BOOK
Pediatric Hospital Medicine and Pediatric Palliative Care, An Issue of Pediatric Clinics, E-Book
Mary C. Ottolini | Christina K. Ullrich
(2014)
Additional Information
Book Details
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 |