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Children's palliative care[edit]
Pediatric Palliative care is family-centered, specialized medical care for children with serious illnesses that focuses on mitigating the physical, emotional, psychosocial, and spiritual suffering associated with illness to ultimately optimize quality of life.

Pediatric palliative care practitioners receive specialized training in family-centered, developmental and age-appropriate skills in communication and facilitation of shared decision making; assessment and management of pain and distressing symptoms; advanced knowledge in care coordination of multidisciplinary pediatric caregiving medical teams; referral to hospital and ambulatory resources available to patients and families; and psychologically supporting children and families through illness and bereavement.

As with adults, pediatric palliative care can be introduced at any point in a child with serious, complex medical illness's life. In practice, palliative care is often offered at the time of diagnosis of a serious medical condition.

Communication strategies and medical decision making considerations when caring for children and families
Within the realm of pediatric medical care, the palliative care team is tasked with facilitating family-centered communication with children and their families, as well as multidisciplinary pediatric caregiving medical teams to forward coordinated medical management and the child's quality of life. Strategies for communication are complex as the pediatric palliative care practitioners must facilitate a shared understanding of and consensus for goals of care and therapies available to the sick child amongst multiple medical teams who often have different areas of expertise. Additionally, pediatric palliative care practitioners must assess both the sick child and their family's understanding of complex illness and options for care, and provide accessible, thoughtful education to address knowledge gaps and allow for informed decision making. Finally, practitioners are supporting children and families in the queries, emotional distress, and decision making that ensues from the child's illness.

Many frameworks for communication have been established within the medical literature, but the field of pediatric palliative care is still in relative infancy. Communication considerations and strategies employed in a palliative setting include:


