38 - Quality assurance | Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)

Editors: Goldman, Ann; Hain, Richard; Liben, Stephen

Title: Oxford Textbook of Palliative Care for Children, 1st Edition

> Table of Contents > Section 4 - Delivery of care > 36 - Intensive care units

Intensive care units

Stephen Liben

Tom Lissauer

Introduction

The vision of pediatric and neonatal intensive care is to bring together all the resources of modern medicine, from the latest in high technology equipment to cutting edge treatment protocols in order to fight a common enemy, death. The considerable resources society is prepared to invest in intensive care reflects the high value our society places on saving children from death. Intensive care has succeeded in transforming what was miraculous 2030 years ago into the commonplace, whether it is supporting extremely low birth weight babies weighing less than 1000 grams, or enabling children with transplanted hearts, kidneys, and livers to survive, or taking over the function of the lungs and heart with innovative technologies.

Given the enormous success of pediatric and neonatal intensive care in saving children from a premature death it may initially appear that palliative care is not needed in intensive care units (ICUs). However, even in the most advanced and well-equipped ICUs death still occurs. Indeed, it is in ICUs, the place where most critically ill children are brought together, that the greatest number of hospitalized children die. It is therefore in ICUs that there is considerable potential for applying the principles of palliative care to both minimize the suffering of children and provide the best possible support to their families. Simply put, if palliative care decreases pain and suffering of dying children and their families, and the ICU is where many children die, then palliative care needs to be in the ICU.

Children dying in intensive care and their families need to be cared for by healthcare professionals who can provide not only everything that modern medicine can deliver to maintain life, but also all that palliative medicine has learned about how to minimize suffering at the end of life. This chapter will outline the ways in which palliative care can be integrated into the care of the critically ill child in both pediatric and neonatal intensive care units.

Development of paediatric and neonatal intensive care

Paediatric intensive care is a relatively recent addition to paediatric medicine. It began in earnest once children who could no longer breathe on their own could be placed on mechanical ventilators. Initially (in the 1950s) these children were cared for in post-anaesthesia units, most often by paediatric anaesthesiologists who were the first paediatric intensive care specialists. During this period the advent of cardio-pulmonary bypass allowed surgeons to operate on the small sized pediatric heart while a bypass machine perfused the remainder of the body. Paediatric intensive care units (PICUs) were developed to manage children following the many types of complex surgery that can now be performed on children, as well as to care for children who have become critically ill from trauma, of from medical illness. Intensive care units are usually located in specialist children's hospitals.

During the 1970s, many of the technological advances used in older children and adults were adapted for newborn babies and neonatal intensive care units (NICUs) were developed. They are more widespread than PICUs as 1 2% of newborn infants require intensive care and 8 10% of all newborn infants are admitted to a special care baby unit.

The widespread use of mechanical ventilation for respiratory failure and the ability to maintain organ perfusion with extracorporeal life support when the heart is no longer beating and the brain is no longer functioning have progressed so far and so fast that at present it is possible to maintain a child in a state somewhere between life and death for a prolonged

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period. This has created a situation where a child's death can be delayed by intervening with invasive technological support. Along with this ability to delay death has come the need for the intensive care physician to decide whether to withdraw mechanical life-support and allow death to follow. This ability to postpone death has created numerous ethical and moral dilemmas, many of which remain unresolved (see ethics section).

Causes and mode of death in PICU

A medium sized PICU with 800 admissions per year and a 5% mortality rate will experience almost a death per week and in a large PICU there may be as many as 2 deaths per week. A study of all in-patient paediatric hospital deaths showed that the majority are young; with 75% less than 4 years old, most had received invasive therapies such as mechanical ventilation and over 75% died while comatose and sedated in ICUs [1]. In the PICU the most common mode of death is from active withdrawal of therapy (removing a mechanical ventilator, stopping cardiac inotropic and vasopressor medications) or following decisions to not attempt cardio-pulmonary resuscitation [2].

Over half of the children who die in a PICU do so after a very brief illness such as trauma, drowning and infection. Most were previously healthy and the time course to death is incredibly fast with a mean of 3 4 days between admission and death. These families have very little time to come to terms with their child's death. This contrasts with the approximately one third of deaths in children with complex chronic illness such as congenital malformations, neurological problems, cancer, metabolic disease, immune-deficiencies, and respiratory illnesses and whose families have had forewarning that their child may die [3].

