Critical Palliative Care EndofLife Care Michael Aref MD

Critical Palliative Care: End-of-Life Care Michael Aref MD, Ph. D, FACP, FHM, FAAHPM Assistant Medical Director of Palliative Medicine Clinical Assistant Professor, Department of Medicine, UICOM-UC 1

I DISCLOSURES 2

Disclosures • I have no relevant financial disclosures 3

II CONTACT INFORMATION 4

Contact Information • Twitter @Mike. Aref • Email michael. aref@carle. com • Telephone 217. 383. 6744 • Mail Palliative Care South Clinic 6 611 West Park Street Urbana, IL 61801 5

III OBJECTIVES 6

Objectives • Define terminal illness, imminent death, and actively dying. • Compare and contrast the differences between palliative care, hospice, and comfort care. • Review signs and symptoms for end-of-life prognostication. • Discuss techniques for end-of-life goals-of-care discussions. • Review management options for end-of-life care. • Identify diagnoses and complications specific to end-of-life care. 7

IV END-OF-LIFE 8

Disease Trajectories bioethicsarchive. georgetown. edu/pcbe/images/living_well_graph. gif 9

End-of-Life Concepts Life Expectancy Years • Terminally Ill / End-of. Months Life Care (< 6 months) • Imminent Death (< 2 weeks) Weeks • Actively Dying (< 3 days) Days J Pain Symptom Manage. 2014 Jan; 47(1): 77– 89. 10

High-Quality End-of-Life Care Life Expectancy Years Months Weeks Days J Pain Symptom Manage. 2014 Jan; 47(1): 77– 89. • Begin goals-of-care conversations NOW… • …to provide high-quality end-of-life care LATER! 11

V PALLIATIVE CARE 12

Definitions WHO • CAPC • AAHPM • • • 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. 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. Palliative care is the relieving or soothing of symptoms of a disease or disorder while maintaining the highest possible quality of life for patients. www. who. int/cancer/palliative/denition/en/ www. capc. org/about/palliative-care/ palliativedoctors. org/palliative/care 13

Sufferology More than “there’s nothing left to do” • 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. 14

Mortalopoly and Morbidopoly TITLE DEED PALLIATIVE PLACE DIAGNOSIS $35 With 1 Hospitalization $175. With 2 Hospitalizations 500. With 3 Hospitalizations 1100. With 4 Hospitalizations 1300. With Hospice $1500. Mortality Value $175 Hospitalizations cost $200 K. each Hospice, $0. plus (or minus) 4 hospitalizations. • Palliative care is a philosophy of care for seriously ill patients, it is – NOT a place – NOT a status – NOT limited by curative intent If a patient owns ALL the Symptoms of any Color Group, the opiates are Doubled on Uncontrolled Symptoms in that group. 15

Palliative Care and Hospice Curative or Palliative Treatment Disease Management of Life Limiting Illness Untreatable disease End of Life or Hospice Care Symptom burden increases due to treatable disease burden Symptom Management and Comfort Care Clin Geriatr Med 2013; 29: 1– 29 www. nationalconsensusproject. org www. nia. nih. gov/health/publication/e nd-life-helping-comfort-andcare/providing-comfort-end-life Comfort Care is an essential part of medical care at the end of life. It is care that helps or soothes a person who is dying. The goal is to prevent or relieve suffering as much as possible while respecting the dying person’s wishes. Symptom burden despite or due to disease modification No longer desiring treatment Palliative Care Symptom Management of Life Limiting Illness 16

Palliative Care and Hospice The board certification is Hospice and Palliative Medicine Years Months Weeks Days J Pain Symptom Manage. 2014 Jan; 47(1): 77– 89. • Palliative Care • Hospice 17

VI PROGNOSTICATION 18

Admission and Increased Mortality Cohort Number % Died in ED 205 / 76, 060 0. 27 Died within 30 days of discharge from ED 111 / 59, 366 0. 19 Died within 30 days of being admitted from ED 876 / 16, 489 4. 6 Emerg Med J. Aug 2006; 23(8): 601– 603 19

Death Does NOT Respect Age www. medicine. ox. ac. uk/bandolier/booth/Risk/dyingage. html 20

Case • 46 -year old male patient with stage IV colon cancer on hospice. He is bed bound and receives all his care from his wife, sister, and teenage son. He has minimal intake and is sleeping more. When awake he remains at his cognitive baseline. He states that he is comfortable. • Vital signs are stable on exam. He is cachectic. No pressure ulcers. He has drooping of the nasolabial folds bilaterally. Abdomen is distended but non-tender. 21