 * Developing supportive relationships with patients and families. An essential component of a provider's ability to provide individualized palliative care is their ability to obtain an intimate understanding of the child and family's preferences and overall character. On initial consultation, palliative care providers often focus on affirming a caring relationship with the pediatric patient and their family by first asking the child how they would describe themself and what is important to them, communicating in an age and developmentally cognizant fashion. The provider may then gather similar information from the child's caregivers. Questions practitioners may ask include 'What does the child enjoy doing? What do they most dislike doing? What does a typical day look like for the child?' Other topics potentially addressed by the palliative care provider may also include familial rituals as well as spiritual and religious beliefs, life goals for the child, and the meaning of illness within the broader context of the child and their family's life.
 * Developing a shared understanding of the child's condition with the patient and their family. The establishment of shared knowledge between medical providers, patients, and families is essential when determining palliative goals of care for pediatric patients. Initially, practitioners often elicit information from the patient and child to ascertain these parties' baseline understanding of the child's situation. Assessing for baseline knowledge allows the palliative care provider to identify knowledge gaps and provide education on those topics. Through this process, families can pursue informed, shared medical decision making regarding their child's care. A framework often employed by pediatric palliative care providers is 'ask, tell, ask' where the provider asks the patient and their family for a question to identify their level of comprehension of the situation, and then subsequently supplements the family's knowledge with additional expert knowledge. This information is often conveyed without jargon or euphemism to maintain trust and ensure understanding. Providers iteratively check for comprehension of this knowledge supplementation by asking questions related to previous explanations, as information retention can be challenging when undergoing a stressful experience.
 * Establishing meaning and dignity regarding the child's illness. As part of developing a shared understanding of a child's illness and character, palliative providers will assess both the child and their family's symbolic and emotional relationship to disease. As both the somatic and psychologic implications of illness can be distressing to children, palliative care practitioners look for opportunities to establish meaning and dignity regarding the child's illness by contextualizing disease within a broader framework of the child's life. Derived from the fields of dignity therapy and meaning-centered psychotherapy, the palliative care provider may explore the following questions with the sick child and their family:
 * What gives your life meaning, worth, or purpose?
 * Where do you find strength and support?
 * What inspires you?
 * How do you like to be thought of?
 * What are you most proud of?
 * What are the particular things you would like your family to know or remember about you?
 * When was the last time you laughed really hard?
 * Are you frightened by all of this? What, in particular, are you most frightened of?
 * What is the meaning of this (illness) experience for you? Do you ever think about why this happened to you?
 * Assessing preferences for decision making. Medical decision making in a pediatric setting is unique in that it is often the child's legal guardians, not the patient, who ultimately consent for most medical treatments. Yet within a palliative care setting, it is particularly essential to incorporate the child's preferences within the ultimate goals of care. Equally important to consider, families may vary in the level of responsibility they want in this decision making process. Their preference may range from wanting to be the child's sole decision makers, to partnering with the medical team in a shared decision making model, to advocating for full deferral of decision-making responsibility to the clinician. Palliative care providers clarify a family's preferences and support needs for medical decision making by providing context, information, and options for treatment and medical palliation.
 * Optimizing the environment for effective conversations around prognosis and goals of care. Essential to facilitating supportive, clear communication around potentially distressing topics such as prognosis and goals of care for seriously ill pediatric patients is optimizing the setting where this communication will take place and developing informed consensus among the child's caregiving team regarding goals and options for care. Often, these conversations occur within the context of family meetings, which are formal meetings between families and the child's multidisciplinary medical team. Prior to the family meeting, providers often meet to discuss the child's overall case, reasonably expected prognosis, and options for care, in addition to clarifying specific roles each provider will take on during the family meeting. During this meeting, the multidisciplinary medical team may also discuss any legal or ethical considerations related to the case. Palliative care provider often facilitates this meeting and helps synthesize its outcome for children and their families. Experts in optimized communication, palliative care providers may opt to hold the family meeting in a quiet space where the providers and family can sit and address concerns during a time when all parties are not constrained. Additionally, parents' preferences regarding information exchange with the sick child present should be clarified. If the child's guardians are resistant to disclosing information in front of their child, the child's provider may explore parental concerns on the topic. When excluded from family meetings and moments of challenging information exchange, adolescents, in particular, may have challenges with trusting their medical providers if they feel critical information is being withheld. It is important to follow the child's lead when deciding whether to disclose difficult information. Additionally, including them in these conversations can help the chid fully participate in their care and medical decision making.   Finally, it is important to prioritize the family's agenda while additionally considering any urgent medical decisions needed to advance the child's care.
 * Supporting emotional distress. A significant role of the pediatric palliative care provider is to help support children, their families, and their caregiving teams through the emotional stress of illness. Communication strategies the palliative care provider may employ in this role are asking for permission when engaging with potentially distressing conversations, naming emotions witnessed to create opportunities to discuss complex emotional responses to illness, actively listening, and allowing for invitational silence. The palliative care provider may iteratively assess the child and family's emotional responses and needs during challenging conversations. At times, the medical team may be hesitant to discuss a child's prognosis out of fear of increasing distress. This sentiment is not supported by the literature; among adults, end of life discussions are not associated with increased rates of anxiety or depression. Though this topic is not well studied in pediatric populations, evidence suggests conversations about prognosis have the potential to increase in parental hope and peace of mind.
 * When was the last time you laughed really hard?
 * Are you frightened by all of this? What, in particular, are you most frightened of?
 * What is the meaning of this (illness) experience for you? Do you ever think about why this happened to you?
 * Assessing preferences for decision making. Medical decision making in a pediatric setting is unique in that it is often the child's legal guardians, not the patient, who ultimately consent for most medical treatments. Yet within a palliative care setting, it is particularly essential to incorporate the child's preferences within the ultimate goals of care. Equally important to consider, families may vary in the level of responsibility they want in this decision making process. Their preference may range from wanting to be the child's sole decision makers, to partnering with the medical team in a shared decision making model, to advocating for full deferral of decision-making responsibility to the clinician. Palliative care providers clarify a family's preferences and support needs for medical decision making by providing context, information, and options for treatment and medical palliation.
 * Optimizing the environment for effective conversations around prognosis and goals of care. Essential to facilitating supportive, clear communication around potentially distressing topics such as prognosis and goals of care for seriously ill pediatric patients is optimizing the setting where this communication will take place and developing informed consensus among the child's caregiving team regarding goals and options for care. Often, these conversations occur within the context of family meetings, which are formal meetings between families and the child's multidisciplinary medical team. Prior to the family meeting, providers often meet to discuss the child's overall case, reasonably expected prognosis, and options for care, in addition to clarifying specific roles each provider will take on during the family meeting. During this meeting, the multidisciplinary medical team may also discuss any legal or ethical considerations related to the case. Palliative care provider often facilitates this meeting and helps synthesize its outcome for children and their families. Experts in optimized communication, palliative care providers may opt to hold the family meeting in a quiet space where the providers and family can sit and address concerns during a time when all parties are not constrained. Additionally, parents' preferences regarding information exchange with the sick child present should be clarified. If the child's guardians are resistant to disclosing information in front of their child, the child's provider may explore parental concerns on the topic. When excluded from family meetings and moments of challenging information exchange, adolescents, in particular, may have challenges with trusting their medical providers if they feel critical information is being withheld. It is important to follow the child's lead when deciding whether to disclose difficult information. Additionally, including them in these conversations can help the chid fully participate in their care and medical decision making.   Finally, it is important to prioritize the family's agenda while additionally considering any urgent medical decisions needed to advance the child's care.
 * Supporting emotional distress. A significant role of the pediatric palliative care provider is to help support children, their families, and their caregiving teams through the emotional stress of illness. Communication strategies the palliative care provider may employ in this role are asking for permission when engaging with potentially distressing conversations, naming emotions witnessed to create opportunities to discuss complex emotional responses to illness, actively listening, and allowing for invitational silence. The palliative care provider may iteratively assess the child and family's emotional responses and needs during challenging conversations. At times, the medical team may be hesitant to discuss a child's prognosis out of fear of increasing distress. This sentiment is not supported by the literature; among adults, end of life discussions are not associated with increased rates of anxiety or depression. Though this topic is not well studied in pediatric populations, evidence suggests conversations about prognosis have the potential to increase in parental hope and peace of mind.

