13. Death and Dying

Question 1

what is the definition of death?

Answer 1

the irreversible cessation of circulatory and respiratory functions, or when all structures of the brain have ceased to function

Question 2

what is the five stage theory of dying?

Answer 2

1. denial
2. anger
3. bargaining
4. depression
5. acceptance

Question 3

what was the impact of the five stage theory of dying?

Answer 3

• revealed a range of emotional reactions to death
• highlights the need for (counselling) support
• addressed barriers and taboos related to death

Question 4

what are some criticisms of the five stage theory of dying?

Answer 4

• there is no “correct” way to respond to death
• stages aren’t ordered or required
• other responses missing – anxiety, curiosity, hope, relief

Question 5

what is the difference between positive/negative words used by people who are dying vs. people who imagine dying?

Answer 5

• people who were actually dying use more positive words and less negative words than people who are imagining dying
  
  • in both blog posts and death row statements
• in blogs, there is an increase in percentage of positive words as death nears

Question 6

what are some factors that influence the experience of death for an individual and their loved ones?

Answer 6

• cultural factors
• trajectories and nature of death
• individual differences
• social network and support
• medical system

Question 7

how does culture affect the experience of death? how has it changed?

Answer 7

• people learn the social meaning of death from the language, arts, and death‐related rituals of their cultures
• in the middle ages people believed in tamed death - viewed death as a transition to eternal life
• then invisible death - the preference that the dying retreat from the family and spend their final days confined in a hospital setting
  
  • social death - the process through which the dying become treated as non‐persons by family or health care workers
• death with dignity - proposed that the period of dying should not subject the individual to extreme physical dependency or loss of control of bodily functions
• good death - a death in which they can have autonomy in making decisions about the type, site, and duration of care they receive at the end of life

Question 8

what are the different trajectories of death?

Answer 8

sudden death - individual is at high level of functioning until death suddenly occurs (accident or unanticipated medical event)
**terminal illness **- functioning at a high level until the disease progressed (people have advance warning)
health crisis/organ failure - death occurs over a prolonged period with a series of dips and recoveries
frailty - people have low level of functioning, immediate cause of death can be an acute illness developing against backdrop of general loss of function

Question 9

how do the different trajectories of death impact the experience of death?

Answer 9

• sudden death - very hard on the family, no plans and no goodbyes
• terminal illness - difficulty emotional experience for the family, but there is time to say goodbye and prepare
• health crisis, organ failure - no specific time frame, health goes up and down
• frailty - functioning is low and decreases more, usually in alzheimer’s and dementia, sometimes can be met with relief

Question 10

what is anorexia-cachexia syndrome?

Answer 10

• individual loses appetite (anorexia) and muscle mass (cachexia)
• majority of cancer and AIDS patients experience cachexia

Question 11

what individual differences impact the experience of death?

Answer 11

• age
• personality
• coping strategies
• stressors
• previous experiences with death

Question 12

how does a persons social network and support impact their experience of death?

Answer 12

• helps to be surrounded by friends and family
• nobody wants a lonely death
• can be helpful if people around them have experience with death

Question 13

how does the experience of death affect a person’s identity?

Answer 13

• at the end of life, people use identity assimilation to deny as much as possible
  
  • at one point they must accept reality and the process of identity balance may start to allow them to face this fact
• the way that people die can also come to define their identities in ways that no other life changes can

Question 14

how do people look back on their lives at the end of their life?

Answer 14

• legitimization of biography - people attempt to see what they have done as having meaning, and they prepare the “story” of their lives by which they will be remembered in the minds of others
• awareness of life’s end triggers an intense period of self-evaluation
  
  • important component of Erikson’s concept of ego integrity

Question 15

how does the terror management theory affect people when they think of death?

Answer 15

• the idea that people try to minimize and manage the things that scare them
• can result in better health habits, be more focused on intrinsic rather than extrinsic goals, show more compassion
• those who lack the ability to cope with the stress may experience greater levels of anxiety and lower well‐being

Question 16

what was Sara’s story and experience of death in the “being mortal” video shown in class?

