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Caring for the Dead and Actively Dying

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Title: 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
  • 1-125 --gtAll 25 students  25min review of
    afternoon activity, EOL communication slides,
    questions
  • Separate  1/2 group pain cases 1/2 SP
    encounters
  • 130-155 1st rotation SP encounters
  • 200-225 2nd rotation SP encounters
  • 230-250 Debriefing
  • (250-300)10min break before switching to pain
    cases
  • 300-325 1st rotation
  • 330-350 2nd rotation
  • 4-420 Debriefing
  • Home by 425

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 patients 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 patients 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 fathers life before the
    hospitalization.
  • I know a lot about your fathers 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 patients/familys 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 patients wishes not
    familys
  • Examples Given the severity of Mr. Xs 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 patients values/wishes not familys
  • 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 youre 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 patients
    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?
  • Isnt this giving up?
  • Should we go to ____ Treatment Centers of
    America?
  • Why didnt 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 cant 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 dont.

23
Words That Matter
  • I cant 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 gt1 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 youd want for
    your
  • loved ones.

25
If we dont continue with dialysis or do the
breathing tube, Then arent 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
  • gt10 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
Common Symptoms at the End-of-Life Common Symptoms at the End-of-Life
Symptom Domain Symptoms
Physical Symptoms Pain Vomiting Dyspnea Nausea Anorexia Pruritis Fatigue Constipation Iatrogenic symptoms
Psychological Symptoms Depression Grief Anxiety Panic Post traumatic stress syndrome Agitation
Social Symptoms Isolation/loneliness Anger/hostility Financial issues and challenges (Institute of Medicine Covinsky ) Fear of being a burden to loved ones (Institute of Medicine)
Spiritual Symptoms Loss of meaning, Angst
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
Eyes Fixed Dilated Pupils Open Eyes
Heart No heart tones
Muscles Incontinent Stool Urine Limp muscles Stiff (Rigor Mortis gt4 hr) Jaw Falls open
Skin Pale color Waxen skin
Fluids Trickling body fluids
Lungs No breathing or Final chest rise
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 theyd like to come to hospital to see
    patient?
  • Ask if they are safe coming or need someone
    contacted?
  • Instruct to go to nurses 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 youd like present
    while we talk?
  • Im 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. Im 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 (FaceFace)
  • Ask if they would or wouldnt 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 cant be
    predicted and this would have happened whether
    hed 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 lt24hr
  • 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 drivers 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

51
Death Certificate
  • Permanent record of death
  • Lists in sequential order below
  • Immediate cause of death (End disease
    complication which lead to death (pulmonary
    embolus), not mechanism (respiratory arrest)
  • Conditions that resulted in the immediate cause
    of death (e.g., gunshot wound, DVT, lung ca)
  • Other significant medical conditions (e.g.,
    hypertension, atherosclerotic coronary artery
    disease, or diabetes)

52
Important for statistical data of disease and
allocation of funding for prevention. Important
to have 1 dx per line http//www.cdc.gov/nchs/dat
a/dvs/blue_form.pdf
53
PHYSICAN HEAL THYSELF!
  • Recognition that an important event has occurred
  • Discussing your feelings with colleagues and
    loved ones
  • Documenting your relationship with patient/family
    via condolence letter or call
  • Saying good-bye or praying for patient
  • Taking time for you exercise, painting, good
    coffee

54
Bibliography
  • Fast Facts and Concept 76 77 Telephone
    Notification of Death Part 1 and 2
    http//eperc.mcw.edu.
  • Von Guten, C. Ensuring Competency in EOL Care.
    JAMA 2000, 284 (24) 3051-57.
  • Marchand, Lucille, etal. Death Pronouncement
    Survival Tips for Residents. Am Fam Phy 1998
    (58) 284-85.
  • Conducting a Family Meeting Fast Facts and
    Concept 16 http//eperc.mcw.edu
  • Quill, Timothy. Initiating EOL Discussions with
    Seriously Ill Patients. JAMA 2000 284 (19)
    2502-2507.
  • Medical Certifier Instructions for US Standard
    Certificate of Death. November 2003 revision.
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