Caring for the Dead and Actively Dying

1. Caring for the Dead and Actively Dying Shellie N. Williams, M.D. University of Chicago Medical Center Assistant Professor of Medicine Section of Geriatrics and Palliative Medicine

2. April 13th Experience: ½ Group Pain Cases Review pain assessment and management principles 80 minutes ½ Group-2 rotations (60min) Sp Encounters 2 per group Each student has 15 min opportunity to interview; 10min feed back Cases: 1.Family meeting discuss goals of care 2. Death pronouncement and Notification (20Min) Full group debriefing

3. Schedule of Events 1-1:25 -->All 25 students:  25min review of afternoon activity, EOL communication slides, questions Separate:  1/2 group pain cases; 1/2 SP encounters 1:30-1:55 1st rotation SP encounters 2:00-2:25 2nd rotation SP encounters 2:30-2:50 Debriefing (2:50-3:00)10min break before switching to pain cases 3:00-3:25 1st rotation 3:30-3:50 2nd rotation 4-4:20 Debriefing Home by 4:25

4. Preparing for April 13th Review all these slides Review the Pain cases and Von Guten Pain article Wear professional attire, including white coat RELAX!

5. Objectives • Enhance EOL communication skills with patients and families. • Learn the skill of assessing patient’s goals of care. • Identify the difference of palliative care vs hospice • Identify steps in pronouncement of death • Recognize procedure for empathetic notification of death • Understand the procedural management of a patient after death: (organize family view, establish autopsy/organ donation, certification of death) • Gain increased knowledge of self care when caring for the dead.

6. Good EOL Communication Time Negotiate Relationship Empathy

7. Common Communications in EOL/Palliative Care Establishing goals of care Decisions about treatment options Discussion about progression of disease Decisions about care after death of loved one Discussion about imminent death Discussion of complication of disease or surgery Establishing Code Status

8. Communication in EOL/Palliative Care: • You will never have the right words 100% of time! • Ask open-ended questions • Give big picture (Layman, 2-3 major points) • Direct eye contact • Sit rather than stand • Acknowledging patient/family emotions • Empathy (listen, reassurance, respect) • Utilize support services (SW, chaplain, nurse)

9. Keys to Effective Communication:Decision Making • Patient ability to participate in conversation or establishment of surrogate to help in decisions • Diverting stress of decision making away from surrogate by: 1) focusing on patient’s wishes 2) physician providing recommendations • Clear understanding of prognosis • Clear understanding of treatment options • Discussion of patient values and quality of life wishes based on above information

10. Communicating Goals of Care: • Opportunity for shared-decision making process in establishing focus of care. • Particularly difficult in near the end of life situations. • Patients/Surrogates want an opportunity to discuss what is happening. “Big Picture .” • Can be emotionally volatile

11. 7 Steps Towards Goals of Care • Preparation for discussion • Introductions • Assess patient/family Understanding of condition & prognosis • Assess expectations of disease, hopes of life • Discussion of realistic goals of care (GOC) • Address emotions and listen empathetically • Establish /documentation GOC with additional focus on treatment priorities and plan. Von Guten , JAMA 2000

12. PREPARATION • Where: Quiet, comfortable environment, seated • Prepare: Review patient case and discuss with other health care members prior to meeting. • Establish who should be present at meeting. • What is the focus of the meeting? (Prioritize) • Assure time for discussion

13. INTRODUCTIONS • Introductions of family, health team and relation to patient. • Introduce ground-rules: 1. Clarify purpose of meeting 2. Establish how much the patient is comfortable discussing 3. Clarify primary decision maker & how to dessiminate information. • If limited relationship with patient/family gain knowledge: • Tell me about your father’s life before the hospitalization. • I know a lot about your father’s medical condition, can you share a bit about his life and values? • Has Mr. ___ ever discussed his wishes in the event of serious medical illness.

14. UNDERSTANDING • Establish patient’s/family’s understanding of condition, prognosis: • “What have the doctors told you? • “Tell me what your understanding of your disease is?” • “What is your understanding of the state of your disease?” • Clarify misunderstandings

15. EXPECTATIONS: • Time for patient/family to voice values & priorities • Stress that family focus on patient’s wishes not family’s • Examples: Given the severity of Mr. X’s illness, what is most important for us to focus? What makes life worth living for Mr. X? • What are hoping for, given the course of illness? What do they fear? • Ask family if similar situations where family member has expressed their wishes if in current medical state.

16. DISCUSSION: • Give BIG PICTURE of medical condition • Provide small pieces of information in Layman • Stress to family that the decisions are focused on the patient’s values/wishes not family’s • Stop and reassess understanding frequently • Allow individual questions and clarify misunderstanding.