Causes and mode of death in NICU

Although the number of deaths in NICUs has fallen markedly over the last 20 years, a medium sized unit will experience about 24 deaths/year. Most, 70%, are because of prematurity, but some are because of congenital malformations or following birth asphyxia [4].

Although 42% of infants died naturally, 40% died following withdrawal of life-support and in 15% following do-not-resuscitate orders. Although life support therapy is often withdrawn when death is inevitable to avoid unnecessary suffering of both infant and family, in others, particularly infants with brain damage relating to prematurity or birth asphyxia, it involves difficult judgments about likely long-term outcome and quality of life. Physician attitude and practices under these circumstances differ markedly in different countries [5].

The Decision to withdraw life support technology

The default treatment mode of intensive care is that all interventions and technologies, no matter the extent of their immediate short-term (and possible medium- and long-term) unpleasantness, are performed in order to sustain life. Decisions to limit life-sustaining therapies range from do not escalate orders that maintain current life-sustaining therapies already in place, to active withdrawal of life-sustaining technologies (most commonly mechanical ventilation). How and why decisions are made to either not escalate or to actively withdraw' life-sustaining therapies depends on carefully balanced judgments that include potential for recovery, current and future quality of life, burden of pain and suffering imposed by life-sustaining technologies, and cultural and religious attitudes and beliefs of parents and professional caregivers. This decision making has become more complex because of the:

Increased number of professional caregivers making co-ordination and agreement in decision making more difficult
Wish by parents and family to be active participants in decision making rather than relying on healthcare professionals
Increased reluctance by some parents to accept withdrawal of life-support for religious reasons (Muslim, orthodox Jews, fundamentalist Christians) or unwillingness to accept predictions or advice of physicians
Fear of litigation or use of the media by parents.

The senior (attending) physician needs to not only co-ordinate decision making between the professionals caring for the child and between the caregivers and the family, but also to manage the timing of the decision making. Nurses, physicians and families may take different lengths of time to reach their decision and may cause considerable tension within the unit.

Where there is disagreement between the physicians and family an independent second opinion may be helpful. Rarely, when agreement cannot be achieved, the case will need to be referred to the Court. Recent high-profile cases in the United Kingdom have included the refusal by parents to agree to withdrawal of mechanical ventilation in an infant with Trisomy 18 who had multiple congenital abnormalities including severe brain damage and a 1-year-old ex-preterm, permanently hospitalized infant with very severe lung disease and several admissions to PICU and where the PICU was refusing to reventilate if respiratory failure developed. These issues are considered further in Chapter 4 on Ethics.

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Incorporating palliative care principles in the ICU

Given the very broad range of issues surrounding end-of-life care in the ICU how can the principles of palliative care be applied to ease the burden of suffering for children who die in the ICU and that of their families?

Communication

Good communication between the healthcare team and the parents is crucial. There are a number of key elements for this to be achieved.

Staff communication

Staff communication is an ongoing challenge because of the large number of professional caregivers involved in the child's care. Providing consistent information is problematic but important as parents find even minor differences in information confusing and upsetting. Detailed handovers are therefore required. Parents need to understand the different roles performed by the numerous members of the healthcare team so that they can direct their questions appropriately, for example, details about the day's events are best answered by the nurse caring for their child while questions about management decisions should be posed to the primary physician. This exchange of information is also required to avoid professional caregivers repeatedly asking the family the same questions. A regular weekly multidisciplinary meeting (or round) is helpful to allow the views of team members other than the nurses and doctors to be heard and also because they allow due consideration on aspects of care other than the biological/physiological status of the child.

As the ultimate decision making falls to a senior ICU (attending) physician, it is important that parents have a clear understanding of who is the attending physician for their child. Because the care of a critically ill child may involve many teams of physicians over periods of time (e.g. the separate subspecialty teams involved in a post operative cardiac newborn with renal failure, on total parenteral nutrition, with sepsis and seizures), it can be difficult for parents to consistently identify one physician who assumes the role of primary decision maker and communicator with the family. In some ICU's parents are present during daily medical rounds and get to hear for themselves first hand accounts of what the medical assessment and plans are for their child. In other units parents are not present for rounds and physicians have a separate meeting with parents to ensure communication. Whatever the system used in a particular ICU, it is important that there is a predictable way for parents to communicate with their child's attending physician. Many units also have an identified nurse who is responsible for co-ordinating nursing care on a long-term basis.

