Grief, Loss and Bereavement: Evidence and Practice for Health and Social Care Practitioners

Grief, Loss and Bereavement : Evidence and Practice for Health and Social Care Practitioners

---

Because the adaptive capacities are severely assaulted in unanticipated grief, mourners are often unable to grasp the full implications of their loss. Despite intellectual recognition of the death, there is difficulty in the psychologic and emotional acceptance of the loss, which may continue to seem inexplicable.

The world seems to be without order, and like the loss, does not make sense. Some researchers report that anticipatory grief rarely occurs. Finally, anticipation of loss frequently intensifies attachment to the person. Although anticipatory grief may be therapeutic for families and other caregivers, there is concern that the dying person may experience too much grief, thus creating social withdrawal and detachment.

Research indicates that widows usually remain involved with their dying husbands until the time of death. The widows could begin to mourn only after the actual death took place. In general, normal or common grief reactions are marked by a gradual movement toward an acceptance of the loss and, although daily functioning can be very difficult, managing to continue with basic daily activities. Much emotional distress is focused on the anxiety of separation from the loved one, which often results in yearning, searching, preoccupation with the loved one, and frequent intrusive images of death.

Such distress can be accompanied by crying; sighing; having dreams, illusions, and even hallucinations of the deceased; and seeking out things or places associated with the deceased individual. Some bereaved people will experience anger, will protest the reality of the loss, and will have significant periods of sadness, despair, insomnia, anorexia, fatigue, guilt, loss of interest, and disorganization in daily routine.

Many bereaved persons will experience highly intense, time-limited periods e. Sometimes these pangs are understandable reactions to reminders of the deceased person, and at other times they seem to occur unexpectedly. Over time, most bereaved people will experience symptoms less frequently, with briefer duration, or with less intensity.

Although there is no clear agreement on any specific time period needed for recovery, most bereaved persons experiencing normal grief will note a lessening of symptoms at anywhere from 6 months through 2 years postloss. A number of theoretically derived stage models of normal grief have been proposed. Some models have organized the variety of grief-related symptoms into phases or stages, suggesting that grief is a process marked by a series of phases, with each phase consisting of predominant characteristics. One well-known stage model,[ 18 ] focusing on the responses of terminally ill patients to awareness of their own deaths, identified the stages of denial, anger, bargaining, depression, and acceptance.

Although widely used, this model has received little empirical support. A more recent stage model of normal grief [ 2 ] organizes psychological responses into four stages: Since the time of Sigmund Freud, many authors have proposed various patterns of pathologic or complicated grief. These patterns are described in comparison to normal grief and highlight variations from the normal pattern. They include descriptive labels such as the following:.

Empirical reviews have not found evidence of inhibited, absent, or delayed grief and instead emphasize the possibility that these patterns are better explained as forms of human resilience and strength. Empirical support also exists for chronic grief, a pattern of responding in which persons experience symptoms of common grief but do so for a much longer time than the typical year or two. In addition to these theoretical and empirically supported patterns of grief reactions, much emphasis has been placed on distinguishing normal grief from complicated grief.

Most clinicians will be focused on understanding the differences between normal and complicated grief reactions: What is the difference? In current form it does not consist of formal diagnostic criteria and is generally considered a normal reaction to loss via death. In an attempt to clearly distinguish between normal grief and complicated grief, a consensus conference [ 22 ] has developed diagnostic criteria for a mental disorder referred to as prolonged grief disorder, proposing that it be included in the next revision of the DSM.

Following are the proposed diagnostic criteria for complicated grief: Subjective sense of numbness, detachment, or absence of emotional responsiveness. Assumption of symptoms or harmful behaviors of, or related to, the deceased person. These criteria have not been formally adopted, and thus there is no formal diagnostic category for prolonged grief disorders in the DSM. However, these criteria help in specifying symptoms, the severity of symptoms, and how to distinguish complicated grief from normal grief.

One study [ 1 ] of caregivers of terminally ill cancer patients investigated the presence of predeath complicated grief and its correlates. Results revealed the following variables associated with higher levels of predeath complicated grief:. Of these correlates, pessimistic thinking and severity of stressful life events were independent predictors of predeath complicated grief.

