Section 9: Care For The Terminally Ill Child And Family

Front 1

What are the most common asked questions after a sibling dies:
a. Why did my sister die? (or brother)
b. What happens after you die?
c. Why did my sibling die? (Is it my fault?)
d. Will it happen to me?
e. all of the above

Back 1

e.

Front 2

What are the five subconcepts within the concept of death?

Back 2

1. univeraslity - death is unavoidable and predictable
2. irreversibililty
3. nonfunctionality - fxn ceases
4. causality
5. noncorporeal continuation

Front 3

Between what age do children begin to understand the concepts of universality and irreversibility of death?

Back 3

Ages 4-6

Front 4

At age 7, what concepts of death do children begin to understand?

Back 4

- nonfunctionality
- causality

Front 5

T/F
Children < 4 y/o view death as a biological event.

Back 5

False.

they view it as a behavior - for example going to sleep

Front 6

Understanding of Death and Grief Reactions Age
0-1 years

Back 6

no concept
- react to grief of family members and changes in their routine

Front 7

Understanding of Death and Grief Reactions Age
1-2 years

Back 7

- temporary and reversible
- react to grief of family, separation from caregiver, and changes in surrounding
- fussy, clinging, biting, hitting, turning away, withdrawl, regression (in speech, toileting, eating and drinking), physcial illness
- move seamlessly between playing and grieving

Front 8

Understanding of Death and Grief Reactions Age
3-5 years

Back 8

- being less alive
- @ age 4-5 some may understand universality and irreversibility
- magical thinking
- may feel responsible/feel guilt
- interpret words literally > if one says going to sleep> child may fear going to sleep
- grief can be seen in regressive behaviors, sleeping, eating disturbances, physical symptoms, intensifaction of normal fears, emotional outburst, irritability

Front 9

T/F
A preschoolers greatest fear is being seperated from their parent

Back 9

T

Front 10

Understanding of Death and Grief Reactions Age
6-11 years

Back 10

- adult like understanding
- What to know what will happen to the body after death?
- may personify death (ghost)
- may be teased by peers as different b/c of loss
- difficulties eating, sleeping, physical symptoms, feat of abandonment, worry about te health and safety of other family members, difficulty concentrating, problems in school, and emotional outbursts
- decreased sense of security

Front 11

At what age do children have an adult understanding of death?

Back 11

7

Front 12

Understanding of Death and Grief Reactions Age
12-20 years

Back 12

-search for spiritual meaning
- intense emotions reactions to death: anger, withdrawl, crying, insomnia, difficulties in school, physical illnesses, risk taking behaviors

Front 13

Four Tasks of Grief Work:

Back 13

1. telling the story of their loved one
2. identifying their emotions and expressing them
3. finding meaning in the experience and the loss
4. making the transition from their relationship with the physical presence of the deceased person to a relationship based on hx, memories, and the notion of what kind of person they might have become

Front 14

Facilitating the Grief Process in children includes:

Back 14

- knowing children grieve longer than adults
providing a safe/supportive/trusting enviroment
- concrete terms/avoiding euphemisms
- grief work through art & play
- monitor physical signs and emotions

Front 15

When do you refer a child for mental health during the grieving process:

Back 15

- complicated grief
- destructive responsess
- persistent blame/guilt
- SI
- risk taking behavior
- isolation
- depression
- disordered eating
- poor school performance
- addictions

Front 16

What nursing assessments for grief ?

Back 16

- assess family
- assess grief rxn
- use art and play
- Identify cultural and spiritual needs
- Identify current understandings of death and misconceptions, and clarify

Front 17

What are nursing interventions for grieving children?

Back 17

- promote communication
- teach common rxn
- explain developmental understanding
- provide info resources
-facilitate memory making

Front 18

What are the four dimensions of terminal illness ?

Back 18

1. terminal phase
2. terminal period
3. terminal event
4. bereavement

Front 19

What is terminal phase?

Back 19

- usually last 2-3 months of life
-cure or remission viewed as no longer feasible

Front 20

What is the terminal period?

Back 20

usually last 2-3 weeks of life

Front 21

What is the bereavement?

Back 21

-indefinite period of mourning
- begins before death

Front 22

T/F
Pain in end of life is often rapid in onset.

Back 22

True

Front 23

What are the goals for pain management in terminal illness?

Back 23

- sleep undisturbed by pain
- relief from pain when resting
- free of pain when movign or being handled

Front 24

The WHO developed a ________ approach to pain management, which goes from _______ to __________.

Back 24

stepwise
nonopioid > opioid

Front 25

What adjuvant therapy is used along with analegesia?

Back 25

- NSAIDs
- corticosteriods
- antidepressants
- anticonvulsants
- muscle relaxasnts
-anxiolytics

Front 26

What clinical symptoms do terminally ill children present with bone marrow failure?

