Integrating Palliative Care Into The Care Of Children With Developmental Disabilities - PowerPoint PPT Presentation

Loading...

PPT – Integrating Palliative Care Into The Care Of Children With Developmental Disabilities PowerPoint presentation | free to download - id: 511f80-MjMzN



Loading


The Adobe Flash plugin is needed to view this content

Get the plugin now

View by Category
About This Presentation
Title:

Integrating Palliative Care Into The Care Of Children With Developmental Disabilities

Description:

Integrating Palliative Care Into The Care Of Children With Developmental Disabilities Mike Harlos MD, CCFP, FCFP Professor and Section Head, Palliative Medicine ... – PowerPoint PPT presentation

Number of Views:1179
Avg rating:3.0/5.0
Slides: 51
Provided by: MichaelH108
Learn more at: http://palliative.info
Category:

less

Write a Comment
User Comments (0)
Transcript and Presenter's Notes

Title: Integrating Palliative Care Into The Care Of Children With Developmental Disabilities


1
Integrating Palliative Care Into The Care Of
Children With Developmental Disabilities
Mike Harlos MD, CCFP, FCFP
Professor and Section Head, Palliative Medicine,
University of Manitoba Medical Director, WRHA
Adult and Pediatric Palliative Care
Erin Shepherd RN, MN
Clinical Nurse Specialist, WRHA Pediatric
Palliative Care
2
The presenters have no conflicts of interest to
disclose
3
Objectives
  • To explore where palliative care may fit into the
    spectrum of care for children with developmental
    disabilities
  • To consider potential barriers to the involvement
    of palliative care
  • To review common issues of communication in
    palliative and end-of-life care
  • To explore an approach to health care
    decision-making
  • To review common symptoms at end-of-life and
    their management

4
http//palliative.info
5
(No Transcript)
6
(No Transcript)
7
WHO Definition of Palliative Care for Children
  • Palliative care for children is the active total
    care of the child's body, mind and spirit, and
    also involves giving support to the family.
  • It begins when illness is diagnosed, and
    continues regardless of whether or not a child
    receives treatment directed at the disease.
  • Health providers must evaluate and alleviate a
    child's physical, psychological, and social
    distress.
  • Effective palliative care requires a broad
    multidisciplinary approach that includes the
    family and makes use of available community
    resources it can be successfully implemented
    even if resources are limited.
  • It can be provided in tertiary care facilities,
    in community health centres and even in
    children's homes.

8
Thank you for giving me aliveness
Jonathan 6 yr old boy terminally ill boy
Ref Armfuls of Time Barbara Sourkes
9
Common Trajectory Of Decline In Progressive
Life-Limiting Illness In Children
From presentation by Joanne Wolfe at the 16th
International Congress on the Care of The
Terminally Ill
Functional Status
Decline
Crises (Scary Dips)
Death
Time
10
Prognostic Uncertainty
I dont know whether to buy a coffin or a
tricycle
Comment from a father during prenatal palliative
care consult
  • Addressing the comfort of children must require
    prognostic certainty or the acknowledgment of the
    likelihood of dying
  • Palliative Care can follow in parallel with
    aggressive, cure-focused care, as one member of
    the team supporting patient and family

11
Palliative Care The What If? Tour Guides
  • What would things look like?
  • Time frame?
  • Where care might take place
  • What should the patient/family expect (perhaps
    demand?) regarding care?
  • How might the palliative care team help patient,
    family, health care team?

Disease-focused Care (Aggressive Care)
12
Palliative Care for Children with Developmental
Disabilities
  • Range of conditions
  • Prognostication difficult
  • These children would typically not meet the
    criteria required for adult programs gt pediatric
    criteria required
  • Specific needs are varied
  • Will depend on care environment, momentum of
    decline, needs of the family /or health care
    providers
  • Resource for symptom management or crises
  • Assist with care planning and decision making
  • Inform the range of options and possibilities
  • Resource for the family in dealing with serious
    illness
  • Bereavement resources, follow-up /or support

13
(No Transcript)
14
Barriers to Integration of Curative and
Palliative Care Among the Population of Children
with Severe Neurodevelopmental Disabilities
  • Professional Attitudes Towards Severe Cognitive
    Disability
  • May inappropriately downplay the burden of
    technological intervention
  • May under treat pain
  • May limit the spectrum of care options
  • If working in an inpatient setting may not
    recognize their assessment of QOL is based on an
    incomplete clinical picture

Graham, RJ and Robinson, WM. (2005) Integrating
Palliative Care into Chronic Care for Children
with Severe Neurodevelopmental Disabilities, J
Dev Behav Pediatr 26 (5) 261-365
15
Continued
  • Reconfigured Parental Roles Towards Children with
    Complex Medical Care Needs
  • Special relationship with their child
    intertwined identity
  • Feelings of guilt evoked at prospect of childs
    death
  • Reluctance to plan for end of life care
  • Optimal palliative care may be as important as
    any care decision made throughout the childs
    life
  • Integration of palliative care goals into the
    usual chronic care regime

