Supporting families through loss and grief is an integral part of Family-Centred Maternity and Newborn Care. Perinatal loss includes infertility during the preconception period, fetal death during pregnancy (miscarriage, ectopic pregnancy, induced abortion and stillbirth) and infant death in the first year of life (neonatal or post-neonatal death). Principles for the care of families that experience a loss 1. Individualized care is provided to meet bereaved parents' personal, cultural and religious needs. 2. Compassionate communication with parents is important both before and after their loss. 3. Parents are given the information and support they need to make informed decisions about their own and their baby's care. 4. Accept and validate parents' feelings and make no assumptions about the intensity and duration of their grief. 5. Parents are cared for in an environment they feel is appropriate and private. 6. Ideally, the same health care providers (HCPs) are responsible for providing care during and following the loss. 7. The support meets the needs of partners or support people and families. 8. Parents have opportunities to create memories of their baby. 9. Parents are helped in performing rituals they consider important. 10. The remains of babies and fetuses are always treated with respect. Options around sensitive care and disposition of the baby after death are discussed. 11. Effective interdisciplinary communication is essential to ensure that all health care team members have accurate and current information. 12. Ongoing support is an essential part of care and is available to everyone, including during a subsequent pregnancy and after the birth of another baby. 13. HCPs involved in the care of bereaved parents have opportunities to develop and update their knowledge and skills, and have access to emotional support for themselves.# 
Grief is the normal response to losing a loved one. The experience of loss is unique to each person and to the circumstances. 1 Grief reactions are not based on gestational age, age of the infant, socioeconomic or educational status, number of losses experienced or number of living children. Nor is there a right or wrong way to grieve after a loss. 2 High quality bereavement care includes compassionate and open communication, with informed choice and individualized care. 3 Compassionate communication, the most important element of bereavement care, is required in all aspects of care throughout and following the loss. It includes listening and providing clear information in a sensitive manner.
Effective communication between individual HCPs and care teams and services is also essential to ensure consistent care and accurate information about all available options. Parents and families need the necessary information and time to make the decisions that are right for them, their baby and their family.
Care and support should always be tailored to meet individual needs, preferences and, to the extent possible, cultural practices. It is important not to make assumptions about peoples' wishes and decisions. Institutional practices, protocols and practitioners' belief systems can be unhelpful and even harmful when what is required is empathy, compassion and providing the family with a sense of control.

# > ADDITIONAL RESOURCES ON LOSS AND GRIEF: SEE APPENDIX A
Supporting families through loss and grief is an integral part of Family-Centred Maternity and Newborn Care. The emotional impact of perinatal loss is felt by parents, family members, friends and the health care providers (HCPs) caring for the bereaved family. For some parents and families, this is their first major bereavement and they are unfamiliar with the process and effects of grieving. The role of health care services and community organizations is critical in supporting families experiencing loss any time during the perinatal care trajectory.

# PERINATAL LOSS
A significant portion of Canadian families experience a perinatal loss each year. Perinatal loss includes infertility during the preconception period, fetal death during pregnancy (miscarriage, ectopic pregnancy, induced abortion and stillbirth) and infant death in the first year of life (neonatal or post-neonatal death). The type of loss does not predict or dictate a family's experience of the loss.
TYPES OF PERINATAL LOSS  Prior to pregnancy

# Infertility
The inability to conceive after 1 year of regular unprotected sexual intercourse.

# During pregnancy
Fetal mortality An intrauterine death of a fetus at any gestational age.

# Early pregnancy losses (<20 weeks of gestation)
Ectopic pregnancy: A pregnancy that occurs outside of the uterus; usually diagnosed in the first trimester.

# Miscarriage (spontaneous abortion):
The death of a fetus in the womb during the first 20 weeks of pregnancy.
Induced abortion: A procedure to terminate a pregnancy for personal reasons, a prenatal diagnosis of a fetus with a life-limiting anomaly or a significant maternal medical concern.