Answer 16

• was diagnosed with stage 4 lung cancer while 9 months pregnant
• doctors wanted to treat her in every way possible
• put her in treatments rather than allowing her to be comfortable in her last months
• having misled hope that she’d get better led to too many treatments that only made her feel more sick
• doctor was uncomfortable with accepting that his patient would die

Question 17

what does the curative/disease focus consist of?

Answer 17

1. diagnosis
2. treatment
3. cure
4. extending life
   - often engage in futile care

Question 18

what does the palliative/hospice care focus consist of?

Answer 18

• patient and family identify unique end-of-life goals
• assess how symptoms, treatment, issues are hindering reaching goals
• interventions to assist in reaching end-of-life goals
• focus on quality of life & closure

Question 19

what was Norma’s story and experience of death in the “being mortal” video shown in class?

Answer 19

• had to have a conversation about how she was dying
• the conversation was too late and she died a couple days after
• palliative care is focused on increasing quality of life for patients during the end of their lives but couldn’t happen since the conversation was late
• even at the end, Norma was in denial of the fact that she was dying

Question 20

what does good palliative care strive to do?

Answer 20

• manage pain and other distressing symptoms
• helps patients live as actively as possible
• uses a team approach to address the needs of patients and their families
• offers a support system to help the family cope during the patient’s illness and in their own bereavement
• integrates the psychological and spiritual aspects of patient care
• will enhance quality of life and may also positively influence the course of illness

Question 21

what are levels of depression and anxiety like in standard care vs. palliative care?

Answer 21

• cancer patients assigned to standard care or early palliative care
• more depression and anxiety reported by patients in standard care compared to early palliative care
• patients with early palliative care survived longer
• standard care sometimes leads to more treatment that can make patients more sick

Question 22

how/why does the frequency of hospital visits change when patients are in palliative care?

Answer 22

• less hospital visits when a patient is in palliative care
• could be because family recognizes what dying looks like and they know it is expected
• they don’t panic and rush loved ones to the hospital
  
  • patient can be more peaceful and remain at home

Question 23

what is the prevalence of palliative care in canada?

Answer 23

only 16-30% of Canadians receive palliative care

Question 24

what are the barriers to access of palliative care?

Answer 24

• lack of patient understanding or awareness
• limited resources and funding
• limited training and few specialized doctors
• reluctance to discuss dying and palliative care
• recent immigrants, people of colour, indigenous people are less likely to access palliative care

Question 25

what was Jeff’s story and experience of death in the “being mortal” video shown in class?

Answer 25

• jeff’s doctors offered him more treatments but he knew they were pointless
• he made decisions about how he wanted the end of his life to look like
• communicated his goals with medical team and with family
• was able to die peacefully in his own home surrounded by family

Question 26

what are the decisions that need to be made in advanced care planning at the end of life?

Answer 26

• what kind of care is preferred?
• where will care be received?
• what are one’s personal wishes/goals
• who will make decisions if the individual is unable to make them or communicate them?
• decisions should be made well in advance and be discussed, documented, and communicated

Question 27

what is an advance directive?

Answer 27

• advance directive document describes your preferences for future care if you are unable to speak for yourself
• facilitate communication among patients, health care staff, and families; protect an individual’s resources; alleviate anxiety; and reduce the chances of the patient being treated against their wishes

Question 28

what are some options for care at the end of life?

Answer 28

• refusal or withdrawal of treatment
• palliative sedation to ensure comfort
  - may be accompanied by the withdrawal of artificial hydration and nutrition

Question 29

what are some barriers to advanced care planning on the patient and family caregiver level?

Answer 29

• cultural beliefs
• lack of emotional preparedness between patients and carers
• patient/carers don’t want to know relevant important information
• patients prefer to defer to doctors
• cognitive impairment
• diagnosis of serious illness = less likely to plan

Question 30

what are some barriers to advanced care planning on the health care provider level?

