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Out-patient Primary and Specialty Palliative Care


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Presentation on primary and specialty palliative care, covering what is palliative care, basics of primary palliative care including pain and symptom management, and referral criteria for out-patient specialty palliative care.

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Out-patient Primary and Specialty Palliative Care

  1. 1. OUT-PATIENT PRIMARY AND SPECIALTY PALLIATIVE CARE Michael Aref, MD, PhD, FACP, FHM Assistant Medical Director Palliative Medicine Carle Hospital and Physician Group
  2. 2. Disclosure of Financial Relationships and Conflicts of Interest None
  3. 3. Objectives • What is palliative care? • Basics of primary palliative care. • When to refer for specialty palliative care.
  4. 4. Mission and Vision Mission • Carle Palliative Care Services will serve patients with life-limiting illness, their families, and providers in their search for meaning and value, alleviation of suffering, and help provide patient-centered perspective on goals-of- care. Vision • Carle Palliative Care Services will be an evolving leader in high value, high quality primary and specialist palliative care delivery, education, and research.
  6. 6. Suffering Quality of Life The Problem
  7. 7. Palliative Care SufferingQuality of Life Part of the Solution
  8. 8. Definitions • Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.1 • Palliative care, and the medical sub-specialty of palliative medicine, is specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious. Illness whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.2 • Palliative care is the relieving or soothing of symptoms of a disease or disorder while maintaining the highest possible quality of life for patients.3 1 2 3
  9. 9. Sufferology • The area of medicine that deals with alleviating the physical, mental, spiritual and familial suffering of patients with chronic, progressive illness. • Palliative care is concerned with three things: the quality of life, the value of life, and the meaning of life. Doyle D, Oxford Textbook of Palliative Medicine, 3 ed.
  10. 10. “Are They Going Palliative?” • Is a philosophy of care for seriously ill patients, it is – NOT a place – NOT a status – NOT limited by curative intent
  11. 11. Type Goal Investigations Treatments Setting Active (Blue) To improve quality of life with possible prolongation of life by modification of underlying disease(s). Ex: Pt. who has potentially resectable pancreatic carcinoma. May require immediate symptom control or need guidance in setting future goals. Active (eg, biopsy, invasive imaging, screenings) Surgery, chemotherapy, radiation therapy, aggressive antibiotic use, Active treatment of complications (intubation, surgery) In-patient facilities, including critical care units; Active office follow-up Comfort (Green) Symptom relief without modification of disease, usually indicated in terminally ill patients. Ex. Pt. who has unresectable pancreatic carcinoma, no longer a candidate for or no longer desires chemo or radiation therapy. Minimal (eg, chest radiograph to rule out symptomatic effusion, serum calcium level to determine response to bisphosphonate therapy) Opioids, major tranquilizers, anxiolytics, steroids, short- term cognitive and behavioral therapies, spiritual support, grief counseling, noninvasive treatment for complications Home or homelike environment Brief in-patient or respite care admissions for symptom relief and respite for family Urgent (Yellow) Rapid relief of overwhelming symptoms, mandatory if death is imminent. Shortened life may occur, but is not the intention of treatment (this must be clearly understood by patient or proxy). Ex. Patient who has advanced pancreatic carcinoma reporting uncontrolled pain (8 on a scale of 10), despite opioid therapy. Only if absolutely necessary to guide immediate symptom control Pharmacotherapy for pain, delirium, anxiety. Usually given intravenously or subcutaneously and in doses much higher than most physicians are accustomed to using. Deliberate sedation may need to be used and may need to be continued until time of death. In-patient or home with continuous professional support and supervision Victoria Classification of Palliative Care J Palliat Care. 1993 Winter;9(4):26-32.
  12. 12. Evolving Model of Palliative Care Cure/Life-prolonging Intent Palliative/ Comfort Intent “Active Treatment” Palliative Care D E A T H D E A T H
  13. 13. Evolving Model of Palliative Care D E A T H Comfort- Focused Care Psychological and Spiritual Support Disease- Focused Care
  14. 14. Palliative Care and Hospice Rosenberg, M et al, Clin Geriatr Med 2013; 29:1–29 Palliative Care Symptom Management of Life Limiting Illness End of Life Care/Hospice Symptom Management and Comfort Care
  15. 15. Choosing Wisely • Don’t delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment.
