In: Pain: International Research in Pain Management Editors: J. Merrick, P. Schofield and M. Morad

ISBN: 978-1-62948-423-5 © 2014 Nova Science Publishers, Inc.

Chapter 12

Integrative pain medicine and palliative care at a children's hospital Stefan J Friedrichsdorf, MD*, Christine Gibbon, PhD, Barb Symalla, RN, CNS, Stacy Remke, LICSW and Jody Chrastak, RN

Department of Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Minneapolis, Minnesota, US State of the art management of pain and distressing symptoms in children in the 21st century requires the integration of pharmacology, medical interventions, and rehabilitation with integrative, non-pharmacological and supportive therapies. This article describes the care modules of the Pediatric Pain and Palliative Care Program at the Children’s  Hospitals  and  Clinics  of  Minnesota,  USA. This pediatric service provides an acute pain service, an interdisciplinary chronic pain clinic, and holistic, interdisciplinary care for children and teens with life-limiting or terminal diseases and their families. One of the advantages of an integrated Pain and Palliative Care Program such as this one is the provision of care within a continuum from acute, chronic/complex pain to palliative care and hospice care. Integrated pediatric pain and palliative care services are still rare in children’s  hospitals  worldwide. This example shows that integrated pediatric pain medicine and  palliative  care  programs  can  be  successfully  implemented  in  a  children’s   hospital setting.

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Correspondence: Stefan J Friedrichsdorf, MD, Medical Director, Department of Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, 2525 Chicago Avenue South, Minneapolis, MN 55404 United States. E-mail: [email protected].

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Introduction State-of-the-art management of pain and distressing symptoms for children in the 21st century requires the combination of pharmacological approaches with rehabilitative, supportive, and integrative therapies. This article describes the Pain and Palliative  Program  at  the  Children’s   Hospitals and Clinics of Minnesota in Minneapolis/St. Paul, a clinical program providing care for children in acute and chronic pain as well as for children with life-threatening and lifelimiting diseases and their families. A review of pediatric pain and palliative care is followed by  a  description  of  the  program’s  components  and  its  integration into the day-to-day activity of a large children’s  hospital  (some  of  which  was  described  previously)  (1)  and  the  utilization   of integrative therapies in this setting.

Pain management Acute pain Pain caused by tissue injury, inflammation or infection is typically brief and usually ends when the tissue has healed. In the clinical setting, the team addressing pain must provide prompt and effective management of acute pain. Analgesic relief commonly requires the use of non-opioids (including acetaminophen/paracetamol and ibuprofen), weak/mixed opioids (tramadol), and strong opioids (e.g., morphine, fentanyl, hydromorphone, oxycodone, methadone) by various routes of administration. Opioids may be administered by the following routes: oral, sublingual, buccal, intranasal, transdermal, intravenous, subcutaneous, rectal, epidural, and intrathecal. Analgesics are never administered via intramuscular route, as this causes unnecessary pain. Often in management of pain, the use of adjuvant analgesia may be appropriate, such as anticonvulsants/gabapentinoids, tricyclic antidepressants, benzodiazepines, N-methyl-D-aspertate receptor [NMDA] antagonists, bisphosphonates, antispasmodics, low-dose general anesthetics, and anesthetic or neurosurgical options may also be required (2). Importantly, state-of-the-art pain and symptom management requires combining pharmacological approaches with rehabilitative, supportive, and integrative therapies (e.g., massage, music, imagery, diaphragmatic breathing, hypnosis, biofeedback, aromatherapy). Such integrative modalities will effectively stimulate efferent inhibiting pathways descending from a brain structure called periaqueductal grey, decrease nociception, and provide effective self-coping skills to the child and his or her family.

Chronic/complex pain Defining chronic/complex pain in pediatrics proves to be difficult. The 3-month definition used in adult medicine („Pain  lasting  longer  than  3  months  is  chronic”)  seems  arbitrary  in  the   pediatric world as children often have a fluid combination of chronic, complex and/or recurrent pain. The underlying pathology of chronic/complex pain may be an ongoing course (e.g., arthritis, muscle spasms, nerve damage, chronic infection) or discrete course (e.g., no chronic disease). Chronic/complex pain may persist after the damaged tissue from an initial

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injury has physically healed. At least 6-8% of school children seem to suffer from chronic pain, (3-5) and some research presents the rates significantly higher than that (6). Common diagnoses at our pain clinic include: musculoskeletal pain (including “juvenile   fibromyalgia”),  tension headaches / migraines, functional abdominal pain, Complex Regional Pain  Syndrome  (CRPS,  formerly  “RSD”),  conversion  disorders, cerebral palsy / spasticity, neurodegenerative / metabolic conditions, muscular dystrophy, cancer related pain, posttraumatic / phantom pain, and avascular necrosis.