Answer 30

• prognosis uncertainty (disease trajectory)
• lack of communication skills and preparedness of MD
• difficulty assessing patient receptiveness to discuss ACP
• shorter duration of patient/MD relationship
• overworked and time pressured doctors

Question 31

what are the two types of medical assistance in dying (MAID)?

Answer 31

1. clinician-administered medical assistance in dying
2. self-administered medical assistance in dying

Question 32

what is the criteria for qualification of MAID?

Answer 32

1. be eligible for government funded health insurance in Canada
2. be 18 or older
3. have grievous or irremediable condition
4. make a voluntary request for MAID that is not the result of outside pressure
5. give informed consent to receive MAID

Question 33

what counts as a grievous or irremediable condition?

Answer 33

1. have a serious or incurable illness, disease, or disability
2. be in an advanced state of irreversible decline in capability
3. experience unbearable physical or mental suffering or state of decline that cannot be relieved
4. their natural death has become reasonably foreseeable (NO LONGER A REQUIREMENT - 2021!!)

Question 34

how can people with dementia or cognitive impairments consent to MAID?

Answer 34

• rule used to be that patients must be capable of providing informed consent at the time that MAID is provided
• we can now waive final consent if we know cognition will decline by the time we need MAID
• but, we are in discussion about advanced requests where death is not foreseeable in discussion

Question 35

what are some possible changes to MAID that are being discussed?

Answer 35

there are a group of experts examining evidence for MAID among three groups
1. mature minors
2. those who want to make an advance request because their condition will limit their future decision making
3. those who have a mental disorder as their sole underlying medical condition

Question 36

can people with mental illness use MAID?

Answer 36

• eligibility delayed until March 2024 (delayed again to 2027!)
• options already exists in some countries
• debates & research continue in Canada

Question 37

how does the “being mortal” video show that the decisions made impact the experience of aging?

Answer 37

• experiences of dying of cancer differ depending on how well we are able to accept death
  
  • the decision to continue treatment when it is only detrimental vs. accepting what time is left
• age also may have made a difference in likelihood to choose treatment over acceptance
• doctor’s comfort with accepting that their illness is unfixable affects how they proceed
  
  • less denial, more open conversation about how to proceed to ensure quality of life
• there is a difference in feeling like a patient vs. feeling like a person/family

Question 38

what is bereavement?

Answer 38

• the process during which people cope with the death of another person
• more likely to take place in later adulthood
  
  • people have an increased risk of losing their loved ones
• bereavement is a biopsychosocial process
  
  • physiologically - places stress on the body
  • psychologically - experience intense range of emotions
  • socioculturally - alters the individual’s position in the family and community

Question 39

what is anticipatory grief?

Answer 39

• caregivers believe they can benefit from working through the loss before it occurs
  
  • doesn’t reduce bereavement reaction, but prepared the person for the death emotionally and practically

Question 40

what is the attachment view of bereavement?

Answer 40

• the bereaved can continue to benefit from maintaining emotional bonds to the deceased individual
• the deceased person becomes a part of the survivor’s identity

Question 41

what is the dual-process model of coping with bereavement?

Answer 41

• the practical adaptations to loss are regarded as important to the bereaved person’s adjustment as the emotional
  
  • practical adaptations: set of life changes that accompany the death, including taking on new tasks or functions, called the “restoration” dimension
  • people are able to adjust to bereavement by alternating between the two dimensions of coping
  • people seem to vary in their response to loss on the basis of their attachment style

Question 42

what is flexible adaptation?

Answer 42

• the capacity to shape and adapt behaviour to the demands of the stressful event
  
  • thought to be useful in coping with loss

Question 43

what is repressive coping?

Answer 43

• the painful event is expunged from conscious awareness
  
  • also important to be able to do when coping with loss