For children or families that have been followed long-term by a primary care physician (or family doctor) it is both important and helpful to ensure that the family is given the option of their continuing input. On admission to the ICU it is helpful to establish whom the family identifies as trusted caregivers in the past and with whom they wish to have an ongoing relationship. Including these non-ICU caregivers in important decision making situations can help to establish trust between the child/family and ICU staff who they may be meeting for the first time.

Communication with children and adolescents

The majority of children who die in the ICU do not have the ability to communicate verbally because they were either pre-verbal due to their young age or non-verbal because of their pre-existing medical condition. For verbal children communication is still very limited during their illness in the ICU because of the illness itself or the life-support technology. This means that these children are often deprived of the opportunity for parents to explain to them about their illness and impending death or for them to talk with their parents about their fears, wishes, dreams, hopes and desires about their life in general and about their possible death in particular.

In the ICU communication between staff and family can become complicated when the patient is a verbal adolescent who has issues he or she wishes to keep private from the parents, and with parents who want medical staff to talk to them first before speaking to their child. Although the legal status of adolescents of a certain age may help clarify rights this does not necessarily reflect nor respect how a family may have managed communication in their own home and according to their own strongly held familial and cultural beliefs. In these difficult situations a careful balance must be made between the patients' rights and respecting individual family dynamics. It can be helpful to have mechanisms in place for patients and families to have designated staff to speak to if they wish to voice their concerns. Some hospitals have an ombudsman or patient representative that may serve to help defuse high-tension situations.

Extended family

Parents may wish healthcare professionals to talk to their extended family, especially grandparents or the parents'brothers or sisters. However, a study that looked at the relative value that parents placed amongst different people involved in important decisions for their children in PICU (staff versus extended family) found that it was the staff that the family

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found the most helpful and supportive around difficult decisions such as removing life supporting therapy [6]. Parents stated that the only ones who really knew what was really going on' were PICU staff and they placed a very high level of trust and power on professional caregivers in decision making even though they had known them for only a short period of time.

Confidentiality

Occasionally a balance has to be struck between the need for communication among many members of the team and the family's need for privacy and confidentiality. It is then best to ensure that family has agreed to what information can be shared.

The unit of care is the child and family

Having a supportive team that is available to focus on the psychological, emotional and spiritual issues that children and families with life-threatening illness face is an essential component of intensive care. The same composition of teams needed to provide psychological, social and spiritual support in hospice care is needed in neonatal and pediatric intensive care units. It should be a basic principle of intensive care that the emotional, psychological and spiritual needs of children and families in crisis need to be addressed on a regular (as opposed to as required) basis. Seen in this light the presence of trained personnel to support the mind and soul of both the child and their family becomes an essential component of intensive care.

While it is important to provide supportive care to family members who are confronted with the possible death of their child, parents also emphasize the importance of the physical environment on their well being and ability to adapt and cope with what is for most of them the most traumatic experience of their lives. Physical facilities for parents such as showers, family rooms for overnight accommodation and kitchenettes together with open visiting policies help to make the point that parents are not visitors but are rather the key people with the most at stake in their child's illness. For parents who are confronted by the possible death of their child for the first time the ICU environment can be a confusing place. The multiple rotating caregivers, lack of privacy, and total disruption of daily life routine coupled with a busy bright physical environment make for a disorienting experience. It can be helpful to have pre-prepared written materials for parents that explain the structure, hierarchy, and options available to them. Another useful resource for families is access to books, videos and web sites that are relevant to their own situation.

Siblings can be helped to cope with their brother or sister's death by being given the opportunity to help with their care in a supervised manner. ICUs can facilitate this by having visiting policies that encourage parents to bring siblings for short visits. For example, a young sibling may be provided with crayons and paper to make a drawing for their sick brother or sister. Older siblings may choose to write a message to be placed with their sibling. Child-life specialists (play-specialists) can be especially helpful in creating the space for siblings to be involved and to assist them express and come to terms with their sibling's illness or possible death.