Procedural pain Possibly the greatest fear for children coming  to  a  children’s  hospital  is  the  fear  of  pain that may be caused by providers performing medical procedures or interventions (e.g., intravenous cannulation, stitches, lumbar punctures, chest tubes insertion, etc.), which are often necessary in the diagnosis and treatment of diseases in infants, children and teens. Fear and anxiety about the pain associated with those procedures may cause a considerable amount of distress for pediatric patients and their families. Evidence showed that parents’  greatest  distress was associated with a feeling that they have failed to protect their child from pain (7, 8). Data also shows that the memory of previous painful experiences has great influence on how children experience pain during subsequent procedures, and that inadequate analgesia for initial procedures in young children diminishes the effect of what would normally be considered adequate analgesia in subsequent procedures (9, 10). For example, a critically ill infant may experience more than 480 painful procedures during a single neonatal intensive care unit (NICU) stay (11, 12). It is welldocumented that exposure to severe pain in the NICU accompanied by inadequate management of pain results in severe negative consequences, that is, increased morbidity and mortality (13).  Infants  clearly  do  not  “forget”  pain;;  pain  ratings  at  4-6 months at routine vaccination were higher for circumcised versus uncircumcised boys (14).

Pediatric palliative care Only a few generations ago it was not uncommon for infants and children to die during their first years of life. Now, at the beginning of the 21st century a  child’s  death  has  become  a  rare   incident in the developed world and children are living longer with complex medical needs. The medical system frequently fails to provide comprehensive, state of the art palliative care to those children likely to die before reaching adulthood. Pediatric Palliative Care (PPC) provides solace for infants, children and teenagers suffering from a life-threatening or a lifelimiting condition regardless of whether curative treatments succeed or fail, many of which continue for years. According  to  the  Association  for  Children’s  Palliative  Care  (ACT)  and  the   British  Royal  College  of  Pediatrics  and  Child  Health  (15),  PPC  is  “…an  active  and  total   approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes management of distressing symptoms, provision of respite and care through [disease], death and  bereavement.”  In the words of Mattie Stepanek, an ill child who lived from 1990-2007:

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"Palliative care no longer means helping children die well, it means helping children and their families to live well, and then, when the time is certain,  to  help  them  die  gently.”

Comprehensive palliative care is the expected standard of care for patients with advanced illness (16, 17), however, access to and availability of palliative care expertise for the majority of children with life-threatening conditions is still lacking compared to adult services. In the United States and in most other countries worldwide, the vast majority of infants, children, and teenagers with advanced illnesses who are near the end of life do not have access to interdisciplinary pediatric palliative care (PPC) services either in their community or  at  the  nearest  children’s  hospital.  

Life-limiting conditions The ACT document (15) referred to above also identifies four pediatric groups of life-limiting conditions (LLC): 

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Group 1: Life-threatening conditions for which curative treatment may be feasible but can fail. Palliative care may be necessary during periods of prognostic uncertainty and when treatment fails (e.g., cancer, irreversible organ failures of heart or liver). Group 2: Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities, (e.g., cystic fibrosis, muscular dystrophy). Group 3: Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly  extend  over  many  years  (e.g.,  Batten’s   disease, mucopolysaccharidosis). Group 4: Conditions involving severe neurological disability that may cause weakness and susceptibility to health complications and may deteriorate unpredictably, but are not considered to be progressive (e.g., severe cerebral palsy).

Epidemiology The prevalence of a LLC in the age group 0-19 in the United Kingdom is 12/10,000, and 1.51.9/10,000 children die each year from such diseases (15). In 2008, there were an estimated 73.9 million children under the age of 18 in the USA. Applying the British data, this would correspond to more than 88,700 children currently living with a LLC, and between 11,00014,000 children who die of a LLC each year in the USA. As Feudtner et al. (18) reported, in the US an average of more than 8,900 infants and children (0-9 years of age) died of complex chronic conditions each year between 1999-2003. Including adolescents and young adults (10-24 years of age), an average of more than 11,700 each year died to cancer (21.4%) and non-cancer (78.6%) complex chronic conditions.

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Symptoms at the end-of-life of children Five studies looking at prevalence of symptoms in 473 children with malignant and nonmalignant diseases reveal that the majority of dying children experience pain, vomiting and dyspnea (see table 1). In two retrospective studies conducted by Wolfe et al. (19,20) of bereaved parents of 221 pediatric cancer patients, the majority of distressing symptoms (pain, dyspnea and nausea/vomiting) were not treated, and when treated, therapy was commonly ineffective. A dying child is often highly symptomatic, and providing symptom relief is one of the most compelling imperatives of PPC. Importantly, Wolfe et al. (21) also found that earlier recognition by both physicians and parents that the child had no realistic chance of cure led to a stronger emphasis on treatment to lessen suffering and integrate PPC in pediatric cancer patients. Consequently, proponents in the field urge that PPC be provided as an option early on—ideally at the point of diagnosis or early in treatment. Many children are now living longer with complex conditions. The need for ongoing care, support, pain, and symptom management increases over longer periods of time. Table 1. Symptom prevalence of children with malignant and on-malignant life-limiting conditions during their end-of-life period

Pain Fatigue Vomiting Dyspnea Constipation

Dangel, 2001 (Poland) n = 160 134 86 101 80 94

Drake, 2003 Goldman, (Australia) 2000 n = 30 (UK) n = 152 16 140 21 79 12 87 12 62 8 58

Hongo, 2003 (Japan) n = 28 21 20 16 23 13

Wolfe, 2000 (USA) n = 103 84 100 58 84 51

Total Prevalence in n = 473 % 395 297 274 261 224

84 63 58 55 47

Myths Persistent myths and misconceptions have led to inadequate symptom control in children with a terminal disease. An enduring misconception is the belief that in the management of pain and dyspnea, opioids should only be administered as a last resort in order to avoid drug addiction or an opioid-induced hastening of death. These beliefs are contradicted in the adult literature (22) and our PPC team commonly observes that administering opioids and/or benzodiazepines, together with comfort care to relieve dyspnea and pain, not only prolongs life  but  also  improves  the  child’s  quality  of  life. Education about the use of opioids, and understanding that tolerance plus physical dependence does not equal addiction, is an important contribution of PPC. Despite prevailing myths, excellent pain and symptom management and curative treatments can be applied concurrently.

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Models of pediatric palliative care Current models of PPC vary profoundly in different parts of the world. Common service models include a) palliative home care and hospice programs, b) children’s  hospital-based inpatient and outpatient PPC service, c) stationary free-standing  children’s hospices or (d) any combination of the above. An editorial describes various U.S. models of PPC (23).

Palliative home and hospice care Most families prefer home for the end-of-life period and death of their child, if given the choice (24, 25). When planning the delivery of advanced PPC it is paramount to recognize that most children are at home much of the time and any model of PPC needs to acknowledge this finding and to facilitate in-the-home care per family wishes. There seems to be a high correlation between the availability of comprehensive home care and the number of children with life-limiting conditions dying at home (21, 26, 27). At Great Ormond Street Hospital for Children (London, UK) only 19 per cent of children with cancer died at home before the Symptom Care Team was established in 1987. Within two years of establishing the PPC team, more than 75 per cent of pediatric oncology patients chose to die at home.(24, 28) Another finding is that long-term psychosocial problems of bereaved parents and siblings seem to be reduced when they have been actively involved in caring for the dying child at home (29). Palliative home care services were  introduced  in  the  1980’s  and  1990’s  in  Costa   Rica, Poland, Ukraine, United Kingdom, USA and other countries.

Inpatient children’s  hospices Sister Francis Domenica founded in 1982 the first stationary free-standing children’s  hospice, “Helen  House,”  in  Oxford,  UK, which then prompted development of numerous care models for children with life-limiting and terminal conditions worldwide. Free-standing  Children’s  Hospices  with  inpatient  facilities  which  provide  respite  exist  in   Australia (three hospices), Canada (two), Costa Rica (one), Germany (seven), Netherlands (one), South Africa (one), UK (thirty-four) and USA (one). They typically have 6-12 beds, and among many other care domains they provide sibling care and respite, thereby enabling ill children and their families to  “recharge  their  batteries.”

Children’s  hospital  based  PPC  services Since the first designated children’s  hospitals  were  opened  in  the  early  19th  century,  it  was   and  is  common  that  staff  experience  pediatric  inpatients’  deaths. However, more than 200 years later, only a minority  of  US  children’s  hospitals  employs  trained  specialists in PPC. Data obtained at the National Forum for Pediatric Palliative Care in Minneapolis, MN (June 14-15,  2007)  by  the  Children’s  Institute  of  Pain  and Palliative Care (Pain and Palliative Care Program,  Children’s  Hospitals  and  Clinics  of  Minnesota)  revealed  that  there  are  currently  31  

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U.S.  Children’s  Hospitals  with  a  designated  PPC  service  providing  inpatient  and  outpatient care. With the growing demand for pain expertise, the number of combined pain and palliative care services is growing as well.

Pain and palliative care program in Minnesota Pain is likely to be the most feared symptom of a child and his or her family as an inpatient or in the midst of a life-limiting illness. As a result, any pediatric pain and/or palliative care program should aim to be outstanding in pediatric pain management, including pharmacological and non-pharmacological, integrative treatment modalities. In PPC, families are less likely to explore the important psycho-social-spiritual domains of death and dying if their child is suffering from pain or other distressing symptoms. All children are dependent upon the health and well-being of their families, and exploration of these domains is important  for  maintaining  the  family’s  resilience and functioning. The  Children’s  Hospital’s  of  Minnesota  model  incorporates  the  expertise of pain and palliative care into one program with comprehensive services available to children and families across  care  settings.  Over  several  years,  with  support  of  Children’s  administration,   the pain consultation team and the palliative care team have combined and have evolved from nurse lead programs to interdisciplinary (often trans-disciplinary) teams. A culturally sensitive psycho-social-spiritual needs assessment is part of a consultation model. As a significant number of patients identify with ethnically diverse groups (especially Hispanics, Hmong and Somali in Minnesota), interpreters are often part of the team. Any health-care professional or family member can make referrals to the program.

Hospital setting Children's Hospitals and Clinics of Minnesota is a not-for-profit, comprehensive health care provider serving the diverse needs of children from infancy through adolescence. With 383 staffed hospital beds, it is among the ten largest children's health care organization in the USA, with 4,300 employees providing services in all major pediatric specialties. There were 12,586 admissions, 19,557 surgical cases, 90,673 Emergency Room visits and 259,118 Clinic visits as well as 8,352 home care visits in 2012. There is a pediatric campus in each of the Twin Cities of Minneapolis and St. Paul. The metro area is comprised of about 3.2 million inhabitants.

Palliative and hospice care In 1977, in response to  a  family’s  request  to  take  their  dying  child  home,  Children’s  of   Minnesota’s  home  care  service  started  to  provide  home  based  hospice care. In 1993 the Hospice team was officially organized with a grant from the Cancer Kids Foundation. The annual number of families served was 20-30 throughout the 1990s. While the resources were

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building  at  that  time,  the  term  “hospice”  proved  a  barrier  for  many  families,  as  they  were   unwilling to forego curative therapies in many instances. In 1999 the team identified that children with life-limiting diseases who were continuing aggressive curative treatment would also benefit from a palliative care model.  The  “Karuna”   palliative care program began that year and provided the palliative care model, that is, providing aggressive symptom management and increased comfort to a pediatric population who may simultaneously continue curative treatment. In 2010, the hospice and Karuna team consists of pediatricians, nurses, social workers, chaplain, psychologist, child life specialist, and volunteers who provide home based care and coordinate  needs  with  the  child’s  primary   care team. The busy palliative home care and hospice service has an average daily census of about 80 children with life-limiting and terminal conditions, making this one of the largest programs in North America. The team provides care for inpatients and outpatients as well as those in the community through their disease course, death and bereavement. In addition to the extensive palliative care and hospice services,  Children’s  of  Minnesota  provides  a   perinatal hospice and a regional education, consultation and resource center, called the Children’s  Institute of Pain and Palliative Care (CIPPC).