# Late pregnancy losses ( 20 weeks of gestation)
Stillbirth: The death of a fetus at 20 weeks' gestation or 500 g birth weight that occurs prior to its complete expulsion of or extraction from the mother. i

# After birth

# Infant mortality
The death of an infant during the first year of life.

# Infant deaths (0-364 days)
Neonatal death: The death of a baby who dies within 27 days of being born.
Post-neonatal death: The death of a baby between 28 and 364 days of life.
i In Quebec, only deaths of fetuses weighing 500 g (i.e., stillbirths), regardless of the gestation period, must be reported.
In Canada, fetal mortality rate is defined as the number of fetal deaths per 1,000 total births (live births and stillbirths). All provinces and territories (excluding Quebec) require that all stillbirths with a birth weight of 500 g or greater or a gestational age at delivery of 20 weeks or greater be registered (including those following pregnancy termination). Quebec requires the registration of stillbirths with a birth weight of 500 g or greater and does not register pregnancy terminations. 5 Infant mortality rate is defined as the number of deaths of live born babies in the first year after birth per 1,000 live births.
Comparison of the rates of pregnancy and infant loss is affected by the different definitions used provincially, nationally and internationally. Data from some Canadian provinces (e.g., Ontario, Quebec) are excluded because the provinces do not contribute to the Canadian Institute for Health Information-Discharge Abstract Database (CIHI-DAD) or because of data quality concerns.
In addition, some rates are reported per total births (including stillbirths) or only per total live births.

# LOSS PRIOR TO PREGNANCY
Infertility is the inability for a couple to conceive after 1 year of regular unprotected sexual intercourse for couples where the woman is aged less than 35 years and 6 months of regular unprotected sexual intercourse where the women is aged over 35 years. 4 In Canada, the overall number of people facing fertility problems or impaired fecundity increased by 10.3% between 1984 and 2009-2010. The percentage of couples with fertility problems was estimated at 5.4% in 1984, 8.5% in 1992 and 15.7% in 2009-2010, representing almost 1 in 6 couples. 9,10 Although the rate of infertility increases with women's age, the trend in rising infertility rates is not exclusive to older women. The infertility rate was 4.9% in 1984 among couples with a female partner aged 18-29 years and between about 7% and 13.7% in 2009-2010. 9,10 Among couples with a female partner aged 40-44 years, the infertility rate was estimated to be between 14.3% and 20.7% in 2009-2010. 10 In 1984, the rate was only 4.6%. 9 Factors that adversely affect fertility include obesity, smoking, alcohol use and sexually transmitted infections.  The most common causes of female infertility include problems with ovulation, damage to the fallopian tubes or uterus or issues with the cervix. 14 The increase in the incidence of infertility is due, in part, to a delay in childbearing. Possible explanations for the postponement of pregnancy include couples starting to live together or getting married at older ages, readily available and effective birth control options and more women in the workforce.

# LOSS DURING PREGNANCY
Fetal mortality is the intrauterine death of a fetus at any gestational age. Fetal death can be due to ectopic pregnancy, miscarriage, induced abortion or stillbirth. Between 2005 and 2014, the overall rate of fetal mortality fluctuated between 7.5 and 8.1 per 1,000 total births. The fetal mortality rate is significantly higher among multiple births (13.5 per 1,000 total births in 2014) than among singletons (4.8 per 1,000 total births). 15 A fetal death may be a complete surprise, with no warning signs, that is diagnosed during a routine ultrasound scan; in other cases, women may notice decreased fetal movements or otherwise suspect that something is wrong. 16 An ectopic pregnancy is a pregnancy that develops outside of the uterus, usually in the fallopian tubes. An ectopic pregnancy occurs in approximately 1-2% of diagnosed pregnancies. 17 Parents may be frightened or distressed if they are waiting for the confirmation of a suspected ectopic pregnancy or receiving treatment for an ectopic pregnancy. Some parents may not have known they were pregnant. Sometimes, HCPs become so focused on the medical/surgical and potential life-threatening nature of ectopic pregnancy, they forget to address the fear and distress as well as the feeling of loss.
Spontaneous losses occur most frequently in the first trimester, with genetic defects the most common cause. Approximately 15% to 25% of pregnancies end in a miscarriage, and the rate increases with maternal age. 18 The miscarriage rate may in fact be higher because many women do not know they were pregnant, but think they had a heavy menstrual period. In addition, some women choose not to disclose their miscarriage to their HCP.
Parents may feel many emotions during or following a miscarriage-grief, distress, shock, confusion, regret, anger, guilt, stress or mixed emotions.  For some, these emotions may be intense or overwhelming. 21 Others may feel relieved if the pregnancy was unwanted. Not all women or partners believe that a miscarriage represents the death of a baby. Regardless of what meaning they ascribe to the loss, all parents deserve the same degree of attention and support from HCPs. 22 An induced abortion is a procedure performed to terminate a pregnancy. The reasons may be personal (e.g., the pregnancy is unwanted, financial situation or relationship issues) or medical (e.g., a prenatal diagnosis of a lifelimiting anomaly such as fatal syndromes, congenital anomalies; a significant maternal medical concern such that continuing the pregnancy would be hazardous to the mother's physical or mental health). The rate of termination of pregnancy with a birth weight of at least 500 g or 20 weeks gestational age has remained steady, ranging between 0.5 and 0.6 per 1,000 total births in 2005 and 2014, respectively. 15 In all the provinces except Quebec, stillbirth is defined as fetal death at a birth weight of at least 500 g or a gestational age at delivery of at least 20 weeks and no signs of life (i.e., no heartbeat or breathing). In Quebec, stillbirth is defined as fetal death at a weight greater than 500 g irrespective of gestational age. 5 National stillbirth rates have fluctuated at between 7.9 and 8.3 per 1,000 total births between 2013 and 2017. 23 Parents of multiples face a unique situation when 1 or more of their babies die. One of a set of multiples may die in utero or in the Neonatal Intensive Care Unit (NICU) after a premature birth. 24 In such situations, parents often feel torn between grief at the loss of the baby and joy at the survival of the other baby or babies. They may also feel afraid, guilty and helpless. When the death occurs in utero, some parents are unable to start grieving for the baby or babies who died until after the birth, possibly because they feel they cannot say goodbye or have a funeral. 25 Some parents worry that their fear or grief may affect the surviving baby or babies. 25 It is important for HCPs to acknowledge that parents' feelings are normal and to provide opportunities for parents to voice their concerns.