Other research has focused on predictors of outcomes such as symptoms of depression and overall negative health consequences. Three categories of variables have been investigated:. Although theory suggests that a sudden, unexpected loss should lead to more difficult grief, empirical findings have been mixed. Bereaved persons with secure attachment styles would be least likely to experience complicated grief, while those with either insecure styles or anxious-ambivalent styles would be most likely to experience negative outcomes.

In a study of 59 caregivers of terminally ill spouses, the nature of their attachment styles and marital quality were evaluated. Results showed that caregivers with insecure attachment styles or in marriages that were "security-increasing" were more likely to experience symptoms of complicated grief. Theory has proposed that strong religious beliefs and participation in religious activities could provide a buffer to the distress of loss, via two different mechanisms:. However, empirical results about the benefits of religion in coping with death tend to be mixed, some showing positive benefit and others showing no benefit or even greater distress among the religious.

Thus it appears that religious participation via regular church attendance and the resulting increase in social support may be the mechanisms by which religion is associated with positive grief outcomes. In general, men experience more negative consequences than women do after losing a spouse.

Mortality rates of bereaved men and women are higher for both men and women compared to nonbereaved people; however, the relative increase in mortality is higher for men than for women. In general, younger bereaved persons experience more difficulties after a loss than do older bereaved persons. These difficulties include more severe health consequences, grief symptoms, and psychological and physical symptoms.

However, it is also thought that younger bereaved persons may experience more difficulties during the initial period after the loss but may recover more quickly because they have more access to various types of resources e. However, as mentioned above, lack of social support is a risk factor for negative bereavement outcomes: It is both a general risk factor for negative health outcomes and a bereavement-specific risk factor for negative outcomes after loss.

The following information concerns treatment of grief after the death of a loved one, not necessarily death as a result of cancer. Some controversy continues about whether normal or common grief reactions require any intervention by medical or mental health professionals. Researchers disagree about whether credible evidence on the efficacy of grief counseling exists. Thus, the question is whether it is wise to devote professional time to interventions for normal grief when resources are limited and the need for accountability is great.

One approach is to use a spectrum of interventions, from prevention to treatment to long-term maintenance care. In contrast, formal treatment of bereaved persons would be reserved for those identified as experiencing complicated or pathologic grief reactions. Finally, longer-term maintenance care may be warranted for persons experiencing chronic grief reactions. Another approach has focused on families. Adaptive coping, with efforts to strengthen family solidarity, and frequent affirmation of family strengths are emphasized. In a randomized controlled trial,[ 8 ][ Level of evidence: Family functioning was classified into one of five groups:.

Results showed modest reductions in distress at 13 months postdeath for all participants, with more significant reductions in distress and depression in family members who had initially higher baseline scores on the Brief Symptom Inventory and Beck Depression Inventory.

Results recommend caution in dealing with hostile families to avoid increasing conflict in such families. With the development of proposed diagnostic criteria for complicated grief i. Both studies are of interventions for bereaved persons whose loved ones died from mixed not necessarily cancer-related causes. The first study [ 9 ][ Level of evidence: I ] compared complicated grief treatment CGT with interpersonal psychotherapy IPT in 83 women and 12 men, aged 18 to 85 years prescreened, who met the criteria for complicated grief.

THREE PHASES OF GRIEF AND MOURNING

Both interventions consisted of 16 weekly sessions spread out over an average of 19 weeks per participant. IPT is a widely researched, empirically supported treatment intervention for depression. IPT therapists used an intervention delivered as described in a published manual,[ 10 ] using an introductory phase, a middle phase, and a termination phase.

During the introductory phase, symptoms were identified, and an inventory of interpersonal relationships was completed, with a focus on interpersonal problems. Connections between symptoms, interpersonal problems, and grief were identified and discussed. During the middle phase, these interpersonal problems and issues of grief were addressed. Patients were encouraged to develop a realistic relationship with the deceased, to recognize both positive and negative aspects of the loss, and to invest in new, positive relationships. During the termination phase, gains were identified and reviewed, future plans were made and feelings about termination were discussed.

CGT was also delivered according to a manual protocol, also organized into three phases. In the introductory phase, therapists described the distinctions between normal and complicated grief. They also explained the concept of dual processing, or the notion that grief progresses best when attention alternates between a a focus on loss and b a focus on restoration and future.

