Identifying, Understanding and Working with Grieving Parents in the NICU

Identifying, Understanding & Working with Grieving Parents in the NICU Kirsti A. Dyer MD, MS, FAAETS, NCBF Physician • Grief Educator • College Instructor Dedicated to those who hold the littlest hands and those who support them. Learning Objectives • Identify common emotional reactions of parents of high-risk babies during the infant hospitalization in the NICU. • Understand common grief responses. • Learn strategies to work with and help grieving parents of babies in the Neonatal Intensive Care Unit, Pediatric Intensive Care Unit or Intensive Care Nursery. Overview • • • • • Background Understanding Loss and Grief Identifying a Normal Grief Response Understanding Coping Helpful strategies for Working with Grieving Parents • Follow up - Aftercare • Final Thoughts Background • NICU/PICU/ICN Admissions • Case Presentation NICU/PICU/ICN Admissions • Each year in the U.S. approximately 9 % of all newborn babies are admitted to neonatal intensive care units, pediatric intensive care units or intensive care nurseries. • Admission to the NICU/PICU/ICN is most often unexpected, frequently unplanned and usually occurs under emergency situations. • This sudden hospitalization is a stressful, overwhelming and a traumatic event for the newborn and the parents. My own worst nightmare happened — I delivered a 26 week 1 day, 790 gm baby girl. Suddenly I felt the anguish I had only seen in others, and I began to understand the depth of pain and the length of struggle parents live through. It was difficult to comprehend the overwhelming nature of this crisis... until I lived it. Dianne I. Maroney, R.N. NICU Nurse & Parent www.premature-infant.com Case Presentation - 1 A term female infant was born at 4,465 grams (9 lbs. 13 oz), large for gestational age to a 41 year-old G2P1 mother. The baby was born by repeat elective cesarean section and had Apgar scores of 9 at one minute and 9 at five minutes. Initially admitted to the Well Baby Nursery, she began desaturating at approximately 1 ½ hours of age with an oxygen saturation of 85 % on room air and also developed hypoglycemia with a chemstrip of 29 mg/dl. The infant was transferred to the Intensive Care Nursery and placed on oxygen. Over the next 12 hours she had increasing CO2 retention was intubated and placed on mechanical ventilation. Failing to improve with this therapy, she was transferred to the regional Level IV intensive care nursery for potential treatment with nitric oxide or extracorporeal membrane oxygenation (ECMO). Case Presentation - 2 The infant’s diagnosis was persistent pulmonary hypertension of the newborn (PPHN). She stabilized in the ICN and did not require additional aggressive intervention or treatment for the PPHN. While in the ICN she developed hypertension, felt to be secondary to microemboli from the umbilical catheter. The hypertension was controlled with antihypertensive medication. Evaluations to determine the etiology for the PPHN and hypertension were both negative. Fourteen days after birth, the infant was discharged to home with her parents in markedly improved condition on antihypertensives. But what was the discharge condition and state of her mother, father and two-year-old sister? Case Presentation - 3 Father - was (still is) a senior web administrator for a major hospital. He’s had limited exposure to coping with hospital crises. Prior military experience helped him to focus on what he could do, step back and let others care for his daughter. Two-year-old sister - was a very sensitive child. She was confused that the baby was not coming home from the hospital as promised. She found it difficult that mommy was also in the hospital, both mommy and daddy were sad and didn’t want to play. Mother - Presenter, Multiply certified in grief and loss Reason for Case Presentation • Present a different perspective of NICU loss traditionally thought of as ―death.‖ • Share a personal perspective of NICU loss(es) and perspective of several other professionals who were also NICU parents. • Help other families. Insights gained from our experience, seen through the eyes of a grief educator, may help NICU professionals when dealing with other families. Reflections on our Experience • Term Birth, not a preemie • Only a ―sick‖ newborn (Diagnosis of PPHN), no Internet support groups • Transferred to a Tertiary Care ICN • Could not find any books for our 2-year-old • Short Duration of Admission - Two weeks • Moved when daughter was 5 months old • Mom was a physician so she already ―knew‖ about medicine. • The infant was alive, so I couldn’t be grieving. • NICU child is a risk factor for parental PTSD. My Precious Little Child… In your sweet tiny hands I see Past, Present and Future All merge into a single moment of unfolding wishes, hopes and dreams. Kirsti A. Dyer MD, MS Kaarina 2 & Kristiina 2 weeks Kaarina 2½ & Kristiina 6 mos. Kaarina 5 ½ & Kristiina 3 ½ Understanding Loss & Grief • Terms and Definitions • Normal Grief Response • Six Dimensions of the Normal Grief Response • Recognizing a Grief Response • Five Stages of Grief and Grieving • Phases of Mourning • Grief AIDE