Whole person/child care

Hospice/palliative care places a high value on care of the whole person that recognizes the importance of body, mind, and soul. Traditionally most ICUs have been developed to focus on care of the body with varying degrees of emphasis on other aspects of the child as a whole person.

When cure is no longer possible and the child is likely to die a shift in goals can be helpful for the child and their family as well as for healthcare professionals. Whole-person care is one means to re-establish hope and meaning in their care. While most ICU professionals are adept in reducing pain caused by bodily symptoms, they may have less training in addressing the suffering that results from unresolved existential, psychological, emotional, and spiritual issues. Palliative whole-person care emphasizes the ability to heal even when cure is no longer possible. In adult palliative care there is much literature on how adults can die healed [7]. While dying healed may be an unrealistic goal for many children in the ICU there is still much to be gained by addressing issues related to the child's and the family's emotional and spiritual needs. The beginning of addressing these needs begins with an assessment of the child and the family as whole persons. In practice this evaluation of the whole person means asking questions not necessarily traditionally addressed in paediatric critical care such as:

What is the most important thing in your life right now?
What is happening in the ICU that is stopping you from making the most of the time you have with your child right now?
Are there important celebrations that you would consider having in the ICU very soon, even before the real date? (e.g. birthdays, Christmas, etc )

Establishing the child and family's priorities, what really matters to them right now, is often a catalyst for ICU staff to align their caregiving in ways that help meet the most urgent needs of the child and family. For example, some families

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focus on trying to ensure that their ill child survives in order to be present at important milestone holidays. It can be suggested to such families that they consider celebrating an important holiday or birthday now, instead of waiting for the correct chronological date on the calendar. Should the child survive until the real date then families are often more than happy to celebrate the occasion again. This approach of doing whatever the family feels is important to them now, instead of later, can help to relieve pressure.

For some families of children in the PICU it may have always been very important to have a story read to the child at bedtime. Parents can be encouraged to continue this process even in the PICU. Some parents may like the idea of audiotaping themselves either singing or reading a story so that an audiotape can be played to their baby or child when they are absent from the unit.

Pain and symptom management

With some ill neonates and children it is unclear, both to family members and to professional caregivers, when the child is in pain. Meeting together to discuss how parents and staff assess the child's expression of pain in different ways can help to prepare a care plan that respects both professional expertise on pain assessment while acknowledging that parents have unique insights into their own children [8]. Many children in the ICU receive continuous infusions of sedatives and analgesics that were started either post-operatively or at the initiation of mechanical ventilation. Some children are placed on continuous or regular intermittent doses of neuro-muscular blockers (NMB) that result in muscle relaxation and paralysis of skeletal muscle without any analgesic or sedative effects. Children on neuromuscular blocking drugs will not move and cannot breathe on their own. In most circumstances it is possible and desirable to interrupt the use of regular neuromuscular blockers in order to assess the level of comfort and sedation of the child [9]. In situations where the child has undergone an acute neurological event it may be difficult for both parents and staff to appreciate the level of neurological function in the presence of high doses of sedative/analgesics. In these circumstances carefully lowering the amount of sedation can allow for a better evaluation of the level of consciousness and amount of pain the child may be experiencing. There is no indication or rationale for increasing sedatives just because the child has suffered enough . Rather the point of sedative/analgesic administration is to respond to pain by first assessing its cause and intensity and then to selectively apply pain management principles as would be done for any child in pain whether they are palliative or not.

Non-pharmacological pain management techniques can be adapted for use in the ICU. Massage therapy, music therapy, and art therapy for older children who are conscious, and even zoo therapy may sometimes be possible in certain circumstances. Less complex and at no cost but perhaps the most powerful way to help both child and parent are to not only allow but encourage parents to hold their critically ill child in their arms even whilst the child remains connected to a ventilator and many infusion pumps. For parents of ill newborns this may be the only time they get a chance to hold their own child in their arms and may be a powerful experience that would not have happened without the encouragement of the ICU staff.

