As a pediatrician or neonatologist, it may seem daunting to address the psychological facet of palliative care. However, early identification and recognition of both family and staff grief patterns and psychological needs may ease the process of mourning and bereavement. Studies suggest that as end-of -life care progresses, the psychosocial needs of the family become more important. Therefore, the role of the infant’s physician is to establish a therapeutic relationship, identify family and hospital staff psychological needs, recognize normal and abnormal grief reactions, understand special circumstances regarding grieving the death of an infant, assist in the bereavement process, and participate in appropriate follow-up for both family and staff members.
Building a Therapeutic Relationship
The development of a strong therapeutic relationship between the physician and family helps to establish an environment of trust and collaboration[102, 120, 121]. Unfortunately, oftentimes the physician does not have the luxury of a long-standing relationship with the parents of a dying child and must instead convey bad news after only a brief meeting. The difficulty of such a conversation may be further complicated by the fact that our culture tends to shy away from death because of fear of the unknown, trauma of witnessing suffering, and not knowing what to do or to say. Physician discomfort may be due to feelings of guilt, responsibility, powerlessness and failure when faced with patient deaths, or may result from their own emotions and unresolved feelings about death and dying. Despite these challenges, it is possible to create a supportive rapport in a short period of time. The following outline provides one possible structure for achieving this complex goal.
I. Invest in the Beginning
- Open the discussion by locating a quiet environment and introducing yourself and any other staff members present.
- Create rapport quickly and engage in the conversation by explaining that it is a privilege to care for their child and that the care team will continue to provide the best possible care for him or her.
- Gather the full spectrum of information regarding the baby’s medical history from all family members, especially if the infant is a new patient to the care team.
II. Understand the Family’s Perspective
- Understand concept of problem/s by asking what the family members’ understanding is of their infant’s illness.
- Identify family requests by asking how the care team may best help the family during this time . This question may be asked prior to sharing bad/sad news to assist in building rapport, or may be asked after a chronic hospital course or known acute decompensation. Most families have similar requests regarding clinical care, comfort measures, and decision making, but supportive interventions should always be customized for each unique family situation [125-135].
- Explore impact of the infant’s illness on the family by asking how they are coping. This question is particularly appropriate during an infant’s chronic illness or prolonged decline.
III. Demonstrate Empathy
Empathize if you genuinely feel it. Most families find clinician’s expressions of empathy tremendously supportive and these are associated with increased family satisfaction. Physicians bearing witness to suffering by sitting with the family in silence as they grieve or cry, balanced with their need for time alone, is often appreciated.
IV. Invest in the End
- Share information honestly with the family. Further information regarding imparting difficult information is available in Social Aspects of Care.
- Deliver Bad/Sad News as discussed in detail in Social Aspects of Care.
- Involve family in decision making while paying specific attention to the family’s requests. Most families appreciate being given time to prepare for the death of their infant, if possible.
- Negotiate a plan that is acceptable to both family and medical staff. Although many parents appreciate being given choices and as much control as possible of the situation, in some instances families may be too uncertain and overwhelmed to make many decisions. In every circumstance, staff members who are familiar with the end-of-life process may help to guide and reassure parents[136-138].
Identifying Family Psychological Needs
Most families have two types of psychological needs: cognitive and affective. Cognitive needs, serving the need to know and understand, involve verbal communication including asking questions and providing information. Affective needs, serving the emotional need to feel known and understood, involve reflecting feelings, showing dignity and respect, demonstrating concern and compassion, and responding to suffering and bereavement. Most affective needs are met through the non-verbal communication of the care team members, such as by gestures or touch, forward-sitting posture, eye contact and use of silence when appropriate.
The physician role regarding uncomfortable parent emotion is to maintain a trusting therapeutic relationship and safe and supportive environment that allows emotions to be expressed in a way that meets the family’s needs, and not to worsen the experience for the family by ignoring or delegitimizing their responses. If possible, medical information should be given only when the family is ready to receive it.