Back 26

- anemia
- thrombocytopenia

Front 27

With terminal ill children, what should be at the bedside in cause of hematemesis or hemoptysis?

Back 27

- bleeding kit
- appropriate analgesic
- sedative

Front 28

Causes of seizures at end of life:

Back 28

1. brain tumors/ metastases
2. CNS bleeding caused by thrombocytopenia/hypocoagulability
3. tumor growth > ICP

Front 29

How to treat end of life seizures?

Back 29

-Diazepam (Valium) : rectal or IV
-Midazolam (Versed): intranasal or rectal
or if on anticonvulsants
increase dose

Front 30

Causes of dyspnea at end of life:

Back 30

- pulmonary disease
- infection
- maliginant infiltration
- pleural effusion
- cardiac fxn
- obstruction of superiod vena cava
- anemia
- ascites
- pain in chest wall

Front 31

Palliative Measures for Dyspnea include:

Back 31

- radiation
- draining ascities
- relaxation techniques
- re-positioning
- drugs
- increase ventilation
- O2
-suctioning

Front 32

T/F
Opioids can assist in decreasing the sensation of air hunger.

Back 32

True.

reduce anxiety and alleviate pain , reduce sensitivity to changes in blood oxygen and CO2 tensions

Front 33

What drug patch can be applied for reducing secretions?

Back 33

Scopolamine hydrobromide (Isopto-Hyoscine)

Front 34

Fever in end of life can be tricky, what should be considered in end of life care?

Back 34

- infection versus disease process
- will infection respond to abx or antifungals
- can meds be administered in setting of choice
- toxicity associated with administration of medication

Front 35

Antiemtics work at work sites in the body:

Back 35

- vomitting center in the medulla
- neurotransmitters receptors in the gut wall
- vestibular pathways

Front 36

End of life issues that contribute to constipation:

Back 36

- dec'd GI motility
- poor diet
- low fluid intake
- decr'd physical activity
- muscle wasting
- medications

Front 37

End of life issues Tx for constipation:

Back 37

- PREVENTION is key
- doccusate sodium, lactulose, senna, bisacodyl > suppositories > enemas

Front 38

What are treatable cause of anorexia at end of life?

Back 38

- n/v
- constipation
- mucositis
- depression
-excessive portions of food

Front 39

T/F
IV hydration and TPN are usually appropriate choices for end of life.

Back 39

FALSE

Front 40

Restlessness is a result of pain, anxiety or sleeplessness and should be evaluated promptly, what durg can be given close to death for agitation and confusion?

Back 40

benzodiazepine

Front 41

What are the nursing assessments for physical end of care for children?

Back 41

- personalize management of end of life care
- explore fears of clinical symptoms
- realize physical symptoms produce emotions
- care should be compatible with family wishes

Front 42

What are the nursing interventions for physical end of care for children?

Back 42

- prioritize comfort
- families preferences
- non-invasive, palliative approach
- team approach
- communication

Front 43

What is the primary role of a nurse in the care for a terminally ill child?

Back 43

- help present and explain care options
- explain side effects of interventions
- explain physical changes
- provided therapeutic psychosocial support

Front 44

What are psychosocial considerations for families with terminally ill children?

Back 44

- current roles in the family
- altered roles of family members near death of child
- families previous hx with death or other loss
- families coping pattern
- rituals important to family
- identify extra stress and loss for the family

Front 45

At end of life, Financial concerns for families include:

Back 45

- leave or absence from job
- limited insurance coverage
- hospice benefits are not often covered by insurance

Front 46

T/F
Siblings often are the last family member whose loss is acknowledged.

Back 46

True

Front 47

Parents with dying children may need help in the following areas:

Back 47

1. palliative management of pain/symptoms
2. hospice options
3. home based care options
4. support groups
5. disclosure of information
6. plans for funeral

Front 48

Grandparents experience a double loss when a grandchild dies:

Back 48

1. loss of grandchild
2. suffereing experienced by their own child

Front 49

Spiritual consideration at end of life:

Back 49

- to find meaning
- express feelings of guilt, forgiveness, and reconcilation
- rituals and traditions
- spirituality may be challenged during the crisis

Front 50

T/F
Cancer patient's families sometimes have increased difficulty with low tech interventions at the time of death.

Back 50

True

so used to high tech interventions

Front 51

When to refer to hospice:

Back 51

prognosis of more than 6 months especially when the disesase is incurable

Front 52

Bereavement is:

Back 52

that state of having suffered a loss, and grief is the emotional reaction to the loss.

