27 Easing Distress When Death Is Near
Debra Lotstein and Rachel Rusch
Death is not the opposite of life, but a part of it.
haruki murakami
Introduction
Importantly, when a child is dying, all care goals may not be uniformly focused on easing suffering. Recent studies affirm the common clinical experience that, even when a child’s illness is said to be incurable, parents will hope to extend life, concurrent with ensuring comfort. Family values will differ: While some aspire to focus on a peaceful end-of-life experience for their child, others value continued attempts to sustain a child’s life, while others hope for combined considerations of prolonging life and ensuring comfort. As clinicians, it is critical to remember that whatever the primary goals of care and setting of a child’s death, treatment should never be at the exclusion of ensuring comfort.
To this end, thoughtfulness surrounding the language clinicians use during such sensitive and vulnerable times builds the foundation for peace at end of life. The ways clinicians describe the shift in goals of care from a focus on disease-directed treatments toward care centering on a child’s comfort is significant to families.1 Terms such as “withdrawal of care,” “withdrawal of support,” or “allowing natural death” may imply a withholding of attention and services that families may sense as an abandonment of their child or themselves. Alternatively, we can describe how we are partnering with families as they consider and reconsider various medical interventions, including the discontinuation of life-sustaining treatments. As opposed to limiting care, we continue caring deeply for the child and family throughout the dying process and into bereavement. Going further, providing care at the end of a child’s life invites clinicians to be present to everything that arises during this most intimate of clinician–family experiences (Figure 27.1).
Figure 27.1 A Bed of Roses [Cradled Vessel], 2020.
Image from an art therapist expressing the vulnerability, pain, strength, and beauty one might encounter when fully present with children and families through a child’s death. Artwork by Rebecca Yeretzian-Santana, MA, AMFT, ATR (used with permission).
Of note, studies that assess quality of life at the very end of life in children are limited. Thus, the content of this chapter is guided by clinical experience based on consensus and the existing literature.
Interdisciplinary Caring
The care of a dying child requires exquisite collaboration among all involved to meet the needs of the child and family. Table 27.1 highlights key roles and activities of the interdisciplinary team. No matter where the child is being cared for, short huddles or meetings among team members may be helpful to maintain open lines of communication.
Table 27.1 Interdisciplinary roles in the care of the imminently dying child
| Clinician | Discipline specific roles | Interdisciplinary roles |
| Primary physician/Nurse practitioner | Leads discussions related to establishing and re-evaluating goals of care and care plans Therapeutic recommendations to relieve distress Request for organ donation and autopsy | Presence Anticipatory guidance Assessment and relief of child and family distress |
| Nurse | Administration of distress relieving interventions Ensure the setting is equipped to meet child’s and family’s needs with regard to staff, medications and equipment Gatekeeper when requested by family Communicator with larger team regarding bedside experiences of child and family | Respond to questions and/or concerns Perform little acts of kindness |
| Psychosocial clinician | Provide individual or family psychotherapy as a continuation of an ongoing process, or as needed on a crisis basis Facilitate legacy-building opportunities Assist with advanced care planning regarding after-death steps such as wake and/or funeral arrangements Consider larger family and community needs such as siblings and school | |
| Child life specialist | Play activities to allow legacy-building opportunities Play activities for child if able, siblings and other children to promote expression of feelings regarding child’s death Play activities for siblings and other children to create opportunities to escape from the intensity of being with a dying child | |
| Chaplain | Assess and respond to spiritual needs of child and family Ensure that clinicians are familiar with and respectful of family rituals related to death and dying Meet with community spiritual leader as indicated | |
| Pharmacist | Advise about distress-relieving medications Ensure adequate supply of distress-relieving medications |
Used with permission from Wolfe J. Easing distress when death is near. In Wolfe J, Hinds P, Sourkes B, eds. Textbook of Interdisciplinary Pediatric Palliative Care. Elsevier Saunders; 2011: 368–386.103
In Advance of Clear Decline
Topics for Anticipatory Guidance
Most families will have little prior knowledge of the multiple concerns related to end-of-life care and what happens after a child’s death. Notably, anticipatory guidance can help prepare families for the child’s end-of-life course and ease the child and family’s distress. Each family will have a different comfort level regarding these conversations; for some, knowing more about what lies ahead will increase their sense of control and provide comfort; for others, thinking ahead of the present moment can be overwhelming or generate fear that they are causing or rushing their child’s death. Families may be hesitant to openly ask questions, so gently inquiring about their need for information and slowly providing it in manageable quantities is considered a helpful practice.2 Seeking their permission, as in “Would it be helpful for us to talk now about what the future might look like as your child gets sicker?” can be a way to assess an individual’s openness to these conversations. If parents permit it, other close friends or family members can help with logistical information (e.g., funeral arrangements) to alleviate some burden for the family. Box 27.1 provides a guide to important end-of-life topics with suggestions for timing of these discussions and with references to other chapters in this book that cover these topics in more detail.
Box 27.1 Potential Communication Topics in Children with Advanced Life-Threatening Illness, with Proposed Timing
Chapters in this book with additional discussion of these topics are listed in parentheses.