Palliative  home  care:  “Karuna“ Karuna (in Sanskrit) means compassion. The multidisciplinary team provides home care 24 hours/day, 365 days/year in a 48-kilometer (30 miles) radius, covering the greater metro area of Minneapolis/St. Paul. This program is designed for those whose conditions can still benefit from aggressive treatments, but whose prognosis is serious or uncertain. The focus is to maximize the quality of life for the child and family by emphasizing symptom management, comfort and continuity of care along the disease trajectory. This program component grew  rapidly,  it’s  census  doubling  each  of  the  first  four  years.   Between 100- 150 families each year receive care from the team. The frequency of visits depend  on  the  child’s  condition  and  can  be  anywhere  between  twice  per  day  to  once  every few weeks. On average the children receive TWO nursing visits per week. Many families on this program continue to seek curative treatments, while simultaneously receiving the excellent pain and symptom management, care coordination and psychosocial support that Karuna  offers.  Some  children’s  diseases are cured (e.g., through chemotherapy, organ or bone-marrow transplant) and they graduate from the program, while the majority of children in this program experience disease progression, and die receiving care. Whether they choose “Karuna,”  “Palliative  Care”  or  “Hospice”,  the  services and team members remain the same, offering much needed continuity for the family and child. Palliative Care offers particularly rich opportunities for complementary and alternative medicine, or as we refer to them, Integrative Therapies. Children and their families who are coping with a life-threatening condition and uncertain future, also are often faced with many episodes of physical distress as a result of the disease or of medical therapies. The addition of integrative therapies, including cognitive behavioral techniques and relaxation skills training that have proven to be very helpful and comforting to the children and their families (30). At Children’s,  patients  and  their  families  are  encouraged  to  learn  a  variety of coping techniques in  order  to  develop  a  diverse  “bag  of  tricks”  to  assist  them  on  their  path.  With  

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recommendations from other families and resources from  Children’s  Integrative  Medicine   team, the program has been able to assist families in identifying integrative practitioners experienced in working with children. Also, members of the pain and palliative care program have developed skills in a number of modalities, including hypnosis, healing touch, and music therapy. Team members can then offer these interventions as a component of their home-based practice.

Hospice care The focus of the Hospice Program, which offers services identical to the Karuna program, is to help each child live as fully as possible even when death is expected. In the hospice program, the family is clear that their goal is comfort and they are not pursuing aggressive therapies. Holistic care is available for the dying child and their family through the interdisciplinary team. Support is also available for the broader community including extended family and the school community. In our experience with hospice care, integrative techniques like massage, aromatherapy, music therapy and hypnosis are integral to maintaining  or  improving  the  child’s  quality  of   life. These interventions can be especially meaningful when other therapies may be withdrawn in anticipation of death, and caregivers become concerned about active steps they can take to support and comfort their child. Creating access to these integrative modalities, or even learning how to provide them, often provides immeasurable comfort to families seeking intimacy and connection with their child during his or her final days.

Perinatal hospice care:  “Deeya” Deeya  (in  Sanskrit)  means  “little  light.”  With  modern  technology  it is often possible to know before birth that a child may not live long. Deeya provides support for families who choose to continue a pregnancy after they learned that their child has potentially fatal anomalies. The program offers support during pregnancy, at the time of the birth and follows up after delivery. Transition to hospice or palliative care is available for those children who survive birth. Deeya works with the major high-risk perinatal centers in the metro area, and referrals are made by geneticists, neonatologists and families.

Inpatient palliative care team The inpatient pain and palliative care team consists of three full-time attending pediatricians, two advanced practice nurses, a registered nurse and a social worker. Daily rounds address both acute and chronic pain issues, as well as other distressing symptoms, such as dyspnea, nausea and vomiting, and fatigue. The team identifies children with current palliative care needs and collaborates with primary physicians to address these needs in both the inpatient and outpatient setting.

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The Inpatient PPC team works closely with the Integrative Medicine Program (the largest program of its kind in North America), which is part of our department, to identify and offer integrative therapies to those children and their families who might benefit. When a child is coping with a life-threatening illness, their resilience, as well as that of their family members, is challenged by chronic stress and the demands of managing treatment plus family routines. Integrative methods can shore up energies, assist with rest, enhance comfort, and invoke the body’s  healing responses in ways that support long term coping.

Grief and bereavement support Grief can have lasting effects on the family and their community. The team offers comprehensive support and resources for coping with grief. Members of the palliative care team provide home visits and supportive counseling after the death of a child. Written information on grief, loss, and suggestions for supporting coping are provided at that time. All families are invited to participate in support groups through the Healing Quilt Bereavement  Support  program  of  Children’s  of  Minnesota.  Groups  for  children, teens, and parents are offered. Follow up may also include school visits and support to school programs. Integrative techniques that reinforce personal coping, replenish emotional energies, or offer comfort seem to be helpful in the bereavement phase in our experience. Massage, selfhypnosis, acupuncture, and aromatherapy may be particularly helpful for adults and children alike as they recover from the loss of a loved one. Simple, portable techniques can be taught at any phase of grief, and help to encourage healing.