  16. 16. DO IT! Palliative care is like intubation, if you think it needs to be done,
  17. 17. Curative and Palliative Symptom YesNo Disease modifiable ? Review Alleviate symptom through disease- specific intervention Alleviate symptom through global/systemic intervention J Palliat Med. 2012; 15(1):106-14
  18. 18. And not or  Of the 151 patients who underwent randomization, 27 died by 12 weeks and 107 (86% of the remaining patients) completed assessments. Patients assigned to early palliative care had a better quality of life than did patients assigned to standard care (mean score on the FACT-L scale [in which scores range from 0 to 136, with higher scores indicating better quality of life], 98.0 vs. 91.5; P=0.03). In addition, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%, P=0.01). Despite the fact that fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%, P=0.05), median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, P=0.02).
  19. 19. Curative or Palliative? • Morphine – No mortality benefit. • Oxygen – No mortality benefit (unless hypoxic). • Nitrates – No mortality benefit. • Aspirin – OK, now we start decreasing mortality (anti-platelet effects onset of action is 2 hours, analgesic effect is 10-15 minutes).
  21. 21. Total Symptoms Pain • Physical problems (multiple) • Anxiety, anger and depression— elements of psychological distress • Interpersonal problems — social issues, financial stress, family tensions • Nonacceptance or spiritual distress Dyspnea • Physical symptoms • Psychological concerns • Social impact • Existential suffering Curr Opin Support Palliat Care. 2008; 2(2):110-3
  22. 22. Physical Cause? Assoc. Sx Debility and Fatigue Social Role Relationship Occupation Financial Cost Spiritual Existential coping Religious beliefs Meaning of life/illness Personal value Psychological Emotional Response Comorbid mood disorder ± anxiety Adjustment to new baseline Symptom Chaplaincy Art & Music Therapy Social Work Financial Navigator Occupational Therapy Social Work Psychology Psychiatry Interventional Pain Service Palliative Care Other Specialties Pharmacy Physical Therapy Total Symptom / Suffering Model
  23. 23. Maslow’s Hierarchy of Needs Self-Actualization Esteem Love / Belonging Safety Physiological Physical Psych Social Spiritual
  25. 25. Pain Classifications Somatic (Nocioceptive) Visceral (Nocioceptive) Neuropathic (Central) Neuropathic (Peripheral) Psychogenic Etiology Skin and Deep Tissue Damage Organ Damage Nerve Damage Nerve Damage Primary psychological origin or worsening due to mood disorder Temporal Dependence Acute or Chronic Acute Chronic > Acute Chronic > Acute Acute or Chronic Characteristics Localized dull or aching Diffuse, referred to superficial structure, sickening, deep, squeezing, and dull Burning, coldness, "pins n’ needles", numbness and itching Mixed, non- physiologic Examples Fibromyalgia Tension headache Chronic back pain Arhtritis Irritable Bowel Syndrome Cystitis Prostate Pain Endometriosis Central pain syndrome 2° stroke, MS, tumor Diabetic neuropathy Shingles Complex regional pain syndrome Depression Anxiety Adjustment disorders Opioids First line First line Third line Second line (tramadol, oxycodone, methadone) No Physical
  26. 26. Start Smart • What type of pain are we managing? • Stress functional improvement and pain management rather than “pain free”. • Opiates are neuro-hormonal- psychiatric scaffolding they are not cure for pain nor the cornerstone of good pain management. • Opiate dichotomy: Judged due to social stigma, shocked by abuse and “self-medication”. • What is your patient’s goal? • What is the plan and is everyone in agreement? Physical Proc (Bayl Univ Med Cent). 2000 Jul; 13(3): 236–239.