• In advance of clear decline:
◦ Considerations about resuscitation status and other life-prolonging interventions (Chapter 14)
◦ Discussions related to preferred location of care (Chapters 13 and 14)
◦ Discussion related to preferred location of child’s death
◦ Spiritual and religious practices and legacy activities
• When death appears to be within days:
◦ Anticipatory guidance on physical changes at end of life
◦ Discussion related to organ and tissue donation and autopsy (Chapter 14)
◦ Funeral and commemoration planning
Timing around these anticipatory conversations can be difficult given the uncertainty in prognosis for children with serious illness. Clinicians may be asked by family members and even the child themselves to share “how much time is left” when these topics are broached. For some children with complex, chronic conditions who have multiple episodes of exacerbations and recoveries, predicting when they are at the point where recovery is not possible and death is near can be especially difficult. Clinicians should use their assessment of the status of the patient and their knowledge of likely disease course to give families an honest time frame stated as a range (i.e., minutes to hours, hours to days, days to weeks, weeks to months). Acknowledging the uncertainty while at the same time preparing families for the likely course ahead helps build and maintain trust, especially for families who have been told many times before that their child is dying. In the following parent reflection, Augustina shares the way the palliative care team used this approach to both prepare and support her through a long period of recoveries and exacerbations prior to her son’s eventual death.
Family Reflection
Isai was such an amazing child. Since the day the doctors told me he had hydrocephalus, I said “I’ll keep him.” I didn’t know that he was going to have other health issues. He went to the hospital 2 days after he was born to have a surgery, a shunt put in his head. I was so scared back then not knowing what to expect. We went to the hospital for many years to see a lot of specialists regarding seizures, bone problems, lung disease, GI problems, and for his shunt. Later he was on oxygen because his lungs were just getting so tired. About a year before Isai got sicker, I met with the palliative care team in clinic. We made a care and pain management plan so that he could live a better, more comfortable life.
Isai started getting sicker and was in and out of the intensive care unit (ICU) for the last 3 years of this life. The palliative team came to visit, and we talked about a lot of things, like how to keep him comfortable. They would visit him or come to see how I was doing. I’m so happy they did.
Isai was the strongest boy you could ever meet, and I learned a lot from Isai in the last few days of his life. He graduated high school, and he was healthy for 6 months after that. Then he started going in and out of the ICU, and one day at the end of May, he got very sick and we went to the ICU, not knowing he wouldn’t go home anymore. Isai fought for his life like he did many times before, like a warrior, but he was just tired. The palliative care team was there to help him to be as comfortable as he could. They talked to me and gave me moral support.
When Isai passed away the palliative care team helped me a lot. Now they call me and ask how we are doing. I feel so comfortable talking with them, and I’m very grateful for the support they gave me and my son. His legacy will continue to live forever. I’m sure Isai is watching over us and is very happy. He will always be missed.
Augustina Ramos, mother of Isai Carrasco
Discussion of Preferred Location of Care and Death
An important consideration as a child is reaching the end of life is the location of care and of death, if that can be arranged. Faced with the reality that their child’s death is inevitable, some families hope to spend as much time at home as possible. Others feel more comfortable and supported in the hospital environment, with clinicians close at hand to address symptoms or provide care. Notably, the decision of preferred location of care when time is short may be different from the desired location of death, as some families might hope to be at home and come to the hospital only when it seems that death is very close. In addition to child and family preference, the decision to stay home will depend on other practical matters, including whether support for nursing and symptom needs can be met at home, the availability of hospice care with pediatric expertise, and the resources of the family and home itself. Further issues related to discussion and enrollment in hospice services are discussed in Chapter 4.
When Death Is Imminent
Dying is a dynamic process that is influenced by many factors. However, it is remarkable how similar the process can be despite very different underlying illnesses. Clinical experience suggests that when approaching death within hours to days, a child is often bedridden, semiconscious, with little or no oral intake. Changes in pulse, respiration, and peripheral circulation may also be apparent. Table 27.2 summarizes changes frequently seen in dying patients which can be indications of timing of death and may also signal the need for specific comfort-focused measures.3,4
Table 27.2 Signs of impending death
| Organ system | Change | Manifested by/Signs of: |
| Constitutional/Neurologic | Fatigue | Sleeping more than awake |
| Weakness | Inability to get out of bed; inability to lift head off pillow; rarely, there is a burst of energy just before death | |
| Decreasing level of consciousness | Increasing drowsiness, difficult to arouse; unresponsive to verbal or tactile stimuli | |
| Decreasing ability to communicate | Difficulty word finding, delayed or inappropriate response, monosyllabic words, verbally unresponsive | |
| Terminal delirium | Day–night reversal; confusion; agitation/ restlessness; difficult to console; purposeless repetitious movements; moaning, groaning | |
| Pain | Grimacing; moaning; tension in forehead between eyebrows; difficult to console; agitation | |
| Loss of ability to close eyes | Whites of eyes showing (with or without pupils visible); conjunctival erythema | |
| Decreasing appetite/food intake | Refusal of food; emesis; weight loss, wasting; loss of muscle and fat | |
| Decreasing fluid intake | Dehydration, dry mucous membranes | |
| Loss of ability to swallow | Dysphagia, coughing, choking, aspiration; loss of gag reflex; buildup of oral and tracheal secretions; gurgling | |
| Skin/Extremities | Peripheral edema | Due to hypoalbuminemia, third spacing |
| Cutaneous ischemia | Erythema over boney prominences; skin breakdown, wounds | |
| Cardiac/Renal | Cardiac dysfunction | Tachycardia, weak pulse; hypertension followed by hypotension (not responsive to fluids); mottling and cooling of the skin; dependent venous pooling |
| Renal dysfunction | Dark urine; oliguria; anuria | |
| Loss of sphincter control | Incontinence of urine or bowels; perineal skin maceration and candidiasis | |
| Respiratory | Respiratory dysfunction | Noisy wet-sounding breathing; abnormal breathing patterns (apnea, agonal breaths, and/or Cheyne-Stokes respirations, characterized by oscillation of ventilation between apnea and tachypnea, with a crescendo-decrescendo pattern in the depth of respirations); rarely, aspiration, asphyxiation |
Adapted from Bicanovsky L. Comfort care: Symptom control in the dying. In Walsh, D et al. eds, Palliative medicine. 1st ed. Saunders; 2009; and Emanuel L, Ferris F, von Gunten C, Hauser J, Von Roenn J. The last hours of living: Practical advice for clinicians. https://www.medscape.com/viewarticle/716463. 2010.