Setting goals

Acknowledging that a child is terminally ill is especially difficult in an intensive care environment. An advantage of doing so is that all diagnostic tests and therapies are directed towards a common goal: to increase the comfort and quality of life of the child (as opposed to the usual goal of striving to maintain life). For example, a child who suffered an anoxic insult with subsequent seizures will clearly be more comfortable not seizing and therefore the use of anti-convulsants is indicated even if the child is terminally ill, but should the same child develop pneumonia the question of the use of antibiotics is less clear and requires thoughtful and sensitive discussion about benefits and burdens of therapy. However, one should avoid an order for no tests' or do not escalate placed in the chart but rather do everything possible to ensure maximum comfort and quality of life for the child. Seen in this light a palliative care philosophy is congruent with good medical care and is based on a positive attitude of doing as much as possible to meet agreed goals that serve to make the most of the life of the terminally ill child.

As the time of death approaches

There are children who die in the ICU with little prior warning for parents. Examples are neonates born at term but who die unexpectedly from birth complications, sepsis or have congenital heart or other congenital abnormalities; in older children it may be from severe trauma or sepsis. Another group are children with known conditions that were thought to be stable. For these children there may be little or no time available to plan for how death will occur and palliative care may have more to offer the family survivors after the child has died. In one review of circumstances surrounding end of life in a PICU it was found that decisions to forgo life-sustaining treatment required one or two meetings before consensus was reached [10]. For the many children who die in the ICU after a

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decision to withdraw life-sustaining therapies it is often possible to guide families as to what to expect and to offer options for different ways that the end of life can happen.

As the time of withdrawal of life-sustaining therapies approaches the family may appreciate being transferred to a private room. For some families it is important that the extended family get to say goodbye and hold the child in their arms before extubation. For other families it may be important to have very few people present in the room at the time of withdrawal. Some ICU's take pictures of the child and family, make footprints of infants, and cut a locket of hair to keep as physical mementos. Some families are keen for the child to go home or to a hospice on ventilator support with removal of the ventilator occurring once the child is at home or hospice [11]. However there are considerable logistic and staffing implications in achieving this and the proportion of children transferred out of intensive care units to the community is small.

For some families it may be important to wait for an important loved one to be present before they die. Many parents find it both hard and at the same time comforting to have their child in their arms before and while the tracheal tube is being removed. Some mothers have commented that they were present for the entry of their child into the world and they want to be present when they leave. The discussion as to what would be the best environment to die is not an easy one for all involved and yet decisions made from this discussion may remain important memories for all those involved for years to come. What is important is to discuss with the family what may be most meaningful to them and not to assume that we know their needs.

An approach to ventilator withdrawal

Once the decision has been made to withdraw mechanical ventilatory support the child and family should be guided through how the process will unfold. It is important to be sure that family, as well as ICU staff, understand that the child is not having care withdrawn, but is instead having a treatment removed that no longer has more benefits than burdens. For children on full ventilator support it is important to establish a plan for the control of dyspnoea and secretions upon withdrawal of the ventilator [12]. One approach to ventilator withdrawal is as follows:

Carefully titrate opioids and sedatives until the child is comfortable prior to changing respiratory settings.
Ensure adequate access (intravenous, rectal, subcutaneous) and prepare several doses for the administration of additional opioids and sedatives in the case of increasing pain or distress.
Once doses of medications are stable and the child is comfortable (i.e. no pain or dyspnea, secretions easily suctioned) then turn off oxygen saturation and heart rate monitors. There are two reasons for turning off or removing monitors. One is that once the ventilator is withdrawn the alarms will repeatedly go off and become the centre of everyone's focus rather than on being with the child. The second is that the monitors are no longer helpful in managing pain and symptom control as the best gauge of dyspnoea is not a pulse oxymeter but the facial expression and clinical respiratory effort of the child. If parents prefer monitoring to be continued the alarms should be deactivated.
Based on previous discussions with the family have all those who wish to be present in the room together and explain what is happening step by step. This is usually the role of the senior attending physician, with the nurse and any key healthcare worker also present. A junior doctor may also be present to learn how to carefully and respectfully withdraw a ventilator and support a family through a very difficult time.
Decrease the ventilator settings gradually (respiratory rate and oxygen concentration) while adjusting sedative administration in response to signs of increased dyspnoea or other symptoms. The timing of this decrease in ventilator settings may vary from a few minutes to hours depending on the reasons the child is ventilator-dependent and how they respond to a decrease in mechanical ventilatory assistance.
When the child is calm and free of dyspnoea and the ventilator respiratory rate is either at very low rates (e.g. 5 breaths per min) or on continuous positive pressure (CPAP) then the airway should be suctioned and the tracheal tube removed. The ventilator power is then turned off (to avoid alarms ringing).
If the child is appropriately medicated to ensure symptom control prior to extubation while on minimal ventilator settings there should not be any sudden change in the child's state of comfort when the tracheal tube is removed. In the rare event of the child's experiencing difficulty breathing with gasping or secretions after extubation the pre-prepared additional doses of sedatives can be administered in doses appropriate to relieve dyspnea.
Most children stop breathing within minutes to hours after removal of mechanical ventilation. During this time families may have an opportunity to hold their child without being attached to life-support technologies.