Graham, RJ and Robinson, WM. (2005) Integrating
Palliative Care into Chronic Care for Children
with Severe Neurodevelopmental Disabilities, J
Dev Behav Pediatr 26 (5) 261-365
16
Continued
  • The Uncertainty of Prognosis and the Pressure of
    Past
  • Struggle to identify outcome indices and valid
    comparison group on which to base accurate
    prognostication
  • Without faith in prognostication, planning for
    end of life care can be postponed or ignored
  • Clinicians must find a way to overcome their
    sense of discomfort with being previously wrong
    and counter parents unrealistic expectations for
    the endless restorative prowess of medical care

Graham, RJ and Robinson, WM. (2005) Integrating
Palliative Care into Chronic Care for Children
with Severe Neurodevelopmental Disabilities, J
Dev Behav Pediatr 26 (5) 261-365
17
A Model for End-of-Life Care in Children with
Neurodevelopmental Disabilities
  1. Acknowledge that children with disabilities have
    quality-of-life
  2. Acknowledge that children with disabilities are
    entitled to end-of-life care
  3. Begin discussions regarding interventions,
    treatment options, quality-of-life, and
    end-of-life care early and as part of a medical
    home model
  4. When considering technology support options,
    present both benefits and potential difficulties,
    while also acknowledging that technology is not
    irrevocable

Graham, RJ and Robinson, WM. (2005) Integrating
Palliative Care into Chronic Care for Children
with Severe Neurodevelopmental Disabilities, J
Dev Behav Pediatr 26 (5) 261-365
18
Continued
  1. Utilize a multidisciplinary approach, including
    physicians, nurses, social workers,
    psychologists, teachers, friends and others
  2. Engage non-acute care providers at times of
    medical crisis
  3. Equate end-of-life care with quality care that is
    not inconsistent with chronic care
  4. Acknowledge the parent-child relationship,
    expertise, and longitudinal perspective
  5. Model effective and compassionate care of
    children with neurodevelopmental disabilities for
    trainees and colleagues

Graham, RJ and Robinson, WM. (2005) Integrating
Palliative Care into Chronic Care for Children
with Severe Neurodevelopmental Disabilities, J
Dev Behav Pediatr 26 (5) 261-365
19
Silence Is Not Golden
  • Dont assume that the absence of question
    reflects an absence of concerns
  • As families watch a loved one decline, it would
    be very unusual for them not to wonder what to
    expect, and over what time frame
  • Waiting for such questions to be posed may result
    in missed opportunities to address concerns
    consider exploring preemptively

20
Be Clear
The single biggest problem in communication is
the illusion that it has taken place. George
Bernard Shaw
Make sure youre both talking about the same thing
Theres a tendency to use euphemisms and vague
terms in dealing with difficult matters such as
death dying this can lead to confusion
21
Planning For Predictable Challenges
22
  • functional decline occurs
  • food/fluid intake decrease. feeds may not be
    tolerated
  • enteral medication route maybe ineffective
  • symptoms develop
  • dyspnea, congestion, delirium
  • family will need support information

23
Connecting
  • A foundational component of effective
    communication is to connect / engage with that
    person i.e. try to understand what their
    experience might be
  • If you were in their position, how might you
    react or behave?
  • What might you be hoping for? Concerned about?
  • This does not mean you try to take on that
    person's suffering as your own
  • Must remain mindful of what you need to take
    ownership of (symptom control, effective
    communication and support), vs. what you cannot
    (the sadness, the unfairness, the very fact that
    this person is dying)

24
Responding To Difficult Questions
  • Acknowledge/Validate and Normalize
  • Thats a very good question, and one that we
    should talk about. Many people in these
    circumstances wonder about that
  • Is there a reason this has come up?
  • Im wondering if something has come up that
    prompted you to ask this?
  • Gently explore their thoughts/understanding
  • Sometimes when people ask questions such as
    this, they have an idea in their mind about what
    the answer might be. Is that the case for you?
  • It would help me to have a feel for what your
    understanding is of your condition, and what you
    might expect
  • Respond, if possible and appropriate
  • If you feel unable to provide a satisfactory
    reply, then be honest about that and indicate how
    you will help them explore that

25
The Perception of the Sudden Change
When reserves are depleted, the change seems
sudden and unforeseen. However, the changes had
been happening.
That was fast!
Melting ice diminishing reserves
Day 1
Day 3
Day 2
Final
26
Helping Families At The Bedside Physical Changes
  • physical changes of dying can be upsetting to
    those at the bedside
  • skin colour cyanosis, mottling
  • breathing patterns and rate
  • muscles used in breathing
  • reflect inescapable physiological changes
    occurring in the dying process.
  • may be comforting for families to distinguish
    between who their loved one is - the person to
    whom they are so connected in thought and spirit
    - versus the physical changes that are happening
    to their loved one's body.