# LOSS AFTER BIRTH
Infant mortality is defined as the death of an infant in the first year of life. Between 2002 and 2011, the infant mortality rate in Canada fluctuated between 4.9 and 5.4 per 1,000 live births. During that time, neonatal mortality rates fluctuated between 3.5 and 3.9 per 1,000 live births, while post-neonatal mortality rates fluctuated between 1.2 and 1.6 per 1,000 neonatal survivors. Neonatal mortality accounted for 73% of infant deaths in 2011. 15 

# CONGENITAL ANOMALIES
Learning that a baby has a congenital anomaly (also known as a birth defect, a congenital disorder or a congenital malformation) can be devastating to families. Congenital anomalies are usually structural or functional. 26 They occur during intrauterine life and can be identified prenatally, at birth or later in infancy (e.g., hearing loss).
Although approximately 50% of all congenital anomalies cannot be linked to a specific cause, some have known genetic, environmental or other causes or risk factors (e.g., maternal age, infections, maternal nutritional status). 26 Between 2005 and 2014, the prevalence of congenital anomalies in Canada fluctuated between 377.5 and 430.5 per 10,000 live births. 15 Congenital anomalies are the second leading cause of infant mortality in Canada. Congenital anomalies detected prenatally may affect decisions about continuing the pregnancy. What parents decide to do when they learn about their baby's anomaly depends on factors such as the knowledge, attitude and communication style of the provider, the information they receive about the condition, their personal beliefs, culture and education level as well as available services and support. 27 After a baby is diagnosed with a congenital anomaly, parents often go through stages of grief similar to those they would have experienced if they had lost the baby. They mourn the loss of the "normal" healthy baby they were expecting. 27 Congenital anomalies can lead to long-term disability, significantly impacting individuals, families and health care systems. 26 Challenges families face include barriers due to bias, quality of life issues, finding resources and support, and helping their child transition to appropriate specialized adult care. It is important that information be provided to parents in clear, timely and sensitive ways that enhance collaborative decision making. 28 During All preterm infants are at greater risk than term infants for lifelong health problems. Medical problems associated with preterm birth include respiratory distress syndrome, chronic lung disease, cardiovascular disorder, asthma, and hearing and vision loss. 30,31 Early births also take a financial toll on families. Emotional tolls can be exacerbated by the lost weeks of pregnancy that would have been spent preparing for parenthood, the inability to take the baby home immediately after birth due to the need for specialized care, financial burdens and the potential or real possibility of the infant dying. 1 In NICUs, infant death commonly occurs after a decision is reached to limit or withdraw lifesustaining treatments when it becomes evident that continuing treatment may prolong the baby's suffering without improving his or her quality of life. 32 These types of decisions can be ethically challenging and morally distressing for parents and HCPs. 33 Helping parents with these decisions through an interdisciplinary, family-centred approach can reduce the provision of ineffective and unnecessary interventions and reduce the suffering of both babies and parents. 33,34 HCPs can also help prepare parents by initiating discussions of how their baby will be cared for, including pain management, when limits to or withdrawal of life-sustaining treatments are being considered. It is important to advise parents that it is difficult to predict how soon a baby will die following withdrawal of life support. 35 When duration of survival is uncertain, it is necessary to prepare them for the possibility that their baby may survive for longer than they may expect.
A perinatal psychologist or clinical ethicist can play a significant role is assisting the family and the attending HCPs. 36 7-7

