LoriI-B

Francesco, I agree completely about the quiet place- we use screens in our 4 bed rooms for babies who are not yet able to be moved- prior to withdrawal of technological interventions, and have a beautiful care by parent room with a queen bed and amenities to encourage them to stay as long as they need. The room is set up with ventilation support for short-term ventilation of infants we anticipate may die quickly after WLST, or who need oxygen/suctioning for comfort. We encourage the whole family unit to be part of this experience at the parents' direction. We encourage all cultural expressions, and have chaplains from many different communities- 9 at present, who can facilitate rituals. We use NILMDTS photographers to capture the story when the family is open to it, create legacy any way we can with molds, prints, photos, story telling, sibling involvement, encouraging families to "BE FAMILIES" and our presence is support to their journey. Our infants have survived minutes, hours, days or weeks depending on the underlying diagnosis- and we support all options. We also are blessed to have our Palliative and Bereavement Care Service to work with for infants discharged home with a life-limiting condition (T13-18 or HIE or other unknown situations where outcome is deemed challenged), to ensure we offer best options for these families on their transition to the community. We will also do our best to get critically ill babies back to their parents, as an outborn centre, as the moms sometimes are too unwell to get to SickKids. Our transport team is well-equipped to support the family through this journey. We all try to support best practice when it comes to pain and symptom management and encourage all staff to be open to the many options for each family.

My apologies for the delay- caught up in some tough ethical challenges in my unit for families and staff. In our program we use IV when a line is currently in place- morphine, ativan, midazolam- whatever will be best- with continuous assessment for these infants, along with their families. If no IV, we look at the alternatives- sublingual and intranasal (new)- or for families who do not want the IV in or baby to be poked. Pain is the 5th vital sign and is monitored regularly. Are we treating the baby or the family? Does it matter, if the baby is comfortable as a result of analgesia/sedatives, then the family will have better memories than of a baby who is horribly discomforted. Regarding your question of guidelines- we use the hospital medication admin recommendations, to provide appropriate analgesia/sedation- they are below. Along with the pharmacological management, including sucrose as an adjunct as well as Tylenol- below, we focus on non-pharmacological management- swaddling, mouth care, normal baby care, music, massage, parenting time, to ensure that this is an optimal situation for the family. We ask parents to be our eyes when we are not in the room (parents have time alone after extubation with their baby). We also encourage parents to take their little one for walks, if appropriate, go out of hospital and for those who live for hours-to-days, going home or a hospital closer to home. Dosing tends to start at 5-10 micrograms/kg/hr IV via continuous infusion and can go up to 20-30 if clinical symptoms identify pain as a significant marker. If the baby was on it previously and then it is a gentle increase based on symptoms manifesting. The same IV dosing regime can be given sublingually- if no IV access is available, or can be given intranasally- I will link a specific guideline recommended by Dr. Mike Harlos at Winnipeg, whose team have developed a model for intranasal meds- we are yet to try it successfully in the newborn but they use it for delivery of the 22-23 weeker and infants with severe lesions like described above. Fentanyl- Sedation/Analgesia:Bolus 1 microgram/kg/dose IV, followed by continuous infusion:0.5 ‑ 2 micrograms/kg/hr IV infusion; titrate upward Mean required dose:Gestational age <34 weeks: 0.64 microgram/kg/hr Gestational age ≥34 weeks: 0.75 microgram/kg/hr Midazolam is: standard, maintenance dose: 10‑60 micrograms/kg/hr IV via continuous infusion and if already on it, goes up gently. Lorazepam (Ativan) is 0.05 ‑ 0.1 mg/kg/dose IV/pr May repeat once prn, maximum cumulative dose of 4 mg- this dosing can also be done sublingual- same IV mixture- same dosing under the tongue- with good effect. Mike Harlos' group (mike@harlos.net) have a set of guidelines- I don't think I can attach them here but if you email him, he is open to sharing. These are specifically focused on lIntranasal Fentanyl for Palliative Management of Symptoms in the Newborn at End of Life and I know we are adapting his guidelines in our centre for older children and newborns- not yet in our NICU... They use a 1 ml syringe with a Mucosal Atomization Device (http://www.wolfetory.com/nasal.php) to give the meds with good success- I used it once in an newborn who went home for extubation and it was a great system- easy use and effective. For assessment, we use the PIPP scoring system to ensure that we are assessing pain, and, while it is hard to assess the difference between pain and agitation, we will try using alternating in infants with severe brain injury and seeing effectiveness. Not sure if I have given you all you requested, so feel free to resend any comments/questions my way and I will try to answer more quickly. Have a great day! Lori

I am a new member to the group and am focused on Neonatal Palliative and Bereavement Care at a tertiary/quaternary hospital. We utilize several methods of comfort for our babies who are dying, and I am interested in the perceptions of others. Our optimal- morphine, midazolam, fentanyl, either IV continuous or bolus depending on the situation/baby, as well as morphine/ativan sublingually and recently ativan intranasally. We also use acetamenophen as an adjunct and try to work the med regime specific to each baby and family needs. Any thoughts would be valued. Thanks in advance. Lori Ives-Baine, RN, MN, CPB Palliative Care and Bereavement Coordinator Neonatology Program SickKids Hospital