  27. 27. Opiate-Induced Bowel Dysfunction Prophylaxis • Non-pharmacological – Oral hydration – Physical activity – Privacy/scheduled visit to commode • Pharmacological – Scheduled senna (stimulant laxative), hold for diarrhea – Scheduled bisacodyl (stimulant laxative), hold if bowel movement in the past 24° – Scheduled polyethylene glycol (osmotic stool softener), hold if bowel movement in the past 48° – Do NOT use bulk producers (i.e. fiber) – Consider adding mineral oil (lubricating stool softener) Physical
  28. 28. Dose Units Medication Route Real World 15 mg morphine PO 15 mg hydrocodone PO 10 mg oxycodone PO 4 mg hydromorphone PO 5 mg morphine IV 0.75 mg hydromorphone IV 0.05 mg fentanyl IV Dose Equivalents Physical
  29. 29. WHO Analgesic Ladder Canadian Family Physician 2010; 56(6):514-517 Physical
  30. 30. Descending the Ladder Acute Pain < 3 months • Wean short acting dose by 25-50% per day until 1-2 tablets Q4H of “low” dose medication then wean dosing interval every 3 days: ✓ Q6H-Q8H-Q12H-QHS ✓ 48 “doses” Chronic Pain (> 3 months) • Wean long acting dose by 10% every week. Physical
  31. 31. 2-for-1 Specials • Itching + anxiety = hydroxyzine • Neuropathic pain + muscle spasm = gabapentin • Neuropathic pain + anxiety = pregabalin • Depression + neuropathic pain = duloxetine Physical
  33. 33. Nausea Cause Receptors Drug Classes Examples Vestibular Cholinergic, Histaminic Anticholinergic, Antihistaminic Scopolamine patch, Promethazine Obstipation Cholinergic, Histaminic, likely 5HT3 Stimulate myenteric plexus Senna products Motility Cholinergic, Histaminic, 5HT3, 5HT4 Prokinetics which stimulate 5HT4 receptors Metoclopromide Infection/Inflammation Cholinergic, Histaminic, 5HT3, Neurokinin 1 Anticholinergic, Antihistaminic, 5HT3 antagonists, Neurokinin 1 antagonists Promethazine (e.g. for labyrinthitis), Prochlorperazine Toxins Dopamine 2, 5HT3 Antidopaminergic, 5HT3 Antagonists Prochlorperazine, Haloperidol, Ondansetron Physical
  34. 34. Nausea • Menthol salve for olfactory-induced nausea • Wean IV anti-emetics for at least 24 hours prior to discharge • Oral anti-emetics for nausea prophylaxis • Sublingual and rectal for acute nausea Physical
  35. 35. BASICS OF PRIMARY PALLIATIVE CARE Complications of Opiates
  36. 36. Case • 23 y/o WF with chronic abdominal pain, nausea, and food aversion secondary to multiple surgeries for hereditary pancreatitis and complications thereof. • Non-malignant abdominal pain managed with progressive increases in opiates, now on high-dose opiates, 200 mcg/hr fentanyl patch with 4-8 mg of hydromorphone as needed every 2-3 hours • Mother strong advocate for patient. • Consulted for pain management.
  37. 37. How is she not dead?!?
  38. 38. CDC Grand Rounds, January 13, 2012 / 61(01);10-13 Opioid Overdose Risk Factors
  39. 39. Course • Basal opiates increased and discharged home • Patient seen on subsequent hospitalizations for other complications, e.g. line infection, portal vein thrombosis. Abdominal pain continues to worsen. • Having built a relationship with patient, discussed concerns that opiates were worsening her pain. Agreeable to weaning off opiates.
  40. 40. Narcotic Bowel Syndrome Chronic or frequently recurring abdominal pain that is treated with acute high dose or chronic narcotics and all of the following: • The pain worsens or incompletely resolves with continued or escalating dosages of narcotics. • There is marked worsening of pain when the narcotic dose wanes and improvement when narcotics are reinstituted (“Soar and Crash”). • There is a progression of the frequency, duration and intensity of pain episodes. • The nature and intensity of the pain is not explained by a current or previous gastrointestinal diagnosis* *A patient may have a structural diagnosis (e.g., inflammatory bowel disease, “chronic pancreatitis”) but the character or activity of the disease process is not sufficient to explain the pain. Clin Gastroenterol Hepatol. Oct 2007; 5(10): 1126–1122.
  41. 41. Case • 72 y/o WM with metastatic pancreatic cancer, admitted for pain control. • Patient has been on rapidly escalating doses of morphine. Delirious, in his lucid moments he weeps, morphine has been aggressively increased. In the past 24 hours he developed intermittent jerking of his limbs. • Consulted for pain management.
  42. 42. Opiate-Induced Hyperalgesia • Increasing sensitivity to pain stimuli (hyperalgesia). Pain elicited from ordinarily non-painful stimuli, such as stroking skin with cotton (allodynia). • Worsening pain despite increasing doses of opioids. • Pain that becomes more diffuse, extending beyond the distribution of pre-existing pain. • Presence of other opioid hyperexcitability effects: myoclonus, delirium or seizures. • Can occur at any dose of opioid, but more commonly with high parenteral doses of morphine or hydromorphone and/or in the setting of renal failure.
  43. 43. Course • Patient was switched to fentanyl, but at 75% equianalgesic dose. • Pain controlled, delirium improved, myoclonic jerks resolved. • Patient died on in-patient hospice.