Key Principles of Care
There are several key principles in managing the child’s final days. An analytical approach to symptom control continues but usually relies on clinical findings rather than investigation of possible causes. Medication and treatments should be reviewed with regard to how they are contributing to comfort or possibly causing uncomfortable side effects. It is helpful to review of the route of medication administration, as many patients lose the ability to take medications orally. While interdisciplinary team care is always important, perhaps there is no other time where it is quite as essential.5
Finally, it is essential that the care team maintains effective communication and ensures that support is in place for the family. A daily visit for inpatients, or for those at home a daily phone call at a planned time or even occasional home visits from either a hospice or hospital-based team, can be very reassuring for families.6 Importantly, even when the child may be comfortable and symptoms are well-controlled, a clinician’s presence during the final period can be very comforting to family members. Such a presence reinforces that the dying patient’s welfare remains important, and it provides opportunity for support and guidance to the family at a time of extreme stress. It is critical to inform the family that although death may be imminent, the time frame may be hours to days.
Letting the Family Know When Death Is Imminent
Parents and other family members are often fearful that if they step away from the bedside, they will not be present at the time of the child’s death. As such, it is often helpful to let family and loved ones know about the signs of impending death both to prepare for what to expect and to try to judge when presence at the bedside may be warranted. To introduce this topic, simply ask whether it would be helpful to know more about what to expect as the child is dying. If a parent agrees to be informed, it is important to be clear, provide short pieces of information, and then subsequently check if it is all right to continue.
It is also critical to prepare parents that it may not be possible to know the exact moment when death will occur. Anecdotally, some families may find comfort in knowing that children may choose to die when their parent is not present as a last effort to protect the parent from further suffering, if such a choice is indeed possible.
Setting the Stage
At Home
Families should be informed about the change in their child’s status and should be prepared for potential changes in symptoms and signs of impending death (see later discussion). At this time medications and treatments can be reviewed, and those that do not contribute to comfort could be discontinued. The child will need continuous care, and some may require professional in-home care around the clock. If a clinician cannot be present continually, the family must have access to immediate help for symptom management by phone, and it is essential that families have adequate supplies of medications to treat common symptoms in the home, including access to opiates and benzodiazepines. If a child is no longer able to take needed medications orally, alternative forms and methods of giving medications should be explained, including those that can be given by dissolvable forms or rectally. Families should have a signed in-home order for withholding of life-sustaining treatments, especially if emergency medical services may be involved.
In addition to the anticipatory guidance around physical changes immediately before and after death, parents (or a close friend/family member) should be given instruction about what should happen with the body after death. If the family is being cared for by a hospice agency, the family should know to contact the agency at the time of death, and typically a hospice nurse will be available to pronounce the child and contact the funeral home and others who should be informed. If an autopsy or organ donation are being considered, the family should know how to contact the appropriate hospital or organ procurement agency. As families may contact emergency services in a moment of crisis, a call from a clinician ahead of time to the local police department will help them be prepared in case they are called. Providers should help the family determine ahead of time when hospice is not involved who will be called to pronounce the patient and who will be filling out the death certificate, which may need to happen before the funeral home will pick up the body (depending on state and local regulations). Emergency services can be called for pronouncement and presented with an out-of-hospital do-not-resuscitate (DNR) order so they do not need to initiate cardiopulmonary resuscitation or bring the body to a hospital. However emergency services do not necessarily need to be called for expected deaths in the home if one of the child’s primary or palliative care physicians may be contacted to pronounce the death. Even in expected deaths, a coroner may be contacted for out-of-hospital deaths, and providers should be familiar with the policies for this in their practice area. The family should have a funeral home chosen ahead of time who will come to remove the body at the appropriate time. Refer to Chapter 4 for further explanation of the role of hospice in out-of-hospital deaths.
In the Hospital
Continued medical interventions, including vital sign assessments, pulse oximetry, nonessential medications, and blood work may be disruptive and no longer beneficial to the child’s care. However, discussion of discontinuing these procedures is delicate and can be perceived as no longer caring for the child. This is especially true among families who are used to vigilantly monitoring their child. Parents should be made aware that discontinuing these procedures allows them time to be with the child without interference from intermittent procedures, wires and tape, and/or sounds from alarms. Gentle suggestions can be made that discontinuing monitors would enable the family to focus entirely on the child, rather than the surrounding medical equipment. As always, flexibility is essential. Some families may simply not want to forgo what they are used to and will often state that the vital sign assessment and/or the monitor will bring them comfort and help them know when the child’s time has come.
