Section 3: Ethics of initiation of long-term ventilation in children at home

Figures & data

Table 1. Factors to consider in decision making in pediatric long-term ventilation.

	Positive	Negative
Impact on the child^10^,^17–21	• Overall, most children are content with their lives and consider their ventilator to be a positive thing; some, however, do not • Tends to be seen as assistive device similar to wheelchair; less concerned about being dependent on technology • Improves energy, makes them feel better • May adapt better when initiated in infancy • Most are able to attend school (resources permitting)	• Delayed discharge • Institutionalization may be necessary at some point • Often feel lonely; shy around healthy peers • May be concerned about being a burden • Does not change the overall course of the disease; most continue to have frequent complications and hospital admissions • Some report social stigma; friends more reluctant to interact; increased teasing • May correlate with poorer physical and psychosocial health-related QoL
Impact on the parents^1^,^10^,^16^,^21–24	• Despite challenges, most report caring for a child on LTV to be deeply rewarding and worthwhile • Most feel that their children are happy and have “lives worth living” • Most parents acquire in-depth knowledge and comfort with the equipment • Improved acceptance of others with disabilities • Personal growth • Feelings of accomplishment for providing exceptional care • Adequate homecare may keep the child out of the hospital during acute illness • May create a positive change in priorities, with more emphasis on family • May not lead to increased stress over the amount of associated parenting a child with special care needs	• Some report that all aspects of life become more “complicated and frequently overwhelming” • Need to invest significant amounts of energy into child • May feel guilty about not doing enough for child • May feel guilty about neglecting other children because of needs of home ventilated child • Many felt they had no choice in the decision, because the alternative was to just let their child die • Concerns about caring for the child in the future, if parents should become less capable physically • Many report marital strain • Financial strains common • Loss of privacy (multiple healthcare and equipment providers will likely be visiting home frequently or even nightly) • Remain concerned about child’s fragility • Challenges may be compounded in a single-parent home
Impact on the siblings^1^,^24	• Allows siblings to live together and interact • May instill positive attributes, including empathy towards others	• Associated with higher rates of behavioral problems • May feel neglected • May feel left behind during times of crisis • May feel compelled to take on a caregiver role
Impact on family^10^,^16^,^22–25	• Can help family stay intact • Eventually, most families find a routine that works for them • Good QoL when the healthcare system provides adequate services	• Deteriorations in physical and mental health of family members • Financial hardships • Negative impact on QoL of family • A feeling of isolation, or being trapped; lack of respite • Medicalization of the home; intrusion of strangers

Table 2. Suggested protocol for compassionate withdrawal of mechanical ventilation (CWMV) in the inpatient setting and in the home.

Steps	Details
1. Prior to CWMV
☑ Adequate discussion and documentation by most responsible MD	• Family members must understand that CWMV will likely result in the child’s death; the timing of death, however, cannot be assured • If prolonged survival is anticipated, patient should be referred to palliative care
☑ Discussion about continuation of other life-sustaining treatments	• Clear plan in place regarding the ongoing use of:  ➢ IV fluids and artificial nutrition  ➢ Vasopressors and inotropes  ➢ Antibiotics  ➢ Dialysis • No clinical or ethical reason to maintain these supports; some may feel strongly that hydration continue
☑ Ensure that appropriate treatment limitations are clear and in place	• “Do-Not-Resuscitate (DNR)” or “No-CPR” order • Ensure family understands
☑ Clarify desire for tissue and organ donation   ☑ Discuss need or desire for autopsy	• Follow jurisdictional protocols, including referral to regional center to discuss candidacy and options for donation
☑ Date, time and location for CWMV should be established	• Ensure that families have chance to say goodbye, create legacies (photos, hand molds, etc.), and participate in important religious or spiritual rituals • Ask family if they would like music playing at time of CWMV (eg. child’s favorite song) and if so, bring with them • There is never a “good” time for CWMV; helpful to establish a schedule rather than wait for family to be “ready” • Have family consider who they wish to be present • Although typically done in the ICU, family may want CWMV to occur on inpatient ward that knows child best (requires ICU or palliative care expertise on site) or at home (if appropriate, and necessary supports are available)
☑ Adequate support for siblings	• Identify supports needed for siblings, as required • If siblings to be present during CWMV, offer to arrange specific supports (i.e., child life specialist, palliative care team member)
2. At the time of CWMV
☑ Ensure proper equipment present and in working order	• IV or SC access secured • Suction catheter • Oxygen
☑ Discontinue unnecessary treatments and monitors	• All paralytic agents should be stopped to allow for proper symptom assessment • Discontinue other forms of life-sustaining treatment as previously discussed • Remove and silence all monitoring devices (pulse oximeter, apnea monitor, etc.)
☑ Ensure necessary individuals are present and proper set-up	• Healthcare staff: MD, nurse, respiratory therapist • Family members and requested guests • Ensure family has place to sit and access to their child (may wish to hold child) • Consider: chaplaincy; social work; additional support for siblings • Music, if desired
☑ Assess child’s comfort prior to CWMV and address concerns	• May be helpful to ask parents for their assessment and address concerns
☑ Pre-medication to optimize comfort; possible sedation	• Wean down to minimal ventilator settings and titrate current meds to ensure child is comfortable  ➢ Most intubated children are already on opioid infusions  ➢ No need to start new medications unless necessary to achieve comfort • If child is alert and cognitively intact, discuss if sedation is desired prior to separation from ventilator  ➢ Children who are not expected to die immediately after separation (i.e., neuromuscular condition) may want to remain alert  ➢ Make sure goals are clear and that plan is in place to address distress or discomfort
☑ Discontinue ventilatory support	• Invasive ventilation (ETT)  ➢ Deflate ETT cuff (if applicable)  ➢ Silence alarm on the ventilator and move machine out of the way  ➢ If secretions are excessive, light oral suctioning may be indicated • Noninvasive ventilation (CPAP, BiPAP)  ➢ Silence alarm prior to removal
3. Following CWMV
☑ Provide space and support for family to be with child	• Give family room to be with their child, but someone should remain present or nearby to address concerns or changes
☑ Monitor child closely for change in comfort	• Have additional medications on hand to give bolus as frequently as required  ➢ E.g., Morphine 0. 1mg/kg q 10min prn  ➢ E.g., Midazolam 0.1 mg/kg q 10min prn • Adjust background infusions as indicated • Consider giving supplemental oxygen by mask or nasal prongs for dyspnea (not for low oxygen saturation)
☑ Bereavement support for family	• After the death of the child, ongoing grief support should be provided to the family, including siblings, as indicated
Additional things to consider prior to CWMV at home	• Make sure family clearly understands purpose of going home (end of life care)  ➢ Returning to hospital is not part of plan • Ensure equipment (e.g., stretcher, infant incubator/isolette) can fit through door of house and that child will remain on the main floor • Oxygen should be available in the home • Decide who will accompany child in transport vehicle to home  ➢ Recommend staff: nurse, respiratory therapist, physician  ➢ One parent • Have clear plan in place about what will be done if child deteriorates or dies en route  ➢ Treat symptoms as needed  ➢ No CPR  ➢ If child dies, some families prefer body be taken directly to funeral home or religious institution • Have proper supplies  ➢ New IV/SC devices available  ➢ Predrawn bolus medications  ➢ Portable oxygen and suction  ➢ Medical certificate of death • Plan for care if the child survives beyond the immediate extubation period • Usually involves home palliative and hospice care, including nursing and physician support

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