The Role of Family-Centered Care
The parent role in the NICU has changed from that of visitor to that of partner, and the presence of parents in the NICU has been associated with more positive neonatal outcomes. Family-centered care that focuses on the support and well-being of the whole family during a critical illness and the end of life may reduce rates of both family dysfunction and psychosocial morbidity in the bereaved [141-143]. Attention to family functioning is a useful model for assessing bereavement outcome. A family-centered care specialist may be a helpful addition in assisting both families and staff through the bereavement process.
Identifying Staff Psychological Needs
Caregivers absorb much of the family’s stress and experience similar conflicts while caring for a dying child. Caregivers also experience internal conflicts over whether to overprotect the infant and family, or to disengage psychologically and protect themselves. Thus, those involved with end-of-life care across disciplines often feel morally and emotionally distressed and are at high risk of experiencing “compassion fatigue” and resultant burn-out.
A number of qualitative studies have been conducted to evaluate experiences of physicians and nursing staff at the end of a baby’s life[82, 122, 145], and in one, three major categories of stress were reported: physical, psychological, and behavioral. The death of an infant is difficult for every healthcare member, but especially for those who allow themselves to be vulnerable and form strong relationships with critically ill neonates and their families[147, 148]. Grief reactions and impact on nurse[149, 150] and physician functioning have been reported[151, 152].
There are 6 possible ways in which healthcare professionals experience loss when an infant is dying: (1) loss of the relationship with the infant, (2) loss related to identification with the pain experienced by the family of the patient, (3) loss related to one’s worldviews related to caregiving, (4) loss-amplified unresolved personal losses, (5) loss related to reflection about personal mortality, and (6) loss related to professional expectations for job performance.
Working with the bereaved makes us aware of our own experienced and feared losses. If we have not appropriately mourned and re-located our own grief, it will be re-experienced in our interactions with families. Thus, it is important to consider our own feelings, coping styles, and behavior while interacting with parents at the end of their infant’s life.
Bereavement Care for Families
Bereavement of parents is considered the most intense grief known. Bereavement care planning should begin at the point of entry into palliative care, rather than post-death. As the affected family travels along the palliative care continuum, the clinical phases of grief progress from anticipatory grief, to the immediate news of the death, to the stages of acute grief, and for some, the complications of bereavement. Well-timed bereavement care may assist in the recognition and prevention of associated morbidities.
Bereavement has been described as an oscillation between loss/grieving and restoration/coping, and eventually "relearning the world". Parents' ability to maintain a continued bond with their deceased child and integrate memories into a new reality is considered central to parental bereavement and adjustment[157, 158]. The role of the healthcare professional is to assist the bereaved family members through the initial grieving process, and to provide education and support for the journey ahead.
A Bereavement Support checklist assists staff in delivering uniform care to patients and families. However, healthcare professionals’ interventions must be individualized to meet the needs of each distinctive bereaved parent and family. Examples of checklists may be found in the “forms” section.
Bereavement Care for Staff
In order to decrease resultant burnout and compassion fatigue, the AAP emphasizes institutional support for staff experiencing the loss of a patient. This support may include paid funeral leave, routine counseling with a trained peer or psychologist, and regularly scheduled remembrance ceremonies. Facilitated debriefing meetings during the process or after the death involving interdisciplinary members may be helpful, especially if there is disagreement or strong emotion present[159-161]. There are many different ways to provide support for healthcare workers who care for dying children, and several examples are discussed here.
Every effort should be made to exempt nursing staff involved in a neonatal death from further admissions for that day so that they may concentrate all care and attention on the affected family. A specialized leadership group of nurses who have received RTS bereavement training may be available to guide other staff members through the family bereavement process.
Other interventions may include a monthly online newsletter in which patients are remembered, and staff questions and concerns are addressed, and quarterly ceremonies during which time healthcare workers may paint memory rocks with their patients’ names and decorative colors. Some rocks may be distributed to family members during the yearly remembrance ceremony, and some may be placed in a hospital’s children’s garden. A well-received ten week grief recovery outreach program for staff is now available using the Grief Recovery Handbook by John W. James and Russell Friedman. The assigned chaplain may be notified after a patient death so that s/he may check in with those staff members involved and assess their coping strategies.