Considerations about the physical space within a hospital setting for a child’s dying process may be helpful for patient, family, and practitioner alike. When possible, larger and less medicalized rooms may provide feelings of comfort and peace to the child and their family. If such spaces are not available, these intentions can be adapted by bringing in larger beds or doubled beds into standard hospital rooms if it is the wish and hope of a family to be able to lie next to their loved one. If families desire, bringing in photos, blankets, and cherished items from home can bring great meaning and comfort. Some patients and families find support from music, whether it be favorite family songs or important spiritual hymns. Encouragement of playing such music and partnering with music therapists when possible can provide additional meaningful support to the child and their family.7 Additionally, therapeutic books and tactile interventions such as weighted stuffed animals may be additional appropriate supports for siblings and caretakers when death is imminent.8,9
Advocating for families and loved ones to more freely visit a child’s bedside throughout the end-of-life period can help them to best support a child. Alongside hospital policy and treatment considerations, PPC practitioners can assist in allowing the patient and family to guide who and what they feel comfortable with having present at bedside during such a deeply personal time. Open communication with bedside nursing and primary medical teams can help ensure compassion for the various ways in which families may navigate this period.10 For some families, being present at bedside during the death of their loved one may be too difficult, and partnering with supportive services such as social work and spiritual care can facilitate psychological and emotional support for both the child and their family. In cases of psychosocial complexity wherein families may not be allowed to be present within the hospital, additional attention may be needed in supporting bedside nursing and primary care teams in a way that is thoughtful of professional and personal boundaries while continuing to promote compassionate care for a child through the end of their life.11
Respecting Spiritual and Religious Values at End of Life
Hospital-based spiritual care teams, hospice chaplains, and community clergy can provide expert support and guidance to families for whom religion or spirituality is a part of their adaptive coping.12 Partnering with these individuals can be particularly supportive of specific traditions that may be important to a child, their family, and their faith community through end-of-life and postmortem care. Remaining present to different forms of spiritual or religious needs within family systems and creating an open forum for communication in this regard can be an additional benefit while partnering with chaplain colleagues.13 Where spiritual care teams may not be available, it can be beneficial to humbly partner with patients and families directly, as a therapeutic listening presence as opposed to spiritual expert. Seeking guidance and support from community members the family may identify as important in supporting their spiritual needs can be a helpful support of this partnership. Additional guidance on some traditional religious tenets surrounding death and dying is provided in Table 27.3. It is also important to maintain spiritual and cultural humility and not assume that specific religious needs are central for a specific child and/or family.14
Table 27.3 Examples of religion and care at the time of death
| Religion | Concepts about death | Rituals near and at time of death | Routine postmortem care | Body disposal | Mourning rituals |
| Buddhism | Death is seen as a process in the cyclical continuum, which includes birth, sickness, old age, death, rebirth, sickness, old age, death, and so on. | Because death is associated with rebirth, great importance is attributed to the state of mind, which should be calm and clear. This means that serene surroundings are important at the time of death. No formal rituals are customary at the time of death. The family may wish to contact a monk who will pray for the deceased. Prayers do not need to be performed in the presence of the body. | In general, Buddhism does not oppose autopsies. Many Tibetan Buddhists believe that the dead body should not be cut or embalmed until 3 days have passed Routine postmortem care is generally acceptable. | Cremation is typical. | The first 7 days after death are the most important for final and funereal prayer. Prayers are then said weekly, during a 49-day funeral period. It is during this period that the prayers of the mourners are believed to help the deceased during the post-death transformation and awaken their spirit to the true nature of death. |
| Greek and Eastern Orthodox | Orthodox Christians believe death is a necessary consequence of human life due to original sin. Death is necessary to achieve everlasting life. | When a person nears death, it is customary for the priest of the church to be called. The priest in the family’s parish is preferred. If the family does not have its own clergy locally, the chaplain may assist in contacting an Orthodox priest through the local Greek Orthodox Diocese. If the patient is awake, Holy Communion can and should be offered to the dying person. The Orthodox priest may also anoint the ill person on the forehead, cheeks, chest, and hands with holy oil in a ritual of spiritual and bodily healing known as the Sacrament of Holy Unction. There are no Last Rites in the Orthodox Church. When the patient has died, the priest will read special prayers for the dead, as well as provide emotional and spiritual support to the bereaved. | Orthodox persons usually decline autopsies, although they are permitted if there are compelling medical reasons to do so, if the body is treated with dignity and if all the tissues and organs are returned to the body for burial. When a child dies, it is customary to dress him or her in white as a groom or bride of Christ, and great care is taken in the selection of burial clothing. | Burial is preferred by the Orthodox Church; allows cremation if the law of the country requires is. | The Eastern Orthodox hold a special vigil over the dead called the parastasis or panikhida, as a time of contemplation on death. The funeral service includes hymns, chants, and Bible readings. |