Question His wife asks you “How long does he have? ” A. B. C. D. Hours Days Weeks Months 22

Answer His wife asks you “How long does he have? ” A. B. C. D. Hours Days Weeks Months 23

Palliative Performance Scale (PPS) PPS Level Ambulation 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Activity & Evidence of Disease Self-Care Intake Normal activity & work No Full Normal evidence of disease Normal activity & work Some Full Normal evidence of disease Normal activity with Effort Some Full Normal or reduced evidence of disease Unable Normal Job/Work Reduced Full Normal or reduced Significant disease Unable hobby/house work Occasional assistance Reduced Normal or reduced Significant disease necessary Unable to do any work Extensive Considerable assistance Mainly Sit/Lie Normal or reduced disease required Unable to do most activity Mainly in Bed Mainly assistance Normal or reduced Extensive disease Unable to do any activity Totally Bed Bound Total Care Minimal to sips Extensive disease Unable to do any activity Totally Bed Bound Total Care Mouth care only Extensive disease Full Death Victoria Hospice Society - - Conscious Level Life Expectancy Full Months Full or Confusion Weeks-Months Full or Confusion Weeks Full or Drowsy +/- Confusion Drowsy or Coma +/- Confusion Weeks Days-Weeks Days - 24

3 -Day Mortality Rate Estimates PPS ≤ 20% 30 to 60% ≥ 70% Drooping of nasolabial fold, present/absent present absent 3 -day mortality rate (%) 94 42 16 3 25 Cancer 2015; 391

Syndrome of Imminent Death 24 hours to 14 days • Early Stage – Bed bound – Loss of interest and/or ability to drink/eat – Cognitive changes: increasing time spend sleeping and/or delirium • Middle – Further decline in mental status to obtundation • Late – – – “Death rattle” Coma Fever Altered respiratory pattern Mottled extremities www. mypcnow. org/blank-iwkmp 26

Identifying the Actively Dying Patient Profound progressive weakness Changes in respiratory rate and pattern Bed-bound state Sleeping much of the time Indifference to food and fluids Difficulty swallowing Disorientation to time, with increasingly short attention span Low or lower blood pressure not related to hypovolemia Urinary incontinence or retention caused by weakness Oliguria (positive LR 15. 2, 95% CI 13. 4 -17. 1) Drooping of the nasolabial fold (positive LR 8. 3, 95% CI 7. 7 -8. 9) Loss of ability to close eyes (positive LR 13. 6, 95% CI 11. 7 -15. 5) Nonreactive pupils (positive LR 16. 7, 95% CI 14. 9 -18. 6) Hallucinations involving previously deceased important individuals References to going home or similar themes Respiration with mandibular movement (positive LR 10, 95% CI 9. 110. 9) Cheyne-Stoke breathing (positive LR 12. 4, 95% CI 10. 8 -13. 9) Apnea Hyperextension of the neck (postive LR 7. 3, 95% CI 6. 7 -8) Grunting of the vocal cords (positive LR 11. 8, 95% CI 10. 3 -13. 4) Noisy breathing, pooling of airway secretions — “death rattle” (positive LR 9, 95% CI 8. 1 -9. 8) Mottling and cooling of the skin due to vasomotor instability with venous pooling, particularly tibial Dropping blood pressure with rising, weak pulse Pulselessness of the radial artery (positive LR 15. 6, 95% CI 13. 7 -17. 4) Mental status changes (terminal delirium, terminal restlessness, agitation, coma) Decreased response to verbal stimuli (positive LR 8. 3, 95% CI 7. 7 -9) Decreased response to visual stimuli (positive LR 6. 7, 95% CI 6. 3 -7. 1) Bicanovsky L. Comfort Care: Symptom Control in the Dying. In: Palliative Medicine, Walsh D, Caraceni AT, Fainsinger R, et al (Eds), Saunders, Philadelphia 2009. Oncologist. 2014; 19(6): 681 Cancer. 2015; 121(6): 960. 27

Physical Findings Cheyne-Stoke Breathing 28

VII GOALS-OF-CARE 29

Introduce Everyone • Acknowledge – – – • Introduce – • “We have about 30 minutes to talk today as a group. I would be happy to spend more time with you afterward if needed. ” Explanation – • “Let’s go around the room and on the telephone so everyone knows who is who. My name is [x], and my role is [y]. Duration – • “Nice to meet you. ” “Great to see you again. ” Not: “You look great” (the patient might not feel great !) “The purpose of this meeting is to talk about the new information we have about your condition. ” Thank You – “Thank you all for taking the time to meet today. ” 30