Although these particular resources may not all be available in the community hospital setting, these examples may stimulate innovative strategies in the community for providing improved support to those involved with patient deaths.
Normal Grief Patterns
There is no particular way that anyone “should” grieve. Attachment processes play a central role in predicting grief responses, and attachment to the infant begins before birth. Over the past few decades, scientific study of the symptoms, mental and physical health outcomes, and ways of coping with grief has expanded rapidly. Freud observed that grief is a process. Elisabeth-Kubler Ross proposed five stages of grief as a pattern of phases that affected people experience, not always in sequence, when faced with their own or a loved one’s death. These stages are denial, anger, bargaining, depression and acceptance and are not always experienced in a linear fashion. Glen Davidson’s phases of bereavement suggest that shock and numbness are most intense in the first 2 weeks, followed by searching and yearning from the second week to 4 months, then disorientation from 5 to 9 months, and finally reorganization/resolution at 18 to 24 months.
Grief includes psychological, behavioral, and physical reactions combined with cognitive, emotional, behavioral, social, spiritual, and somatic elements. Normal emotions experienced during mourning include disbelief, denial, guilt, self-blame, anger, helplessness, envy, resentment, loneliness and yearning. Physical symptoms involve aching arms, sleep disturbances, vivid dreams, appetite and weight changes, weakness, fatigue, decreased resistance to illness, restlessness, anxiety, shortness of breath, rapid heart rate, tightness in the chest or throat, sensitivity to noise and dry mouth. Associated mental changes consist of disorientation, forgetfulness, and difficulty with concentration.
Some studies[166-168] have indicated that parental grief remains intense for four years, a finding which is consistent with the more recent concept that grief is an active process that occurs over time. Grief may profoundly affect surviving siblings and parents for at least as long as 9 years after the death of a child. Traditional understandings of grief and loss have tended to focus on the breaking of bonds and “letting go” of the deceased child[171-173]. More recently, the importance of parents maintaining and reconstructing relationships with their dead children has been recognized. In all cases, a child’s death requires individual reorganization and adjustments within the family system.
Atypical Grief Patterns
Parental exhaustion, social isolation, and deteriorating mental health may result from the all-consuming multidimensional experience of parenting a dying child. Up to one quarter of bereaved parents may display severe symptoms years after the death of their baby. Many parents feel victimized not only by the loss of their child, but by the loss of their hopes and dreams, as well as the loss of self-esteem as a parent because they feel that they have failed to protect their child. This victimization has been referred to as survivor guilt.Suicidal ideation, self-accusations, inconsolable grief, and withdrawal from family and friends are common parental reactions, and the death of a child may produce a lifelong crisis of meaning for parents. Unresolved or delayed grief may result in a complicated grief reaction or prolonged grief disorder, which is an inability to ultimately adapt to the loss and bring grief to a satisfactory conclusion.
Additional stressors including mental illness and low socioeconomic background can prolong and impact the resolution of grief and the integration of the loss. When a stressor results in impaired function or distress, together with depressed mood, a diagnosis of adjustment disorder with depressed mood should be considered. Fifteen percent of bereaved people may develop a clinically significant depression.Other psychiatric conditions which are commonly associated with grief include clinical depression, anxiety disorders, substance abuse and dependence, psychotic disorders, and post-traumatic stress disorder (PTSD)[98, 184, 185]. Disenfranchised grief, or grief not recognized by mainstream society such as perinatal grief, may also remain silently problematic if not explored and expressed in a safe environment.
Psychological or Psychiatric Intervention for Parents and Families
Psychologists or psychiatrists may provide assistance by directing their efforts to improve care at the level of the individual; groups of individuals such as a family, patient group or staff group; or at an organizational level. Interventions with individuals include goal-setting, problem-solving, relaxation and hypnosis, cognitive behavioral therapy, counseling and psychotherapy, and behavioral strategies. A mental health specialist may also contribute to the care team by raising psychological awareness, providing education and specific skill teaching, supervision of specific cases, collaboration, and support of the team’s decision-making and cohesiveness[98, 186].
Psychiatric care should be recommended for any family or staff member whose grief interferes with the functions of daily living for a prolonged period of time, or who demonstrates signs and symptoms of severe depression, loss of self-esteem, overwhelming guilt, suicidal ideation or anxiety in relation to the death. These reactions are rare but serious and require prompt intervention. Although a psychiatric referral may be made by the baby’s physician, notification of the affected family member’s doctor or occupational health clinic is usually advised.
Siblings or affected children may also struggle with grief and require professional support. Some signs include excessive crying, regressive behavior such as bed-wetting, disabling depression, suicidal thoughts, persistent anger or temper tantrums, lack of interest in daily activities, fear of being alone, withdrawal from peers, severe separation anxiety, delinquency or promiscuity, persistent sleep problems, and/or a sharp decline in school performance. If possible, the child’s pediatrician should be contacted to make any necessary referrals.
Special Circumstances Relating to Fetal or Infant Death
Coping with a baby’s death is especially difficult because the child’s life is brief and few memories have been created. Parents may feel responsible and guilty that their child has died. Support systems for bereaved parents may be weak, and community insensitivity is not uncommon. Bereaved parents often face caring for other children while mourning one or more who died, especially in cases of multiple births with one or more losses. Parents anticipating the death of their child may feel conflicting emotions of relief intermixed with sadness at the time of death. In addition, parents may grieve in different ways, and may not be available to each other as sources of support while experiencing their individual sorrow.
Grandparent and Sibling Grief
Grandparents and siblings also experience unique types of grief. Grandparents may grieve both for the loss of their grandchild and for their child’s anguish, and may be assisted by the same resources available for parents. Siblings may believe that they are the cause of the infant’s death, or that they should have been the one to die. Their needs may be overlooked because the affected infant consumes all parental attention, and they may experience social isolation and withdrawal that can have a lifelong impact. Children may be helped to express their grief by attending and/or participating in the funeral, painting or drawing a picture for the baby, writing a letter, lighting a candle, planting a tree, telling stories, or creating something in memory of the baby.
Hospital and Community Resources
Support groups for family members may be excellent resources for ongoing grief work and recovery[191-193]. To regain function, families must accept the reality of the loss, work through the pain of grief, adjust to life without the deceased, and emotionally relocate the loss within their life in order to be ready to form new relationships[173, 194]. Parents who do not work through their grief are at increased risk of long-term mental and physical morbidity. One study showed that support including contact with a trained grief worker, as well as access to specially designed resources, increased parental coping strategies.
Bereavement support may be hospital or community based, and varies by region. Listed below are some examples of community neonatal grief support groups, which may vary by region throughout the State. A copy of these resources is also available in the “Forms” section.
A Place to Remember: www.aplacetoremember.com
“Uplifting support materials and resources for those who have been touched by a crisis in pregnancy or the death of a baby.”
Bereaved Parents of the USA, St. Louis Chapter: www.bpusastl.org
“A nationwide self-help organization designed to aid and support bereaved parents and their families as they struggle through their grief after the death of a child.”
Bo’s Place: www.bosplace.org
“A bereavement center offering grief support services to children, ages 3 to 18, and their families who have experienced the death of a child or an adult in their immediate family, as well as programs for grieving adults. Bo’s Place is founded on the belief that grieving children sharing their experiences with each other greatly helps in their grief journey.” Bo’s Place is located in Houston.
Centering Corporation: www.centering.org
“Dedicated to providing education on grief and loss for professionals and the families they serve.”
Faces of Loss, Faces of Hope: www.facesofloss.com
“A place for us to come together and share our stories and our faces with others who may be looking for reassurance that they are not alone (in miscarriage, stillbirth and infant loss).”