| Hinduism | Hindus believe that although the physical body dies, the soul of a person has no beginning or end (Samsara). Death marks a passage rather than the end of life. At death, the soul may be reborn into another living being. The nature of subsequent rebirth is a consequence of actions taken in this life. | The family may wish to keep vigil at the bedside, and play recordings of sacred Indian music to help the patient detach from pain or other worldly things. While the burning of incense is not permitted in the hospital, special arrangements may be made for the use of incense in the hospital chapel or prayer room. The ashes from the incense are often placed on the forehead of the patient, as a blessing. Hindu clergy is not usually requested; although when present, may tie sacred threads around the wrists or neck of the body. Clinical staff should not remove these threads. | Autopsy is permissible. After death, the family may wish to place drops of holy water and basil leaves in the mouth of the deceased, as well as wash or dress the body. The clinician should wear disposable gloves to show respect in closing the eyes and wrapping the body. The deceased’s arms should be straightened. | Cremation is preferred, usually within 24 hours of death. In preparation for cremation, the body is bathed, laid in a coffin, adorned with sandalwood paste and garlands, and wrapped in white cloth. Embalming is not customary. | Survivors may choose to fast until the cremation takes place. If so, families may appreciate advocacy to ensure prompt cremation. Family members sometimes choose to delay the cremation until the arrival of extended family. The remains are usually scattered in the Ganges River in India or another body of water. In the cremation ceremony, the body is carried three times counterclockwise around the pyre, then placed upon it. The chief mourner presses the cremation switch. The days of mourning are considered a time of ritual impurity. Mourners cover all religious pictures in the house and do not attend festivals or visit swamis or take part in marriage ceremonies. Mourning period length varies, though Hindu scriptures caution against excessive mourning. A bereavement ceremony to assist the well-being of the soul takes place in the home between 10 and 30 days after death, often on the 13th day. The first year anniversary and subsequent anniversaries of death are very important to surviving family members and involve sacred religious rites . |
| Islam | Muslims believe that there is another world after death for which believers should prepare during their lives on earth. | The family of a dying Muslim may ask that the patient face the east, with his or her head elevated. At the time of death, the Muslim call to prayer is recited by friends, and a chapter of the Koran is read aloud. An Imam is not customarily present at the time of death, but will come if asked. | The body is considered sacred, thus autopsies are forbidden except in cases of compelling legal or medical reasons. If an autopsy must be done, it should be as noninvasive and minimally disfiguring as possible, such as tissue biopsy, and all body parts and fluids returned to the body for burial. Healthcare providers should speak with the family or the Muslim chaplain before giving postmortem care. Many may prefer that another Muslim of the same sex prepare the body. If no Muslim is present, a non-Muslim should use gloves so as to not touch the body. The body should be draped to ensure privacy at all times. Washing will be done in a ritual way at the funeral home. When doing the postmortem care, the head should be turned to the right, and the arms are laid by the patient’s side. No locks of hair should be cut. | Burial is performed as soon as possible because embalming is not customary. Cremation is forbidden. The corpse is bathed and wrapped in a plain cloth called a kafan. The deceased is buried in the ground after the funeral service. Only burial in the ground is allowed according to Sharl’ah, Islamic law. | Mourners gather and offer Janazah, prayers for the forgiveness of the deceased. Once the body is buried, Muslim mourners offer one final Janazah prayer |
| Judaism | Judaism defines death as occurring when respiration and circulation are irreversibly stopped. Brain death is not generally acknowledged among the most Orthodox, and is a source of debate among Conservatives. Euthanasia and withdrawal of care that hastens death are strictly forbidden. In some cases, extraordinary care may be withheld. There are precise rabbinical guidelines called Responsa for such situations, and consultation with the Rabbi around such matters is often sought by the family. | At the time of death, the family may wish to gather at the bedside, read psalms and recite the vidui, the last prayer of confession. It is not customary for a rabbi to be present at the time of death, although one may be requested. | Some Orthodox and Conservative Jews do not approve of autopsy, unless required by law or the life of a specific person, such as other family members in the case of a hereditary illness, can be saved by information from the autopsy. If an autopsy is done, the more limited the disfigurement, the better. Needle biopsy, limited autopsy, or in situ examination are preferred. All body parts and fluids need to be returned for burial. Some Orthodox families may request their rabbi to be present to observe the autopsy. | Cremation is forbidden. Burial is required to be done as soon as possible; embalming is not permitted unless legally required. The dead are buried as soon as possible. The body is washed to purify it, dressed in a plain linen shroud. The casket, a plain wooden coffin, remains closed after the body is dressed. The body is watched over from time of death till burial, as a sign of respect. The kaddish, a prayer in honor of the dead, is said. | Jews do not make funeral arrangements on the Sabbath or major holidays. A mourning period follows the funeral for the immediate family (shiva). Friends and hospital staff who have come to know the family well are welcome to visit the home in the mourning period. It is customary to make charitable contributions rather than send flowers. There is an intense 7-day mourning period, called shiva, following the |
| Jews believe death in this life will eventually lead to resurrection in a world to come. | Postmortem care is very important to observant Jews. Medical personnel should consult the family before washing the body. The nurse should provide routine care of the body wearing gloves. The arms are not crossed in postmortem care. Any clothing, dressings, or medical equipment with the patient’s blood must be buried with the patient. The Jewish community may use designated individuals to wash the body at a later time and prefer funeral homes that are familiar with Jewish faith and ritual. In the Jewish traditions, the body may not be left alone until the burial. Family may wish to station someone outside the morgue to sit with the body until it is removed from the hospital. | burial. Mourners traditionally rent their garments as a symbol of grief. Today, people often wear a black ribbon instead of tearing their clothes. Mourners also cover mirrors, sit on low stools, and avoid wearing leather. The full mourning period lasts a year, after which mourners observe the dead’s yahrzeit, or yearly anniversary, of the death. | |||
| Protestantism | Conservative Protestants believe that everyone has the gift of eternal life. The body dies, but the soul lives forever. The larger question is where each person will spend eternity. Heaven is a glorious location where there is an absence of pain, disease, sex, depression, etc. and where people exist in the presence of Jesus Christ. Hell is a location where its inmates will be punished without any hope of relief, for eternity. The level of punishment will be the same for everyone. A second major belief is that most humans will be sent to hell after they die. Only those few who have been saved will go to heaven. Salvation requires repentance of sins and trusting Jesus as one’s Lord and Savior. Believers who have done many good deeds will be rewarded more in heaven; believers who have led an evil life will be rewarded less. | If a child is critically ill, the nurse may want to ask the family about baptism. If the family wishes to baptize their child in the hospital, the Protestant chaplain can be paged or the church pastor called. The family usually prefers to be present and often finds the pastor to be a reassuring companion at such a time. Providers should inquire if families would like their pastor or chaplain called. There are no essential end-of-life sacraments, although some Episcopalian, Lutheran, and Pentecostal persons may request anointing. Reading of scripture, bedside prayers that are personalized to the particular situation, and singing are common. | There are no special concerns for postmortem care. Organ donation and autopsy are a matter of personal preference. | No restrictions or special concerns. | Funerals, memorial services and burials are scheduled at the family’s convenience because embalming and/or creamation are common. |
