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Critical Palliative Care: End-of-Life Care

The document discusses critical aspects of palliative and end-of-life care, including definitions, objectives, and techniques for managing patients with terminal illnesses. It emphasizes the importance of goals-of-care conversations and outlines the differences between palliative care, hospice, and comfort care. Additionally, it provides guidance on end-of-life prognostication and communication strategies for healthcare providers.

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1 Critical Palliative Care: End-of-Life CareMichael Aref MD, PhD, FACP, FHM, FAAHPM Assistant Medical Director of Palliative Medicine Clinical Assistant Professor, Department of Medicine, UICOM-UC
2 I DISCLOSURES
3 Disclosures • I have no relevant financial disclosures
4 II CONTACT INFORMATION
5 Contact Information • Twitter @MikeAref • Email michael.aref@carle.com • Telephone 217.383.6744 • Mail Palliative Care South Clinic 6 611 West Park Street Urbana, IL 61801
6 III OBJECTIVES
7 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.
8 IV END-OF-LIFE
9 bioethicsarchive.georgetown.edu/pcbe/images/living_well_graph.gif Disease Trajectories
10 End-of-Life Concepts Years • Terminally Ill / End-of- Life Care (< 6 months)Months • Imminent Death (< 2 weeks) Weeks • Actively Dying (< 3 days) Days Life Expectancy J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.
11 High-Quality End-of-Life Care • Begin goals-of-care conversations NOW…Years Months • …to provide high-quality end-of-life care LATER!Weeks Days Life Expectancy J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.
12 V PALLIATIVE CARE
13 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. • 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. WHO • CAPC • AAHPM www.who.int/cancer/palliative/denition/en/ www.capc.org/about/palliative-care/ palliativedoctors.org/palliative/care
14 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. More than “there’s nothing left to do” Doyle D, Oxford Textbook of Palliative Medicine, 3 ed.
15 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 $200K. each Hospice, $0. plus (or minus) 4 hospitalizations. If a patient owns ALL the Symptoms of any Color Group, the opiates are Doubled on Uncontrolled Symptoms in that group. Mortalopoly and Morbidopoly • Palliative care is a philosophy of care for seriously ill patients, it is – NOT a place – NOT a status – NOT limited by curative intent
16 Palliative Care and Hospice Clin Geriatr Med 2013; 29:1–29 www.nationalconsensusproject.org www.nia.nih.gov/health/publication/e nd-life-helping-comfort-and- care/providing-comfort-end-life Palliative Care Symptom Management of Life Limiting Illness Curative or Palliative Treatment Disease Management of Life Limiting Illness Symptom burden despite or due to disease modification End of Life or Hospice Care Symptom Management and Comfort Care Untreatable disease No longer desiring treatment Symptom burden increases due to treatable disease burden 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.
17 Palliative Care and Hospice • Palliative Care Years Months • Hospice Weeks Days The board certification is Hospice and Palliative Medicine J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.
18 VI PROGNOSTICATION
19 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
20 Death Does NOT Respect Age www.medicine.ox.ac.uk/bandolier/booth/Risk/dyingage.html
21 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.
22 Question A. Hours B. Days C. Weeks D. Months His wife asks you “How long does he have?”
23 Answer A. Hours B. Days C. Weeks D. Months His wife asks you “How long does he have?”
24 Palliative Performance Scale (PPS) PPS Level Ambulation Activity & Evidence of Disease Self-Care Intake Conscious Level Life Expectancy 100% Full Normal activity & work No evidence of disease Full Normal Full 90% Full Normal activity & work Some evidence of disease Full Normal Full 80% Full Normal activity with Effort Some evidence of disease Full Normal or reduced Full 70% Reduced Unable Normal Job/Work Significant disease Full Normal or reduced Full Months 60% Reduced Unable hobby/house work Significant disease Occasional assistance necessary Normal or reduced Full or Confusion Weeks- Months 50% Mainly Sit/Lie Unable to do any work Extensive disease Considerable assistance required Normal or reduced Full or Confusion Weeks 40% Mainly in Bed Unable to do most activity Extensive disease Mainly assistance Normal or reduced Full or Drowsy +/- Confusion Weeks 30% Totally Bed Bound Unable to do any activity Extensive disease Total Care Normal or reduced Full or Drowsy +/- Confusion Days-Weeks 20% Totally Bed Bound Unable to do any activity Extensive disease Total Care Minimal to sips Full or Drowsy +/- Confusion Days 10% Totally Bed Bound Unable to do any activity Extensive disease Total Care Mouth care only Drowsy or Coma +/- Confusion Days 0% Death - - - Victoria Hospice Society
25 3-Day Mortality Rate Estimates PPS Drooping of nasolabial fold, present/absent 3-day mortality rate (%) ≤ 20% present 94 ≤ 20% absent 42 30 to 60% 16 ≥70% 3 Cancer 2015; 391
26 Syndrome of Imminent Death • 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 24 hours to 14 days www.mypcnow.org/blank-iwkmp
27 Identifying the Actively Dying Patient Profound progressive weakness 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 Changes in respiratory rate and pattern Respiration with mandibular movement (positive LR 10, 95% CI 9.1- 10.9) 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.
