Week 7- caring in the last days and hours Flashcards
The momentum change
used as a general guide
- if someone is declining month to month they prob have months to live
- if someone is declining week by week prob have weeks to live
something that can quickly change status
- infection
- falls
support people in responding to questions
- acknowledge and validate the question
- explain the reason for the question
- explore the family’s understanding of the situation
Family is often ready to discuss end of life changes when the dying person’s score on the PPS decreases from
30-20%
actively dying: the EOL care checklist
- review
- refer
- consider
- ensure
- discontinue
- arrange
- arrange
- arrange
- leave
- Review a patient’s goals of care, preferred place of care, and what to do in an emergency.
- Refer the patient to home nursing if not already arranged.
- Consider hospice palliative care referrals/consults.
- Ensure that the required forms are completed (No CPR, MOST DNR M1,
- Notification of Expected Death in the Home).
- Discontinue non-essential medications.
- Arrange for subcutaneous (SC)/transdermal medication administration or a drug kit to be placed in the home when a patient is no longer able to take medications by mouth
- Arrange for a hospital bed +/- pressure relief mattress.
- Arrange for a Foley catheter, as needed. Can be uncomfortable without one
- Leave an order for a SC anti-secretion medications (atropine, glycopyrrolate) think before you give, some say can cause heart racing when more alert
general principles for palliative care in children (6)
- can co-occur with curative care
- child and family seen as a unit
- attention to physical psychological, social, and spiritual needs
- interdisciplinary team approach
- ongoing assessment and clarification of priorities important
- QOL is subjective
infants
toddlers
preschoolers
school age
adolescents
concept of death
no concept of death
death is temporary
think its a punishment, also like toddlers
understand death is final and worry about pain for themselves and others
realize its final and concerns about pain for themselves and others, grieving the future lives they expected
The most common mode of death in the pediatric intensive care unit
is the limitation or withdrawal of life sustaining therapy (LST)
types of LST forgone
- Mechanical Ventilation
- Vasoactive Infusions
- Renal Replacement Therapies
- Invasive Catheters
- Extracorporeal Membrane Oxygenation
- Antibiotics
- Intravenous Fluids
- Feeds
Factors contributing to Parents’ decisions to forgo LST (5)
- when treatment no longer benefits
- child voices want to stop treatment
- QOL decreases
- increased suffering
- financial burden
nurses role in decision making of forgoing LST
-recognize
-assess
-facilitate
- assess
- provide
- Recognize child’s need for palliative care
- Assess the emotional and spiritual needs of child and family
- Facilitate advance care planning
- Assess and Manage the child’s pain and symptoms
- Provide bereavement care to the child’s family
ideal decision making process
shared between the caregiver team, patient, & family
Reaches a consensus on a medical plan that is in accordance with the values and choices of the patient and family
Begins early during the ICU admission with a multidisciplinary meeting which:
- Uses nontechnical language
- Allows ample time for questions
- Considers the patient’s & family’s personal values and goals of therapy
- One of negotiation
- Is documented
how do we recognize a dying patient (5)
- decreased appetite: The body lacks energy to digest food
- mottled extremities: blood shunted to vital organs
- breathing changes
- incontinence
- agitation
changes as death occurs
- decreased physical strength and increased drowsiness
- reduced intake and difficulty swallowing
- delirium and confusion
- agitation and restlessness
- unresponsiveness
- irregular breathing
- congested breathing
- changes in skin colour and temperature
- incontinence or lack of output
- dry eyes
- open mouth
- muscle twitching
Supporting the Dying Person with Decreased Physical Strength & Increased Drowsiness
Adapt care plan to meet the changing needs and priorities
Supporting the Family
Decreased Physical Strength & Increased Drowsiness
- Acknowledge that it is common for people to sleep more as death nears
- Offer education and clarification if family is concerned that medication is causing drowsiness
- Explain that visits can be exhausting & support family to limit visitors or lengths of visits
Support:
Supporting the Dying Person with Reduced Intake & Difficulty Swallowing
- Consult SLP as needed & offer thickened fluids
- Remind them to swallow
- Do not give anything by mouth if unable to swallow or choking/coughing
- provide mouth care regularly to keep mucous membranes moist
Supporting the Family with Reduced Intake & Difficulty Swallowing
- Inform family of changes in person’s intake & ability to swallow
- Normalize decreased intake and eventually no intake as part of dying process
- Support and provide education around family’s concerns
- Empower family to provide mouth care
Supporting the Dying Person with Delirium and Confusion
- Promptly report to care team
- Reorient & reassure
- If appearing comfortable in delirium, do not reorient
- Offer soothing comfort measures
- If appropriate, explore with the person what they are seeing
Supporting the Family with Delirium and Confusion
- Acknowledge how stressful it can be
- Share information on approaches
- Encourage caregivers to take time for themselves
- Offer supports such as:home support workers, bedside vigil, respite or social work
Supporting the Dying Person with Agitation and Restlessness
Consider Causes:
- Pain
- Full bladder
- Constipation
- Emotional or spiritual issues
Address promptly
Supporting the Family with agitation and restlessness
- Acknowledge fatigue and stress
- Encourage ongoing communication with care team (medications, etc)
- Share information
-restlessness is common (reassure family that its common and do something about it)
-Provide and model comfort measure
-Offer opportunities for rest and breaks.