Primary care providers’ bereavement care practices: Recommendations for research directions

Thus, the introductory phase included both a discussion of the loss and an identification of future goals and aspirations. A unique characteristic of CGT was the concept of revisiting loss via retelling the story of the death. This concept was particularly important for persons inclined to avoid thinking about the trauma of the loss. Specific procedures that were modeled after the "imaginal exposure" component of interventions for post-traumatic stress disorder were utilized for retelling.

No significant differences in outcomes were found for those on antidepressant medications. The second study of complicated grief [ 11 ][ Level of evidence: II ] compared cognitive-behavioral therapy CBT , offered in two different sequences, with supportive counseling for 54 bereaved persons, all prescreened and found to be experiencing complicated grief. With researchers hypothesizing that maladaptive thoughts and behaviors are an important component of complicated grief, the CBT interventions consisted of two components exposure therapy and cognitive restructuring designed to directly impact grief-related thoughts and behaviors.

Results showed that both CBT groups experienced more improvement in symptoms of complicated grief and general psychopathology than did the supportive counseling group. In component analyses, the exposure therapy component was more effective than the cognitive restructuring component; the sequence of exposure therapy first, followed by cognitive restructuring, produced the best results. The clinical decision on whether to provide pharmacologic treatment for depressive symptoms in the context of bereavement is controversial and not very extensively studied. Some health care professionals argue that distinguishing the sadness and distress of normal grief from the sadness and distress of depression is difficult, and pharmacologic treatment of a normal emotional process is not warranted.

However, three open-label trials and one randomized controlled trial of treatment of bereavement-related depression with antidepressants have been reported see Table 1. The open-label trials evaluated desipramine,[ 12 ] nortriptyline,[ 13 ] and bupropion sustained release.

II ] The studies included patients experiencing depressive symptoms after the deaths of their loved ones. All studies evaluated intensity of grief using select grief assessment questionnaires. Data from these studies suggest that antidepressants are well tolerated and improve symptoms of depression. Data also suggest that the intensity of grief improved but that the improvement was consistently less in comparison with the symptoms of depression.

Limitations of these studies include open-label treatment and small sample sizes. The only randomized controlled study conducted to date [ 15 ][ Level of evidence: I ] compared nortriptyline with placebo for the treatment of bereavement-related major depressive episodes. Nortriptyline was also compared with two other treatments, one combining nortriptyline with IPT and the other combining placebo with IPT.

Eighty subjects, aged 50 years or older, were randomly assigned to one of the four treatment groups: The item HDRS was used to assess depressive symptoms. Remission was defined as a score of 7 or lower for 3 consecutive weeks. The remission rates for the four groups were as follows: The combination of nortriptyline with IPT was associated with the highest remission rate and highest rate of treatment completion. The study did not show a difference between IPT and placebo, possibly owing to specific aspects of the study design, including short duration of IPT mean no.

Consistent with previous open-label studies and for all four groups, improvement in grief intensity was less than improvement in depressive symptoms. In summary, all of the antidepressant studies conducted to date suggest that the magnitude of reduction and rate of improvement in grief symptoms are slower than the decrease in magnitude and rate of improvement in depressive symptoms.

One group of researchers [ 15 ] provides possible explanations for this phenomenon, arguing that depressive symptoms may be more responsive to pharmacological intervention because they are directly related to biological dysregulation and neurochemical changes. The other possibility is that the persistence of grief without depressive symptoms is not pathological—it might be a normal and necessary consequence of the bereavement process. View in own window. At one time, children were considered miniature adults, and their behaviors were expected to be modeled as such.

Differences between the grieving process for children and the grieving process for adults are recognized. It is now believed that the real issue for grieving children is not whether they grieve, but how they exhibit their grief and mourning. The primary difference between bereaved adults and bereaved children is that intense emotional and behavioral expressions are not continuous in children. The work of mourning in childhood needs to be addressed repeatedly at different developmental and chronological milestones.

Because bereavement is a process that continues over time, children will revisit the loss repeatedly, especially during significant life events e. Children must complete the grieving process, eventually achieving resolution of grief. Children do not react to loss in the same ways as adults and may not display their feelings as openly as adults do. In addition to verbal communication, grieving children may employ play, drama, art, school work, and stories. Families often incorrectly interpret this behavior to mean the child does not really understand or has already gotten over the death.

