The end pediatric death and dying
Download
1 / 60

The END: - PowerPoint PPT Presentation


  • 335 Views
  • Updated On :

The END: Pediatric Death and Dying Kevin M. Creamer M.D. Pediatric Critical Care Walter Reed AMC The Kobeyashi Maru? How we deal with death is at least as important as how we deal with life Agenda Death statistics EOL training In practice, from Resident’s and families’ perspectives

loader
I am the owner, or an agent authorized to act on behalf of the owner, of the copyrighted work described.
capcha
Download Presentation

PowerPoint Slideshow about 'The END:' - Gabriel


An Image/Link below is provided (as is) to download presentation

Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author.While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server.


- - - - - - - - - - - - - - - - - - - - - - - - - - E N D - - - - - - - - - - - - - - - - - - - - - - - - - -
Presentation Transcript
The end pediatric death and dying l.jpg

The END: Pediatric Death and Dying

Kevin M. Creamer M.D.

Pediatric Critical Care

Walter Reed AMC


The kobeyashi maru l.jpg
The Kobeyashi Maru?

How we deal with death is at least as important as how we deal with life


Agenda l.jpg
Agenda

  • Death statistics

  • EOL training

    • In practice, from Resident’s and families’ perspectives

  • Modes of death

    • CPR issues and outcomes

    • Family presence / support

    • DNR/ Withholding / Withdrawing support Spectrum

    • Brain Death

    • Organ Donation

  • The tough stuff


  • National pediatric data l.jpg
    National Pediatric Data

    • Roughly 80,000 pediatric deaths occur annually in US and Canada

      •  2/3 infants, and 2/3 of these deaths occur in the 1st month

    •  35,000 Pediatricians

      • Limits exposure to <3 / year

    Sahler, 2000, Pediatrics


    Pediatric resident s attitudes l.jpg
    Pediatric Resident’s Attitudes

    • Over 200 residents surveyed

      • Majority expressed discomfort toward issues of death and dying upon entering training that only somewhat improved over time

    • Developed unplanned behaviors to create a safe emotional distance

    • Parents perceived this distancing

      • Desired physicians to communicate openly, share grief, and provide comfort and support

    Vazirani, CCM, 2000,Schowalter, J Ped, 1970, Harper, J Reprod Med, 1994


    Narmc pediatric residents l.jpg
    NARMC Pediatric Residents

    • Surveyed 29 housestaff

      • 12 reported no EOL training thus far

      • 5 have discussed EOL issues in Continuity clinic

      • 1 answered correctly regarding distinction between withdrawal and limitation of support

    POOR

    1

    Disagree

    SUPERIOR

    5

    Agree


    End of life training almost non existent l.jpg
    End of Life training: Almost Non-existent

    • 1/3 of 115 medical residents never supervised during DNR discussion

    • 76% All surgery residencies nationwide had one or no ethics lecture in entire curriculum

    • ½ of 300 nurses reported lack of understanding of advanced directives

    Tulsky, Arch Int Med, 1996, Downing, Am J Surg, 1997, Crego, Am J Crit Care,1998


    More work to be done l.jpg
    More work to be done…

    • French PICU excluded 93.8% parents and 53.7% bedside nurses from EOL planning

      • Parents informed of result in 18.7% of cases

    • VA study >80% physicians unilaterally withheld or withdrew support (without knowledge or consent of patient/family)

    • US survey found 92% of physicians but only 59% of nurses felt ethical issues were well discussed with the families

      • 18% nurses reported that physicians were not at bedside at the time of withdrawal

    DeVictor, CCM,2001, Burns, CCM, 2001Asch, Am J Resp CCM, 1995


    Looking back at death l.jpg
    Looking Back at Death

    • Family telephone interviews after 150 deaths revealed

      • 19% wanted more information

      • 30% complained about poor communication

      • Many had persistent sleep, work, emotional issues

    • 1to2-Year Follow-up found

      • 46% report perceived conflict between family and medical staff

      • Need for better space for family discussions reported by 27%

    Cuthbertson, CCM, 2000, Abbott, CCM, 2001


    Mode of death in picu l.jpg
    Mode of death in PICU

    NICU study: Withdrawal 65%, Limit 8%, Full Tx 26%,

    Peds H/O review: DNR 64%, Full Tx 10%, died at home 40%

    Duncan,CCM(A), 2001, Wall, Pediatrics,1997, Klopfenstein, J Peds H O, 2001


    Death in the picu l.jpg
    Death in the PICU

    • Limitation of care thought appropriate in 12.5% PICU cases

      • 52.4% of all deaths and 100% of all non-cardiac surgical deaths were preceded by limitation of support