Supporting the Dying Person with unresponsiveness
(2)
- Reposition regularly to protect skin & increase comfort
- Continue to talk with person as though they can hear you
-introduce yourself as you enter
-Explain your purpose
-Talk as you provide care
Supporting the Family with unresponsiveness
(4)
- Encourage family to talk with person
- Share information, help families to feel connected through storytelling, music, quiet presence
- Suggest the possibility of placing a phone at the person’s ear or connecting via video with other family/friends
- Massage, touch or energy work with person or family
Supporting the Dying Person with irregular respirations
- Position to support breathing
- Provide verbal reassurance
Ex: that’s good, you’re doing just fine, just breathe easily
Supporting the Family with irregular breathing
- Model re-positioning and coaching
- Acknowledge and educate that this is normal in last days and hours
- Provide 24 hour contact information
- Differentiate between distressed breathing and irregular breathing
- Demonstrate & encourage mouth care
Supporting the Dying Person with congested breathing
- Report first signs of congestion & observations & consult for prn orders
- Provide calm & reassuring presence
- Give frequent mouth care, suction prn
- Reposition for easier breathing & pooling of secretions
Elevate or lower head of bed
Place pillows under arms
Turn on side, place towel under mouth
Supporting the Family with Congested Breathing
- Acknowledge that sound can be upsetting
- Provide education
- Provide contact numbers
Supporting the Dying Person with Changes in Skin Colour & Temperature
- Provide clean clothing and bedding
- Offer cool cloths or extra bedding
- Check skin temperature regularly
Supporting the Family with Changes in Skin Colour & Temperature
Acknowledge concerns for comfort and educate re: not overloading with blankets
Share information:
- Changes in body temperature may indicate infection or circulatory system is shutting down
- Skin color and body temperature may change as death nears
Incontinence or lack of output
Output decreases as kidney function declines, some prefer incontinence supplies (bowel/bladder) or catheter
Open mouth
Last breaths have a variety of patterns. Sometimes the person might open their mouth as if to take their last breath
dry eyes
Persons eyes may be open partially open or shut, seeing whites of eyes can be distressing for family
muscle twitching
Sudden twitching of muscles in arms or legs (myoclonic twitching)
5 signs death is near
- decreased appetite (forced nutrition may worsen the condition, digestion requires energy, induces nausea, break down fats so ketones build up and can cause euphoric state)
- mottled extremities( shunting blood away from arms and legs, late sign so death is near)
- breathing changes ( irregular, apnea, o2 does not help- dries nose and mouth, swallowing is harder causing noisy breathing)
- incontinence ( sphincter relax)
- agitation ( trying to stand up and get out of bed, tug at clothes, may not recognize you)
agitation symptoms may be caused by
hypoxia
dehydration
pain meds
antianxiety can be given
total pain=
physical and nonphysical sufering
patients experiences of nonphysical suffering
- losses (independence, control, body image, social identities)
- Fears ( future, unknown, uncertainty, future suffering, death, burden, how it will happen, death will happen)
- Worries about family/friends (watching others watch them suffer, unresolved family dynamics)
- Barriers to expressing nonphysical suffering (too physically and mentally exhausted to articulate it, lack of information from staff)
Palliative Sedation Therapy is the explicit use of
medications to decrease awareness for the purpose of relieving refractory symptoms (symptoms that have not responded to any treatment).
Ethical Considerations?
palliative sedation
- Will decrease the person’s awareness of living and may shorten life
- Usually only considered when death is days or short weeks away
- Essential to ensure that the person meets the criteria identified by the health care organization and to follow guidelines for administering
what are the barriers to the expression of non-physical suffering in the provision of palliative care
- Being exhausted
- Not feeling comfortable
- No trust built
- Challenging to explain
- Time
- Possibility of being interrupted
- Lack of knowledge
In what ways can we ask our patients about suffering?
- Be the one to initiate the conversations,
- connect them to others,
- provide education to nurses on how to address it.
- Introduce total pain and something that exists, provide the language, increase awareness.
- Ensuring that we ask questions that target nonphysical questions, name is ask about fears, worries or looses, ask specifically target, - make dedicated time so we don’t appear to be rushing.
- Provide privacy.
- Name the emotion game can start conversations.
- do a total pain assessment
“pronounce death”
note and record the time of death
- HCP confirms absence of HR, breath & pupils fixed & dilated
- Place symbol on door if in facility & notify staff
usually top priority after death
notify family