28 Physical Findings Cheyne-Stoke Breathing
29 VII GOALS-OF-CARE
30 Introduce Everyone • Acknowledge – “Nice to meet you.” – “Great to see you again.” – Not: “You look great” (the patient might not feel great!) • Introduce – “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 – “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 – “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.”
31 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 values. “Here’s what I can do now that will help you do those important things. What do you think about 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.” 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.” vitaltalk.org
32 Reframe Why the Status Quo Isn’t Working Cure •“Fix it”, healed •Treatment = cure Delay •Slow it down, “palliative treatment” •Treatment = not dying Die •There’s “nothing” left to do •No treatment = quitting 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.” Where they are mentally Where they are clinically
33 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 ng (<5) “This helps me understand what you are thinking” Use to convey acknowledgement while avoiding implications that you understand “everything” Respecting (1-2) “I can see you have really been trying to follow our instructions” Give the patient/family credit for what they have done, praise is a motivator Supporting (1-2) “I will do my best to 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 about what you mean when you say that…” Open-beginning statement with a 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/NURSEforVitaltalkV1.0.pdf Academic Medicine 2014;vol 89 (8): 1108-1112
34 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 •Time •Side effects •Disease > Patient Care to Allow Death •Reframing concept of disease care •Patient > Disease
35 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].” 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. Chest. 2008 Oct; 134(4): 835–843
36 Plan Medical Treatments that Match Patient Values 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?” “Here’s what I can do now that will help you do those important things. What do you think about it?”
37 Plan Medical Treatments that Match Patient Values 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 • Advance Directive • Living Will • HCPOA – Orders • POLST • Code Status – Medications • Starting and stopping – Services • Social Work • Chaplaincy • Hospice • Home Health National Committee for Quality Assurance: Goals to Care
38 Expect Questions About More Curative Treatment •Testing •DocTx •Testing •DocTx •Testing •DocTx No Tx No Testing No Doc Death “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.”
39 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.
40 VIII END-OF-LIFE CARE
41 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
42 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.
43 Question A. Morphine 1 mg intramuscular Q6H PRN dyspnea B. Lorazepam 1 mg sublingually Q1H PRN agitation C. Oxycodone concentrate 10 mg sublingually Q1H PRN dyspnea D. Intubation and mechanical ventilation What is the most appropriate course?
44 Answer A. Morphine 1 mg intramuscular Q6H PRN dyspnea B. Lorazepam 1 mg sublingually Q1H PRN agitation C. Oxycodone concentrate 10 mg sublingually Q1H PRN dyspnea D. Intubation and mechanical ventilation What is the most appropriate course?
45 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/page2
46 Basics: Pain and Dyspnea • First line for alleviation of pain and dyspnea is opiates: – Morphine IV 4-8 mg Q15MIN PRN – Hydromorphone IV 0.6-1 mg Q15MIN PRN – Fentanyl IV 50-100 mcg Q10MIN PRN • Second line for alleviation of anxiety due to total pain: – Lorazepam 0.5-2 mg IV Q2H PRN • Delirium should be managed with haloperidol 0.5 mg IV Q30MIN PRN
47 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.
48 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.
49 Question A. Terminal agitation / delirium B. Undertreated terminal malignant pain C. Opiate-induced hyperalgesia D. Status epilepticus What is happening to the patient?
50 Answer A. Terminal agitation / delirium B. Undertreated terminal malignant pain C. Opiate-induced hyperalgesia D. Status epilepticus What is happening to the patient?
51 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. www.mypcnow.org/blank-h5muh
52 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 MiraLax. • 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.
53 Question A. Cancer pain crisis B. Ileus C. Opiate-induced constipation D. Partial malignant bowel obstruction What is happening to the patient?
54 Answer A. Cancer pain crisis B. Ileus C. Opiate-induced constipation D. Partial malignant bowel obstruction What is happening to the patient?
55 Malignant Bowel Obstruction • 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. Partial or Complete www.cancer.gov/resources-for/hp/education/epeco/self-study/module-3/module-3e.pdf acsearch.acr.org/docs/69476/Narrative/
56 Management • 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 Inoperable Support Care Cancer. 2009 Dec;17(12):1463-8 Am J Hosp Palliat Care. 2016 May;33(4):407-10 Support Care Cancer. 2009 Dec;17(12):1463-8 Am J Hosp Palliat Care. 2016 May;33(4):407-10
57 Case • 64-year-old female with end-stage COPD and HFrEF 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.
58 Question A. Withdrawal B. End-of-life dreams and visions C. Opiate neurotoxicity D. Benzodiazepine-induced delirium What is happening to the patient?
59 Answer A. Withdrawal B. End-of-life dreams and visions C. Opiate neurotoxicity D. Benzodiazepine-induced delirium What is happening to the patient?
60 End-of-Life Dreams and Visions (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. Carefully distinguish between terminal agitation and ELDV J Palliat Med. 2014 Mar;17(3):296-303
61 Case • 89-year-old male with HFpEF 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.
62 Question 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. What should you tell the family?
63 Answer 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. What should you tell the family?
64 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
65 THANK YOU! QUESTIONS?

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Critical Palliative Care: End-of-Life Care

  • 1.
    1 Critical Palliative Care: End-of-LifeCareMichael Aref MD, PhD, FACP, FHM, FAAHPM Assistant Medical Director of Palliative Medicine Clinical Assistant Professor, Department of Medicine, UICOM-UC
  • 2.
  • 3.
    3 Disclosures • I haveno relevant financial disclosures
  • 4.
  • 5.
    5 Contact Information • Twitter @MikeAref •Email michael.aref@carle.com • Telephone 217.383.6744 • Mail Palliative Care South Clinic 6 611 West Park Street Urbana, IL 61801
  • 6.
  • 7.
    7 Objectives • Define terminalillness, 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.
  • 8.
  • 9.
  • 10.
    10 End-of-Life Concepts Years • TerminallyIll / End-of- Life Care (< 6 months)Months • Imminent Death (< 2 weeks) Weeks • Actively Dying (< 3 days) Days Life Expectancy J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.
  • 11.
    11 High-Quality End-of-Life Care •Begin goals-of-care conversations NOW…Years Months • …to provide high-quality end-of-life care LATER!Weeks Days Life Expectancy J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.
  • 12.
  • 13.
    13 Definitions • Palliative careis 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. WHO • CAPC • AAHPM www.who.int/cancer/palliative/denition/en/ www.capc.org/about/palliative-care/ palliativedoctors.org/palliative/care
  • 14.
    14 Sufferology • The areaof 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. More than “there’s nothing left to do” Doyle D, Oxford Textbook of Palliative Medicine, 3 ed.
  • 15.
    15 DIAGNOSIS $35 With 1Hospitalization $175. With 2 Hospitalizations 500. With 3 Hospitalizations 1100. With 4 Hospitalizations 1300. With Hospice $1500. Mortality Value $175 Hospitalizations cost $200K. each Hospice, $0. plus (or minus) 4 hospitalizations. If a patient owns ALL the Symptoms of any Color Group, the opiates are Doubled on Uncontrolled Symptoms in that group. Mortalopoly and Morbidopoly • Palliative care is a philosophy of care for seriously ill patients, it is – NOT a place – NOT a status – NOT limited by curative intent
  • 16.
    16 Palliative Care andHospice Clin Geriatr Med 2013; 29:1–29 www.nationalconsensusproject.org www.nia.nih.gov/health/publication/e nd-life-helping-comfort-and- care/providing-comfort-end-life Palliative Care Symptom Management of Life Limiting Illness Curative or Palliative Treatment Disease Management of Life Limiting Illness Symptom burden despite or due to disease modification End of Life or Hospice Care Symptom Management and Comfort Care Untreatable disease No longer desiring treatment Symptom burden increases due to treatable disease burden 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.
  • 17.
    17 Palliative Care andHospice • Palliative Care Years Months • Hospice Weeks Days The board certification is Hospice and Palliative Medicine J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.