Neither assumption may be true; children's minds protect them from thoughts and feelings that are too powerful for them to handle. Grief reactions are intermittent because children cannot explore all their thoughts and feelings as rationally as adults can. Additionally, children often have difficulty articulating their feelings about grief.

Strong feelings of anger and fear of abandonment or death may be evident in the behaviors of grieving children. Children often play death games as a way of working out their feelings and anxieties in a relatively safe setting.

PDQ Cancer Information Summaries [Internet].

These games are familiar to the children and provide safe opportunities to express their feelings. Death and the events surrounding it are understood differently depending on a child's age and developmental stage see Table 2. Although infants do not recognize death, feelings of loss and separation are part of a developing death awareness.

Children who have been separated from their mothers and deprived of nurturing can exhibit changes such as listlessness, quietness, unresponsiveness to a smile or a coo, physical changes including weight loss , and a decrease in activity and lack of sleep. In this age range, children often confuse death with sleep and can experience anxiety. In the early phases of grief, bereaved children can exhibit loss of speech and generalized distress.

In this age range, children view death as a kind of sleep: They do not fully separate death from life and may believe that the deceased continues to live for instance, in the ground where he or she was buried and often ask questions about the activities of the deceased person e. Young children can acknowledge physical death but consider it a temporary or gradual event, reversible and not final like leaving and returning, or a game of peek-a-boo.

In response to death, children younger than 5 years will often exhibit disturbances in eating, sleeping, and bladder or bowel control. Death is personified as a separate person or spirit: Although death is perceived as final and frightening, it is not universal. Children in this age range begin to compromise, recognizing that death is final and real but mostly happens to older people not to themselves. Grieving children can develop school phobias, learning problems, and antisocial or aggressive behaviors; can exhibit hypochondriacal concerns; or can withdraw from others.

Conversely, children in this age range can become overly attentive and clinging. Boys may show an increase in aggressive and destructive behavior e. When a parent dies, children may feel abandoned by both their deceased parent and their surviving parent, since the surviving parent is frequently preoccupied with his or her own grief and is less able to emotionally support the child.

By the time a child is 9 years old, death is understood as inevitable and is no longer viewed as a punishment. By the time the child is 12 years old, death is viewed as final and universal. In American society, many grieving adults withdraw into themselves and limit communication. In contrast, children often talk to those around them even strangers as a way of watching for reactions and seeking clues to help guide their own responses.

It is not uncommon for children to repeatedly ask baffling questions. There are three prominent themes in the grief expressions of bereaved children:. Children often engage in magical thinking, believing they have magical powers. If the child also perceives that the death could have been prevented by either a parent or doctor , the child may think that he or she could also die.

Because children depend on parents and other adults for their safety and welfare, a child who is grieving the death of an important person in his or her life might begin to wonder who will provide the care that he or she needs now that the person is gone. There are interventions that may help to facilitate and support the grieving process in children. Silence about death which indicates that the subject is taboo does not help children deal with loss. When death is discussed with a child, explanations should be kept as simple and direct as possible.

Each child needs to be told the truth with as much detail as can be comprehended at his or her age and stage of development. Questions should be addressed honestly and directly. Children need to be reassured about their own security they frequently worry that they will also die or that their surviving parent will go away. Although it is a difficult conversation to initiate with children, any discussion about death must include proper words e. After a death occurs, children can and should be included in the planning of and participation in mourning rituals.

As with bereaved adults, these rituals help children memorialize loved ones. Although children should never be forced to attend or participate in mourning rituals, their participation should be encouraged. Children can be encouraged to participate in the aspects of funeral or memorial services with which they feel comfortable. If the child wants to attend the funeral or wake or memorial service , it is important that a full explanation of what to expect is given in advance.

This preparation should include the layout of the room, who might be present e. Surviving parents may be too involved in their own grief to give their children the attention they need. Therefore, it is often helpful to identify a familiar adult friend or family member who will be assigned to care for a grieving child during a funeral. There is a wealth and variety of helpful resources books and videos that can be shared with grieving children. Grief, whether in response to the death of a loved one, to the loss of a treasured possession, or to a significant life change, is a universal occurrence that crosses all ages and cultures.