17. DISCUSSION: • Non-consensus common. When exists: • Re-state goals: What would your father say if he could speak? **substituted judgment** • Give time for family to discuss privately and reconvene later. **Multiple meetings may be necessary • Utilize resources: Minister, SW, PCP, Nurse • Tell me more... • TIME and TRUST key

18. EMOTIONS: • Strong emotions are common and often due to uncertainty, remorse, loss, guilt. • Acknowledge responses: • “ You seem ________” (angry, bewildered, sad) • “Tell me more about how you’re feeling.” • Silence is OK • Give time: more than one meeting may be needed • Offer: tissues, time, other team members (chaplain, sw, nurse)

19. ESTABLISHING GOC/PLAN: • Summarize: Restate understanding of wishes and medical care consistent with wishes. • Focus on Positive Therapy: we will aggressively treat pain and comfort continuously. • Examples:“You are stating that your father would want to be comfortable and at home when the time comes. We will avoid therapies which are not beneficial and may inhibit this such as breathing tubes or recurrent hospitaliztions”

20. ESTABLISHING GOC/PLAN: • Give medical recommendations based on GOC • Focus on what we can do to help keep patient’s quality of life good for remainder of life. • Document: family spokesperson, line of ongoing communication, wishes stated. • Establish treatments not in line with GOC “We will continue maximal medical therapy focused on comfort; however, if he dies despite everything we will not use machines or chest compressions to prolong his death.”

21. What Do Families Want to Know? How long do we have? What if God intends a Miracle? Isn’t this giving up? Should we go to ____ Treatment Centers of America? Why didn’t Dr.____ find this earlier? If my pain gets bad will you help me end this? What would you do if you were in my shoes?

22. Words That Matter “I can’t predict a date, but given the course of most patients with your disease we are probably looking at days-weeks, weeks-months..” “If a miracle is what you believe and what your God intends it will happen no matter what, I can only recommend care for what is happening now.” “We are not holding back any care that will help or reverse this process.” “If we had other treatments, I would not hesitate to offer, but unfortunately we don’t.”

23. Words That Matter “I can’t imagine how difficult these decisions must be for you and your family. If it helps there is not a right or wrong answer, only what is most important to you in your life.” “Our medical team will support you thru every step of your illness, making sure to adjust any care and medications needed to alleviate your suffering.”

24. Goals of Care: Summary • A Process May require >1 meeting • Listen more than you talk • Silence is OK • Realize emotions run high and often just allowing time to express feelings helpful. • Reassure and listen • Give the same Respect and Time you’d want for your loved ones.

25. If we don’t continue with dialysis or do the breathing tube, Then aren’t we stopping all care?

26. PALLIATIVE/EOL CARE:Traditional View D E A T H Life Prolonging/Curative Care End of Life Care (Hospice) Disease Progression

27. PALLIATIVE/EOL CARE:Today Therapies to modify disease Hospice Palliative Care Presentation 6m Death Therapies to relieve suffering and/or improve quality of life Bereavement Care

28. Definition of Palliative Care • Interdisciplinary specialty that aims to relieve suffering and improve quality of life for patients with advanced illness. • Focus is pain relief, symptom management and support services. • Also called comfort care, supportive care, and symptom management • It is provided simultaneously with all other appropriate curative medical treatment.

29. Definition of Hospice Care • Interdisciplinary service for terminally ill patients/families when beyond cure. • Includes pain relief, symptom management and support services, physician and nursing services, in-home care, SW, therapy, and counseling. • To be eligible for hospice an individual must be diagnosed as terminally ill with a life expectancy of six months or less. • Settings: Home, Inpt Hospice, Nursing home

30. Hospice Qualifying Conditions • Advanced Respiratory disease • >10% weight loss/6 months • ALS (Lou Gherig's Disease) • Congestive heart failure • Neurological disorders • End-stage Alzheimer's disease • End-stage liver and/or kidney disease • Cancer

31. Palliative Symptom Management

32. Communication: Death Pronouncement & Notification Pronouncement of death Notification of death Empathetic Address of person notified Death Note Documentation

33. Death Notification: The Initial Step • Your team is on-call and you have just completed your 5th admit on the floor. You receive a page from 5 NE informing you of a 60 yo man with CAD and recent MI who is non-responsive and is DNPD (do no prolong death) code status. What do you want to know prior to ending the call?