Front 53

Stages of Bereavement are:

Back 53

Kubler-Ross

Denial, anger, bargaining, depression, and acceptance

Front 54

The tasks of bereavement are:

Back 54

- accepting the loss
- experiencing the pain
- adjusting to an enviroment without the decreased person

Front 55

Parental Bereavement Tasks are:

Back 55

- facing the finality of loss
- remembering past events /experiences
- processing feelings of failure
- re-building a family without child
- discovering healthy ways to continue the realtionship with deceased child on a spiritual and emotional level

Front 56

What are some unique features of parental grief?

Back 56

- unnatural order of family life
- unable to support each other or surviving children
- assault on personal identity
- 2nd year may be more difficult than the first (first year just feel numb)

Front 57

What are the factors that influence Professional grief of healthcare workers?

Back 57

- enviroment
- intrapersonal
- interpersonal

Front 58

What are some of the physical symptoms that a healthcare work might exhibit in response to grief?

Back 58

sleep disturbances, GI, wt loss or gain, fatigue, lack of strength, hyperactivity, restless, heart palpations, loss of sexual desire, hair loss SOB, crying, nervousness, rension, irritability, impatience

Front 59

What are some of the psychological symptoms that a healthcare work might exhibit in response to grief?

Back 59

out of control, vunerability, inadequate, low self esteem, loneliness, isolation, overwhelmed, guilt, numbness

Front 60

What are some strategies for dealing with grief?

Back 60

-recognize death is inevitable
-find some meaning
- develop a personal sense of spirituality
- increase ability to care for physical and psychosocial aspects of care
- acceptance
- seperate work and personal life
- debrief with colleagues
- maintain health
- learn about grieving
- seek professional help when needed

Front 61

Kaplan proposes a model for professional grief that includes:

Back 61

Dynamic, nonlinear components:
-emotional tensions between strong feelings and professional caregiving
- personal grief
- physical and emotional symptoms

Front 62

Papadatou describes the professional grieving process as:

Back 62

interaction between an individual's lifestyle and his or her own work style (enviroment and workplace rules)

all of these include formal, informal, written or unwritten)

Front 63

Papadatou suggests we must undergo that following tasks while grieving:

Back 63

- making meaning
- loss transcendance - discovering behavior, thoughts, and emotions that allow reinvestmetns in life and in oneself

Front 64

According to Saunders and Valente, tasks for the bereaved professional are:

Back 64

- finding meaning
- restoring or maintaining personal and professional integrity and self esteem and elminating self blame
- responding to and managing feelings
- realigning relationships with family, collegues, and patients/families

Front 65

Moral distress is :

Back 65

knowing the right thing to do but institutional or other constraints make it difficult to pursue and desired course of action.

Front 66

Corley states that moral distress impacts: patients ? nurse? organizations?

Back 66

patients? increased discomfort or suffering
nurse? resignation, burnout, decision to leave the profession
organization? high nurse turnover, dec'd quality of care, low pt satisfaction

Front 67

End of life issues that can produce moral distress for families:

Back 67

- shift from cure to comfort
agressive tx that prevents pallative care
- decision making and communication
- conflicting priorities
- differing opinions
- inability to keep promises to dying child
- inability to find meaning in suffering
- differing coping styles

Front 68

A professional healthcare worker may respond to moral stress by all the following except:
a. Anger
b. Helplessness
c. Disillusionment
d. Use of sarcasm
e. Acceptance
f. Avoidance/withdrawl
g. Burnout

Back 68

e. Acceptance

Front 69

Strategies for Dealing with Moral Distress:

Back 69

- increase knowledge of different cultures
- clarificaiton of personal beliefs
- be able to recognize moral dilemmas
- Learn places in institutions and resources within
- recognize and discuss moral distress

Front 70

Autonomy is:

Back 70

involves the patient's and family's right to make choices regarding medical and supportive care.
- evaluate if developmentally able

Front 71

Beneficence is:

Back 71

- "to do good"
- promote the best interests of patients

Front 72

Nonmaleficence is:

Back 72

- "to do no harm"
- try not to place a burden on the patient or family

Front 73

Justice is:

Back 73

the fair allocation of resources and avoidanc eo fdiscrimination in care provision.

Front 74

Double effect is:

Back 74

a situation requires that the desired outcome for a patient has the risk of a negative effect.

Front 75

Fidelity is:

Back 75

implies that the medical professional places their patient's best interest first when considering options.

Front 76

Legal issues re: end of life issues are determined at the _____ & _______ level.

Back 76

state
institutional

Front 77

Common end of life legal issues are:

Back 77

- DNR orders
- transport of the corpse
- notification of when a child dies
- pain medication: who can prescribe, amount of narcotics that can be prescribed

Front 78

T/F
Autopies are mandatory in all states if a child dies at home.

Back 78

False

Varies from state to state