An analysis of the results of several focus groups, each consisting of individuals from a specific culture, reveals that individual, intrapersonal experiences of grief are similar across cultural boundaries. This is true even considering the culturally distinct mourning rituals, traditions, and behavioral expressions of grief experienced by the participants. Failing to carry out expected rituals can lead to an experience of unresolved loss for family members.

Clinicians consider the following five questions particularly important to ask those who are coping with the emotional aftermath of the death of a loved one:. Death, grief, and mourning are universal and natural aspects of the life process. All cultures have evolved practices that best meet their needs for dealing with death. Hindering these practices can disrupt the necessary grieving process. Understanding these practices can help clinicians to identify and develop ways to treat patients of other cultures who are demonstrating atypical grief. Use our advanced clinical trial search to find NCI-supported cancer clinical trials that are now enrolling patients.

The search can be narrowed by location of the trial, type of treatment, name of the drug, and other criteria. General information about clinical trials is also available. The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above. Board members review recently published articles each month to determine whether an article should:. Changes to the summaries are made through a consensus process in which Board members evaluate the strength of the evidence in the published articles and determine how the article should be included in the summary.

Any comments or questions about the summary content should be submitted to Cancer. Do not contact the individual Board Members with questions or comments about the summaries. Board members will not respond to individual inquiries. Some of the reference citations in this summary are accompanied by a level-of-evidence designation. These designations are intended to help readers assess the strength of the evidence supporting the use of specific interventions or approaches.

PDQ is a registered trademark. Although the content of PDQ documents can be used freely as text, it cannot be identified as an NCI PDQ cancer information summary unless it is presented in its entirety and is regularly updated. Permission to use images outside the context of PDQ information must be obtained from the owner s and cannot be granted by the National Cancer Institute.

Information about using the illustrations in this summary, along with many other cancer-related images, is available in Visuals Online , a collection of over 2, scientific images. The information in these summaries should not be used as a basis for insurance reimbursement determinations. More information on insurance coverage is available on Cancer. More information about contacting us or receiving help with the Cancer. Questions can also be submitted to Cancer. Turn recording back on. National Center for Biotechnology Information , U.

Show details Bethesda MD: Overview Health care providers will encounter bereaved individuals throughout their personal and professional lives. Ann Intern Med 3: Handbook of Bereavement Research and Practice: Advances in Theory and Intervention. American Psychological Association, Handbook of Bereavement Research: Consequences, Coping, and Care. Bonanno GA, Kaltman S: The varieties of grief experience. Clin Psychol Rev 21 5: American Psychiatric Press, Inc. Bereavement Bereavement is defined as the objective situation one faces after having lost an important person via death. Mourning Mourning is defined as the public display of grief.

Perspectives on care at the close of life. Caring for bereaved patients: Types of Grief Reactions Many authors have proposed types of grief reactions. The process of recovering from the loss of a baby takes time. A period of two to four years seems to be about average for parents, but five or more years of grief is not uncommon. The comparison of study data from both mothers and fathers in several studies makes it apparent that they recover in about the same time Many actions in the NICU or in the labour and birth area that are taken to facilitate the attachment of the parents with their infant will become memories after a sudden or even an expected neonatal death.

Holding should be facilitated where possible. Finally, visiting policies should be around the clock, including during bedside rounds. Bad news should be given by the attending staff physician in a timely and unhurried manner, and in a private area. Both parents, or one parent with another support person who will stay around for some time after the disturbing information has been delivered, should be present.

Whenever possible, the news of impending death should be discussed rather than waiting until death occurs. Parents appreciate and deserve an honest discussion about why their baby died, including a humane overview of the problems, the actions taken and time to allow them to ask questions. By giving complete and understandable information, there is a smaller chance that parents will feel that health care professionals are hiding something from them.

Care providers should be understanding and caring, and it is appropriate for them to express empathy, and to show their feelings and concerns. Table 2 presents important actions to be taken during and after the death of a baby. Parents need to spend time with their dying or dead baby. The opportunity to spend time with the baby should be offered on several occasions because some parents may need encouragement.

