Transcript D E A T H - University of Chicago

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
April
th
13
• ½ Group
• Pain Cases
• Review pain assessment and
management principles
• 80 minutes
Experience:
• 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
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
Preparing for April 13th
• Review all these slides
• Review the Pain cases and Von Guten Pain
article
• Wear professional attire, including white coat
• RELAX!
Objectives
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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.
Good EOL Communication
Time
Negotiate
Relationship
Empathy
Common Communications in
EOL/Palliative Care
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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
Communication in EOL/
Palliative Care:
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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)
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
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
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.
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
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.
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
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.
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.
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
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)
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”
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.”
What Do Families Want to Know?
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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?
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.”
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.”
Goals of Care: Summary
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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.
If we don’t continue with
dialysis or do the breathing
tube, Then aren’t we
stopping all care?
PALLIATIVE/EOL CARE:
Traditional View
D
Life
Prolonging/Curative
Care
End of E
Life Care
(Hospice)
A
T
Disease Progression
H
PALLIATIVE/EOL CARE:
Today
Therapies to modify disease
Hospice
Palliative Care
Presentation
Therapies to relieve
suffering and/or
improve quality of life
6m Death
Bereavement
Care
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.
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
Hospice Qualifying Conditions
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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
Palliative Symptom Management
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
Communication: Death
Pronouncement &
Notification
Pronouncement of death
Notification of death
Empathetic Address of person notified
Death Note Documentation
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?
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
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
SIGNS DEATH HAS OCCURRED:
Eyes
Heart
Muscles
Skin
Fluids
Lungs
Fixed & Dilated Pupils
Open Eyes
No heart tones
Incontinent Stool & Urine
Limp muscles
Stiff (Rigor Mortis >4 hr)
Jaw Falls open
Pale color & Waxen skin
Trickling body fluids
No breathing or Final chest rise
Death Notification:
Pronouncing Patient
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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
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.
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.
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.
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.
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
What Families Need to Know
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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
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
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
After Death Care
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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
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
Death Notification:
Contact Medical Examiner
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Hospitalized <24hr
Unusual circumstances
Death association with trauma
Death during/within 24 surgery or
anesthesia
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
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
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)
Important
for
statistical
data of
disease and
allocation of
funding for
prevention.
Important to
have 1 dx
per line
http://www.cdc.gov
/nchs/data/dvs/blu
e_form.pdf
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
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.