    • Reasoning included

      • Burden vs benefit 88%, Qualitative futility 83%, Preadmission Quality of life 50%

    • Nurses significantly more likely to desire limitation of care ( ex. Mech Vent, inotropes)

    Keenan, CCM, 2000


    Cpr outcomes l.jpg

    Pre-hospital:

    80 Pediatric Cardiac Arrests

    6 survived to discharge

    all had neurologic sequela

    In-hospital:

    154 codes Children’s Hosp. of Wisconsin

    Survival

    Ward 77%

    PICU 25%

    CPR Outcomes

    Innes, 1993, Arch Dis Child, Sichting 1997, CCM (A),

    Chan 2001, CCM (A) Schindler, 1996 NEJM


    More cpr outcomes l.jpg
    More CPR Outcomes

    • Schindler, 1996 NEJM

      • No survivors after more than two doses of epinephrine or resuscitation for longer than 20

    • PA Innes, 1993, Arch Dis Child

      • “no survivors from resuscitation attempts longer than 30 minutes’

    • A. Slonim and Pollack 1997 CCM (A)

      • Overall survival to discharge13.7%

      • <15 minutes 18.6%

      • 15-30 minutes 12.2%

      • > 30 minutes 5.6%


    Slide14 l.jpg
    CPR

    • “From the very beginning, it was not the intention of experts that CPR was to evolve as a routine at the time of death so as to include case of irreversible illness for which death was expected”

    • There is no obligation to allow or perform futile CPR

      • Even if the family demands it

    Weil, CCM, 2000, Luce, CCM 1995


    Family presence during code l.jpg
    Family Presence During Code

    • Pro

      • Families desire to be present

      • Helps with grieving

    • Con

      • Psychological trauma to witnesses

      • Performance anxiety

      • Fear of litigation


    Family presence data l.jpg

    Boie, Ann Emerg Med, 1999

    80.7% of 407 families surveyed said yes

    Meyers, J Emerg Nurs, 1998

    96% of 25 families who lost a family member said yes

    Hanson, J Emerg Nurs, 1992

    > 200 families surveyed

    >70% wanted to be there and staff agreed

    CPR committee reviewed performance

    no decrement with family present

    Ped Emerg Care, 1996

    allowed families in during procedure

    >90% of families and staff said they’d do it again

    Jarvis, Intens Crit Care Nurs, 1998

    89% of 60 PICU staff said yes

    Informal survey of 45 Pediatric Intensivist

    SCCM Feb 2000

    41/45 said yes to family presence

    Family Presence Data


    Slide17 l.jpg

    “They were there at the beginning of the life they should have the opportunity to be there at the end”

    O’Brien, Peds Emerg Care, 2002?


    Family presence during code18 l.jpg
    Family Presence During Code have the opportunity to be there at the end”

    • Physicians and Nurses at the scene make the call

    • Not for everyone

      • Belligerent/intoxicated family members

      • Cramped environment

    • Need a knowledgeable liaison with family

    • AHA PALS 2000 highly encourages Family presence


    Brain death l.jpg
    Brain Death have the opportunity to be there at the end”

    • Irreversible cessation of all functions of the entire brain, including the brainstem

    • Takes two attending physicians, at least one should be a neurologist or neurosurgeon

    • Takes two clinical exams separated by:

      • 48 hours (7days to 2 months)

      • 24 hours (2months to 1 year)

      • 12 hours ( > 1 year of age)

      • ?? (less than 7 days old)

    Lutz-Dettinger, Peds Clin NA, 2001


    Brain death prerequisites l.jpg
    Brain Death Prerequisites have the opportunity to be there at the end”

    • Known cause of coma, sufficient to explain the irreversible cessation of all brain function

    • Reversible causes of coma must be excluded:

      • Sedatives and neuromuscular blocking drugs

      • Hypothermia

      • Metabolic and endocrine disturbances:

        • Severe electrolyte disturbances

        • Severe hypo- or hyperglycemia

      • Uncontrolled hypotension

      • Surgically remediable intracranial conditions

      • Any other sign that suggests a potentially reversible cause of coma


    Clinical evaluation l.jpg
    Clinical Evaluation have the opportunity to be there at the end”

    • Absence of higher brain function

      • Comatose, unresponsive, no convulsions

    • Absence of brainstem function

      • Unreactive Pupils, Absent vestibulo-ocular, oculocephalic and corneal reflexes, no gag or cough,no change of heart rate with IV atropine or oculocardiac reflex