Scope[edit]
Palliative care (derived from the Latin root palliare, or “to cloak”) refers to an interdisciplinary medical caregiving approach aimed at optimizing quality of life as well as anticipating, treating, and mitigating suffering among people with serious, complex illness. The overarching goals of palliative care are to provide relief from suffering, mitigate pain and other distressing symptoms, facilitate psychological and spiritual care, and establish a support system that optimizes quality of life for individuals and their families. Historically, palliative care services were geared toward supporting individuals with incurable cancer but this framework of medical therapy is now applied to the symptomatic treatment of conditions across the disease spectrum (such as severe heart failure, chronic obstructive pulmonary disease, various neurodegenerative conditions including multiple sclerosis, dementia, immunodeficiency syndromes, etc) to patients of all ages. Palliative care is not restricted to people receiving end-of-life care and can be provided concurrently with cure-oriented therapies.

Palliative care can be initiated in a variety of care settings including emergency rooms, hospitals, hospice facilities, or at home. For some severe disease processes, medical specialty professional organizations recommend initiating palliative care at the time of diagnosis or disease-directed options would not improve a patient's trajectory. For example, the American Society of Clinical Oncology recommends that patients with advanced cancer should be "referred to interdisciplinary palliative care teams that provide inpatient and outpatient care early in the course of disease, alongside active treatment of their cancer" within eight weeks of diagnosis.

Appropriately engaging palliative care providers within patient's medical caregiving teams has been demonstrated to improve overall symptom control, quality of life, and family satisfaction of care as well as reduce overall healthcare cost.

Comfort care in hospitals
Comfort care in hospitals differs from comfort care in hospices because patients’ end-of-life symptoms are poorly controlled prior to checking in. The average time between the admission of a terminally ill patient and death is 7.9 days. Patients receiving end of life care in a hospice setting typically have a longer time between their admission and death; 60% of hospice patients passed within approximately 30 days of being admitted. The average length of stay at a hospice house from admission to death is about 48 hours.

Although many individuals die at home or in a care facility, the number of deaths that occurred in a hospital setting increased from 2010 to 2016. In 2010 29% of all deaths in the United States occurred in a hospital setting, but this statistic increased in 2016 to about 60%. Comfort care can require meticulous techniques to alleviate distress caused by severe health troubles near the end of life. Doctors, nurses, nurses aides, social workers, chaplains, and other hospital support staff work systematically together to carry out end of life care and comfort in the hospital setting. Hospitals are able to accommodate the demand for acute medical attention as well as education and supportive therapies for the families of their loved ones. Within hospital settings, there is an increasing shortage of board-certified palliative care specialists. This shortage results in the responsibility of comfort care falling on the shoulders of other individuals.