  45. 45. Primary and Specialty Palliative Care Primary Palliative Care • Referrals • Feedback • Managing patients closer to home Specialty Palliative Care • Education • Support • Adding value to preexisting exemplary care
  46. 46. Physical Psychological Social Spiritual • Pain • Dyspnea • Cough • Nausea/Vomiting • Hiccoughs • Constipation • Diarrhea • Fatigue • Malaise • Fever • Pruritus • Anorexia • Grief • Anger • Fear • Anxiety • Depression • Delirium • Insomnia • Ill adjustment to new baseline • Change in role • Relationship issues due to disease • Career pressures due to disease • Financial stressors due to disease • Existential suffering • Crisis of faith due to illness • Loss of meaning in life/illness • Loss of personal value The burden of an undesirable situation can include: Sx Burden HCQOL Is this symptom burden due to a state of health characterized by functional impairment with cellular, tissue, or organ level structural change? Healthcare Quality-of-LifeSymptom Burden Does the patient report having inadequately relieved symptom burden? Does the patient utilize healthcare resources due to inadequately relieved symptom burden? Does the patient have marginally controlled symptom burden and face treatment that will exacerbate symptom burden? Treatment Associated Symptom Burden In-Patient Healthcare Quality-of-Life Symptom Burden Healthcare Quality-of-Life Symptom Burden symp·tom sim(p)təm/ noun a sign of the existence of something, especially of an undesirable situation
  47. 47. Carle Palliative Medicine Criteria General Referral Criteria1 Presence of a serious illness and one or more of the following: • New diagnosis of life-limiting illness for symptom control, patient/family support • Declining ability to complete activities of daily living • Weight loss • Progressive metastatic cancer • Admission from long-term care facility (nursing home or assisted living) • Two or more hospitalizations for illness within three months • Difficult-to-control physical or emotional symptoms • Patient, family or physician uncertainty regarding prognosis • Patient, family or physician uncertainty regarding appropriateness of treatment options • Patient or family requests for futile care • DNR order conflicts • Conflicts or uncertainty regarding the use of non-oral feeding/hydration in cognitively impaired, seriously ill, or dying patients • Limited social support in setting of a serious illness (e.g., homeless, no family or friends, chronic mental illness, overwhelmed family caregivers) • Patient, family or physician request for information regarding hospice appropriateness • Patient or family psychological or spiritual/existential distress Cancer2 • Stage IV disease • Stage III lung or pancreatic cancer • Stage II non-small cell lung cancer3 • Prior hospitalization within 30-days, excluding routine chemotherapy • Hospitalization lasting longer than 7 days. • Uncontrolled symptoms including pain, nausea/vomiting, dyspnea, delirium, and psychological distress. 1 2 doubled-palliative-care-cut-hospital- readmissions/f37951d2a4828930104a3fa9b91eb013.html 3 N Engl J Med 2010; 363:733-742
  48. 48. Carle Palliative Medicine Criteria Heart Failure1 • Symptoms • NYHA class III/IV symptoms • Frequent heart failure readmissions • Recurrent ICD shocks • Refractory angina • Anxiety or depression adversely affecting patient's quality of life or ability to best manage illness • Milestones • Referral • VAD • Transplant • TAVR • Home inotropic therapy • Caregiver distress Kidney Disease2 • CKD Stage IIIb, IV, or V with fatigue, muscle cramps, anorexia, nausea, insomnia, neuropathy, gout, itch, headache, or cognitive impairment • ESRD on dialysis with any stage V symptom as well as abdominal pain from peritoneal dialysis or fistula problems from hemodialysis • Calciphylaxis • Symptoms due to comorbid diabetes, cardiovascular disease, or cancer Liver Disease3 • Ascites despite maximum diuretics • Spontaneous peritonitis • Hepatorenal syndrome • INR > 1.2 without anticoagulation • Encephalopathy • Recurrent variceal bleeding if further intervention inappropriate 1 2 Adapted from: 3
  49. 49. Carle Palliative Medicine Criteria Lung Disease Chronic Obstructive Pulmonary Disease1 •Age ≥ 75 •Diabetes, cardiovascular disease, or end- stage renal disease •Change in 6 minute walk by 50 m •Functional dependence and patient reported minimal physical activity •Poor healthcare quality-of-life •FEV1 < 30% •BMI < 20% •≥ 1 hospitalization within last year Restrictive Lung Disease2 •TLC or FVC < 50% Neurological Disease3 Presence of any of the General Referral Criteria above, and/or: • Folstein Mini Mental score < 20 • Feeding tube is being considered for any neurological condition • Status Epilepticus > 24 hrs • ALS or other neuromuscular disease considering invasive or non-invasive mechanical ventilation • Any recurrent brain neoplasm • Parkinson’s disease with poor functional status or dementia • Advanced dementia with dependence in all activities of daily living 1 Int J Chron Obstruc Pulmon Dis. 2015; 10:1543-51 2 Based on severity obtained from review of 3
  50. 50. THANK YOU Questions? Concerns? Comments?