“A greater Houston area-based pregnancy and infant loss support group for parents whose babies have died any time from conception through late infancy. Our mission is to help parents cope with the feelings of grief and isolation that accompany the loss of a baby.”
Hygeia Foundation: www.hygeiafoundation.org
“An international community of compassion, empathy and support for families who have endured the tragedy of miscarriage, stillbirth and neonatal/infant loss.”
March of Dimes: www.marchofdimes.com
“Our mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies’ lives. March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birth weight.”
M.E.N.D. (Mommies Enduring Neonatal Death): www.mendhouston.com
“A Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death.” M.E.N.D. offers several support and play groups in the Houston area.
MISS Foundation: www.missfoundation.org
“A volunteer-based organization committed to providing crisis support and long-term aid to families after the death of a child from any cause. MISS also participates in legislative and advocacy issues, community engagement and volunteerism, and culturally competent, multidisciplinary, education opportunities.” The MISS Foundation website included information on local support groups.
Perinatal Support of Texas: www.perinatalsupportoftexas.org (website under construction)
An organization dedicated to offering resources, support and assistance with decision-making to families given a life-limiting prenatal diagnosis.
“Serving those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth or in the first few months of life. The primary purpose is to provide support toward positive resolution of grief experienced at the time of, or following the death of a baby. This support encompasses emotional, physical, spiritual and social healing as well as sustaining the family unit.”
The Compassionate Friends: www.thecompassionatefriends.com
“The Compassionate Friends is about transforming the pain of grief into the elixir of hope. It takes people out of the isolation society imposes on the bereaved and lets them express their grief naturally. With the shedding of tears, healing comes. And the newly bereaved get to see people who have survived and are learning to live and love again.” The Compassionate Friends network has chapters in the Houston and surrounding areas.
The Light Beyond: www.thelightbeyond.com
A forum, short movie, blog, e-cards and library to support those in grief.
The Women’s Place: www.women.texaschildrens.org/Our-Services/Behavioral-Health-and-Education
Providing specialized, expert care for loss and grief (including stillbirths, miscarriage or the death of a child during the first year) in a warm, supportive environment.
“Offers a number of services to grieving parents and their caregivers including the following: grief support groups, literature, educational programs, training workshops, group development assistance and referral assistance.”
Forever Missed: www.forevermissed.com
Last Memories: www.last-memories.com
Memory Of: www.memory-of.com
Remembered Forever: www.remembered-forever.org
Additional Grief Support Books and Resources
• When Dinosaurs Die: A Guide to Understanding Death by Laurie Krasny Brown, illustrated by Marc Brown
• The Fall of Freddie the Leaf: A Story of Life for All Ages by Leo Buscaglia, Ph.D.
• Lifetimes: A Beautiful Way to Explain Death to Children by Bryan Mellonie, illustrated by Robert Ingpen
• The Kids Book about Death and Dying: By and For Kids by Eric Rofes
Spanish for children:
• El Arbol de Suenos/The Dream Tree by Fernando Alonso
• La Fiesta Del Dia de Los Muertos/The Day of the Dead “Fiesta” by Jorge Ancona Diaz
• Yo Siempre Te Querré/i’ll Always Love You by Hans Wilhelm
For preteens & teens:
• When a Friend Dies: A Book for Teens about Grieving and Healing by Marilyn E. Gootman
• Straight Talk about Death for Teenagers: How to Cope with Losing Someone You Love by Earl A. Grollman
• Lost Lullaby by Deborah Golden Alecson and Kathleen Nolan
• Mom: A Mother’s Journey from Loss to Hope by Cynthia Baseman
• Parenthood Lost: Healing the Pain after Miscarriage, Stillbirth, and Infant Loss by Michael R. Berman, M.D.