REMAP the Plan of Care Step What you say or do Reframe why the status quo isn’t working. You may need to discuss serious news (e. g. a scan result) first. “Given this news, it seems like a good time to talk about what to do now. ” “We’re in a different place. ” Expect emotion and empathize. “It’s hard to deal with all this. ” “I can see you are really concerned about [x]. ” “Tell me more about that—what are you worried about? ” “Is it ok for us to talk about what this means? ” Map the future. “Given this situation, what’s most important for you? ” “When you think about the future, are there things you want to do? ” “As you think towards the future, what concerns you? ” Align with the patient’s values. “As I listen to you, it sounds the most important things are [x, y, z]. ” Plan medical treatments that match patient “Here’s what I can do now that will help you do those important things. What do you think about values. it? ” Expect questions about more curative treatment. “Here are the pros and cons of what you are asking about. Overall, my experience tells me that more [x] would do more harm than good at this point. It’s hard to say that though. ” “We’ve talked about wanting to conserve your energy for important things. One thing that can help Talk about services that would help before us is having a nurse come to your house to can help us adjust your medicines so you don’t have to introducing hospice come in to clinic so often. The best way I have to do that is to call hospice, because they can provide this service for us, and more. ” vitaltalk. org 31

Reframe Why the Status Quo Isn’t Working You may need to discuss serious news (e. g. a scan result) first. “Given this news, it seems like a good time to talk about what to do now. ” “We’re in a different place. ” Cure • “Fix it”, healed • Treatment = cure Where they are mentally Delay Where they are clinically Die • Slow it down, “palliative treatment” • Treatment = not dying • There’s “nothing” left to do • No treatment = quitting 32

Expect Emotion and Empathize Tool Example Notes Naming (1) “It sounds/looks like you are scared / sad / frustrated” Naming the emotion will usually decrease the intensity of emotion Understandi “This helps me ng (<5) understand what you are thinking” Use to convey acknowledgement while avoiding implications that you understand “everything” Respecting “I can see you have (1 -2) really been trying to follow our instructions” Give the patient/family credit for what they have done, praise is a motivator Supporting “I will do my best to (1 -2) make sure you have what you need” Commit 100% of what you can commit to without committing to things beyond your control Exploring (∞) “Could you say more Open-beginning about what you mean statement with a when you say that…” focused end • Eye contact • Muscle of facial expression • Posture • Affect • Tone of voice • Hearing the whole patient • Your response www. vitaltalk. org/sites/default/files/quick-guides/NURSEfor. Vitaltalk. V 1. 0. pdf Academic Medicine 2014; vol 89 (8): 1108 -1112 33

Map the Future “Given this situation, what’s most important for you? ” “When you think about the future, are there things you want to do? ” “As you think towards the future, what concerns you? ” Care to Cure • Probabilities • Side effects • Disease > Patient Care to Slow Progression Care to Allow Death • Time • Side effects • Disease > Patient • Reframing concept of disease care • Patient > Disease 34

Align With the Patient’s Values Decisional Patient • • Acknowledge and address patient and family emotions (empathy). Explore and focus on patient values and treatment preferences: – “As I listen to you, it sounds the most important things are [x, y, z]. ” Chest. 2008 Oct; 134(4): 835– 843 Non-Decisional Patient • • • Acknowledge and address family emotions (empathy). Explore family’s understanding of patient values and focus patient’s values on treatment preferences. Explain the principle of surrogate decision making to the family – the goal of surrogate decision making is to determine what the patient would want if the patient were able to participate. 35

Plan Medical Treatments that Match Patient Values “Here’s what I can do now that will help you do those important things. What do you think about it? ” Parentalism “Doctor Decides” “Would it be helpful if I made a recommendation? ” Autonomy “Patient/Family Decides” “Would it be helpful to have some time to talk with your family about this? ” 36

Plan Medical Treatments that Match Patient Values • • • Identify what is important to and priorities for the patient. Identify what they hope to achieve by receiving care. Identify what they fear will happen because of the disease. Plan Medical Treatments • Representation of the goals of care in the form of – Documentation • • • – Orders • • POLST Code Status – Medications – Services • • • National Committee for Quality Assurance: Goals to Care Advance Directive Living Will HCPOA Starting and stopping Social Work Chaplaincy Hospice Home Health 37