Some children live for unexpectedly prolonged periods once the ventilator is removed. Some may even leave the ICU to the

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special care nursery or paediatric wards or even go home to live for additional periods of time. Parents must be forewarned about this. Although this rare occurrence is sometimes initially seen as a miracle by parents it may subsequently become a burden for children that continue to live with a poor quality of life.

Some intensivists give extra doses of sedatives just prior to extubation to avoid the possibility of gasping respirations but it is rare for this to occur when taking the stepwise sequence outlined above.

The use of NMBs, which cause muscular paralysis without any effect on sensation, when life support is withdrawn is controversial. There is no role for NMB in symptom control at the end of life, as the child cannot respond to pain. The only way to ensure that a child is not suffering from dyspnoea and pain is by the judicious use of sedatives and analgesics, and occasionally anesthetic agents (e.g. propofol). [13, 14]

After the death

(See also Chapter 14, After the child's death, and Chapter 15, Bereavement after death.) Once the child has died families should be allowed to stay with their child in the room until they are ready to leave. Prior to bathing/washing the body ICU staff can remove sutures holding catheters in place and medical devices can be removed. Some parents appreciate being offered the opportunity to clean and bathe the body with staff.

A discussion should take place concerning the possible benefits of an autopsy, which will usually have been considered before death. In some situations an autopsy is mandated by law, otherwise the fact that autopsy examination often reveals additional information needs to be highlighted. Adverse publicity about autopsies regarding the removal and storage of tissue samples and organs has resulted in a marked decline in the autopsy acceptance rate. In the United Kingdom, detailed consent has to be obtained including a description of the procedure and specific agreement obtained about the storage and disposal of tissues and organs and their use for research. Although some parents feel that their child has suffered enough and instinctively want to decline an autopsy, it should be explained that having as complete information as possible is often helpful to fully understand the cause of their child's death and that this may be important for them and their families in the future. This is especially important when the cause of death is uncertain, even though at the time of death they may not appreciate just how much not having an answer' may preoccupy them in the future. An autopsy is the only opportunity to settle the question of what really happened . It should be explained that an autopsy does not affect the face and that when clothed the body's appearance will be unaffected. Parents should be given some time to reflect on the benefits for them and their family of an autopsy before making their decision. Physicians asking for an autopsy should recognize that an autopsy is something that may help to bring some closure to a family and that asking for an autopsy is in the family's best interest. If there is any question of a genetically transmitted disease the results of the autopsy may affect the health of future siblings and generations. For all these reasons, even if parents initially reject an autopsy as they feel that their child has suffered enough, time should be taken to explain again the potential benefits of an autopsy.

Most institutions have a forum for the team to review morbidities and mortalities that happened in the unit. These reviews are often oriented around medical issues pertaining to pathology and symptom control and lessons learnt for the future. They also offer the opportunity to look at the psychological impact of deaths on the families and the healthcare professionals. They also allow staff not on duty at the time of the child's death to be brought up to date and understand the full circumstances surrounding the child's death and to ask questions and consider unresolved issues.

After a child dies there are a number of ways to commemorate the child. One way is for staff to write messages for the family in a card that can be sent to them in the following weeks. This also gives staff who were absent at the time of death the opportunity to offer their condolences to the family. At the same time the staff may wish to create a communication book for the unit in which those who were present at the time of the death can write down what happened as well as their thoughts and feelings about the child. All who knew the child or family can contribute as well.

