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Care of the Critically Ill Child/Family

Terms in this set (24)

issue of EOLC in children
-causes of death include cancer, complications of prematurity, congenital anomalies, cystic fibrosis, HIV/AIDS, trauma, self-harm
-advances in technology have led to improved treatments, but chronic diseases increase risk of death
-most often children die in the PICU
-need to incorporate palliative care principles for children
palliative care
-cure is not possible
-manage symptoms and pain of the disease
-provide support to child and family
-promote optimal functioning and QOL
-child and family are unit of care
-death of a child is a stressful event for the family
-physical, emotional, social, and spiritual issues
-therapeutic, home-like environment
euthenasia
involves an action carried out by a person other than the patient to end the life of the patient suffering from a terminal condition
assisted suicide
someone provides the patient with the means to end his/her life and the patient uses that means to do so
when prognosis for a patient is poor and death is expected...
...it is ethically acceptable to withhold/withdraw treatment that may cause api and suffering and provide intervention that promote comfort and QOL
what physicians discuss with aprents
-child's age
-premorbid cognitive condition and functional status
-pain or discomfort
-probability of survival
-quality of life
important to make a shared decision-making process
parents
often unprepared to cope with their child's illness and to make a decision
-when both parents and physician realize that cure is unlikely, the will implement a DNR sooner, use less aggressive therapies, and provide palliative care
-if the child is an older minor, they should be involved in the decision
nurses
-most involved with families
-able to ensure the families know what options are available
-explore family's wishes
-answer questions honestly
-if they do not know the answer, be sure to find it
-remain neutral and avoid giving personal opinions
the critically ill child
-can perceive if there is something wrong
-deserve to be told the truth
-nurse should ask parents how they would like their child to be told of their prognosis
-what and how information is said to the child is very important
-speak on a child's developmental level, provide basic information directly, honestly, use simple, concrete, age-appropriate words
-help the child know s/he did not cause the illness, allow child to express feelings
-ask child to repeat what has been said
-encourage openness
response to dying of infants/toddlers
-separation from parents is a stress
-regress to less independent levels of behavior
-troubled by parent's responses
-provide the child with physical comfort, consistent providers, consistent routines, and familiar objects
response to dying of preschool children
-see death as a kind of sleep, something temporary
-think of illness and treatment as a punishment
-jealousy or guilt when a sibling is in the hospital
-play provides relief form feelings of grief
response to dying by school-age children
-have a deeper understanding of death in the concrete sense
-fear reason for illness and the consequences of the disease on their functioning, fear the process of death/dying
-fear the unknown
-need anticipatory preparation
-want some kind of control or power
response to dying by adolescents
-mature understanding of death, but do not think they will die as a young person
-difficulty coping with death
-least likely to accept cessation of life
seek group acceptance and independence from parental constraints
-may feel alone, support groups can be helpful
-nurses should allow for self-control and independence
-answer questions honestly, respect need for privacy, solitude, and personal expressions of their emotions
-avoid alliances with either parent or child
hospice philosophy
dying is a natural process, views the care of the dying patient as including management of he physical, psychologic, social, and spiritual needs of the family and patient
-goal of hospice care is for children to live life to the fullest without pain, with choices and dignity, in the familiar environment of their homes
pain and symptom management
-unrelieved pain is distressing for parents
-HCPs must communicate the goal and purpose of treatments (palliative rather than curative)
-impacted by family's views of QOL, religious and cultural values, and levels of acceptance of the terminal prognosis
-be aware of any potential side effects
-respect each family's choice in the child's care
-nonpharmacologic and pharmacologic intereventions
-use the least traumatic method of administration
-pain control is the highest priority
-pain meds are given on a regular schedule, extra doses for breakthrough pain
-relaxation, guided imagery, distraction
-addiction is not a factor
ethical principle of the double effect
an action that has a good and one bad effect is permissible if the following conditions are met:
-the action itself must be good, only the good consequences must be sincerely intended
-the good effect must not be produced by the bad effect
-there must be a compelling or proportionate reason for permitting the foreseeable bad effect to occur
educational needs
-teach families about various aspects of care that are provided to child
-helps families feel competent to care for a dying child
-avoid instructing parents too early in events that have not occurred
emotional support
-do not try to prevent parents' feelings
-recognize normalcy of emotions like anger, guilt, anxiety, and hopelessness
-encourage families to seek outside assistance
-arrange for respite care
religious and spiritual support
-helps the family/child cope with the dying process
-assess spiritual and religions needs, model comfort, facilitate the family's religious or spiritual needs
-avoid disclosing own's beliefs
-note signs of spiritual distress
-offer chaplaincy referral
sibling support
-depends on developmental level
-siblings may feel isolated and displaced because their parents spend most time with the sick child
-siblings may feel resentful, guilty, or ashamed
caregiver support
-nurse can identify ways for friends and community members to help
physical changes at the time of death
-increased sleeping
-loss of sensation an movement in lower extremities and progressing toward the upper body
-sensation of heat although body feels cold
-mottling of skin
-loss of senses
-confusion, loss of consciousness, slurred speech
-muscle weakness
-decreased urination
-loss of bowel and bladder control
-decreased appetite and thirst
-difficulty swallowing
-Cheyne Stokes respirations and death rattle
-prepare caregivers for these physical changes, inform them that this is normal and that the child is not in pain
emotional changes at the time of death
-children may want to leaves messages with children or reassure them that they are ready to die
-children might have visions
-death vigil as the time of death appears, child is rarely left alone, religious or spiritual rituals
postmortem care
-supportive presence
-facilitate the parents' ability to spend time with the child
-allow family time to say goodbye
-bathe and dress the body or ask if the parents want to participate
-contact the funeral home with the family is ready
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