Module 8: Michael Flashcards
What can be lost?
admission to the NICU
loss of first diaper change
loss of having a ‘healthy’ infant
loss of a hopes and dreams for the future
loss of control
loss of parental and caregiving roles
loss of a sense of safety following unexpected events
loss of holding and bonding with their infant at home
loss of nursing their newborn after birth
initial separation of their twins in different rooms
inability to carry infants to term
loss of ‘perfect’ pregnancy
not spending enough time with Alicia
Starting dialogue with a grieving individual:
I’m sad for you.
• How are you doing/coping with all of this? • I don’t know why it happened.
• What can I do for you?
• How can I help?
• What has been the hardest part for you?
For Parents: Have Faith
Hope.
Accept life changes.
Verbalize questions, emotions, and concerns.
Engage with supportive friends and family. Empathize with
other parents.
Fortitude—to endure the experience.
Adaptability—being able to roll with the waves.
Incredible courage to survive day to day.
Trust—in self, physicians, and the team. Healing in whatever forms it may take.
For NICU professionals: BE HELPFUL
Believe in parents’ ability to survive this challenge. Empathize with parents who have lived and survived the
NICU. Educate parents about grief. Empower parents to ask questions, get involved with caring for their child, and be an essential part of their child’s team.
Have hope.
Encourage communication and contact with infant, partner, and staff.
Loving thoughts and actions toward the child, self, and partner. Patience with the process, realizing there is a time to grow
and a time to heal.
Find inner strengths—faith/spirituality.
Understanding of partner, staff, and the baby’s diagnoses. Lighthearted, optimistic, or at least realistic; remind them it is
OK to find moments of laughter amidst the tears.
Concepts for using a communication toolbox:
- Meet in a quiet private place
- Refer to the baby by name
- Convey empathy
- speak directly
- Offer choices, if possible
- Be honest
- Focus on compassion
- Wait quietly
- Review the goals
- Guide parents through the process
- Address spirituality
- Let the family know that they will not be abandoned
- Ask the parents how they feel and how they perceive the situation
Creating a memory box:
- locks of hair
- Hand and foot prints
- Hand and foot molds
- Record of baby’s weight and length
- Identification bracelets and other momentos
- photography or videography
- Multiples should be photographed together living or dead
Moral distress
a painful feeling and/or psychological disequilibrium that occurs when individuals are consciously aware of the morally appropriate action but cannot carry out that action because of institutional restraints.
How to start the discussion and illuminate the need for further dialogue regarding the unique moral distress abundant in the NICU.
We encourage you to talk to you colleagues, your manager, someone you trust; start sharing your story and listening to others. Engage in dialogue regarding morally troubling situations.
We encourage you to voice your concerns to the multidisciplinary team regarding the care you are finding distressing.
We encourage you ask for interdisciplinary meetings when an ethically challenging situation arises.
We encourage you to ensure there are clear policies and procedures surrounding ethically challenging situations. For example, what are the guidelines in your facility for resuscitating a baby at the limits of viability?
We encourage you to be involved at the policy and political level to bring awareness about moral distress and its “costs” to the system.
Paediatric Palliative Care
prevents, identifies and treats suffering in children with serious illnesses, their families, and the teams that care for them. It is appropriate at any stage of the illness, and can be provided together with disease-directed treatment.
Neonatal Palliative Care
infants born with life-limiting conditions (may have been diagnosed prenatally), or those who develop life-limiting or life-threatening conditions.