Another way to commemorate the child is to have a memorial book in the unit, chapel or elsewhere in the hospital. Some families may wish to design a commemorative page in the book, it is an alternative for those families who would like to have a commemorative plaque on the wall but which are usually discouraged as other parents may find this disturbing.

The family needs to be informed of the many different forms of bereavement support available from the hospital or in the community. In addition, all relevant health professionals in the hospital and community need to be informed of the child's death. Some staff may attend the child's funeral. Families are usually appreciative of staff being present. Many units hold memorial services for children who have died in the preceding months. Staff and family attendance and participation can help them cope with their child's death. It can also help staff who were unable to say goodbye to the family after the child's death [15].

The senior physician should arrange to see the family a few weeks after the child's death. It provides an opportunity to

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review events on the unit and address any unanswered questions about their child's care. Some parents may appreciate telling the story one more time to the doctor who was involved with their child's life at such a vulnerable time. If an autopsy was performed this will need to be reviewed together with an explanation of the significance of its findings. It also allows the physician to review how the family is coping with their bereavement and if additional assistance might be beneficial. [16]

Many families welcome bereavement follow-up from a suitable healthcare professional that knew the family in the intensive care unit. Providing this family counseling requires both training and ongoing support for those who make the oftendifficult phone calls and meetings with the bereaved family in the subsequent year or two. Important times to make contact with the family are the child's birthday, anniversary of the death, and during important religious and other holiday periods.

References

1. McCallum, D.E., Byrne, P., and Bruera. How children die in hospital. J Pain Symptom Manage 2000;20(6):417 23.

2. Garros, D., Rosychuk, R.J., and Cox, P. Circumstances surrounding end of life in a paediatric intensive care unit. Paediatrics 2003;112 (No 5.): e371 e379.

3. Levetown, M., Pollack, M.M., Cuerdon, T.T., Rurrimann, U.E., and Glover, J.J. Limitations and withdrawals of medical intervention in pediatric critical care. JAMA 1994;(No 16): 1271 5.

4. Roy, R., Aladangady, N., Costeloe, K., and Larcher, V. Decision Making and Modes of death in a tertiary neonatal unit. Arch Dis Childhood Fetal Neonatal Ed 2004;89:F527 F530.

5. Rebagliat, M. et al. Neonatal end-of-life decision making: Physicians' attitudes and relationship with self-reported practices in 10 European countries. JAMA 2000; 284(2):451 9.

6. Meyer, E.C., Burns, J.P., Griffith, J.L., and Truog, R.D. Parental perspectives on end-of-life care in the PICU. Crit Care Med 2002; 30:226 31.

7. Michael Kearney, A. Place of Healing, Working with suffering in living and dying. Oxford University Press, 2000.

8. Contro, N., Larson, J., Scofield, S., Sourkes, B., and Cohen, H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 2002;156:14 19.

9. Hawryluck, L.A., Harevy, W.R.C., Lemieux-Charles, L., and Singer, P.A. Consensus guidelines on analgesia and sedation in dying intensive care unit patients. BMC Medical Ethics 2002;3:3.

10. Garros, D., Rosychuk, R.J., and Cox, P. Circumstances surrounding end of life in a pediatric intensive care unit. Pediatrics 2003;112(5): e371 e379.

11. Craig, F. and Goldman, A. Home management of the dying NICU patient. Semin neonat 2003;8:177 83.

12. von Gunten, C. and Weissman, D.E. Ventilator withdrawal protocol. J Palliat Med 2003; 6(5):773 6.

13. Burns, J.P., Mitchell, C., Outwater, K.M. et al. End-of-life care in the PICU after the foregoing of life-sustaining treatment . Crit Care Med 2000;28(8); 3060 6.

14. Goldstein, B. and Merkens, M. End-of-life in the PICU: Seeking the family's decision of when, not if. Crit Care Med 2000;28(8): 3122 3.

15. Macdonald, M.E., Liben, S., Carnevale, F.A., Rennick, J.E., Wolf, S.L., Meloche, D., and Cohen, S.R. Parental persepctives on hospital staff acts of kindness and commemoration after a child's death. Pediatrics 2005;116:884 90.

16. Macnab, A.J., Northway, T., Ryall, K., Scott, D., and Straw, G. Death & Bereaevement in a PICU: Parental perceptions of staff support. Pediatr Child Health 2003;8(6):357 62.