  • 18.
  • 19.
    19 Admission and IncreasedMortality 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
  • 20.
    20 Death Does NOTRespect Age www.medicine.ox.ac.uk/bandolier/booth/Risk/dyingage.html
  • 21.
    21 Case • 46-year oldmale 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.
  • 22.
    22 Question A. Hours B. Days C.Weeks D. Months His wife asks you “How long does he have?”
  • 23.
    23 Answer A. Hours B. Days C.Weeks D. Months His wife asks you “How long does he have?”
  • 24.
    24 Palliative Performance Scale(PPS) PPS Level Ambulation Activity & Evidence of Disease Self-Care Intake Conscious Level Life Expectancy 100% Full Normal activity & work No evidence of disease Full Normal Full 90% Full Normal activity & work Some evidence of disease Full Normal Full 80% Full Normal activity with Effort Some evidence of disease Full Normal or reduced Full 70% Reduced Unable Normal Job/Work Significant disease Full Normal or reduced Full Months 60% Reduced Unable hobby/house work Significant disease Occasional assistance necessary Normal or reduced Full or Confusion Weeks- Months 50% Mainly Sit/Lie Unable to do any work Extensive disease Considerable assistance required Normal or reduced Full or Confusion Weeks 40% Mainly in Bed Unable to do most activity Extensive disease Mainly assistance Normal or reduced Full or Drowsy +/- Confusion Weeks 30% Totally Bed Bound Unable to do any activity Extensive disease Total Care Normal or reduced Full or Drowsy +/- Confusion Days-Weeks 20% Totally Bed Bound Unable to do any activity Extensive disease Total Care Minimal to sips Full or Drowsy +/- Confusion Days 10% Totally Bed Bound Unable to do any activity Extensive disease Total Care Mouth care only Drowsy or Coma +/- Confusion Days 0% Death - - - Victoria Hospice Society
  • 25.
    25 3-Day Mortality RateEstimates PPS Drooping of nasolabial fold, present/absent 3-day mortality rate (%) ≤ 20% present 94 ≤ 20% absent 42 30 to 60% 16 ≥70% 3 Cancer 2015; 391
  • 26.
    26 Syndrome of ImminentDeath • 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 24 hours to 14 days www.mypcnow.org/blank-iwkmp
  • 27.
    27 Identifying the ActivelyDying Patient Profound progressive weakness 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 Changes in respiratory rate and pattern Respiration with mandibular movement (positive LR 10, 95% CI 9.1- 10.9) 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.
  • 28.
  • 29.
  • 30.
    30 Introduce Everyone • Acknowledge –“Nice to meet you.” – “Great to see you again.” – Not: “You look great” (the patient might not feel great!) • Introduce – “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 – “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 – “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.”
  • 31.
    31 REMAP the Planof 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 values. “Here’s what I can do now that will help you do those important things. What do you think about 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.” 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.” vitaltalk.org
  • 32.
    32 Reframe Why theStatus Quo Isn’t Working Cure •“Fix it”, healed •Treatment = cure Delay •Slow it down, “palliative treatment” •Treatment = not dying Die •There’s “nothing” left to do •No treatment = quitting 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.” Where they are mentally Where they are clinically
  • 33.
    33 Expect Emotion andEmpathize 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 ng (<5) “This helps me understand what you are thinking” Use to convey acknowledgement while avoiding implications that you understand “everything” Respecting (1-2) “I can see you have really been trying to follow our instructions” Give the patient/family credit for what they have done, praise is a motivator Supporting (1-2) “I will do my best to 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 about what you mean when you say that…” Open-beginning statement with a 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/NURSEforVitaltalkV1.0.pdf Academic Medicine 2014;vol 89 (8): 1108-1112
  • 34.
    34 Map the Future “Giventhis 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 •Time •Side effects •Disease > Patient Care to Allow Death •Reframing concept of disease care •Patient > Disease
  • 35.
    35 Align With thePatient’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].” 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. Chest. 2008 Oct; 134(4): 835–843
  • 36.
    36 Plan Medical Treatmentsthat Match Patient Values 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?” “Here’s what I can do now that will help you do those important things. What do you think about it?”
  • 37.
    37 Plan Medical Treatmentsthat Match Patient Values 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 • Advance Directive • Living Will • HCPOA – Orders • POLST • Code Status – Medications • Starting and stopping – Services • Social Work • Chaplaincy • Hospice • Home Health National Committee for Quality Assurance: Goals to Care
  • 38.