# PRINCIPLES OF CARE FOR

# FAMILIES EXPERIENCING A LOSS
The support and care that parents receive around the time of a perinatal loss is crucial as it may affect their long-term wellbeing. 15,37 In order to provide holistic care that is sensitive to individual needs, it is important to take a family-centred integrated approach.
A family-centred approach requires that HCPs consider parents' personal, cultural, spiritual and religious needs and be aware of how these may affect their decisions on care for themselves and the baby who has died or is expected to die. Parents' opinions and beliefs may affect the decisions they make regarding antenatal screening and diagnostic testing, miscarriage, termination of pregnancy, continuing a pregnancy after a fetal anomaly is diagnosed, postmortem examinations or funeral practices. 3 These factors may also influence how parents express emotions and grief or how they view themselves as parents.
The role of integrated care-ensuring good coordination, cooperation and communication between and within services provided by health care services, social care systems and local and national support organizations-is also crucial when providing holistic care. 38 PRINCIPLES FOR THE CARE OF FAMILIES THAT EXPERIENCE A LOSS 3, P.11,15,18,39,40 1. Individualized care is provided to meet bereaved parents' personal, cultural and religious needs.
- Compassionate communication with parents is important both before and after their loss. This means information is communicated sensitively and clearly and is tailored to meet the individual needs of parents, using the language they use when discussing their baby or fetus. HCPs are careful to avoid using terms that may be misinterpreted or considered inappropriate.
- Parents are given the information and support they need to make informed decisions about their own and their baby's care. The HCP ensures parents' concerns are heard and addressed.
- HCPs accept and validate parents' feelings and make no assumptions about the intensity and duration of their grief. Responses are personal and not determined by the gestational age or infant's age.
- Parents are cared for in an environment they feel is appropriate, ideally in a single room or dedicated bereavement room for the sake of privacy.
- If possible, the same HCPs are responsible for providing care during and following the loss. Parents can benefit from the support of a continuous team of HCPs who are trained in providing bereavement care and are comfortable offering anticipatory guidance.
- The support meets the needs of partners or support people and families.
- Parents have opportunities to create memories of their baby.
- Parents are helped in performing rituals they consider important.
- The remains of babies and fetuses are always treated with respect. Options around sensitive care and disposition of the baby after death are discussed.
- Effective interdisciplinary communication is essential to ensure that all health care team members have accurate and current information. This means that all involved in caring for the family know their preferences and decisions, and parents do not need to repeatedly explain their situation.
A seamless and informed handover of care from the hospital to the community is equally important.
- Ongoing support is an essential part of care and is available to everyone. Support is available to all women and their partners during a subsequent pregnancy and after the birth of another baby.
- HCPs involved in the care of bereaved parents have opportunities to develop and update their knowledge and skills and have access to emotional support for themselves.

# 7-9 3 GRIEF AND MOURNING
A loss during pregnancy or infancy is a complex and unique tragedy that profoundly affects parents as individuals, as couples and as families. 41,42 The death of an unborn baby or newborn can represent the loss of a significant person and a family member and the loss of hopes, dreams and expectations for the future. The loss may extend to some aspect of self, the loss of self-esteem, the loss of a stage of life or a failure in parenting.  This may be the first time parents have felt bereaved and the first time they experience emotional turmoil and devastation

# THEORIES OF GRIEF
Several theories and frameworks help HCPs understand why perinatal loss is unique and how it can affect bereaved families, as well as the HCPs who care for them. The focus of models of loss and bereavement has gone from theories of attachment and loss, to concepts of acute grief, to tasks of mourning, to stages, to psychological processes and phases.
THEORIES OF GRIEF  Theory Description

# Attachment Theory
- Emphasizes the interrelationships between attachment, affectional bonds, separation and loss in human relationships.
- Provides a framework for understanding the grief and bereavement that people feel and how these relate to pre-existing relational bond.

# Psychodynamic Theory
- Provides an introspective view of the process of coping with any loss in an adaptive manner.
- Conceptualizes that the duration and intensity of the grieving process force a psychological restructuring of self.

# Interpersonal Theory
- Offers a lens through which to understand the impact prolonged depression (or events that contribute to similar symptoms) can have on interpersonal relationships as well as social relations.
- Focuses on addressing the experience of symptoms as well as social adjustment and interpersonal relations.

# Cognitive Stress Theory
- Stipulates that any stress-inducing situation requires cognitive processing and restructuring.
- "Cognitive schemas" that guide thoughts, beliefs and assumptions about the origin and outlook of events are used to help make sense of the world.
THEORIES OF GRIEF  Theory Description
Five Stages of Grief 52 - The stages of grief typically experienced are denial, anger, bargaining, depression and acceptance.
- Individuals do not necessarily go through all these stages in an orderly manner; the experience of grief is varied and unpredictable.

# Dual Process Model of Coping
- Bereaved people alternate between 2 coping modes: loss orientation (focused on adjusting to a loss) and restoration orientation (focused on how to move on in light of the loss).
- Oscillation is a dynamic process where grief work and confrontation overlap. Both are necessary in adaptive grief work, that is, adjusting to life without the loved one.

# Tasks of Mourning
Individuals accomplish 4 tasks in order to complete the process of mourning and for equilibrium to be restored:
- Accepting the reality of the loss;
- Processing the pain of grief;
- Adjusting to the world without the deceased; and
- Finding an enduring connection with the deceased while moving forward with life.

# Theory of Caring
- Caring: "nurturing way of relating to a valued other toward whom one feels a personal sense of commitment and responsibility." 55,p. 165 - Involves 5 caring processes: knowing, being with, doing for, enabling and maintaining belief.

# EXPRESSIONS OF GRIEF
Grief is a multifaceted response to loss that affects the entire person. It includes physical, emotional, intellectual, spiritual, social and occupational elements. 57 While grief can affect a person's emotional and mental wellbeing, it is a normal response to bereavement.
The experience, expression and intensity of grief following a perinatal loss are unique to each individual. 3,58 Grieving style is formed by a person's culture, personality and gender. Individuals need to be allowed to express grief in their own way. Some parents and family members have mental health problems following a loss during pregnancy or in infancy. Some of the more common mental health problems that affect bereaved parents include prolonged grief, clinical depression, anxiety disorders and post-traumatic stress disorder. It is incumbent upon HCPs to assess bereaved parents and offer treatment. 3 Ideally, parents are referred to mental health professionals (e.g., counsellors, psychologists, mental health support workers, psychiatrists) with perinatal bereavement training who understand the unique experiences and challenges the family may be facing. 3 

# GRIEF EXPERIENCES OF PARENTS
Parental grief has been recognized as the most intense and overwhelming type of grief. 59 Because individuals grieve in different ways, parents' reactions may be incongruent even though both have had the same loss. 60 The depth and length of each parent's grief depends to some extent on their personality, life experiences and previous experiences of loss, attachment to the baby or to pregnancy, the significance and circumstances of the loss and the support network available to them. 54 It is often assumed that partners bond less deeply than mothers with an unborn child and that they are less severely affected by a loss, especially one that occurs early in pregnancy. 61 In fact, many partners grieve deeply and intensely in response to the death of their baby. 62 Partners may believe they must put their grief on hold in order to support the mother and focus on other practical tasks. 58, Gender expectations may also affect men's ability to acknowledge their own needs. Men may feel they have to be the supporter or strong when faced with a pregnancy loss. Continued research is needed on how men experience pregnancy and infant loss, including the experiences of gay and transgendered men. 66 As a protective mechanism from the pain of loss and grief, parents may withdraw emotionally and physically from the experience or from the family. 63 A perinatal loss may create an added strain on the couple's relationship or it may strengthen it. 63, Some parents have difficulties in their relationship if both do not have the same experiences of grief and are unable to accept each other's different ways of grieving or do not feel they have support from their partner. The parents may also experience sexual difficulties after a loss that affects their relationship. 71 Although the intensity of grief can ease with time, it can also fluctuate depending on circumstances. 58,64 Significant dates such as the baby's due date, the date the baby died, the baby's birth date, Mothers' day, Fathers' day, family celebrations and important life events may trigger parents' feelings of grief.

# GRIEF EXPERIENCES OF OTHER FAMILY MEMBERS AND OF FRIENDS Siblings
Children are usually profoundly affected when their parents are grieving. Just like adults, children's grief response can range from a minor reaction to feeling their world has shattered. Siblings in bereaved families suffer 2 losses: the sibling they were expecting and their parents as they knew them before their sibling's death. 72 Children's response to loss is determined by their personality, age, developmental stage and how the family is coping. Children often cope with grief and loss through play. Support from adults is important as they learn how to grieve from the adults that surround them. While many people want to protect children from the reality of death, as with adults, it is important to provide children with clear, developmentally appropriate explanations for the loss and involve them in memory making and legacy building. How much children are involved in rituals after a loss depends to some extent on age, personal preferences and cultural norms.
" Children's response to loss is determined by their personality, age, developmental stage and how the family is coping.