| Roman Catholicism | The Catholic church has a high regard for the preservation and dignity of life, including the sick, disabled, and unborn. The church does not obligate persons to pursue gravely burdensome or ineffective life-sustaining interventions. Analgesics may be used in sufficient amounts to relieve pain even if life is thereby shortened, so long as death is not the intended effect. Catholics see death as a passage from this life to the new, everlasting life promised by Christ. The soul of the deceased goes on to the afterlife, which includes purgatory as well as heaven and hell. According to Catholic belief, the bodies of the dead will be resurrected at the end of time. | Because the priest is viewed as an intermediary between the believer and God, and one whose prayers have special merit, the priest is often requested at the time of death. Even when all sacramental care has been provided earlier, families may request that the priest be present. Families may request an emergency baptism, or sacrament of the sick before death. | There are no special concerns for postmortem care. Organ donation and autopsy are a matter of personal preference. | No restrictions or special concerns. The Church encourages Catholics to be buried in Catholic cemeteries. In 1963, the Vatican lifted the ban on cremation for Catholics. However, the cremation must be interred, not scattered or kept at home. | The Catholic funeral service is called the Mass of the Resurrection. During it, Jesus Christ’s life is remembered and related to that of the deceased. Eulogies are not generally allowed during the funeral Mass, but may be delivered at a wake or other nonreligious ceremony. There is also a final graveside farewell, and additional traditions depending on the region. |
This information is an introduction to specific religious traditions and is meant to help clinicians understand variations in religious practice. Providers are cautioned not to overgeneralize or characterize all members of a religious group as being alike. A person’s spiritual and religious profile is unique and can only be determined when trust has been established and open-ended assessment questions are asked.
Adapted from Children’s Hospital Boston practitioner information pages:
Religious Traditions—Buddhism (1997, revised 2000; Greek (and Eastern) Orthodox (1999); Hinduism (1998); Islam (the faith of Muslims) (1997, revised 2002); Judaism (1998); Protestantism (Christian) (1997); Roman Catholicism (1998).
All published by Children’s Hospital, Boston, Massachusetts. All rights reserved.
Clinicians are, at times, asked to pray for a child or to lead a family in prayer. This may be an indication of unmet spiritual needs and further exploration of whether it would be helpful to involve the chaplain, if he or she is not already involved, may be warranted. Regardless, the clinician may feel conflicted about whether to participate in or lead a prayer on behalf of the patient because of considerations of professional–personal boundaries and his or her own religious beliefs or spirituality. Consideration of the following options, which attempt to respect the integrity of the clinician’s beliefs and be supportive of the family’s needs, may be helpful.15,16
Legacy and Memory-Making Activities
Legacy and memory-making activities may feel helpful and important for families to pursue during a child’s dying processes and soon after their death.17,18 When possible, primary social workers, spiritual care providers, and child life specialists should be involved for additional assessment and implementation of such activities. Specific interventions may include creating hand, foot, or thumb prints; saving locks of hair; or recording the child’s heartbeat.19 Obtaining photos or videos, whether by the family or in partnership with community resources, can provide additional activity at bedside and provide comfort in bereavement.
Easing Child Distress
Shifting the Focus of Medical Care
Importantly, when a child is actively dying, comfort can be achieved without a focus on reversing the underlying causes of symptoms (see Table 27.2 for changes seen with impending death). For example, it may no longer be indicated to directly treat severe constipation if the child is not expected to live more than a few days. Rather, abdominal discomfort from constipation could be treated symptomatically with opioids, even though opioids may exacerbate constipation. Similarly, continued dressing changes for bedsores may be more painful and disruptive than opting for a more general approach of titrating symptom-relieving medications. Most importantly, treatment decisions should be guided by the priorities of the child and the parent. Again, these decisions should be individualized and discussed with parents so that they understand that it represents a change in care strategy rather than a decrease in care provided. Guidance for approaching some specific symptoms seen at end of life are described in detail next.
Drawing Inward
As they approach death, children may become more withdrawn and less interested in usual activities or in interacting with loved ones. Understandably this can be interpreted as a rejection by family members and so should be explained as a normal aspect of dying. This phase has been described as a “drawing inward.”
The endpoint of the terminal phase is often marked by a turning inward on the part of the child, a decathecting from the external world. Cognitive and emotional horizons narrow, as all energy is needed simply for physical survival. A generalized irritability is not uncommon. The child may talk very little and may even retreat from physical contact. Although such withdrawal is not universal, a certain degree of quietness is almost always evident. The child is pulling into himself or herself, not away from others. (B. Sourkes)20
Altered Consciousness
Diminished wakefulness is very common during the last days of life21 and is often desirable for the child and family. However, it is also common for parents and loved ones to want to hold onto every wakeful moment possible. At times this desire for a child’s awareness/alertness can hinder titration of pain-relieving medications. The team should continue efforts to try for a careful balance of comfort and an ability to interact, while at the same time encouraging the family to continue their own interactions, such as gentle hugging, touching, talking, or singing, with the hope that the child perceives such gestures. One family reread aloud the first book of the Harry Potter series to their dying child, hoping that the story would bring as much joy to him as it had previously.