Expect Questions About More Curative Treatment “Here are the pros and cons of what you are asking about. Overall, my experience tells me that more [x] would do more harm than good at this point. It’s hard to say that though. " “The treatment has become worse than the disease. ” No Tx No Testing Tx • Testing • Doc No Doc Death 38

Talk About Services that Would Help Before Introducing Hospice • “We’ve talked about wanting to conserve your energy for important things. One thing that can help us is having a nurse come to your house to can help us adjust your medicines so you don’t have to come in to clinic so often. The best way I have to do that is to call hospice, because they can provide this service for us, and more. ” It's a service not a sentence (it's hospice not house arrest). Hospice is a program, not a place. Patient's with an estimated life-span of less than six months who are no longer candidates for curative therapy are eligible for services. Patient's requiring active symptom management, who are too tenuous to move, or are actively dying may be eligible for in-patient hospice. In these patients death is expected within 5 days. 39

VIII END-OF-LIFE CARE 40

Guidelines for Physicians Providing Comfort Care for Hospitalized Patients Who Are Near the End of Life Blinderman CD, Billings JA. N Engl J Med 2015; 373: 2549 -2561 41

Case • 83 -year old female patient with end-stage COPD is on comfort-only measures. She is nonverbal but appears agitated, with her neck extended at the head, tachypnea, use of accessory muscles, and tachypnea. She is on 4 L/min NC and is opiate naïve. The patient is being cared for by a nurse who just graduated and is paging you for orders as the patient just lost IV access. 42

Question What is the most appropriate course? A. Morphine 1 mg intramuscular Q 6 H PRN dyspnea B. Lorazepam 1 mg sublingually Q 1 H PRN agitation C. Oxycodone concentrate 10 mg sublingually Q 1 H PRN dyspnea D. Intubation and mechanical ventilation 43

Answer What is the most appropriate course? A. Morphine 1 mg intramuscular Q 6 H PRN dyspnea B. Lorazepam 1 mg sublingually Q 1 H PRN agitation C. Oxycodone concentrate 10 mg sublingually Q 1 H PRN dyspnea D. Intubation and mechanical ventilation 44

National Cancer Institute: Last Days of Life (PDQ®) • “Many patients fear uncontrolled pain during the final hours of life, while others (including family members and some health care professionals) express concern that opioid use may hasten death. Experience suggests that most patients can obtain pain relief during the final hours of life and that very high doses of opioids are rarely indicated. Several studies refute the fear of hastened death associated with opioid use. In several surveys of high-dose opioid use in hospice and palliative care settings, no relationship between opioid dose and survival was found. ” • The goal is to provide symptom management, specifically of pain and dyspnea, not to cause death. www. cancer. gov/cancertopics/pdq/supportivecare/lasthours/healthprofessional/page 2 45

Basics: Pain and Dyspnea • First line for alleviation of pain and dyspnea is opiates: – Morphine IV 4 -8 mg Q 15 MIN PRN – Hydromorphone IV 0. 6 -1 mg Q 15 MIN PRN – Fentanyl IV 50 -100 mcg Q 10 MIN PRN • Second line for alleviation of anxiety due to total pain: – Lorazepam 0. 5 -2 mg IV Q 2 H PRN • Delirium should be managed with haloperidol 0. 5 mg IV Q 30 MIN PRN 46

Continuous Opioid Infusions • If the patient has been receiving opiates calculate rate based on total dosage in the past 24 hours. • If this is an acute change, consider one of the following: – Fentanyl start at 25 mcg/hr – Hydromorphone start at 0. 3 mg/hr – Morphine start at 2 mg/hr • Titrate a continuous infusion rate every 8 hours by the dosage of PRN pushes given in the past 8 hours, divided by 8. 47

Case • 72 -year-old male with metastatic pancreatic cancer, admitted for pain control. • Patient has been on rapidly escalating doses of morphine. He is delirious. The weight of his sheets appear to be painful, in his lucid moments he weeps. In the past 24 hours he developed intermittent jerking of his limbs. 48

Question What is happening to the patient? A. B. C. D. Terminal agitation / delirium Undertreated terminal malignant pain Opiate-induced hyperalgesia Status epilepticus 49

Answer What is happening to the patient? A. B. C. D. Terminal agitation / delirium Undertreated terminal malignant pain Opiate-induced hyperalgesia Status epilepticus 50