Acute pain team In  the  early  1990’s,  the  advanced  practice  registered  nurses (APRN’s)  at  Children’s  of   Minnesota conducted a quality assurance study of post-operative pain management in an effort to address concerns about pain management in the neonatal and pediatric inpatient population. The audit demonstrated significant opportunities for improvement. The results were shared across the organization and goals were set with leadership support. A task force was formed to achieve the following: increase staff knowledge about pain, standardize pain assessment across the organization, develop patient education materials, and improve multidisciplinary communication about pain. This task force recommended the development of a pain consultation team to assist with complex pain management. The Acute Pain Team, which includes APRNs and physicians rounding daily, collaborates with the attending service, subspecialists and nurses, as well as the patient and family to develop a comprehensive pain management plan. The team makes recommendations for pharmacologic and integrative, non-pharmacologic strategies to address issues of pain, side effects, and anxiety and agitation. The team works closely with the Children’s  Integrative  Medicine  team  to  incorporate  such  strategies  as  massage  therapy, mental imagery, relaxation, breathing techniques, aromatherapy, and other mind-body skills training. The team works closely with child life specialists to provide procedural preparation and incorporate developmentally appropriate activities. The team also collaborates with

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psychosocial staff (e.g., social work and psychology) to address any underlying mental health or family systems issues, which may be influencing the  patient’s  experience  of  pain.   The service has steadily grown and now includes consultations for multiple patient populations, including patients with significant opioid tolerance and infants and children with the emergence of opioid and benzodiazepine withdrawal symptoms. The Acute Pain Team sees more than 1,000 inpatients per year and is designed as a consultation service for inpatient neonates to young adults. In response to the work of the Acute Pain Team, the hospital has established a policy that provides that each child in unrelieved pain can be seen by the pain team, even without a formal consult. The team rounds on inpatients daily. Anyone can refer to the team: providers, nurses, or family members. As a result, if the acute pain team identifies that a child is in unrelieved pain, it will work with staff and/or contact the primary care provider and evaluate how optimal pain management can best be achieved. The Pain Team also increases the overall competence of the institution and its patients by mentoring staff about pain assessment and management, discussing referrals for the outpatient pain clinic, and educating patients and families about pain management. Additionally, the inpatient team collaborates with palliative care staff to effectively transition patients between the home and hospital settings, and makes referrals to the interdisciplinary outpatient pain clinic.

Interdisciplinary pain clinic The outpatient pain clinic was established in 2006 and provides comprehensive evaluation and treatment follow-up for children and their families. The interdisciplinary team consists of a clinic nurse coordinator, social worker/family therapist, physical therapist, pediatric psychologist and pediatrician/pain specialist. Research has established relationships between chronic pain and psychological distress, and parental distress with  their  child’s  pain  (31-34). Models of treatment of chronic pain in children commonly include patient education, cognitive-behavioral intervention, and goals for improvement in functional status (35). The behavioral philosophy of our chronic pain clinic is centered around the goals of providing parents and children with developmentally appropriate limits, autonomy, and normal expectations. Many children with chronic pain have decreased function in areas of household responsibilities, activities of daily living, school attendance and performance, and peer relationships. Parents of children in pain loosen expectations of their children, fostering a sense of disability that is often unfounded in the extent of underlying biological disease or physical damage. Therefore, one of the primary goals of the clinical team is to reinstitute a level  of  normalcy  in  the  child’s  and  family’s  life,  to  whatever  extent  is  possible  considering   the medical issues. Within our treatment program, we see that as a child develops ageappropriate autonomy while adhering to appropriate parental limits, then child is able to become  more  “in  charge”  of  his  or  her  pain.   Referrals to our interdisciplinary pain clinic usually come from general pediatrics, rheumatology, oncology, hematology, neurology, gastroenterology, and orthopedics. Common clinical presentations include diagnoses of tension headaches and migraines, abdominal pain, complex regional pain syndrome, and chronic musculoskeletal pain. Some

