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