One can ask the parents whether they want to be alone, or to have family or a nurse stay with them; some young parents may be frightened because they have no previous experience with death. Privacy, including privacy for the mother, father and baby as a group, is very important at this stage. This may mean asking additional family members and friends to give the trio some time alone. In no way should the above experience be rushed.

Holding the baby should be allowed for as long or as short as the parents wish to do so. One should talk about gasping, muscle contractions and pain or discomfort management beforehand. In a follow-up contact, these individuals should talk with the parents and offer mementos, which will become very precious to the family. Parents are often concerned that their infant may have experienced fear or pain, and the caregivers need to provide reassurance that those concerns were addressed.

It is critical that every attempt be made for any available family members to spend time with the baby before and after death. Health care professionals have become much better at ensuring that parents spend time with their infant, but the importance of including other family members is less recognized. Liberal visiting policies in NICUs should facilitate this. It makes sense that people can be more supportive to a family if they also have their own memories of the baby after a long stay in the NICU. Information regarding religious and cultural practices should be sought, and spiritual support from the appropriate religious leader offered.

If time permits, any religious ceremony, such as baptism, should be facilitated because this may be an important part of the grieving process for families. If available, bereavement teams may be involved. In neonatal death, the discussion of organ donation, although often irrelevant, should be mentioned, even if only to say that it is not possible.

Finlay and Dallimore 16 have reported that almost two of three patients who were not offered a discussion on organ donation wished that it would have taken place. Finally, flexibility in applying hospital policies is mandatory if they prevent parents from spending time with their dying, or dead infant or child. One has to be sensitive to families with a different cultural background for whom autopsies or withdrawal of aggressive support may be delicate and difficult issues.

Discussions with the respective religious leaders may be of help under those conditions. Parents should be told why these mementos are being collected to avoid misunderstanding on their part.

Pro zákazníky

The manner in which the mementos are given should be compassionate, sensitive and respectful. Small touches are remembered by the parents; for example, in some hospitals photographers are available day and night, free of charge, and social workers provide memory boxes. When all is said and done, do not forget to inform the referring physician s. The actions that are used to facilitate attachment bonding will help to build a relationship of trust and understanding.

This rapport will instill confidence when discussions about the withdrawal of aggressive life support need to take place. And that may include not being so aggressive and letting her go peacefully. Not only does this introduce a way for later conversations, it also starts a thinking process in the parents, who themselves may bring up the issue of withdrawal when they notice that their child is not doing well. The concept of a partnership also takes away the burden of parents feeling that they are responsible for the withdrawal of treatment.

One can state that everything possible has been done and nothing more can be done. It may be useful to list the problems and the actions taken to solve the problems. Try to keep the burden of the decision away from the parents by emphasizing that everybody parents and the health care team has the best interest of the baby at heart, and is trying to come to the best decision for the infant, even if it will cause pain for those making the decision. The attending staff physician should state that the team recommends limitation or withdrawal of support rather than asking the parents what they want to be done.

Obtaining a second opinion from another neonatologist may be helpful to reach that goal. Several discussions may have to take place the same day or over a few days. Once the decision to withdraw support is made, explain to the parents precisely how it will happen in practice and offer options so that the parents continue to feel that they are involved in all decisions for their baby until the end.

Discussions about the duration of survival, sedation, gasping and muscle contractions should take place before extubation. It is advantageous to remove as much equipment, such as intravenous and arterial lines, chest tubes, urinary catheters and monitors, as possible. It is preferable to dress the infant before the endotracheal tube is removed. Some parents want to hold their baby while he or she is being extubated, and other parents do not. Some parents want to remain at the bedside, which should be screened from other bedsides.

Alternatively, parents and the baby can be brought to a quiet room to spend time together, and to respect privacy and confidentiality. As discussed before, photographs of the infant before and after extubation, and of the parents holding the infant play a large role in the grieving process later on.

Spirituality and perinatal loss is discused in Cunningham To understand spiritual needs better, health care staff should not limit questions to type of religion or to baptism, but include questions about faith, rituals, traditions, and needs while caring for the infant and the family. The health care provider should take the initiative in assessing the spiritual care of families, keeping respect for people and for their spirituality centrally, along with compromises, empathy and listening.