Terms and Definitions - 1 • Loss - the condition of being deprived or bereaved of something or someone; the disappearance of something cherished. • Grief - the normal response to loss; a complex, multifaceted response. • Grieving - the process of reconstructing meaning in a world that has been challenged or changed by loss. Terms and Definitions - 2 • Bereavement - an objective state of having lost someone or something. Often used for losses resulting from a death. • Mourning - the process by which a person adapts the the loss. It is considered to be the outward expression of the loss. • Traumatic Event - An situation that overwhelms an person’s normal coping and problem-solving capabilities. Normal Grief Response • A grieving person may experience different physical and emotional symptoms along with intellectual, social and occupational impairment. • A grieving person may also end up examining his/her spiritual beliefs or experience a crisis of faith as part of the grief response. • Grief is considered to be a normal response to an abnormal event. Six Dimensions of the Normal Grief Response Grief is a multifaceted response to loss that affects the entire person. It includes physical, emotional, intellectual, spiritual, social & occupational elements. The Dyer Model of Grief Recognizing a Grief Response • A grieving person may experience many somatic (body) complaints that include fatigue, insomnia, pain, G.I. symptoms, chest pressure, palpitations, stomach pains, back pain, panic attacks, or increased anxiety. • Medically serious complaints require a thorough evaluation to exclude other disorders, before a grief response or depression can be diagnosed. • Depression, anxiety and symptoms of distress can all be part of a normal grief response. Five Stages of Grief and Grieving Elisabeth Kübler-Ross, David Kessler • • • • • • Denial Anger Bargaining Depression Acceptance Stages are a part of the framework that makes up our learning to live with the one (thing) we lost. • They are tools to help us frame and identify what we may be feeling. Phases of Mourning Colin Murray-Parkes • Shock and Numbness - the initial phase when people may have difficulty processing the loss. • Yearning and Searching - this phase combines an intense separation anxiety and disregard or denial of the reality of the loss. • Disorganization and Despair - the depressed phase. People are easily distracted, have difficulty concentrating and focusing or planning future activities. • Reorganization - the phase when one begins to reconcile the loss, rebuild and readjust to their new life. Grief AIDE • It increases Awareness by the public and health care professionals, so that patients will be more comfortable bringing up the topic and physicians will consider loss and grief in the differential when seeing patients. • It Identify the signs and symptoms of the grief response, distinguishing between normal grief, complicated grief (e.g. depression) and potentially serious medical conditions. • It Diagnoses the grief response in patients. • It Educates and Empowers patients to help normalize the grief response and assimilate the loss. Identifying Normal Grief • • • • • Loss and Grief in the NICU Parent’s Narrative Responses Acute Responses of NICU Parents Grieving Parents Emotional Response Helpful Expressions to use when Talking to a Grieving Parent Loss and Grief in the NICU A NICU admission can result in many different types of losses. • Loss of life, health, organ or bodily function. • Loss of a significant person - the child is in the hospital, not home with the parents. • Loss of original plans, hopes and dreams - of a normal pregnancy and delivery and healthy newborn to take home. • Loss of control and parenting role - turning care of their new child over to strangers. The inability to do anything, to contribute to my daughter’s care medically as a physician or emotionally to hold her hand and pacify her as a mother was indescribably frustrating. How was I supposed to "turn off" my years of training as a physician-being in the hospital, caring for patients and providing them comfort during a tormenting time? It was impossible. Kirsti A. Dyer, MD, MS Physician, Grief Educator, NICU Parent Imagine coming to visit him everyday, not as a nurse, but as a mom. During your time with him you wanted nothing more than to help him through the difficult periods, hold & dress him, change his diaper; but you were powerless. Every single thing that happened to him mattered! It mattered not only for the moment but for the future: his eyesight, his lung disease, his ability to walk. There may have been brief moments where you were helpful, but the baby's life was truly in the hands of others. This lack of control is very intimidating to parents and is often interpreted as failure. Dianne I. Maroney, R.N. NICU Nurse & Parent, www.premature-infant.com Acute Responses of NICU Parents Professor and former NICU Parent Dr. Michael Hynan, describes the acute distress response that parents may experience with the ―three D’s:‖ Derealization - trying to function in a strange, unreal, confusing NICU environment. Denial - unwilling to accept what has