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patients also present with symptoms consistent with diagnoses of posttraumatic stress disorder, conversion disorder, orthostatic dysregulation, and chronic fatigue syndrome. Families provide basic information to the clinic via mail and phone conversations and then are scheduled for an initial team evaluation. During the evaluation, the family meets with the entire team for the initial interview in the same room at the same time. By including the whole team on the initial interview, the family does not have to repeat the pain narrative more than once, and the team is able to collaborate on a shared observation of and experience with the  family.  Important  factors  like  the  family’s  beliefs,  behavioral  patterns,  and  responses  to   pain provide insights as the team plans treatment recommendations. Taking an ecological perspective on chronic pain, the team aims to include opportunities to intervene on the personal, family, school, and social/community levels, and these interventions can be implemented by any member of the team. Following the initial interview, the pediatrician and the physical therapist examine the patient and evaluate function and strength. All past evaluations and treatments are reviewed to provide a comprehensive medical picture and to rule out other disease processes. Additional labs or scans are performed depending on what has been ruled out in the past. Following the medical evaluation, the patient then meets alone with the pediatric psychologist, while the family meets with the social worker/family therapist. The team then convenes while the family takes a break. During the team conference, each discipline provides an impression and initial recommendations for the treatment plan. Each team member has the opportunity to pose questions, share insights, and develop a collaborative, biopsychosocial model of functioning. Additionally, it allows the team members to come to a consensus on roles for intervention and the integration of these roles for a successful treatment outcome. When the family returns from their break, the pediatrician and the nurse coordinator provide clinical feedback and extensive pain education to the family. This is an important opportunity for implementing change in how the patient and parents conceptualize chronic pain and recovery. First, the child and family are told that we providers believe in the pain. Second, they are told that we believe the pain can improve. The pain condition is explained at an age-appropriate level to the child and to the family, using numerous examples to make the explanation concrete and understandable. Most patients are recommended follow up with the team for medication management, physical therapy, psychotherapy, and family therapy and education with the social worker. A strong emphasis is placed on the goal of returning to normal function, and the use of non-pharmacologic strategies. The non-pharmacologic strategies (36) provide the opportunity to stimulate the descending inhibiting pathway, which is explained to the family, and they also provide the child with much needed access to the beginnings of autonomy and control over the physical experience of pain. Training and participation in biofeedback, relaxation, self-hypnosis, acupressure/acupuncture, aromatherapy, and therapeutic massage are accessible from pain clinic providers as well as from providers in the Pediatric Integrative Medicine program. This program works in collaboration with the pain clinic to provide all of the needed services. During the treatment, patients participate in physical therapy, including a home program, psychotherapy, family therapy and education, and medical monitoring of pain. Mood, stress management and underlying psychiatric diagnoses are addressed with the patient in individual psychotherapy, where patients also learn relaxation and self-regulation strategies including self-hypnosis. Parental responses to pain and the family system patterns of behavior are

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addressed in the context of family sessions with the social worker and sometimes conjointly with the psychologist. At the conclusion of treatment, when pain and function have improved, patients  “graduate”  with  a  certificate.  The  team  emphasizes  the  child’s  and  parents’  role  in   actively making the pain better, and they participate in a feedback process to review components of the treatment plan.

Education and outreach In  2003,  Children’s  Hospitals  of  MN  volunteered  to  take  on  the  project of developing a centralized pediatric resource center for the state of Minnesota in conjunction with its hospice and palliative care programs. The National Hospice and Palliative Care Organization (NHPCO) identified a potential funding source in the form of monies earmarked for professional education, and encouraged the state of Minnesota to apply for these funds to develop a regional model for training,  education,  and  resource  development,  Children’s  of   MN was successful in securing this funding  and  Children’s  Institute  for  Pain  and  Palliative   Care (CIPPC) was founded. Over the next three years, CIPPC was able to offer training, consultation, and technical assistance to providers in the five state upper Midwest region that includes Minnesota, Iowa, North-Dakota, South-Dakota and Wisconsin, a region about the size of combined Germany and France. A series of comprehensive training workshops, followed up with provider access to a 24/7 telephone consultation service was offered. It was recognized that children receiving specialty care in regional centers also need skilled providers in their own communities. These trained practitioners have become a network of such local resources. To date, CIPPC has trained over 750 providers in the region. The program has also hosted practicum visitors to from other areas, covering many US states from the Pacific to the Atlantic coast and from overseas. Interest from these other regions reflects the lack of comprehensive training in the field, and the need to develop more educational options for providers so that children can receive skilled appropriate care in their home communities. CIPPC plans to continue to offer education, training, consultation, and technical support to providers so that more children can receive pain management and palliative care in a continuum of care from home to hospital, and so that educational options for the field continue  to  grow  and  expand.  CIPPC’s  staff  is  working  with  other  national  and  international   leaders in the field of pain & pediatric palliative care to share practice knowledge, and advance the state of the art for education and training in this specialty practice area. Adopting a national focus, CIPPC has engaged in a variety of specialized educational offerings that seek to teach providers how to provide pediatric pain and palliative care services. Each of these includes significant content on the importance of incorporating integrative methods, the variety of integrative modalities successfully used with children, and practical knowledge about how to begin using these therapies in practice. Regular courses offered by our program include: 