27
Decisions
28
Helping Family And Other Substitute Decision
Makers
  • In situations where death will be an inescapable
    outcome, family may nonetheless feel that their
    choices about care are life-and-death decisions
    (treating infections, hydrating, tube feeding,
    etc.)
  • It may be helpful to say something such as
  • I know that youre being asked to make some very
    difficult choices about care, and it must feel
    that youre having to make life-and-death
    decisions. You must remember that this is not a
    survivable condition, and none of the choices
    that you make can change that outcome. We are
    asking for guidance about how we can ensure that
    we provide the kind of care that he would have
    wanted at this time.

29
An Approach To Decision Making
  • The health care team has a key role in providing
    information related to technical or medical
    issues, and physiological outcomes
  • reviewing/explaining details about the condition,
    test results, or helping explore treatment
    options
  • indicating when a hoped-for outcome or treatment
    option is not medically possible
  • Patient/family must have a central role in
    considerations relating to value/belief systems
    (such as whether life is worth living with a
    certain disability) or to experiential outcomes
    (such as energy, well-being, quality of life)

30
Goal-Focused Approach To Decision Making
  • Regarding effectiveness in achieving its goals,
    there are 3 main categories of potential
    interventions
  • Those that will work Essentially certain to be
    effective in achieving intended physiological
    goals (as determined by the health care team) or
    experiential goals (as determined by the patient)
    goals, and consistent with standard of medical
    care
  • Those that wont work Virtually certain to be
    ineffective in achieving intended physiological
    goals (such as CPR in the context of relentless
    and progressive multisystem failure) or
    experiential goals (such as helping someone feel
    stronger, more energetic), or inconsistent with
    standard of medical care
  • Those that might work (or might not) Uncertainty
    about the potential to achieve physiological
    goals, or the hoped-for goals are not
    physiological/clinical but are experiential

31
Goal-Focused Approach To Decisions
32
Considerations In The Final Hours
  • Are there preexisting medical conditions need
    attention in the final hours?
  • not typically necessary to continue ongoing
    medical management of underlying illnesses, with
    the possible exception of seizure disorder
  • What new symptoms exists of might arise
    (typically dyspnea, congestion, agitated
    delirium), and related medication needs?
  • Uncommon for pain to arise as a new symptoms in
    final hours
  • What are the available routes of medications
    administration?
  • Anticipated concerns of family

33
Prevalence of Symptoms In Final Days
  • Dyspnea 80
  • Congestion reported as high as 92
  • Delirium 80
  • Families who would be grateful for support and
    information must be near 100

When these issues arise at end-of-life, things
havent gone wrong they have gone as they are
inclined to.
34
Role of the Health Care Provider
  • Anticipate changes in functional status, loss of
    oral route, the development of symptoms
  • Develop a care plan that prepares for predictable
    issues LAD, ACP
  • Preemptively address communications issues
  • food/fluid intake
  • sleeping too much
  • are medications causing the decline?
  • how do we know he/she is comfortable?
  • can he/she hear us?
  • dont want to miss being there at time of death
  • how long can this go on? what will things look
    like?

35
Management of Symptoms
Symptom Drug Non-Oral Route(s)
Dyspnea opioid sublingual (SL) small volumes of high concentration same dose as oral subcutaneous supportable in most settings same dose as IV ½ po dose IV limited to hospital settings intranasal fentanyl lipid soluble opioid use same dose as IV to start.
Pain opioid see above
Secretions scopolamine subcutaneous transdermal (patches compounded gel)
Secretions glycopyrrolate subcutaneous
Agitated Delirium neuroleptic (methotrimeprazine haloperidol) SL use same dose for all routes subcutaneous (most settings) IV (hospital)
Agitated Delirium lorazepam SL generally use with neuroleptic
36
Medications Needed
  1. Opioid pain, dyspnea
  2. Antisecretory congestion
  3. Sedative (neuroleptic /- benzodiazepine)
    agitated delirium

Plus whatever condition-specific medications are
needed (e.g. anticonvulsants)
37
Opioid Use in Final Days/Hours
  • specific doses will depend on the degree of
    distress and existing opioid tolerance
  • usually need to use short-acting opioid in order
    to respond quickly to changing symptoms (dyspnea)
  • if patient is on long-acting morphine or
    hydromorphone, switch to equivalent daily dose of
    short-acting divided q4h (½ the oral dose if
    switching to subcutaneous or IV)
  • if patient is on transdermal fentanyl, consider
    leaving this as is, and adding a q4h dose of
    morphine or hydromorphone, starting low and
    titrating up as needed.
  • the interval between prn (as-needed) doses should
    not exceed one hour, regardless of route. The
    effect of a prn dose will be evident by 1h, and a
    longer interval will cause needless suffering

38
Medications Needed
  1. Opioid pain, dyspnea
  2. Antisecretory congestion
  3. Sedative (neuroleptic /- benzodiazepine)
    agitated delirium

Plus whatever condition-specific medications are
needed (e.g. anticonvulsants)
39
Opioids in Dyspnea
  • Uncertain mechanism
  • Comfort achieved before resp compromise rate
    often unchanged
  • