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Pediatric Hospital Medicine and Pediatric Palliative Care, An Issue of Pediatric Clinics, E-Book

Pediatric Hospital Medicine and Pediatric Palliative Care, An Issue of Pediatric Clinics, E-Book

Mary C. Ottolini | Christina K. Ullrich

(2014)

Additional Information

Abstract

For the first time, Pediatric Clinics is devoting one issue to two clinically focused topics: Pediatric Palliative Care and Pediatric Hospital Medicine. Dr. Ottolini has organized her section to focus on a variety of issues of relevant to all pediatricians, but which pose special challenge to the Pediatric Hospitalists. As pediatric care has advanced, children who would not have survived infancy are growing into young adults with complex chronic diseases and dependence upon technology. They frequently require hospitalization to address exacerbation of underlying disease processes and procedures to improve their quality of life. The articles are devoted to patient care challenges of troubleshooting malfunctioning technology, co-managing medically complex patients pre and post-op with surgical colleagues, and the Hospitalist’s evolving role in performing procedures and sedation in this population of vulnerable patients. Also discussed rare strategies to maximize communication with parents, patients and primary care providers during hospitalization, especially for medically complex patients. Dr. Ullrich and Dr. Wolfe Pediatric have worked to bring relevant articles on palliative care to the pediatrician. While life-threatening conditions in childhood are rare, children with LTC account for a high proportion of pediatric hospital care, and about one half of such children die in the inpatient setting. The number of hospital-based pediatric palliative care programs has increased dramatically over the past decade to meet the palliative care needs of hospitalized children including symptom management, facilitation of communication, decision-making and advance care planning support, and coordination of care. Given these considerations, it is evident that the topics of pediatric palliative care and hospital medicine are fitting counterparts for this comprehensive issue.

Table of Contents

Section Title Page Action Price
Front Cover Cover
Pediatric Hospital Medicine\r i
copyright \r ii
Contributors v
Contents ix
Pediatric clinics of\rNorth america xvi
Foreword\r xvii
Preface xix
References xx
Shared Decision-Making About Assistive Technology for the Child with Severe Neurologic Impairment 641
Key points 641
Introduction 641
Shared decision-making 642
Definition and Potential Resources 642
Importance of SDM in Decisions About Introduction of Technology 642
Role of the Hospitalist 643
Gastrostomy 643
Case 1 643
Available Options 643
Evidence: Clinical Benefits 644
Evidence: Clinical Challenges 644
Values: Quality-of-Life Considerations 646
Values: Ethical Considerations 646
Tracheotomy 647
Case 2 647
Available Options 647
Evidence: Clinical Benefits 647
Evidence: Clinical Challenges 647
Values: QOL Considerations 649
Values: Ethical Considerations 649
Summary 649
References 649
Pediatric Hospital Medicine Role in the Comanagement of the Hospitalized Surgical Patient 653
Key points 653
Introduction 653
What is comanagement and why is it increasingly common? 654
Current state of comanagement in PHM 655
Establishing a surgical comanagement program 655
Current challenges and issues for surgical comanagement in PHM 657
Clinical Practice/Practice Management 657
Quality 658
Education 658
Research 659
Summary 659
References 659
Family-Centered Rounds 663
Key points 663
Bedside rounds and FCRs 663
FCRs, sit down rounds, hallway rounds, and conference room rounds 664
Benefits of FCRs 664
How do patients and families perceive rounds? 666
Barriers to FCRs 667
Next steps with FCRs 668
References 669
Effective Communication with Primary Care Providers 671
Key points 671
Current state of communication 672
Communication and patient safety 673
What do our primary care providers want? 674
A call to action 675
Strategies to improve hospitalist and primary care provider communication and partnership 676
References 678
Pediatric Hospitalists Working in Community Hospitals 681
Key points 681
Background 681
Terminology and Overview 681
Growth of CHPHM Programs 682
Variability of CHPHM Programs 682
Clinical issues 683
Unique Aspects of Small Community Hospital Programs 683
Subspecialty and Surgical Resources 684
Patient Acuity and Intermediate Care 684
Relationships with Tertiary Care Centers 684
Logistical issues 685
Staffing 685
Productivity 686
Determining Added Value 686
Training of community hospitalists 687
Residency and Fellowship Training 687
Procedural Skills and Simulation 687
Advocacy 688
The Hospitalist as Advocate for Pediatrics in General 688
Department Chair and Committee Roles 688
Liaison Relationships 688
Nursing 688
Advocacy Outside of the Hospital 690
Summary 690
References 690
Quality Improvement and Comparative Effectiveness 693
Key points 693
Introduction to quality improvement 693
QI education for the pediatric hospitalist 694
QI collaboratives in PHM 695
Publication of QI work 696
Introduction to comparative effectiveness 696
Cost-effectiveness and comparative effectiveness 697
Examples of CER in pediatric hospital medicine 698
The role of pediatric hospitalists in CER 698
The future of QI and CER in pediatric hospital medicine 699
References 700
Pediatric Sedation 703
Key points 703
Introduction 703
Patient selection and pre-sedation assessment 704
Indications for sedation 706
Choosing the optimal sedation agent 707
Location and equipment for sedation 708
The sedation team 708
Monitoring, documentation, and recovery 709
Training, credentialing, and continuing education 714
References 714
Caring for Children Living with Life-Threatening Illness: A Growing Relationship Between Pediatric Hospital Medicine and Pe ... xxi
Hospital care for children living with life-threatening illness xxi
The challenge: ensuring more care is better care xxii
Hospital medicine and pediatric palliative care together: optimizing care for children with LTI xxii
References xxiii
Pediatric Hospital Care for Children with Life-threatening Illness and the Role of Palliative Care 719
Key points 719
Overview 719
Part 1: The Current Landscape of Pediatric Hospital Care 720
Part 2: The Connection Between Palliative Care and Hospital Care for Children 723
Part 3: The Relationship Between Health Care Reform and Palliative Care for Children with LTI 726
Summary 728
References 729
Pediatric Palliative Care Consultation 735
Key points 735
Introduction 735
Added value of PPC 735
Patient and Family 736
The Primary Care Team 736
Hospitals 737
Elements of a consultation 737
Stakeholders 738
The Referring Physician as Stakeholder 738
Child, Parents, and Family as Stakeholders 739
The Community of Medical Clinicians as Stakeholders 739
Palliative Illness and Symptom Assessment 740
The Family as the Unit of Care 740
Prognosis and Medical Decision Making 741
Recommendations, Advance Care Planning, and Continuum of Care 741
Opportunities for consultation 741
Determining Who to Refer 742
When to Refer for Palliative Care Consultation 742
Overcoming challenges to PPC consultation 743
Patients and Families 743
Palliative Care Clinicians 744
The Primary Care Team 744
Hospitals 745
References 746
Improving Quality of life in Hospitalized Children 749
Key points 749
Case: part 1 749
Maximizing quality of life in the inpatient setting 750
Challenges to introducing PPC in the hospital setting 752
Distressing effects of hospitalization on the child and family unit 753
Case: part 2 754
Considerations about symptom management in the hospital setting 755
Educating and supporting trainees and team members 756
Case: part 3 756
References 757
Transitions to and from the Acute Inpatient Care Setting for Children with Life-Threatening Illness 761
Key points 761
Introduction 762
Importance of transitional care in children with life-threatening illnesses 762
Types of transitions involving acute care setting 763
Common challenges and opportunities in providing transitional care to children with LTIs 763
Communication with Clinicians and Other Agencies 765
Communication with primary care providers 766
Strategies to improve communication between hospital-based clinicians and PCPs 766
Communication with home health nurses 767
Strategies to improve communication with home health nursing agencies 767
Communication with hospice clinicians 768
Communication with emergency medical service providers 768
Communication with other community clinicians and agencies 769
Medication Management 769
Strategies to reduce medication errors during transitions 770
Policies and Regulations Regarding the System of Care for Children with LTIs 771
Strategies to understand the system of care for children with LTIs 772
Transportation Issues During Transitions 772
Preparing Caregivers for Home Care 773
Strategies to prepare caregivers for transition 774
Issues Surrounding Transition to Other Facilities 774
Challenges Associated with Transition into a Hospital 775
General strategies to improve transitional care 776
Leveraging Existing Resources 777
Creating Systems to Improve Transitional Care 777
Developing Care Plans 777
Creating Relationships with Other Clinicians and Agencies Serving Children with LTIs 779
Education of Clinicians 780
Advocacy in Transitioning Children to the Community 780
Summary 781
References 781
Adolescents and Young Adults with Life-Threatening Illness 785
Key points 785
Introduction 785
Developmental considerations 786
Developmental tasks 787
Isolation 787
Advance planning, communication, and decision making 789
Transitioning medical homes 790
The transition process 790
Assessing Transition Readiness 791
Transition challenges 791
The role of palliative care 792
Summary 794
Acknowledgments 794
References 794
Pediatric Palliative Care for Children with Complex Chronic Medical Conditions 797
Key points 797
Introduction 797
Philosophy of care 798
Caregiver Role in Lifelong Life-Threatening Condition 798
Balancing Restorative Medicine with Palliative Care 798
Focus on Living and Thriving in Home Community 798
Unique distressing symptoms 799
Polypharmacy 799
Complex Pain Management 799
Acute or breakthrough pain 800
Neuroirritability 800
Feeding Intolerance 802
Dysautonomia 802
Seizures 804
Sleep Disturbance 805
Tone 807
Anticipated Forks in the Road: Collaborating with Families to Prepare for and Work Through Decision Points 807
Medical/Artificial Nutritional Support 809
Respiratory Support 810
Surgical Interventions 811
Special focus: spiritual and psychosocial care 811
Spiritual assessment and care for Benjamin and his family 813
Healing and Hope 813
Grief and Loss 813
Palliative Care Conversations with the Bereaved After the Loss of a Child with CCC 814
Meaning and Values 814
Relationships and Connections 814
Summary 815
Identity 815
Meaning 815
Connection 815
Acknowledgments 816
References 816
Interdisciplinary Care 823
Key points 823
Introduction 824
Composition of the interdisciplinary team 824
The Family-Centered Medical Home 825
Community-Based Pediatric Palliative Care Programs 826
Interdisciplinary practice 828
Inpatient and outpatient collaboration 829
Interdisciplinary communication 830
Summary 832
References 832
End-of-Life Care for Hospitalized Children 835
Key points 835
Introduction 835
Clinical practices at the EOL 836
Medical Decision Making at the EOL 836
Inpatient Care Coordination at the EOL 836
Symptoms at the EOL 838
Management of Pain and Nonpain Symptoms 838
Palliative Sedation 841
Psychosocial concerns at the EOL 842
Cultural, Spiritual, and Religious Concerns 842
Legacy and Memory Building 843
Grief and Bereavement 844
Traumatic Deaths 845
Support for Clinical Staff 845
Moral Distress 845
Ethical issues at the EOL 848
Ethics Consultation 848
Life-Sustaining Medical Treatments 848
Recommendations 849
References 851
Index 855