# Grandparents
Many grandparents are deeply affected by a perinatal loss. For some, the loss evokes painful memories of their own losses for which they did not receive adequate support. Grandparents often grieve for their much anticipated grandchild and for their child whose baby has died. 44,58 They may feel distress in their inability to lessen their child's pain and grief. Grandparents may want to see and hold the baby and participate in the funeral, memorials and other rituals.

# Extended family members and friends
For some families or cultures, there is no division between immediate and extended family, and grandparents, aunts, uncles, siblings and cousins are all regarded as close family, with a new baby considered an addition to the whole family.
For some people, the definition of family may also include close friends. This means that a larger number of people than anticipated may be grieving over the death and want to be directly involved.

# ASSESSMENT OF THE BEREAVED FAMILIES' CARE AND SUPPORT NEEDS
A detailed assessment of the family's grief reactions helps HCPs understand the meaning that each family member has ascribed to the perinatal loss. Such an assessment includes physical, emotional, intellectual, spiritual and social components. A continuous assessment ensures that the care and support provided in the hospital and the community is appropriate and meets family members' needs.

# ELEMENTS OF GRIEF AND LOSS NEEDS ASSESSMENT
Social assessment:
- The person's past experiences and customary way of dealing with death or other crisis situations
- The cultural or religious practices that the person may wish to observe or that may constrain them - The person's past perinatal and other losses, which may influence the grieving process
- The relationships between partners, children and grandparents (and the involvement the parents wish others to have in the grieving process
- The family support system
- The ages of other children and how the parents plan to explain the death to them Psychological assessment:
- Where the parents and the family are in their grieving process
- Help families and supporters accept their feelings, understand the importance of expressing these feelings, and gain hope that the pain will diminish Physical assessment:
- The physical effects of pregnancy, labour and birth and the state of the mother's health during the early postpartum period. This might include excessive bleeding or cramping following a D & C, exhaustion following a long and difficult labour, pain following a caesarean birth and breastmilk production
- The medications taken that might dull her perception of events and limit her ability to recall the details of her loss
- Recognition of any health problems that might affect the mother's ability to conceive and bear children in the future

# Spiritual assessment:
- May be easily overlooked, especially if the person does not profess affiliation with a recognized group - A person's spiritual nature is broader than organized religions; all individuals have a spiritual self with needs that are likely to be heightened at the time of perinatal loss  15,37,73 In order to create a climate of trust, the behaviours, language and timing as well as how much and the way information is provided are important factors affecting parents' experiences of care.
Allowing enough time to process the information also promotes feelings of being cared for. 15 Parents appreciate when HCPs talk with them in a sensitive but clear and honest manner. 31 It is important that HCPs consider the possible impact of the words, terms and phrases they use. 36,37 A sentence that seems inoffensive and practical when speaking to a colleague may be disturbing for bereaved parents. For example, although the terms the products of conception, the embryo or the fetus are clinically correct, they may be distressing for the family. If the baby has been named, parents may consider it important that they and HCPs use his or her name, spell the name correctly and refer to the baby by the appropriate gender pronoun. 31 Other parents may feel more comfortable using the clinical expressions (e.g., "the fetus"), while other parents may prefer to think of their loss as the end of a pregnancy rather than the death of a baby.
Posture, gestures, facial expression and tone of voice are the non-verbal communication cues that can affect how bereaved parents perceive and understand the information HCPs are conveying. 37,74 Parents may discount information if body language does not conform to what is being said. HCPs need to be conscious of the cues and behaviours they display, as individuals may interpret components of non-verbal communication in different ways (i.e., cultural differences in the meanings of touch, some gestures, facial expressions and eye contact).
COMMUNICATING WITH FAMILIES EXPERIENCING A PERINATAL LOSS  What to Say What Not to Say
- "I'm sorry" or "I'm sorry for your loss"
- "I wish things had turned out differently"
- "I feel sad" or "I am sad for you"
- "How are you doing with all of this?"
- "Can you tell me about what you are feeling?"
- "Can you tell me what happened today?"
- "What is going on right now?"
- "What is the hardest part for you right now?"
- "What can I do for you?" or "How can I help?"
- "I'm here and ready to listen"
- "Do you have any questions?"
- "Can I call someone for you?"
- "What do you need right now?"
- "We can talk again later"
- "Take all the time you need"
- "We are here to help"
- "Call us if you need us"
- "Tell me about your supports at home"
- "It's ok to cry"
- "This happened for the best" or "Everything happens for a reason"
- "This is nature's way"
- "This is God's will" or "God knows best" or "God needed an angel"
- "It could be worse"
- "At least it all came out"
- "At least you didn't know the baby"
- "You're young, you can try again" or "You can have more children"
- "Time will heal"
- "You have an angel in heaven"
- "It's good your baby died before you got to know him / her well"
- "It was not meant to be"
- "Over time you will forget your baby"
- "It's just your body's way of ending an unhealthy pregnancy"
- "This happens all the time"
- "Be grateful for the children you have"
- "You need to move on" 

