Strategies for Managing Pain and Suffering (and a bit about palliative care)

Transcription

1 Strategies for Managing Pain and Suffering (and a bit about palliative care) Sandy Van Brouwer, ACNP/PNP Pediatric Palliative Care Helen DeVos Children s Hospital 1

2 Disclosures None 2

3 Objectives - pain Brief review of pain physiology Identify barriers to adequate pain management Explore relevance of pain management Discuss strategies for pain management 3

4 Objectives - palliative care Discuss common misconceptions about palliative care Review common referral obstacles to pediatric palliative care (PPC) teams Underscore importance of interdisciplinary team approaches in PPC teams 4

5 Problems with pain Pediatric patients seldom need medication for the relief of pain. They tolerate discomfort well. Swafford LI,Allan D. Pain relief in the pediatric patient. Med Clin North Am 1968, 52;

6 General principles Assessment Management 6

7 General principles of pain assessment The process of pain management starts with adequate pain assessment Inadequate pain assessment Comprehensive pain assessment Nature Cause Personal context Underlying pathophysiology 7

8 General principles of pain management Use of appropriate interventions: +/- pharm Education for all involved Ongoing assessment of treatment outcomes Use of interdisciplinary team 8

9 Defining pain An unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage. International Association for the Study of Pain (1994, 2008) Inability to communicate verbally? Pain is always subjective Absent tissue damage? 9

10 Pain physiology: acute vs chronic pain Acute Easily identifiable event Resolves quickly Nocioceptive Chronic +/- easily identifiable +/- multifactoral +/- indeterminate period 10

11 Pain physiology: nociceptive pain Involves direct stimulation of intact NS 2 subgroups Somatic pain Visceral pain Responds well to opioids and/or coanalgesics 11

12 Pain physiology: neuropathic pain Results from disordered function of peripheral or CNS Various subtypes Description Intensity of pain may extend observable injury Opioids + adjuvant analgesics 12

13 Nurses obligation to pain management Nurses ought to prevent pain Nurses ought to remove pain Nurses ought to promote pain relief Nursing Ethics

14 General guidelines Do not delay use of analgesics Treat both the source of pain and the pain itself 14

15 Undertreatment of pain in children Parents expect pain to be relieved J Pain Symp Manage 2006 Parents assume everything possible is done Anand Neonatal Studies The younger the child is, the less likely they are to receive appropriate analgesia J Pain Symp Manage

16 Undertreatment of pain in older adults Adults above 70 years are at greatest risk Misconceptions: Normal part of aging process Fear of addiction, tolerance, side effects Coexisting conditions 16

17 Undertreatment of pain Inpatient pediatric patients Moderate Severe Chronic No pain 38% 20% 12% 30% 17

18 Societal and economic impact of pain Pain has multifaceted causes and outcomes or consequences. Assessment of chronic pain should include evaluation of physiologic, psychological, and environmental factors. Open communication between clinician and patient is essential to establish realistic treatment goals and expectations. 18

19 Costs of pain Financial burden on healthcare (~ billion/year) Heart disease $243 billion Cancer $188 billion Diabetes $188 billion Comprehensive treatment approach 19

20 Additional costs of pain Persons with persistent pain suffer more physical symptoms and are at greater risk for anxiety and depression Inadequate analgesia for initial procedures diminishes effect of adequate analgesia in subsequent procedures 25% of adults have fear of needles with most fears developing in childhood Leads to avoiding healthcare 20

21 Consequences of undertreated pain Repeated pain exposure induces long term changes: Pain sensitivity Stress-arousal systems Developing brain Sensory processing Impaired neurocognitive functioning Thinner cortex Reduced cerebellar volumes 21

22 PTSD and pain US soldiers with serious combat injury: use of morphine during trauma care reduces risk of PTSD NEJM 2010 Children with injury leading to hospital treatment: morphine use associated with lower levels of PTSD 6 months later Behavior research and therapy 2010 Pediatric burn patients: higher doses of morphine associated with greater reduction in PTSD symptoms at 6 months J Am Academy Child and Adol Psych 2001, J Burn Care

23 Problems due to chronic pain Lost productivity Absenteeism Impaired workplace performance Diminished vitality Chronic pain Sleep deprivation Depression Anxiety Physical distress 23

24 WHO principles of pain management By the Clock dose at regular intervals By the Patient adapt treatment to individual patient By the appropriate route By the Analgesic Ladder use two-step strategy / _Guidelines.pdf

25 WHO Principle #1: Dosing at Regular Intervals When pain is constantly present, analgesics should be administered at regular intervals Maintain steady blood levels, avoiding peaks and troughs By the Clock NOT as needed (PRN) PRN = pro re nata (as circumstances arise) PRN really means Patient Receives Nothing PRN dosing may take hours to work and higher doses! 25