Epidemiology:

- "20-fold difference in childhood mortality of those under 5 years of age between low-income and high-income countries; inequity in population data collection and access to palliative services remains a barrier to life-limited children dying well".

- US based pop study pub in 2001 demonstrated 21% of 1.75 million deaths of people <24yrs, 21% were due to complex chronic conditions. Study in Florida among pedi specialists found that less than 50% had ever made a palliative care referral for their patients, and many had only made referrals once curative treatment was no longer an option.

"Zhukovsky and colleagues reported that palliative care consultation resulted in increased detection of symptoms and treatment recommendations, and highlighted communication needs between primary pediatric team and their palliative care patients and carers".

Assessing and managing symptoms in children with serious illness
As with palliative care for adults, symptoms assessment and management is a critical component of pediatric palliative care as it improves quality of life, gives children and families a sense of control, and in some cases prolongs life. The general approach to assessment and management of distressing symptoms in children by a palliative care team is as follows:


 * Identify and assess symptoms through history taking (focusing on location, quality, time course, as well as exacerbating and mitigating stimuli). Symptoms assessment in children is uniquely challenging due to communication barriers depending on the child’s ability to identify and communicate about symptoms. Thus, both the child and caregivers should provide the clinical history. With this said, children as young as four years of age can indicate the location and severity of pain through visual mapping techniques and metaphors.
 * Perform a thorough exam of the child. Special attention to the child's behavioral response to exam components, particularly in regards to potentially painful stimuli. A commonly held myth is that premature and neonatal infants do not experience pain due to their immature pain pathways, but research demonstrates pain perception in these age groups is equal or greater than that of adults. With this said, some children experiencing intolerable pain present with 'psychomotor inertia,' a phenomenon where a child in severe chronic pain presents overly well behaved or depressed. These patients demonstrate behavioral responses consistent with pain relief when titrated with morphine. Finally, because children behaviorally respond to pain atypically, a playing or sleeping child should not be assumed to be without pain.
 * Identify the place of treatment (tertiary versus local hospital, intensive care unit, home, hospice, etc.).
 * Anticipate symptoms based on the typical disease course of the hypothesized diagnosis.
 * Present treatment options to the family proactively, based on care options and resources available in each of the aforementioned care settings. Ensuing management should anticipate transitions of palliative care settings to afford seamless continuity of service provision across health, education, and social care settings.
 * Consider both pharmacologic and non-pharmacologic treatment modalities (education and mental health support, administration of hot and cold packs, massage, play therapy, distraction therapy, hypnotherapy, physical therapy, occupational therapy, and complementary therapies) when addressing distressing symptoms
 * Assess how the child perceives their symptoms (based on personal views) to create individualized care plans.
 * After the implementation of therapeutic interventions, involve both the child and family in the reassessment of symptoms.

The most common symptoms in children with severe chronic disease appropriate for palliative care consultation are weakness, fatigue, pain, poor appetite, weight loss, agitation, lack of mobility, dyspnoea, nausea and vomiting, constipation, sadness or depression, drowsiness, difficulty with speech, headache, excess secretions, anemia, pressure area problems, anxiety, fever, and mouth sores. The most common end of life symptoms in children include shortness of breath, cough, fatigue, pain, nausea and vomiting, agitation and anxiety, poor concentration, skin lesions, swelling of the extremities, seizures, poor appetite, difficulty with feeding, and diarrhea. In older children with neurologic and neuromuscular manifestations of disease, there is a high burden of anxiety and depression that correlates with disease progression, increasing disability, and greater dependence on carers. From the caregiver's perspective, families find changes in behavior, reported pain, lack of appetite, changes in appearance, talking to God or angels, breathing changes, weakness, and fatigue to be most the most distressing symptoms to witness in their loved ones.