    • No respiratory control or respiratory movement (Apnea test)


    Confirmatory tests l.jpg
    " have the opportunity to be there at the end”Confirmatory" tests

    • Flat EEG for at least 30 min

    • Confirmation of absence of blood flow

      • Four-vessel contrast angiography or radionuclide imaging

      • Transcranial Doppler


    Brain scan no flow l.jpg
    Brain Scan: no flow have the opportunity to be there at the end”


    Limiting support l.jpg
    Limiting support have the opportunity to be there at the end”

    • Baby Doe legacy

      • Mandates provision life-sustaining medical treatment (LSMT) to prevent undue discrimination against disabled infants

      • Led to possible overuse of LSMT

      • Exceptions

        • Permanent unconsciousness

        • “Futile” and “virtually futile” treatment

          • That imposes excessive burdens on infant

    AAP Bioethics Committee, Peds, 1996


    Life sustaining medical treatment l.jpg
    Life Sustaining have the opportunity to be there at the end” Medical Treatment

    • Transplants

    • ECMO

    • Dialysis

    • Mechanical Ventilation

    • Antibiotics

    • Nutrition

    • Hydration

    G

    A

    M

    U

    T


    Limiting support26 l.jpg
    Limiting Support have the opportunity to be there at the end”

    • It is justifiable to (Forego = withhold or withdraw) life-sustaining treatment when the burdens outweigh the benefits and continue treatment is not in the best interests of the child

      • Ethically, morally, and legally the same

      • Even food and water (Cruzon case)

    • DNR > withholding/limiting > Withdrawing support spectrum

    Burns, CCM, 2001, AAP Guidelines, Pediatrics, 1994


    Variable decision making l.jpg
    Variable Decision-Making have the opportunity to be there at the end”

    • 270 Pediatric oncologists and intensivists

      • Probability of survival, Parents wishes

      • In 3 of 8 scenarios >20% chose completely opposing treatments

    • 86 ICU staff

      • Family preferences, probability of survival, functional status

      • 80% of questions had 20-50% variability in response

    Randolph, Pediatrics,1999, Randolph, CCM, 1997


    The tough stuff l.jpg
    The Tough Stuff have the opportunity to be there at the end”

    • Ethical principles, Futility, and decision making

    • Models of care continuum

      • Palliative care

    • Family conference

      • communication tips

    • Organ donation

    • A word about PAIN

    • Follow-up

      • Bereavement of family and staff


    Ethical working principles l.jpg

    Non Malfeasance have the opportunity to be there at the end”

    First do no harm

    Beneficence

    Best interest of the child

    Veracity

    Don’t shield children from the truth

    Prevents them from dealing with the issues at hand

    Autonomy

    Cognitively and developmentally appropriate communication

    Sharing information helps avoid feelings of isolation

    Self determination and best interests should be central to decision making

    Minimization of physical and emotional pain

    Developing partnerships with families

    Challenges faced by providers of EOL care deserve to be addressed

    Ethical / Working principles

    Todres, New horizons, 1998, Sahler, Peds 2000


    Futility l.jpg
    Futility have the opportunity to be there at the end”

    • Physiologic futility – straightforward

      • Lasix won’t work in anuric renal failure

      • Dopamine won’t raise blood pressure if Epi has failed to do so

      • Antibiotics for viral URI


    Futility31 l.jpg
    Futility have the opportunity to be there at the end”

    • Medical futility – fuzzier

      • Mechanical ventilation won’t make a difference in HIV pt with ARDS

    • Other futility paradigms

      • If hasn’t worked in the last 100 tries

      • If it just prolonging unconscious life


    Moral decision making l.jpg
    Moral Decision Making have the opportunity to be there at the end”

    • Utilitarian

      • Burden vs benefit

        • Most benefit for the most people involved

    • Deontologic

      • Duty, or higher calling

      • “Preserve life” regardless of the cost

    • Casuistry

      • Based on paradigm cases

      • Ex. American legal system


    Limits of physician obligation l.jpg
    Limits of Physician Obligation have the opportunity to be there at the end”

    • Treatment not likely to confer benefit

      • Antibiotics for URI

    • Treatment causes more harm than good

      • High does Barbiturates for insomnia

    • Treatment conflicts with distributive justice

      • CT scan for tension HA

    Luce, CCM, 1995


    Decision conflicts l.jpg
    Decision conflicts have the opportunity to be there at the end”

    * “Parents not allowed to make martyrs out of their children”


    All or none model l.jpg
    All or None Model have the opportunity to be there at the end”

    Treatment

    primarily

    directed

    toward Cure

    Supportive

    treatment of

    physical,

    emotional, and

    spiritual needs

    D

    E

    A

    T

    H

    Bereavement

    Frager, 1996, J of Palliat Care


    The double effect l.jpg
    The Double effect have the opportunity to be there at the end”

    • Glucksberg vs Vacco (Supreme Court)

      • Euthanasia is a NO GO!