34. Death Notification: The Initial Call from Nurse • Establish circumstances: Expected death? Family Present? • Confirm the documented code status? • Establish patient status: breathing, pulse? • Establish brief history of medical issues and any important events of day. • Establish if attending notified yet. • Confirm room#, name

35. Death Notification: The Initial Chart Interaction • Review of chart or speak with nurse prior to contacting survivors: • Reason admit • Past history • Important tests/diagnostics pending • Important events of day • Establish Probable causes of death • Note primary spokesperson/contact • Note if crucial family issues

36. SIGNS DEATH HAS OCCURRED:

37. Death Notification: Pronouncing Patient • IDENTIFY patient • Check response to name and touch of hand • Describe patient color and appearance of body • Note lack of response to verbal stimuli • Note size pupils and lack of reflex • Look/listen for absent breath sounds/chest movement • Lack of carotid pulse, heart tones • Note time of death pronouncement • Dignify the patient: cover body/secretions

38. Death Notification: Deciding to Call (Indirect) or Not? • Face-face notification always best. • Except: Family long distance, expectation of death, wish to know immediately. • Ask for support during call if uncomfortable: Nurse, chaplain, SW. • Never leave message of death on machine.

39. Notification of Death(Indirect) Telephone • Notify inpatient attending and/or speak with nurse prior to notification of family. • Identify yourself/relation to patient. • Establish their relationship to the patient and provide warning. • Deliver the message and allow silence to internalize info. • Offer words of comfort. • Ask if they have questions or concerns. • Ask if they’d like to come to hospital to see patient? • Ask if they are safe coming or need someone contacted? • Instruct to go to nurse’s station and establish timing. • Prepare the nurse with events and page instructions.

40. Death Notification: Family Care (Phone) • Establish quiet room • I am dr. ____ the intern. May I ask your relation to the patient? • “I have some bad news regarding mr./mrs. _________”. Is there someone you’d like present while we talk? • I’m sorry to have to give you the news, Mr/Mrs.________ DIED at ______ this eve. • Silence is golden. • Allow time to express reflective thoughts. • Reassure: this was not preventable, there was no suffering • Ask if there are additional family to provide support/to be contacted for them.

41. Notification of Death:(Face: Face) • You may want to ask the nurse or a chaplain to accompany you, particularly if family members are present. • Introduce yourself and role in care. • Empathetic statements are appropriate: a. I’m sorry for your loss…" b. This must be very difficult for you…" • Explain what you have come to do.  Tell the family they are welcome to stay, if they wish, while you examine their loved one. • Ask if they have any questions.  If you cannot answer questions, call someone who can, e.g., the attending, nurse. • Ask if you can contact anyone for them, e.g. other family, clergy; ask if there is anything else you can do.

42. Notification of Death: Family Care (Face:Face) • Ask if they would or wouldn’t want to stay • in room. Make arrangement to view. • Prepare the family regarding patient appearance and grant permission to touch patient • Request if additional needs: chaplain, family/religious rituals for body. • After address of immediate needs, discuss autopsy, organ donation • Arrange support for survivor after you leave. • Offer availability if additional questions or special rituals to be observed

43. What Families Need to Know Did he suffer? Was he in pain? Did they delay hospitalization too long? Was he alone? Can I touch him? Can I stay with him? What will I do without him? Special considerations: Religious rituals for body or in the room

44. Words That Matter If you have knowledge of the patient being peaceful or without s/s distress, state to family. Reiterate that death is something that can’t be predicted and this would have happened whether he’d come to hospital 1 week ago or today. Remind them they may hold hand or touch. Be aware of hospital policy for length of time body may stay on floor. Usually 3-6 hr Allow them to reflect on life together or digest info Offer to contact family, call chaplain or SW

45. Death Notification: Summary Verbal tone important Arrange supports Empathetic gestures: Tissue, Touch, allow time for reflection, offer chaplain Limited dialogue, Listen Ask if special rituals or needs of patient/family

46. After Death Care • Be respectful of the remains • Establish care for family • Establish donation and autopsy wishes • Establish with team timing for morgue transfer • Document death: chart, hospital form, certificate • Care for yourself: Discuss with colleague, exercise, state condolenscence

47. Death Note Documentation: • Date/time of pronouncement. • Called to pronounce_________, a ___ old male with ____________ disease died of ______. • Findings upon examination (no pulse, no heart tone, no respirations/chest rise &fall) • Document family/inpatient attending notified. • Document if coroner needed. • Document autopsy/donation wish. • Document special request/plan for view

48. Death Notification: Contact Medical Examiner • Hospitalized <24hr • Unusual circumstances • Death association with trauma • Death during/within 24 surgery or anesthesia

49. Death Notification:Autopsy • Establish with family during end of notification if autopsy wishes • If phone notification await family arrival on floor to discuss autopsy wishes • Document in death note • Check with charge nurse or unit secretary for death packet

50. Death Notification:Organ Donation • Uniform Anatomical Gift Act • Generally wishes documented on driver’s license, Notify family of donate wish. • Family may donate if not previously designated • Donation post-mortem of organs has few hours window • Post-mortem organs: skin, bone, cornea