As discussed above, within the field of adult palliative medicine, validated symptoms assessment tools are frequently utilized by providers, but these tools lack essential aspects of children's symptom experience. Within pediatrics, there is not a comprehensive symptoms assessment widely employed. A few symptoms assessment tools trialed among older children receiving palliative care include the Symptom Distress Scale, and the Memorial Symptom Assessment Scale , and Childhood Cancer Stressors Inventor. Quality of life considerations within pediatrics are unique and an important component of symptoms assessment. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32) is a standardized parent-proxy report which assesses cancer treatment-related symptoms (focusing mainly on pain and nausea). But again, this tool does not comprehensively assess all palliative are symptoms issues. Symptom assessment tools for younger age groups are rarely utilized as they have limited value, especially for infants and young children who are not at a developmental stage where they can articulate symptoms.

Perinatal palliative care
Care in the final hours and days (page 368).

Integrative medicine (page 378)

healthcare providers' responses to the death of a child (410)

UK[edit]
There are an estimated 49,000 children and young people in the UK living with a life-threatening or life-limiting condition that may require palliative care services. A 2015 survey from the Royal College of Nursing (RCN) found that nearly a third of children's nurses said they don't have the resources to deliver adequate care in the home setting.

Australia and New Zealand[edit]
The Paediatric Palliative Care Australia and New Zealand Corporation (PPCANZ) in conjunction with Palliative Care Australia supports a 'Paediatric Palliative Care' website which provides practical information about paediatric palliative care to families who have a child with a life-limiting illness, as well as information about the people who support them. There is however very little empirical research regarding the support provided to children in palliative care. To help address the lack of research, the Palliative Care Unit at La Trobe University, Melbourne, Australia, is currently conducting an international modified delphi study to provide 'Recommendations for Speech-Language Pathologist (SLPs) in Paediatric Palliative Care Teams' (abbrev. RESP3CT). This study will conclude in 2020/2021 and hopefully provide greater information with regard to the collaborative role of SLPs assisting children, families and clinical staff regarding appropriate and multidisciplinary palliative care.

History of Palliative Care in the United States
The field of palliative care grew out the hospice movement and commonly associated with Dame Cicely Saunders, who founded St. Christopher's Hospice for the terminally ill in 1967, and Elisabeth Kübler-Ross who in 1969 published her seminal work "On Death and Dying" which describes a five-stage model of how individuals respond to awareness of impeding death argues for focused attention and response to the needs of the dying (for a full history of the hospice movement see the hospice page). In 1973, Balfour Mount, a urologist familiar with Drs. Saunders and Kübler-Ross's work, coined the term "palliative care" and created the first palliative care ward at the Royal-Victoria Hospital in Montreal. In 1987, Declan Walsh established a palliative medicine service at the Cleveland Clinic Cancer Center in Ohio which later expanded to become the training site of the first palliative care clinical and research fellowship as well as the first acute pain and palliative care inpatient unit in the United States. The program evolved into The Harry R. Horvitz Center for Palliative Medicine which was designated as a World Health Organization international demonstration project and accredited by the European Society for Medical Oncology as an Integrated Center of Oncology and Palliative Care.

Advances in palliative care have since inspired a dramatic increase in hospital-based palliative care programs. Notable research outcomes forwarding the implementation of palliative care programs include:


 * Evidence that hospital palliative care consult teams are associated with significant hospital and overall health system cost savings.
 * Evidence that palliative care services increase the likelihood of dying at home and reduces symptom burden without impacting on caregiver grief among the vast majority of Americans who prefer to die at home.
 * Evidence that providing palliative care in tandem with standard oncologic care among patients with advance cancer is associated with lower rates of depression, increased quality of life and increased length of survival compared to those those receiving standard oncologic care.

Over ninety percent of United States-based hospitals with more than 300 beds now have palliative cares teams. Yet there remains great geographic disparities in access to this service as only 17% of rural hospitals with fifty or more beds report having palliative care teams. Palliative medicine has been a board certified sub-specialty of medicine in the United States since 2006. Additionally, in 2011, The Joint Commission began an Advanced Certification Program for Palliative Care that recognizes hospital inpatient programs demonstrating outstanding care and enhancement of the quality of life for people with serious illness.