26 WHO Principle #2: Adapt Treatment to Individual Patient Tailor treatment to individual patient Titrate on an individual basis The effective dose is the dose that relieves the pain Different patients respond differently to the same dose Dose limit of strong opioids? None At analgesic dosing, no sedation is expected Assess pain regularly! 26

27 Pain assessment 27

28 WHO Principle #3: Dose by the appropriate route 28

29 WHO Principle #3: Dose by the appropriate route Aim for the most simple, effective, and painless route Oral IV SC *Rectal Transdermal Intranasal *IM Sublingual Transmucosal *Nebulization 29

30 WHO Principle #4: Use a two step approach 30

31 The trouble with codeine... Weaker analgesic than initially believed Standard dose of NSAIDS produces more effective analgesia Various metabolizer phenotypes Spectrum of poor to ultra-rapid metabolizers resulting in poor efficacy or risk of severe AEs 31

32 Pharmacogenetics of CYP2D6 32

33 Race and genetic polymorphisms 33

34 Misunderstanding pain management Addiction Perception that opioids cause addiction inhibits adequate pain control Confusion among addiction, tolerance, and physical dependence Proper education regarding inappropriate fear 34

35 Opioid use and respiratory depression (RD) Myth 1: Risk of RD when using opioids to relieve pain is high Myth 2: As dose increases, RD can occur suddenly in the absence of overdose 35

36 Neuropathic pain management Often requires adjuvant analgesics +/- breakthrough opioids Tricyclic antidepressants (amitriptyline) Gabapentin Methadone Ketamine 36

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38 Integrative pain management

39 Medical marijuana 39

40 Integrative pain management State of the art pain management requires pharmacological management combined with supportive and integrative therapies to manage pain properly Physical methods (cuddle/hug, rocking, massage, heat/cold, TENS) Cognitive behavioral techniques (guided imagery, distraction, hypnosis, abdominal breathing, biofeedback) Naturopathic medicine (nutrition, chiropractic therapy, homeopathy)

41 Integrative therapies Psychotherapy Acupuncture Spiritual direction Reiki Massage therapy Nutrition Naturopathy Sound therapy Essential oils Emotional release Yoga Hakomi therapy

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43 Conclusions - pain Current guidelines for assessment and management of pain are fragmented and represent input from various organizations. Organization of a collaborative group of clinical and patient organizations with an outcomes-based approach would establish standardized treatments and goals. Both patients and healthcare practitioners would benefit from collaborative efforts for advocacy and education. Pain medicine deserves status as a primary medical specialty. 43

44 Pediatric palliative care What is it? 44 What is it not?

45 Objectives - palliative care - review Discuss common misconceptions about palliative care Review common referral obstacles to pediatric palliative care (PPC) teams Underscore importance of interdisciplinary team approaches in PPC teams 45

46 Misconception #1 Palliative Care is only for dying patients... 46

47 Pediatric Palliative Care Pediatric Palliative Care prevents, identifies and treats suffering in children with serious illnesses, their families, and the teams that care for them. It is appropriate at any stage of the illness, and can be provided together with disease-directed treatment. The AAP supports an integrated model of palliative care in which the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death AAP Policy Statement on Palliative Care for Children at The goal is to add life to the child s years, not simply years to the child s life

48 Palliative Care Hospice

49 PPC is not about dying, but... Geneva, Switzerland World Health Organization officials expressed disappointment Monday at the group s findings that, despite the enormous efforts of doctors, rescue workers and other medical professionals worldwide, the global death rate remains at 100% 49 Death, a metabolic affliction causing total shutdown of all life functions, has long been considered humanity s number one health concern. Responsible for 100 percent of all recorded fatalities worldwide, the condition has no cure.

50 Life-Limiting Conditions (LLC)... are those for which there is no reasonable hope of cure and from which children will die before reaching adulthood USA: 74.3 million children age 0-17 (2014) ~ 237,000 with LLC ~ 32/10,000 Mortality ( /10,000): 10,800-13,700 die/year Royal College of Physicians and Child Health, ,000 die/year age 0-24 who would benefit from PPC Fuedtner 2001 Globally: million children with LLC 50

51 Children with Life-limiting Conditions Cure is possible but may fail Malignancy, complex congenital heart disease There is no known cure but where treatment may prolong quality and quantity of life Cystic fibrosis, severe immunodeficiencies, muscular dystrophy, neurodegenerative disorders Care is palliative from the time of diagnosis Progressive metabolic disorders, trisomy 13/18 Serious illness leads to life-limiting complications Severe Neurologic Impairment secondary to hypoxic brain injury, severe brain malformations 51