Ryan 7 discusses stillbirth and miscarriage. Emotional bonding occurs well in advance of birth, and parents bring with them expectations and dreams about themselves as parents and about the child that they will have. The lost images and projections constitute major secondary losses, which must be mourned no matter what the age of the child; therefore, even in death before birth, parents lose much Given the individual circumstances surrounding miscarriage and ectopic pregnancy, stillbirth or neonatal death, any or all of the following may come into play: Existential loss associated with pregnancy loss frequently has been overlooked, but it can be summed up by the following: Pregnancy loss miscarriage and stillbirth has several component losses; not only is there a real and fantasized loss of a baby, but there may also be a significant loss of self-esteem.

They include the loss of being pregnant and the sense of oneness with the fetus, the loss of anticipated motherhood and the loss of special attention. Disruption in functions of self-esteem building related to childbearing are particularly important because they most likely affect this loss in a way that is distinct from other types of bereavement Pregnancy loss turns a self-enhancing experience into a time of devastation. A closely related phenomenon that occurs in expectant parents whose pregnancy loss is associated with fetal anomalies is the lowering of self-esteem from carrying defective genes.

The circumstances surrounding a stillbirth may prevent a mother, who may be under general anesthesia, from seeing and holding her baby. Sedation and painkillers may make it difficult to remember the experience of the delivery and of holding the dead baby. Whereas these situations should be avoided if at all possible, they may occur and, therefore, it is necessary to have the mother spend enough time with her baby, even if it means several hours after the delivery.

Be open, honest and considerate when giving information to parents who experience a perinatal death in the delivery room, including information about religious services such as baptism and spiritual support. Looking at an infant with anomalies from the perspective of an outsider is very different from seeing that infant from the perspective of a loving parent. Often, parents see the good features, while the deformities or unusual features will not be that important. Many anomalies can be disguised by dressing or wrapping the baby in a blanket, or clothing the infant.

Guidelines for health care professionals supporting families experiencing a perinatal loss

Health care professionals may have to encourage parents to spend some time with the baby. It is helpful for the parents to be told that they can name the baby. There is also the need for seeing and holding the baby, and the benefit of taking pictures, and gathering mementos and memories should be emphasized. Finally, a discussion about religious ceremonies, autopsy arrangements and memorial services needs to take place. Parents have mixed feelings when one twin dies and the other one survives Just imagine how difficult it must be to rejoice and mourn at the same time.

Avoid the common pitfall of regarding the surviving twin as a consolation. A common regret of parents and of the surviving twin is the lack of pictures of the two babies together. Parents who lose one twin may have more difficulty during bereavement than parents losing singleton infants This is a unique situation with a high risk for a pathological grieving process and, therefore, requires special attention. Depending on their age, siblings may develop some of the same symptoms that parents experience after a perinatal death.

Parents may become overprotective of their children. However, the children may feel pushed away by their parents and, therefore, it is important for parents to spend time with each of their surviving children, and to maintain open and honest communication. Children may be afraid that one of the parents or even they themselves may die next.

If the siblings are old enough, they should be included in spending time with their baby after the death and in memorial services. Early cooperative contacts with individuals in the health care system who will interact with the parents on a long term basis are beneficial. When parents decide to terminate a pregnancy based on severe anomalies or genetic indications, some believe that they made the right decision, but others continue to experience emotional difficulties. On the one hand, there may be the feeling of relief to have prevented the birth of a severely affected child; on the other hand, there may be a feeling of guilt about having terminated a wanted pregnancy 24 , There is great variability in the way in which couples respond to pregnancy loss, and problems may well persist six to 12 months after the pregnancy was terminated Couples should be followed carefully during the period after fetal loss spontaneously or by termination.

Even more so than in the case of a neonatal death, men and women grieve differently after pregnancy termination; men usually recover more quickly than women 27 , they intellectualize more and keep their feelings to themselves. Women physically experience the pregnancy, while men often feel more like bystanders This can lead to a lack of synchronicity in the grieving process between the two partners.

Factors helpful in dealing with pregnancy termination include recognition, information, communication and hope. Follow-up contacts with a discussion of pathology and genetics are also a part of coming to closure. Some aspects of this section have been discussed elsewhere in the statement. The roles of the different health care providers overlap in providing bereavement services and counselling.