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 most often in the setting of renal failure. 51 www. mypcnow. org/blank-h 5 muh

Case • 57 -year-old female with stage IV ovarian cancer with carcinomatosis peritonei notes nausea, bloating, and abdominal discomfort. This has led to associated anorexia and insomnia. She is having flatus but no bowel movements for 72 hours. No fever and no urinary symptoms. • She takes MSSR 15 mg PO TID at home and has been at this dose with regular bowel movements daily using senna and Mira. Lax. • Vital signs are stable. Elevated BUN and creatinine on labs. KUB is shows non-specific bowel gas pattern and no significant stool burden. UA is negative for infection. 52

Question What is happening to the patient? A. B. C. D. Cancer pain crisis Ileus Opiate-induced constipation Partial malignant bowel obstruction 53

Answer What is happening to the patient? A. B. C. D. Cancer pain crisis Ileus Opiate-induced constipation Partial malignant bowel obstruction 54

Malignant Bowel Obstruction Partial or Complete • Prevalence 5 -25% in ovarian carcinoma or colorectal cancer, in advanced ovarian cancer frequency up to 42%. • Imaging of choice: CT abdomen and pelvis with contrast (ACR Appropriateness Criteria Rating 9) followed by without contrast (ACR 7). X-ray abdomen and pelvis is ACR 5. www. cancer. gov/resources-for/hp/education/epeco/self-study/module-3 e. pdf acsearch. acr. org/docs/69476/Narrative/ 55

Management Inoperable • Venting gastrostomy is definitive management. • Dexamethasone 6 -16 mg IV may bring about resolution of bowel obstruction. • Dexamethasone + ranitidine = octreotide • Dexamethasone + octreotide + metoclopramide – Malignant Bowel Obstruction (MBO): Pain and nausea improved within 24 hours, PO intake within 48 hours – Malignant Bowel Dysfunction (MBD): 84% of patients had improved pain and nausea within 24 hours, PO intake within 1 -4 days Support Care Cancer. 2009 Dec; 17(12): 1463 -8 Am J Hosp Palliat Care. 2016 May; 33(4): 407 -10 56

Case • 64 -year-old female with end-stage COPD and HFr. EF was admitted with acute respiratory failure. She had already completed a POLST and was explicit that she is DNAR and did not wish to be placed on invasive positive pressure ventilation. She has elected comfort measures. • On admission kidney and liver function were normal. She is on nasal cannula 4 L/min. She has been given sublingual doses of morphine for dyspnea and is still taking her home dose of scheduled clonazepam. • In the last 12 hours she has been observed speaking and seeing her deceased parents and brother. She appears comforted and happy regarding her perception of their presence. 57

Question What is happening to the patient? A. B. C. D. Withdrawal End-of-life dreams and visions Opiate neurotoxicity Benzodiazepine-induced delirium 58

Answer What is happening to the patient? A. B. C. D. Withdrawal End-of-life dreams and visions Opiate neurotoxicity Benzodiazepine-induced delirium 59

End-of-Life Dreams and Visions (ELDV) Carefully distinguish between terminal agitation and ELDV • Most common dreams/visions include deceased friends/relatives and living friends/relatives. • Dreams/visions featuring the deceased were significantly more comforting than those of the living, living and deceased combined, and other people and experiences. • As death approaches, comforting dreams/visions of the deceased became more prevalent. J Palliat Med. 2014 Mar; 17(3): 296 -303 60

Case • 89 -year-old male with HFp. EF and chronic kidney disease stage V is at home on hospice. He has gradually been less active, more dependent for activities of daily living, sleeping more, speaking and eating less. You are the covering hospice physician when you get a telephone call that the patient is awake, alert, showing more energy and conversing more than he has in weeks. 61

Question What should you tell the family? A. Continue hospice and educate them about end-oflife burst of energy. B. Continue hospice and treat the patient for terminal agitation. C. Discharge from hospice as the patient is improving. D. Discharge from hospice and admit to the hospital for work-up. 62

Answer What should you tell the family? A. Continue hospice and educate them about end-of -life burst of energy. B. Continue hospice and treat the patient for terminal agitation. C. Discharge from hospice as the patient is improving. D. Discharge from hospice and admit to the hospital for work-up. 63

End-of-Life Burst of Energy • Some patients will have a sudden burst of energy approximately 48 hours before death. This is not a sign of improvement but may actually be a marker of active dying. www. niagarahospice. org/documents/final_journey. pdf 64

THANK YOU! QUESTIONS? 65