happened. Dissociation - failing to process information because of tremendous fear or shock. Responses of Grieving NICU Parents FRIGHTENED Fearful Relieved Inadequate/Incompetent Grief-stricken Hopeless and Helpless Terrified and Tearful Edgy Nervous Excitable Depressed DREADING Despairing Resentful Exhausted Anxious and Angry Devastated Irritable Numb Guilty, Grouchy, Grateful For years I had been telling parents, "Having a baby in the NICU is a roller coaster ride." Although accurate, the analogy pales beside the reality. The range of emotions is beyond imagining. There is the moment of joy when she opens her eyes peacefully, followed by panic at the slightest hint of trouble. Dianne I. Maroney, R. N. NICU Nurse & Parent, www.premature-infant.com Helpful Expressions to use when Talking to a Grieving Parent • I can’t imagine what you are going through. It must be unbearable. • I’m sad for you. • How are you doing/coping with all of this? • What has been the hardest part for you? • I don’t know why it happened. • What can I do for you? How can I help? • I am here to listen. • What would be the most help right now? Understanding Coping • • • • Basics of Coping Helpful Strategies - Minutes, Hours, Later Different People - Different Responses Coping Strategies for Conventional (Feminine) vs. Masculine • Brief Cultural Considerations • Helpful Suggestions from NICU Parents • Advice for NICU Professionals Parents learn a lot from their children about coping with life. Murial Spark Basics of Coping • • • • • • • • • Take it one hour at a time, one day at a time. Maintain a normal routine. Keep doing normal activities. Get enough sleep or at least enough rest. Try to get some regular exercise, even walking, helps relieve stress, tension and improve moods. Maintain a healthy, balanced diet. Limit junk food. Drink plenty of water. Avoid using alcohol or other drugs to mask the pain. Do those things and be with those who comfort, sustain and recharge you. Remember past losses and the coping strategies used to survive them. Use these inner strengths again. Helpful Strategies Initially - Minutes – Reassure parents what they are feeling is normal. – Listen to their story of loss. It provides comfort. Early - Hours – Advise parents about available resources. – Share information that others have found helpful. Later - Days to Weeks – If a parent remains distressed after several weeks or is profoundly affected, a referral to a professional grief counselor would be beneficial. Different People - Different Grief Responses • Each person experiences grief in his or her own unique way. People can have very different grieving styles. • It can be very helpful for parents to realize that each of them may respond quite differently to the NICU admission & losses. • Parents/partners can be encourage to grieve separately as well as together; this enables each person/parent to express grief in his or her own unique way and style. Coping Strategies: Conventional vs. Masculine Grievers Conventional Grievers • Identify others as sources of support • Openly express feelings • Temporarily withdraw from obligations • Allow time to experience inner pain • Join support groups • Choose ways to express feelings - journal, quilt Masculine Grievers • Shelve thoughts/feelings to cope with present • Choose active ways of expressing grief - hobbies • Use humor to express feelings, manage anger • Seek companionship • Use solitude to reflect and adapt • Write - journaling Brief Cultural Considerations The many factors to consider when dealing with parents from another culture include: • • • • • • • Language Social Unit, Role of Elders Family History Gender Differences Spiritual/Religious Beliefs - Role of Hope View of the Future Expressions of Grief I would like to ask those of you in the audience who are perinatal professionals to consider doing some things for us highrisk parents… to help us cope with our shattered dreams. Michael T. Hynan, Ph.D. Professor of Clinical Psychology, Researcher, NICU Parent http://www.uwm.edu/People/hynan/MINNAEP.html Helpful Suggestions from NICU Programs & Parents Care for Infant – Ask questions about your child. – Get involved with caring for your child. – Familiarize yourself with how the NICU works. Care for Self – Learn about the common response to grief. – Take time for yourself - eat, rest, exercise. – Don’t let the pressures run you down. – Learn relaxation techniques. – Give yourself permission to take time off. Advice for NICU Professionals • Communication • Helpful Phrases to Use with a Grieving Person • Comprehension • Dealing with Intense Emotions • Teaching • Baby Care • Family Unit Follow up - Aftercare • • • • Aftercare Patient Support Coordinator Perinatal PTSD Questionnaire - PPQ Forgotten Caregivers/Grievers Follow up - Aftercare • Follow up or Aftercare is monitoring the health and well being of the NICU family. • Who should monitor the NICU family? • Ideally any professional seeing a parent or a child in follow up from the NICU experience: – – – – – Pediatrician Obstetricians/Gynecologist Nurse Practitioner, Educator Urgent Care Physician Emergency Room Physician – Internist – Social Worker – Clergy – Mental Health Support and Follow up: A Patient Support Coordinator • Ideally, as suggested by Hynan, each NICU would have a patient support coordinator associated with the hospital. • This person would be responsible for supporting the parents through their journey in the NICU/ICN and once home. • They could contact all NICU parents or use a questionnaire to screen and identify those experiencing postnatal distress. PPQ - Perinatal PTSD Questionnaire The PPQ can be used to identify those parents who may be at risk for postnatal emotional distress. A score of 4 or more ―yes‖ items would be an indication of referral for further evaluation. Forgotten Caregivers/Grievers • Father – Frequently the focus is on how the mother is dealing with the grief. – Father often feels he needs to be ―strong‖ for his wife. • Grandparents – Often overlooked as grieving. – Doubly grieving - the grandchild and the impact on their own child. Final Thoughts • Finding Meaning in Loss • For NICU Providers • For NICU Parents Finding Meaning in Loss • In coping with a life changing event, finding meaning in the event is up to each person. • Finding meaning in the loss is not something that can be done for him/her. • Meaning in our loss – Husband/father had a chance to experience what I had dealt with in training and perhaps gain better insight into the medical profession. – Felt, early on, that I would be lecturing about the experience. – Impetus for a shift in career focus to education. For Providers: Be Helpful • • • • • • • • • Believe in parent’s ability to survive this event. Empathize with NICU/ICN parents. Have hope. Encourage communication. Loving thoughts and actions. Patience with the healing & growing processes. Find inner strength - faith, spirituality. Understanding of partner, staff & baby. Lighthearted. It’s o.k. to find moments of laughter amidst the tears. NICU professionals can provide beneficial support for parents’ emotional struggles on their journey of grief. Supporting parents through such a challenging time may help the parents discover their internal strength, learn effective coping strategies and be better able to raise their NICU survivor in a life forever changed by loss. Kirsti A. Dyer MD, MS For Parents: Have Faith • • • • • • • • • Hope Accept life changes & challenges Verbalize questions, emotions & concerns Engage with supportive friends/family Fortitude to endure the experience Adaptability - to ride the waves Incredible courage to survive day to day Trust in self, in child, in the team Healing in whatever form it takes. Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out. Vaclav Havel Hope in the NICU • Parents often experience many different losses during a NICU hospitalization. • Coping with a loss or losses, does not mean giving up hope. • The object and focus of hope may change over time and over the course of the NICU admission. • As loss is encountered, one situation changes and new situations emerge… hopes are readjusted. Image: Sweet Dreams Ivory finish figurine from http://www.qualitygiftsuk.com Adjustment for the high-risk parent means making unacceptable losses acceptable... giving up lost dreams and accepting what we do have is simply necessary... if we're going to resume living our lives as a family with any joy. Michael T. Hynan, Ph.D. Professor of Clinical Psychology, NICU Parent http://www.uwm.edu/People/hynan/MINNAEP.html Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. Thich Nhat Hanh Healing A NICU Blessing This healing blessing was placed over Kristiina’s ICN bed & remained there until she was discharged. Several copies were given to the ICN staff with our deepest gratitude on the day she was discharged. May you be surrounded in comfort. May you be filled with love. May you feeling he healing presence of those who hold you in their thoughts and prayers. May these positive thoughts and blessings provide you with strength. May you be sustained in health as you continue your healing journey. May you feel loved. May you be safe. May you be protected. May you be strong. May you be healed. Mommy, Daddy & Kaarina Welcome to Holland ...But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never ever, ever, ever go away… because the loss of that dream is a very, very significant loss. Emily Perl Kingsley Writer Sesame Street etc, Mother of a Son with Down Syndrome Source: http://www.journeyofhearts.org/jofh/kirstimd/holland.htm But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. Emily Perl Kingsley Keukenhof Gardens, Lisse - Holland We worry about what a child will be tomorrow, Yet we forget that he [or she] is someone today. Stacia Tauscher My child calls me back to the present moment. (S)he can be a strict teacher who points out all my weak points and shows me the art of being in the here and now— the most important art of all. Piero Ferrucci ~ Thank you ~ Online Page: http://www.journeyofhearts.org/nicu/mod PowerPoint Slides (as ppt and pdf) http://www.journeyofhearts.org/nicu/mod.ppt http://www.journeyofhearts.org/nicu/mod.pdf Blessing http://www.journeyofhearts.org/nicu/blessing.pdf Website: www.journeyofhearts.org Email: griefdoc@journeyofhearts.org