• When the Bough Breaks: Forever after the Death of a Son or Daughter by Judith Bernstein
• Empty Cradle, Broken Heart: Surviving the Death of Your Baby by Deborah Davis
• Loving and Letting Go: For Parents Who Decided to Turn Away from Aggressive Medical Intervention for Their Critically Ill Newborns by Deborah L. Davis
• When God Doesn’t Make Sense by Dr. James C. Dobson
• Recovering from the Loss of a Child by Katherine Fair Donnelly
• Our Baby, Our Love, Our Loss by Kathi Evans
• Grieving Dads by Kelly D. Farley
• Couple Communication After a Baby Dies: Differing Perspectives by Sherokee Ilse and Tim Nelson
• A Broken Heart Still Beats: After Your Child Dies by Anne McCracken
• A Guide for Fathers: When a Baby Dies by Tim Nelson
• How to Survive the Loss of a Child: Filling the Emptiness and Rebuilding Your Life by Catherine Sanders
• Strong And Tender: A Guide for the Father Whose Baby Has Died by Pat Schwiebert
• Given in Love but Not Mine to Keep: Finding Strength in the Loss of a Newborn Child by Jan Wolfe Rosales
• Coming to Term: A Father’s Story of Birth, Loss, and Survival by William Woodwell Jr.
• A Gift of Time: Continuing Your Pregnancy when your Baby's Life is expected to be Brief by Amy Kuebelbeck and Deborah L. Davis
Spanish for parents:
• Cuando Hola Significa Adios by Pat and Kirk P. Schwiebert
• Forgotten Tears: A Grandmother’s Journey through Grief by Nina Bennett
• When a Grandchild Dies: What to Do, What to Say, How to Cope by Nadine Galinsky
After an infant dies in the NICU, the family returns home and leaves behind the support systems, relationships, and routines they established in the hospital. Maintaining contact with families who have experienced a loss may assist in the grieving process, assures the parents that they have not been abandoned, and may provide the family an enduring connection with their child’s caregivers[4, 148, 196]. In particular, bereaved parents appreciate follow-up contact from the physician who cared for their child[197, 198], and contact with families may allow physicians to process their own grief. In the community hospital setting, infant deaths are less frequent, potentially allowing more time and attention for follow-up. In larger hospitals and tertiary care centers, a secure database of deceased patients, their families’ contact information, and interventions performed may assist in providing accurate and complete follow-up. If the database also corresponds to the nursing bereavement support checklist, it may be useful for future quality initiative projects and long term improvements within the bereavement program.
One possible timeline for follow-up is described here: After a patient death, the assigned social worker calls the family after one week to check in, and also after one month to offer a meeting with the medical team and an opportunity to discuss the autopsy report when it becomes available. Referrals to bereavement support groups and appropriate professionals or agencies are made at this time. A sympathy card is sent and a phone call is made to the family at the one year anniversary. Further meetings with the healthcare team may be arranged at any time per family request. A yearly memorial service for families and staff supported by the hospital provides a meaningful way to remember losses that have occurred each year. Physicians are encouraged to attend funerals send a hand-written condolence card to the family following the death of the infant.
It is important to remember that not all families bond with an ill infant, and some may not desire support or contact after the infant dies. An “opt-out” card included in the bereavement support materials may be used for this express purpose.
Writing a Condolence Card
Writing a condolence card to the parents of a deceased baby for whom the physician has cared may be beneficial for both the family and the doctor. Writing is an excellent medium for expressing sentiments which may be difficult to say directly. Many parents have stated that a letter expressing sympathy from their baby’s doctor was extremely meaningful. Guidance regarding letter format may be found in a 2001 New England Journal of Medicine article:
One can begin the letter with a direct expression of sorrow about the death, such as "I am writing to send you my condolences on the death of your [baby]." In our condolence letters, we try to include a personal memory of the patient and something about the patient's family…Specific references to…courage during the illness, or the patient's character can bring life to the letter. We also state that it was a privilege to have participated in the patient's care. We point out the comfort the patient received from the family's love. We conclude the letter with a few words of support to let the family know our thoughts are with them. These suggestions are intended not as a substitute for the expression of genuine thoughts and feelings but as an aid in approaching the task.