories in Western culture
● Linear progression – gives a sense of conceptual order to a complex process – proving a degree of predictability & control
● An overwhelming cultural desire to “make sense” of the uncertain
● Developed at a time when limited literature on death & dying existed
● Applied to a number of different situations (including bereavement)
What is a weakness of stage theories?
EXAM RELEVANT
● Stages are prescriptive and place patients in a passive role
● Do not account for variability in response (e.g., “people dealwith things differently”)
● Focus on emotional responses and neglect cognitions and behaviour
● Fail to consider social, environmental or cultural factors (e.g., a patient in a positive and supportive environment is likely to exhibit very different stages than those who are not)
● Pathologise people who do not pass through stages
Wortman & Boerner, 2011
Stage theories and the problem of pathologising
● Distress or depression is not inevitable:
– Many people report significant and valuable changes from the experience of the illness (Weinman et al., 1999)
– Some even report benefits (e.g., “Posttraumatic Growth” Tedeshi & Calhoun)
● “Acceptance” might not be achieved
– Reaching a state of resolution may not be possible for some
– Complex cognitive and emotional responses may continue to be present (Parkes & Weiss, 1983; Shadish et al., 1981)
● “Good” patients vs “Bad” patients (Taylor, 2006)
Bereavement perspective of death and dying
● Dying does not occur in isolation – it affects family, friends and the community
● “Bereavement” refers to the situation of a person who has recently experienced the loss of someone significant in their lives through that person’s death
● Grief is a normal BPS reaction to loss (e.g., sleep, anger, work)
● How we grieve is strongly influenced by cultural customs and norms
(differences seen in many cultures)
● Range of established theoretical approaches which consider responses to the process of bereavement
● Perspectives include general stress and trauma theories, general theories of grief and models of coping which are specific to bereavement (Stroebe & Schut, 2001)
Responses to bereavement
After 1 year
- 15-50% minimal grief
- 50-85% common grief (disrupted social and occupational functioning + positive experiences, cognitive disorganisation, dysphoria, health deficits)
After 2 years
- 85% minimal grief
- 15% chronic grief (major depression, generalised anxiety, PTSD)
Chronic grief
● Chronic grief: people are more severely affected
● Can be associated with worsening mental health (e.g.,
depression, anxiety)
● More likely to occur if:
– The death was sudden or unexpected
– The deceased was a child
– There was a high level of dependency in the relationship
– The bereaved person has a history of psychological problems, poor support and additional stresses (e.g., financial)
Treatment of chronic grief
● Psychological interventions:
– Little effect on mood, grief or physical symptoms
– Some impact in high risk individuals such as those with existing mental health problems (Jordan & Neimeyer, 2003)
● Support appears to help bereaved people generally but does not buffer them against the grief (Stroebe et al., 2007)
● Suggests Bereavement is a process that most people will have to go through
● Support or intervention may be a comfort, but is unlikely to “solve” their grief