Care providers must explore their own attitudes about death and grief, and view them from the perspective of their own culture, including values, beliefs, traditions, and attitudes about health and illness. Culture, indeed, influences the meaning of a death for parents and their families, and dictates customs surrounding death Data from reference Health care professionals must also remember that the normal grieving process is fluid, with much fluctuation between phases.

This fluctuation is universal and does not imply pathology. Staff members supporting grieving families need to assess where the parents are in their mourning process, and then adjust accordingly. Bereavement counselling should be a part of the training program for new health care professionals, who should also have the opportunity to observe senior members of the team. The most beneficial commodities that a health care professional can offer to a grieving family are a non-judgmental, deep sense of caring and personal involvement.

Swanson 33 describes five critical attributes of the attentive care provider. A provider who is caring, which is a nurturing way of relating to a valued individual toward whom one feels a personal sense of commitment and responsibility, strives to know; be with; do for; enable the other; and maintain a belief such that, within the demands, constraints and resources, a path filled with meaning will be chosen.

The first attribute, knowing , means that a provider strives to understand an event as it has meaning in the life of another. The third attribute, doing for , means doing for parents what one would do for oneself. This includes collecting mementos, taking photographs and encouraging private time with the baby. The fourth attribute, enabling , means facilitating unfamiliar events for the parents by giving anticipatory guidance about events that may occur during the dying process or about memorial services.

Caregivers who provide this level of care will fulfill the unique needs of grieving parents by assisting them to have positive memories of their baby, and by giving them a feeling of being cared for in the midst of their pain and grief. Follow-up with the parents after discharge is essential to help maintain the healthy grieving that they started in the hospital. The health care professional or grief counsellor who has been involved most with the parents in the hospital should follow the parents after discharge.

Not only does this provide parents a connection with somebody who knew their baby and their circumstances, but it also offers the caregiver feedback regarding the final outcome for these parents, thereby energizing the provider for future families. Finally, staff members themselves may need a support mechanism to deal with their feelings of loss and grief.

A debriefing session for the entire health care team may be appropriate to accomplish this. Some aspects of the role of the paediatrician, obstetrician and family doctor are shared with other members of the health care team, and the magnitude of the role depends on the degree of involvement with the family before the perinatal loss occurred 7. The role of the paediatrician or family doctor becomes particularly crucial in a case of neonatal death at home or in an emergency department, where interactions with emergency medical transport personnel and hospital emergency staff have not allowed the building of a progressive relationship as happens when a death occurs in the delivery room or NICU.

Plans for an office visit after several weeks are helpful, particularly if the paediatrician or family doctor will be the one discussing the autopsy report and answering related questions. The same applies for the obstetrician in the case of stillbirth, miscarriage or even early neonatal death. Finding out how the grieving process is progressing and giving parents insight into its natural progression should be a part of this follow-up visit.

It is helpful to know the names of regional counsellors and support groups with an interest in perinatal bereavement. Hospital paediatric and neonatal social workers may be a great resource for this kind of information. Most perinatal centres have some kind of bereavement support, and community centres or physicians should feel free to take advantage of those services. Guiding parents through a perinatal loss is an essential part of caring and contributes to a normal grieving process. The role of the caregiver extends far beyond covering the physiological needs of the infant and starts at the first contact.

By creating an atmosphere of trust between parents and caregivers, and a sense of attachment and bonding with the baby, a partnership will be formed between parents and caregivers, which should result in the most appropriate recommendations and decisions for that particular family. When giving bad news, both parents or one parent with another support person should be present. Simple language should be used, allowing time for listening and answering questions honestly. The best ways that a health care professional can support a grieving family are by offering a nonjudgmental, deep sense of caring and personal involvement.

Before and after the death of a baby, parents should be allowed to spend as much time as is needed with their child.

• Ein Leben lang unterwegs (German Edition)
• Eugenia Grandet (Spanish Edition)
• Wildfire (Star Trek: Starfleet Corps of Engineers)
• The Perioperative Medicine Consult Handbook
• Bangkok: Erotic Pulses of the City
• Forward Genetic Dissection of Immunity to Infection in the Mouse (Annual Review of Immunology Book 26)
• Brewing Beer At Home Thats So Good You Can Serve It To A Friend: Even If youve Never Done It Before