      • Palliative care is OK

        • Giving a large dose of sedative/narcotic to relieve pain and suffering is permissible even if it risks a bad effect of apnea or hypotension

      • Nature of intent is the key

      • Document, document,document

    Luce, CCM,2001(S)


    Palliative care l.jpg
    Palliative Care have the opportunity to be there at the end”

    • “The active total care of patients whose disease is not responsive to curative treatment”

      • Pain, dyspnea, and loneliness

    • “Goal is to add life to the child’s years not years to the child’s life”

    • The medical plan should not be all or none

    Chaffee, Prim Care Clin, 2001, AAP consensus, Pediatrics, 2000


    Continuum model l.jpg
    Continuum model have the opportunity to be there at the end”

    Treatment directed

    Toward Cure

    D

    E

    A

    T

    H

    Bereavement

    Supportive

    treatment of physical,

    emotional, and spiritual needs

    Frager, 1996, J of Palliat Care


    Palliative care consideration l.jpg
    Palliative Care Consideration have the opportunity to be there at the end”

    • Cancer when treatment may fail

    • Diseases which may cause premature death ( ex. CF, HIV)

    • Progressive disease without cure (DMD, SMA II )

    • Neurologic or congenital disease where complication can cause death (ex CP/ MR with recurrent aspirations)


    Barriers to palliative care l.jpg

    Denial - Inability to admit cure not an option have the opportunity to be there at the end”

    Cure vs comfort - Choice leads to parental guilt

    Uncertainty - Rarity makes reliable prognostic information scarce

    Loss of Security - Fear therapeutic alliance damaged

    Inexperience - Parent and provider with situation

    Personal distress -Inability to cope

    Barriers to Palliative Care

    Chaffee, Prim Care Clin, 2001


    Timing is everything l.jpg
    Timing is everything have the opportunity to be there at the end”

    Hello, I’m Dr Creamer, Little Johnny is going to die, what nobody told you?

    • Frequently patients with chronic progressive disease present to the PICU with NO advance directives

    • Detailed discussions of resuscitation parameters need to occur when the patients are at baseline

      • That means in the continuity clinic setting


    Advanced directives l.jpg
    Advanced Directives have the opportunity to be there at the end”

    • An expression of patient or parents preferences re: medical care

    • May request of reject care

      • Under defined conditions

    • May be written or as part of medical power of attorney

    • Best done by team that knows the patient and family the best


    Palliative care consults l.jpg
    Palliative Care Consults have the opportunity to be there at the end”

    @ Transfusions, central lines, intubation, feeding tubes labs, x-ray

    Pierucci, Pediatrics, 2001


    Family conference l.jpg
    Family Conference have the opportunity to be there at the end”

    • Whenever important information requiring decisions needs to be imparted

      • Especially true with end-of life decisions

    • Area or space away from the bedside

      • Minimal interruptions

    • Plans specifics: 5 W’s ahead of time

    • Review with team current status of disease, prognosis, treatment options, feelings and biases, and family’s understandings

    Curtis, CCM(s), 2001


    Communication l.jpg
    Communication have the opportunity to be there at the end”

    • “I’m sorry” doesn’t cut it

      • Sympathy vs. Pity

      • Short-circuits potential deeper discussion

      • Confused with an apology

      • Changes focus from patient and family to physician

    • “I wish things were different”

      • Requires further exploration of reactions and feelings

    • “Tell me the most difficult part”

    Quill, Annals Int Med, 2001


    Family conference46 l.jpg
    Family Conference have the opportunity to be there at the end”

    • Introduce everyone, and set the tone

    • Review what has occurred

      • Find out what is the family’s understanding

    • Acknowledge uncertainties and strong emotions

      • Encourage exploration of emotions

    • Tolerate silence


    The decision l.jpg
    The Decision have the opportunity to be there at the end”

    • Make a recommendation about treatment

    • Redirect hope toward comfortable death

      • Doing things for… vs. doing things to ____

    • Clarify withdrawal of treatment not care

      • Specify what will and won’t be done

      • Describe what the patients death might be like

    • Use repetition to show you understand family’s wishes

    • Support the family’s decision


    The wrap up l.jpg
    The Wrap Up have the opportunity to be there at the end”

    • Summarize the new plan

    • Ask for questions

    • Ensure family knows how to reach you

    • Give family time alone after you have left

    • Encourage family’s presence and participation

      • Pictures, footprints, last bath, etc.