# BREAKING BAD NEWS
Bad news may be defined as "any information which adversely and seriously affects an individual's view of his or her future". 79 Breaking bad news is a complex communication task. HCPs will want to ensure that they have the privacy and time to convey bad news; respond to parents' emotional reactions; include them in decision making; help them deal with the stress created by their expectations; and allow for the involvement of multiple family members. Also important is the dilemma of how to provide hope when the situation appears bleak. 80 Although breaking bad news is frequently necessary, this responsibility poses a major challenge and can create difficult, painful situations. One of the hardest aspects of breaking bad news is not knowing how parents will react (i.e., will they be silent, tearful, angry, disbelieving or distressed and will they feel guilty or blame themselves or other people).
Communication is a process that requires time and effort. It is best to offer information about the baby's condition in small increments, rather than a "single or isolated act" given all at once, taking care to avoid medical jargon but using terms the parents can understand. Allow time for parents to process the information and grieve, and give them opportunities to express their feelings, share their concerns and determine a strategy for the care of their baby.  It is important that HCPs be trained and prepared to face these difficult situations with the skills to sensitively inform parents when something is wrong. Regardless of the circumstances and the parents' reactions to the news, remaining calm and supportive is key. The "Setting, Perception, Invitation, Knowledge, Empathy, Summary and Strategies" approach attempts to lessen the confusion parents feel and provide authentic empathy to alleviate some of the family's grief.
" Allow time for parents to process the information and grieve, and give them opportunities to express their feelings, share their concerns and determine a strategy for the care of their baby.

# PROVIDING INFORMATION AND FACILITATING INFORMED CHOICE
HCPs will want to communicate information about test results, diagnoses and available procedures or care options with consistency, sensitivity, honesty and clarity. 3 Recognize that different sets of parents will have varying information requirements-all communication should be tailored to meet these specific needs and wishes. 3 Verbal explanations are key to high quality bereavement care. Information in hardcopy (e.g., pamphlets, brochures) and other formats (e.g., websites, mobile applications, DVDs) may be useful resources for some people, especially those with sensory or learning disabilities. Despite the potential benefits of such resources, they should be considered a complement to, and not a substitute for, regular face-to-face discussions. 3 HCPs can help parents make informed choices by: 3
- Ensuring that parents are provided timely, accurate and unbiased information about the situation including all available care options or procedures and the potential benefits and risks related to these;
- Being sensitive when providing information;
- Using clear, explicit language;
- Verifying with each parent if additional support is required to help in their decision making;
- Being careful not to overload parents with information;
- Repeating information to parents as necessary; and
- Providing access to specialists as required.

# COMMUNICATION BETWEEN MEMBERS OF THE INTERDISCIPLINARY TEAM
Providing high quality bereavement care requires that all members of the interdisciplinary team involved in caring for the family be well informed, work collaboratively and communicate effectively with each other. Poor communication may add to bereaved parents' distress and cause them to be traumatized through exposure to unnecessary enquiries or insensitive comments. 3 All members of the interdisciplinary team have a responsibility to share relevant information with other team members and document, in medical records, discussions with parents and decisions taken. Regular reviews of the mother's or baby's medical records ensure that they are up to date and include what parents have been told and what decisions have been made.
When there is a transfer of care from one team, unit or service to another, it is essential to also immediately transfer all medical records, including any specific decisions or requests the parents have made and details of any investigations, test results and treatments. The woman's primary care provider (e.g., family physician or nurse practitioner who can provide ongoing follow-up care and support in the community) also needs to be notified.
Ideally, all units and healthcare services have in place policies and procedures to ensure the prompt and efficient transfer of information. When a referral is made or parents are being discharged from the health care facility, immediately inform (with the mother's informed consent) all relevant HCPs by telephone, followed as soon as possible by a written discharge letter. The letter would include a full history of the woman's or baby's care and postmortem examination/test results (if applicable), and information about the condition, follow-up plan, health care services offered, and recommended support services including contact coordinates. 3 