Escalating Pain, Dyspnea, and Agitation
Three very common symptoms during the final days of life that may require intensive treatment efforts are escalating pain, dyspnea, and agitation. Further details for management of these distressing symptoms can be found in Chapters 20, 23, 24. There are multiple challenges to successful symptom management at end of life, including lack of knowledge and fear of opioid escalation, communication barriers among team members, and fear of hastening death.22 Clinicians may need to work at the institutional level to develop guidelines, standard order sets, and policies that will allow greater consistency in medication administration and symptom management outcomes. An example of a standardized order set is provided in Box 27.2. When a patient experiences a refractory symptom that cannot be captured through appropriate titration of symptom-relieving medications, sedation to unconsciousness, or palliative sedation, may be indicated. Palliative sedation is discussed in further detail later.
Box 27.2 Guidelines for Management of Escalating Pain, Dyspnea, or Agitation at the End of Life
With Escalating Pain, Dyspnea, Agitation
Identify the doctor or nurse responsible for prescribing for patient.
Care nurse to remain at bedside, and prescriber to remain on unit until symptoms are controlled.
Loading Dose
For patients not already receiving opioids: administer loading dose IV x one as follows:
Subsequent Dosing
Doses may be given every 10 minutes as needed for end-of-life symptoms.
Begin intermittent dosing, increasing every third dose, as indicated below:
| If pain/dyspnea not relieved: | Example: |
| Doses given q10min prn | |
| Dose #1 is starting/loading dose | 10 mg |
| 1 × previous dose | 10 mg |
| Increase to 1.5 × previous dose | 15 mg |
| 1 × previous dose | 15 mg |
| Increase to 1.5 × previous dose | 22.5 mg |
If inadequate relief from first dose, give second dose.
If inadequate relief from second dose, notify prescriber of need for additional orders.
If inadequate relief, continue the same sequence prn: 1×, 1.5×, 1×, 1.5×, 1×, 1.5× previous dose.
Continuous Infusion Instructions
Recommended Hourly Rate = total opioid dose administered during rapid titration phase ÷ 6 (which is 2× half-life in hours).
Adjustments for Moderate Increase in Symptoms
If at any time symptoms recur, resume intermittent dosing as recommended above, and then increase hourly continuous infusion dose accordingly.
For a patient who has been stabilized on patient controlled analgesia and then experiences a mild to moderate increase in symptoms, increase continuous infusion and intermittent dose by 1.3–1.5 × current dose.
Always consider use of adjunctive therapy (see guidelines). If morphine equivalent >5 mg/kg/hour, or hydromorphone >0.8 mg/kg/hour, adjunctive therapy is strongly recommended.
Adjunctive Therapy
For anxiety/agitation (Recommended starting dose):
Intermittent Lorazepam: 0.05 mg/kg IV q4h prn anxiety/agitation
For excess respiratory secretions:
Glycopyrrolate: 4–10 mcg/kg/dose IV q3h prn secretions
Children 2–12 years: 0.0625–0.125 mg PO/SL q4h as needed; maximum daily dosage 0.75 mg
Children >12 years to adults: 0.125–0.25 mg PO/SL q4h as needed; maximum daily dosage 1.5 mg
Children >12 years and adults: Apply 1 disc behind the ear every 3 days as needed
Noisy Breathing
Due to an inability to handle secretions, breathing can become particularly noisy when death is imminent. This is often described as “the death rattle,” a term that should not be used, especially with families, given its harshness. Noisy breathing may be more common in patients with primary lung disease or brain tumors.23 It is critically important to prepare family members for this possibility. Because this symptom is often present when the child is already unconscious, the child may not experience this as uncomfortable. Deep suctioning should be avoided during this phase due to discomfort and lack of efficacy. However, transdermal scopolamine, l-hyoscyamine drops for smaller patients, and glycopyrrolate may be helpful in drying secretions and diminishing this symptom, although evidence of benefit is limited.24 Addressing and treating what the family perceives as suffering should be a priority, even if there are differences of opinion within the care team.
Emergencies During the Terminal Phase
Rare circumstances can result in the child experiencing sudden high distress and some are best treated using more invasive strategies. Patients should be assessed for their risk of experiencing these complications so that effective interventions can be readily available.
• Bowel obstruction. Similarly, there are effective strategies for the medical management of bowel obstruction, as delineated in Chapter 25; however, placement of nasogastric suctioning can provide the most immediate and sustained relief, if doing so will not add to a patient’s discomfort.
• Delirium and/or hallucinations. It is common for the child to become less coherent toward the end of life, however, overt hallucinations and agitation can be extremely distressing for both the child and family. Chapter 20 provides an extensive review of assessment and management of delirium. In end-of-life instances, the child may respond well to intermittent doses of a neuroleptic such as haloperidol, which can be administered orally or intravenously.
Child and Family Distress
What to Say to the Child
A common source of distress for families and clinicians alike is knowing how to talk with a cognitively engaged child about his or her impending death. If welcomed by the patient and their family, PPC interdisciplinary teams can offer guidance around communication as the dying process unfolds. Clinicians should also be respectful of times when parents and caregivers feel able to emotionally care for their loved one without outside support.