    What about pain l.jpg
    What about Pain? have the opportunity to be there at the end”

    “The duty to do everything possible to free children from intractable pain or distress is a moral imperative”

    • Barriers to adequate pain control

      • May not be recognized

      • Concern about side effects or Addiction

      • Inadequate knowledge

      • Multifactorial in origin

    Kenny, J Pall Care, 1996, Chaffee, J Pall Care, 2001


    Pain curriculum l.jpg
    Pain Curriculum have the opportunity to be there at the end”

    • Assessment >> monitoring relief

    • Dependence vs addiction

    • Prevent / treat opioid side effects

    • Scheduled and supplementary dosing

    • Titration to effect

    • Use of other specialties and modalities

    • Communication

    Sahler, Pediatrics, 2000


    Organ donation l.jpg
    Organ Donation have the opportunity to be there at the end”

    • Can save or improve the lives of as many as 25 people

    • Is supported by the world’s major religions

    • Does not affect funeral arrangements

    • Does not cost anything

    • Affects families positively

    • Call to organ donor center is REQUIRED!


    Non heartbeating organ donation l.jpg
    Non-Heartbeating have the opportunity to be there at the end”Organ Donation

    • Pediatric candidates may have severe neurologic insults but not meet brain death criteria

      • Decision to withdraw support made independently of donation

      • Requires informed consent

      • Certified as dead ( apnea+asystole for 2 minutes)

    Position Paper,Ethics Committee ACCM, CCM, 2001


    The end l.jpg
    The END have the opportunity to be there at the end”

    • Be there for the actual death

    • Don’t ask the nurses to do something you wouldn’t do yourself

    • Acknowledge your own feelings and those of your colleagues

      • They may be completely different

    • Assist the family with the transition

      • Paperwork , telephone calls, autopsy, funeral arrangements


    Staff debrief l.jpg
    Staff Debrief have the opportunity to be there at the end”

    • “You don’t have time to be sad, you have progress notes to write”

    • All deaths

      • For exploration of feelings and personal impact

        • “I should have done X”

        • “I thought I was the only one feeling Y”

    • For Codes:

      • Immediately for acute issues (process, logistics, performance) additionally


    Staff debrief55 l.jpg
    Staff Debrief have the opportunity to be there at the end”

    • Staff unavailable for actual death get “closure”

    • Acknowledge feelings

      • Use of appropriate and inappropriate self protective mechanisms

    • Team Building

      • Reconcile differences between disciplines


    Staff debrief56 l.jpg
    Staff debrief have the opportunity to be there at the end”

    • Normal people who have survived an abnormal situation.

      • It is not therapy or counseling

      • It is basic and wise preventive maintenance for the human spirit

    • Guidelines

      • No Rank during session

      • Confidentiality

      • You don’t have to speak


    Debrief phases l.jpg

    Fact phase have the opportunity to be there at the end”

    Ask participants to describe the event from their own perspective.What was their role in this event?

    Thought phase

    What was your first thought at the scene (or when you heard about it)?When you came off autopilot what do you recall thinking?

    Reaction phase

    What was the worst thing about the event?What do you recall feeling?

    Symptom phase

    Describe probable cognitive, physical, and emotional behavioral responses —   > at the scene   > a few days afterward

    Teaching phase

    Relay information regarding stress reactions and what can be done about them

    Wrapup phase

    Reaffirm positive things

    Summarize

    Be available & accessible.

    Debrief Phases


    Parental bereavement l.jpg
    Parental Bereavement have the opportunity to be there at the end”

    • Survey of the parents of 57 children after death

      • Perception of staff’s uncaring emotional attitude worsened short and long term grief

      • Perception of caring and adequate information communication decreased long term grief

    Meert, PCCM, 2001


    What you can do l.jpg
    What you can do… have the opportunity to be there at the end”

    • Handwritten note of sympathy

    • Funeral attendance

    • After autopsy results available, then 6,12 and 24 months

      • How are thing going for you since your child died?

      • Have you been able to resume your normal routines?

      • How is your family coping?

      • How has your child’s death affected your relationship with your spouse?

      • How are your other children reacting?

      • How are you sleeping and eating?, …returned to work?

      • Are you able to concentrate?

      • Can I do anything to help?

    Todres, CCM, 2001


    To our patients l.jpg
    To our patients …. have the opportunity to be there at the end”


    ad