# HELPING FAMILIES PLAN FOR LOSS
In instances where a perinatal death is anticipated (i.e., prenatal diagnosis of a fetus with a life-limiting anomaly or a genetic disorder, extremely preterm infants), HCPs can help families prepare for the impending loss by providing sensitive, respectful and well-coordinated care and support. 84,85 Waiting for follow-up tests (e.g., repeat ultrasound) to confirm a possible diagnosis of a fetal anomaly is emotionally difficult. The best outcomes will be achieved when the care provided is individualized to address the parents' needs and their specific situation with, wherever possible, their particular requests accommodated. 3 
WHEN HELPING FAMILIES PLAN FOR A PERINATAL LOSS, CONSIDER: 1
- The family's cultural and spiritual beliefs
- The family's level of acceptance of their baby's condition
- The support the members of the family get from one another and from others
- The family's acceptance that the goal is their baby's comfort and care, rather than a cure

# BIRTH PLANS
An individualized birth plan sets down parents' wishes and desires for the upcoming birth. A death that occurs during pregnancy necessitates establishing a birth plan with a different outcome. The family's participation in creating a plan may give them some sense of control. Following the plan allows HCPs to honour the family's choices for their baby without repeatedly asking them for direction. Appendix B provides a sample birth plan for pregnancy loss.

# PERINATAL AND NEONATAL PALLIATIVE CARE
Perinatal palliative care, often referred to as perinatal hospice care, requires the provision of family-centred care for those who choose to continue a pregnancy after their baby is diagnosed with a life-limiting condition. It includes anticipating, preventing and relieving suffering (physical, psychological and spiritual), preserving dignity and promoting quality of life for the baby and family, while respecting the parents' choices and wishes. 86 Perinatal palliative care emphasizes creating a relationship with parents and guiding them in making decisions. Depending on the setting and community, the perinatal palliative care team may include nurses; midwives; physicians (maternal-fetal medicine, OB/GYN, neonatology, pediatrics, family medicine); genetic counsellors; social workers; chaplains; spiritual leaders; child life specialists; doulas; psychologists and other psychotherapists; funeral directors; and volunteers. 86 Bereavement support begins at the time of suspected or actual diagnosis and continues through follow-up care after the baby dies. 86 As with perinatal palliative care, neonatal palliative care can be offered when a baby is quite ill and likely to die. The goals of palliative care are quality of life, comfort or relief from symptoms, and support with tasks and bereavement. 87 Although the development of a palliative or end-of-life care pathway or plan may help parents and HCPs, these are not meant to be used as 'checklists' where all the items or interventions must be completed.  Instead, such guides serve as prompts for ensuring babies and their families receive the best care.
Some NICUs include perinatal psychologists as full-time members of their staff to help both parents and HCPs cope with the care of babies who are ill and dying. 36 Collaboration across disciplines and agreement on the plan of care is critical to providing quality neonatal palliative and end-of-life care. It is essential that NICUs have in place policies to ensure good communication between members of the health care team involved in decision making about a baby's care. 90 Including parents in decision making shifts the focus from HCPs to the family and can help defuse professional disagreements.
If possible, parents should have the option of taking their baby home or to a hospice. 91,92 NICUs need policies to ensure that HCPs know of, and can refer parents to a hospice that support parents before and after their baby's death. Parents should be attended in a dedicated and private bereavement care room that is adequately soundproofed so that they cannot hear babies or other parents. 15 It is also important to consider the practical needs of partners or birth partners who may be spending many hours with the bereaved parents (e.g., comfortable chairs, toilet facilities nearby, access to meals). 3 The quality of the care that parents receive immediately after a miscarriage, termination, stillbirth or neonatal death is crucial. This support may have long-term effects on parents' emotional and mental health. 15,37 It is critical that parents have the necessary time to make informed decisions at their own pace. 3 HCPs can support parents by suggesting options and guidance in the hours after the death. 94 That said, parents benefit from the continuous support of a limited number of effective HCPs to minimize the number of interactions. 84 

# PROVISION OF EMOTIONAL SUPPORT
HCPs can offer emotional support in many ways to parents who have lost a baby: 3
- Listen and be prepared to listen again and again;
- Accept what parents and family say without judgment, but correct factual misconceptions and misunderstandings;