The child, regardless of age, is often the best guide to ongoing communication during the end-of-life process. If given the opportunity, many children and adolescents will ask questions or share reflections about their physical, emotional, psychological, or spiritual experience. Allowing the patient to direct these end-of-life conversations may bring a sense of peace for the child and the family. Interdisciplinary teams can model ways to encourage a child’s openness to reflect and ask these questions; teams can also share language the family might use to mitigate a child’s distress, including expressions of ongoing commitment to the child’s comfort and safety.
Adaptive Coping and Language of Hope
Some families continue to express hope for recovery and miracles as their child becomes sicker and death becomes more certain. For these families, such talk does not inherently mean that a family is in “denial,” but instead reflects how they are coping with their child’s illness and may even have benefits for the initial stages of bereavement.25,26 Clinicians may take the opportunity to both affirm a family’s loving and hopeful statements regarding their child’s life while also expressing ongoing worry and prognostic education where appropriate. In speaking with primary and bedside clinicians, PPC teams may model compassion toward the family’s ability to simultaneously hold their hopes and their worries as their child nears end of life, potentially enhancing empathetic communication and mitigating provider moral distress.27
Support During a Resuscitative Effort
Approximately 50% of children who experience cardiac arrest in the hospital and 90% of those who experience an out-of-hospital arrest will die.28,29 Most hospitals have instituted efforts to preempt unexpected cardiorespiratory arrest by instituting “rapid response teams” and protocols to promote early transfer to the ICU.30 Despite these efforts, codes continue to occur and efforts should be made to attend to the family’s distress. Such efforts include identifying a point person for the family who can serve as a constant presence during the resuscitative effort, provide regular updates, answer questions, and make every effort to meet the family’s needs. Families are now regularly invited to be present during resuscitative efforts, and most families report that they want to be given the option. After the event, most report they would choose to be present again.31,32,33,34
The Child Who Lingers
Clinical experience suggests that families may express distress regarding the length of time it is taking for the child to die when active dying lasts for hours or days. It is impossible to imagine the enormity of a family’s distress associated with this period; the ambivalence of feelings related to wanting to hold on to every moment versus not being able to bear a moment longer at the child’s bedside. Anticipatory guidance aimed at preparing families for this period can be helpful. Furthermore, suggesting ways to be with the child can ease family distress, including encouraging activities that engage the senses, for example through
• Touch, such as lying beside the child, providing gentle massage, or hugging
• Smell, depending on family culture, incense and other familiar smells may be calming
Management of visitors is a key role of the healthcare team. For some families, being surrounded by extended family and friends is critical, for others it is unbearable. Inquiring about what is most comforting is essential.
Clinical staff caring for the patient should also receive anticipatory guidance regarding expected timing of death and guidance and support when the dying process seems prolonged. Staff distress in these instances can be addressed through clear guidance in daily huddles, frequent check-ins by the palliative care team, and additional team meetings to ensure ongoing dialogue and communication.35 Note that a child may be kept alive through ongoing provision of oxygen via nasal canula or intravenous fluids, and if ongoing survival is perceived as prolonging a child’s suffering these interventions could be stopped, with family involvement in decision-making. Throughout this period, attention to the child’s comfort remains the top priority and if suffering is apparent to loved ones and clinicians, medications should be further titrated.
Addressing Requests to Hasten Death
Rarely, a parent will overtly request that the child’s death be intentionally hastened,36 and this is most commonly associated with parental fears about child suffering. A child too might ask about this, or ask about assisted dying, which is legal in some states in the United States (and in some other countries) for those older than 18 with terminal conditions. Voluntary euthanasia is legal in the Netherlands, Belgium, Luxembourg, Colombia, and Canada; in some of these countries the laws include minors who can provide assent.37,38 There are no legal hastening options for minors in North America. Yet, if the child or parent requests hastening, it is important to respond with more than just a statement about its legal prohibition. Just as other requests should be explored to identify underlying meaning and fears, so should this type of request. Explanation of legal and effective alternatives, such as further titration of symptom-relieving medications and palliative sedation, is helpful, and psychosocial or existential distress can be addressed by members of the interdisciplinary team.
Clinical Vignette
Eddie was 6-year-old boy with advanced metastatic alveolar rhabdomyosarcoma. The primary lesion involved his face and neck, and he also had pulmonary and bone marrow metastases. His parents wanted to be prepared for what to expect for his end-of-life course, and the palliative care team offered the following information. One significant concern was that Eddie’s tumor would progress locally faster than in his lungs and bone marrow, and, as a result, he was at high risk for upper airway obstruction and suffocation at the end of life. The family was also told about progressive dyspnea and fatigue, should other sites of disease progress faster. Upon hearing these possibilities, his father, Charlie, asked whether Eddie’s life could be intentionally ended when he reached a stage when his life was no longer worth living. Rather than focusing on the illegal nature of such an action, Charlie was asked more about his worries and he described immense concerns about Eddie’s experience of suffering. In response, the physician gently informed him that we may not be able to tell when life was not worth living from Eddie’s perspective, but that every effort would be made to try to ensure his comfort. Eddie’s father was told about strategies for intensive symptom management and palliative sedation, if necessary.
Eddie did not suffer from dyspnea or upper airway obstruction. He simply became less and less responsive and required minimal pain-relieving medications. He died peacefully surrounded by family, friends, and clinical caregivers. Several weeks following his death, Charlie reflected that had Eddie’s life been intentionally ended, it would have been treating his own suffering, and not Eddie’s.
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