52 Pediatric Palliative Care Prognosis doesn t matter! It s not about dying it s about living with a serious illness 52

53 Survival of patients receiving PPC Feudtner et al, Pediatrics 2011

54 Misconception # 2 Palliative Care starts: when curative therapy stops and when a child is close to death and ends at death 54

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56 Common Trajectory Of Decline In Progressive Life- Limiting Illness In Children Functional Status Decline Crises Death Time From presentation by Joanne Wolfe at the 16 th International Congress on the Care of The Terminally Ill

57 Ethan s Story...

58 Misconception # 3 A specialized Pediatric Palliative Care provider/team is not necessary... 58

59 Does palliative care involvement make a difference? Impact of Palliative Care consultation in pediatric patients with cancer 15 children 11 receiving chemo/xrt With PPC consult 3 new symptoms identified per patient 14 patients had medication changes recommended 11 referred for counseling 3 recommended for patient care conference 6 recommended for family conference Journal of Palliative Medicine 2009;12(4):

60 Outcomes improved with PPC involvement Parents of children with cancer report less distress from pain, dyspnea and anxiety at EOL Wolfe et al J Clin Onc 2008 Children who received PPC/Oncology more likely to have fun (70% versus 45%) and to experience events that added meaning to life (89% versus 63%) Friedrichsdorf SJ et al, J Palliat Med 2015 Families who received PPC/Oncology reported improved communication Kassam A et al. Pediatr Blood Cancer 2015 Children receiving PPC experience shorter hospitalizations and fewer emergency department visits Aranth et al (manuscript in preparation) 60

61 PPC: Better care and cost savings? Better outcomes, lower costs: palliative care program reduces stress, costs of care for children with life-threatening conditions. Policy Brief UCLA Cent Health Policy Res. Aug 2012 Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution. 425 children (age 1-21) receiving home-based PPC or hospice services 2000=2010 Compared pediatric resource utilization before and after enrollment Non-cancer patients: LOS decreased 38 days, decreased hospital charges $275,000/patient J Palliat Med (2):

62 Miguel s Story 62

63 Misconception #4 The family s not ready to give up hope & Palliative care means doing nothing 63

64 64... in face of serious illness

65 Hope in face of serious illness Parents and pediatric patients may opt for continued treatment of underlying disease even when there is no realistic hope for cure Wolfe J et al. JAMA (19) Hope for a miracle Desire to extend life Desire to palliate symptoms related to progressive disease Hope may need to be reframed Goldman A et al. J Pall Med (3) Simply because there is no cure doesn t mean there aren t things we can do to improve symptoms and quality of life Active and advanced approach to pain and symptom management and family support Best medical care does not always involve the most medical technology Oncology: Placing DNR order did not result in reduction of the level, quality and priority of children s medical care Baker JN et al. J Palliat Med (11):

66 The language of hope... Tell me a little about Norah on a good day! Considering what Andrew is up against, what are you hoping for? Since we can t make this all better, what is most important for Miguel and your family? I am hoping for a miracle too. And I have seen miracles, but they are very rare and happen on treatment or off treatment... Just in case the miracle isn t going to happen (... if God has other plans for Maryam), what else are you hoping for? We want to make sure that Nicholas lives as long as possible, as well as possible We are hoping for the best, but preparing for the worst. So what I hear you saying is... Did I get this right...? Then I would recommend the following... 66

67 Adult data Prolongs survival Improved quality of life and mood NEJM 2010;363(8): Decreases caregiver burden J Pall Medicine 2011;14(4): ASCO 2012 early integration of palliative care into standard cancer treatment in malignancies with high symptom burden J Clinical Oncology 2012;30(8):

68 Misconception # 5 Palliative Care involvement diminishes primary care/pediatric specialist relationship with patient/family... 68

69 Pediatric Palliative Care Consult Complementary How can we help...? Second opinion/further support regarding: Decision making Symptom management Coordination of care Home care 69

70 Rosalie s Story 70

71 Palliative Care Team Model Physicians Advanced Practice Providers Social Workers Nurses Chaplains Child Life Psychologists Bereavement coordinators Community agencies Provide consults on inpatient and outpatient basis Dependable resource whether in the hospital or at home Serve as resource for community physician Serve the entire family when appropriate Continue involvement during bereavement and beyond

72 Conclusions Pediatric Palliative Care is... Specialized medical care for children with serious illness Focused on relieving pain, distressing symptoms, and stress of serious illness Appropriate at any age and at any stage, together with curative treatment Goal is to improve quality of life for child and family Provided by an interdisciplinary team who work with patient s other physicians and health care providers: provides an extra layer of care 72

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