1. Critical Palliative Care: End-of-Life Care
Michael 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
Telephone
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. Disease Trajectories
bioethicsarchive.georgetown.edu/pcbe/images/living_well_graph.gif

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

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

12. V
PALLIATIVE CARE

13. 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.
palliativedoctors.org/palliative/care

14. 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.

15. Mortalopoly and Morbidopoly
DIAGNOSIS $35
With 1 Hospitalization $175.
With 2 Hospitalizations
With 3 Hospitalizations
With 4 Hospitalizations
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.
TITLE DEED
PALLIATIVE PLACE
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
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.
Curative or Palliative Treatment
Disease Management of Life Limiting Illness
Untreatable disease
End of Life or Hospice Care
Symptom Management and Comfort Care
Symptom burden increases due to treatable disease burden
Symptom burden despite or due to disease modification
Clin Geriatr Med 2013; 29:1–29
No longer desiring treatment
Palliative Care
Symptom Management of Life Limiting Illness

17. Palliative Care and Hospice
The board certification is Hospice and Palliative Medicine
Palliative Care
Years
Months
Hospice
Weeks
Days
J Pain Symptom Manage 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

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 Hours Days Weeks Months
His wife asks you “How long does he have?”
Hours
Days
Weeks
Months

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

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
Normal
90%
Normal activity & work Some evidence of disease
80%
Normal activity with Effort Some evidence of disease
Normal or reduced
70%
Reduced
Unable Normal Job/Work Significant disease
Months
60%
Unable hobby/house work Significant disease
Occasional assistance necessary
Full or Confusion
Weeks-Months
50%
Mainly Sit/Lie
Unable to do any work Extensive disease
Considerable assistance required
Weeks
40%
Mainly in Bed
Unable to do most activity Extensive disease
Mainly assistance
Full or Drowsy +/- Confusion
30%
Totally Bed Bound
Unable to do any activity Extensive disease
Total Care
Days-Weeks
20%
Minimal to sips
Days
10%
Mouth care only
Drowsy or Coma +/- Confusion 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
absent 42
30 to 60% 16
≥70% 3
Cancer 2015; 3914.

26. 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

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 )
Drooping of the nasolabial fold (positive LR 8.3, 95% CI )
Loss of ability to close eyes (positive LR 13.6, 95% CI )
Nonreactive pupils (positive LR 16.7, 95% CI )
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 )
Cheyne-Stoke breathing (positive LR 12.4, 95% CI )
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 )
Noisy breathing, pooling of airway secretions — “death rattle” (positive LR 9, 95% CI )
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 )
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 )
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. Cheyne-Stoke Breathing
Physical Findings
Cheyne-Stoke Breathing

29. VII
GOALS-OF-CARE

30. Introduce Everyone Acknowledge Introduce Duration Explanation
“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
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
Delay
Slow it down, “palliative treatment”
Treatment = not dying
Die
There’s “nothing” left to do
No treatment = quitting
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
Understanding (<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
Academic Medicine 2014;vol 89 (8):

34. Care to Slow Progression
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
Care to Allow Death
Reframing concept of disease care
Patient > Disease

35. Align With the Patient’s Values
Decisional Patient
Non-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].”
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 Oct; 134(4): 835–843

36. 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?”

37. 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.
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
“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.”
Testing
Doc Tx
No Tx
No Testing
No Doc
Death

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
Table 2 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:

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 Morphine 1 mg intramuscular Q6H PRN dyspnea
What is the most appropriate course?
Morphine 1 mg intramuscular Q6H PRN dyspnea
Lorazepam 1 mg sublingually Q1H PRN agitation
Oxycodone concentrate 10 mg sublingually Q1H PRN dyspnea
Intubation and mechanical ventilation

44. Answer Morphine 1 mg intramuscular Q6H PRN dyspnea
What is the most appropriate course?
Morphine 1 mg intramuscular Q6H PRN dyspnea
Lorazepam 1 mg sublingually Q1H PRN agitation
Oxycodone concentrate 10 mg sublingually Q1H PRN dyspnea
Intubation and mechanical ventilation

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.

46. Basics: Pain and Dyspnea
First line for alleviation of pain and dyspnea is opiates:
Morphine IV 4-8 mg Q15MIN PRN
Hydromorphone IV mg Q15MIN PRN
Fentanyl IV mcg Q10MIN PRN
Second line for alleviation of anxiety due to total pain:
Lorazepam 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.
This means frequent assessment by the nurse and reassessment by the physician during the day.

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 Terminal agitation / delirium
What is happening to the patient?
Terminal agitation / delirium
Undertreated terminal malignant pain
Opiate-induced hyperalgesia
Status epilepticus

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

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.

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 Cancer pain crisis Ileus Opiate-induced constipation
What is happening to the patient?
Cancer pain crisis
Ileus
Opiate-induced constipation
Partial malignant bowel obstruction

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

55. 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.
acsearch.acr.org/docs/69476/Narrative/

56. Management Venting gastrostomy is definitive 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 Dec;17(12):1463-8
Am J Hosp Palliat Care May;33(4):407-10
Support Care Cancer Dec;17(12):1463-8
Am J Hosp Palliat Care 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 Withdrawal End-of-life dreams and visions
What is happening to the patient?
Withdrawal
End-of-life dreams and visions
Opiate neurotoxicity
Benzodiazepine-induced delirium

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

60. 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 Mar;17(3):

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

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

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.

65. THANK YOU!
QUESTIONS?