    38 Expect Questions AboutMore Curative Treatment •Testing •DocTx •Testing •DocTx •Testing •DocTx No Tx No Testing No Doc Death “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.”
  • 39.
    39 Talk About Servicesthat 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.
  • 40.
  • 41.
    41 Guidelines for PhysiciansProviding Comfort Care for Hospitalized Patients Who Are Near the End of Life Blinderman CD, Billings JA. N Engl J Med 2015;373:2549-2561
  • 42.
    42 Case • 83-year oldfemale 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.
  • 43.
    43 Question A. Morphine 1mg intramuscular Q6H PRN dyspnea B. Lorazepam 1 mg sublingually Q1H PRN agitation C. Oxycodone concentrate 10 mg sublingually Q1H PRN dyspnea D. Intubation and mechanical ventilation What is the most appropriate course?
  • 44.
    44 Answer A. Morphine 1mg intramuscular Q6H PRN dyspnea B. Lorazepam 1 mg sublingually Q1H PRN agitation C. Oxycodone concentrate 10 mg sublingually Q1H PRN dyspnea D. Intubation and mechanical ventilation What is the most appropriate course?
  • 45.
    45 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/page2
  • 46.
    46 Basics: Pain andDyspnea • First line for alleviation of pain and dyspnea is opiates: – Morphine IV 4-8 mg Q15MIN PRN – Hydromorphone IV 0.6-1 mg Q15MIN PRN – Fentanyl IV 50-100 mcg Q10MIN PRN • Second line for alleviation of anxiety due to total pain: – Lorazepam 0.5-2 mg IV Q2H PRN • Delirium should be managed with haloperidol 0.5 mg IV Q30MIN PRN
  • 47.
    47 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.
  • 48.
    48 Case • 72-year-old malewith 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.
  • 49.
    49 Question A. Terminal agitation/ delirium B. Undertreated terminal malignant pain C. Opiate-induced hyperalgesia D. Status epilepticus What is happening to the patient?
  • 50.
    50 Answer A. Terminal agitation/ delirium B. Undertreated terminal malignant pain C. Opiate-induced hyperalgesia D. Status epilepticus What is happening to the patient?
  • 51.
    51 Opiate-Induced Hyperalgesia • Increasingsensitivity 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. www.mypcnow.org/blank-h5muh
  • 52.
    52 Case • 57-year-old femalewith 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 MiraLax. • 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.
  • 53.
    53 Question A. Cancer paincrisis B. Ileus C. Opiate-induced constipation D. Partial malignant bowel obstruction What is happening to the patient?
  • 54.
    54 Answer A. Cancer paincrisis B. Ileus C. Opiate-induced constipation D. Partial malignant bowel obstruction What is happening to the patient?
  • 55.
    55 Malignant Bowel Obstruction •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. Partial or Complete www.cancer.gov/resources-for/hp/education/epeco/self-study/module-3/module-3e.pdf acsearch.acr.org/docs/69476/Narrative/
  • 56.
    56 Management • Venting gastrostomyis 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 Inoperable Support Care Cancer. 2009 Dec;17(12):1463-8 Am J Hosp Palliat Care. 2016 May;33(4):407-10 Support Care Cancer. 2009 Dec;17(12):1463-8 Am J Hosp Palliat Care. 2016 May;33(4):407-10
  • 57.
    57 Case • 64-year-old femalewith end-stage COPD and HFrEF 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.
  • 58.
    58 Question A. Withdrawal B. End-of-lifedreams and visions C. Opiate neurotoxicity D. Benzodiazepine-induced delirium What is happening to the patient?
  • 59.
    59 Answer A. Withdrawal B. End-of-lifedreams and visions C. Opiate neurotoxicity D. Benzodiazepine-induced delirium What is happening to the patient?
  • 60.
    60 End-of-Life Dreams andVisions (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. Carefully distinguish between terminal agitation and ELDV J Palliat Med. 2014 Mar;17(3):296-303
  • 61.
    61 Case • 89-year-old malewith HFpEF 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.
  • 62.
    62 Question A. Continue hospiceand 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. What should you tell the family?
  • 63.
    63 Answer A. Continue hospiceand 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. What should you tell the family?
  • 64.
    64 End-of-Life Burst ofEnergy • 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
  • 65.