Annual Pediatric Pain Master Class: an annual weeklong seminar emphasizing state of the art pain and symptom management for children geared toward physicians and advanced practice nurses. Course content includes one and a half days on integrative methods, including hypnosis, aromatherapy, massage, healing touch, acupuncture,

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and music therapy. Hands-on opportunities to try different techniques are an essential component of the Master Class. An interdisciplinary faculty and a small-group learning format create a rich learning environment for participants. More than 300 physicians from 22 countries have participated in the training In recent years, the program has been able to host international scholars from developing countries to learn state of the art methods each year. They also have brought their cultural insights and techniques to the group, which has enhanced the experience for everyone. 



The Center to Advance Palliative Care (CAPC) designated our program as one of two nationwide Palliative Care Leadership Centers (PCLC) in pediatrics. Three-day PCLC-Pediatrics courses are offered every three months. Another international forum for dissemination has been the development of a national  “Train-the-Trainer”  Pediatric  Pain & Palliative Care Curriculum, sponsored by a $1.6 million grant from the NIH/NCI 2010-2015. The curriculum comprises of 23 core palliative care modules and 2 electives, delivered in a combination of distance (online) learning and in-person  “face-to-face”  conference sessions. These “Train-the-Trainer”  modules  provide  the  “trainers”  (pediatric  hematologists/ oncologists or other pediatric specialists incl. nurse practitioners) with PowerPoint presentations, trigger-tape videos and a teaching handbook for each module to teach interdisciplinary teams. All modules (half on them on advanced pediatric pain and symptom management and the other half on psycho-social-spiritual aspects of pediatric palliative care as well as quality improvement and teaching the adult learner) are now completed. [http://epec.net/epec_pediatrics.php]

In addition, the program hosts a one-year physician fellowship in pediatric palliative care. The core curriculum includes opportunities to work with and learn from the Integrative Medicine program, and mentorship for application of integrative methods into clinical practice.

Conclusion There are numerous successful models of care for the provision of PPC worldwide and many programs work closely and successfully with a designated Pediatric Pain Service. The advantage of an integrated Pain & Palliative Care Program, such as the one described in this article, may be the provision of care in a continuum from acute, procedural, and chronic/complex pain to palliative care and hospice care. The advantage of a pediatric pain service is the perception of being less frightening and usually a welcome addition to the care of a child with a complex condition. A palliative care program may at times interact with health professionals or parents, who misunderstand the service  as  “end-of-life  care”  or  that  palliative  care  means,  “to  give  up.”  As  a  combined  pain   and palliative care service we see many children at diagnosis of a life-threatening conditions and are able to interact with families earlier in the illness process. This allows the team to follow the disease trajectory, regularly combining pharmacology, rehabilitation and

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anesthetic/invasive modalities with integrative, non-pharmacologic therapies in the management of pain and distressing symptoms in children.

Figure 1. 6-year old Cassandra with severe pain after chest tube insertion.  She  had  an  “intravenous  morphine as  needed”  analgesic order.  However,  scheduled  “around-the-clock”  opioids would have been appropriate instead, since usually “as-needed” dosing take several hours and higher opioid doses to relieve pain and resulted in this case in cycles of under medication and severe pain, alternating with periods of overmedication and drug toxicity, the latter seen in this photo.

Figure 2. Cassandra was started on a morphine continuous infusion plus patient-controlled analgesia (PCA) pump. She learned and practiced imagery, self-hypnosis and bubble-blowing. The combination of pharmacology and integrative therapies kept her pain-free during the hospital stay.

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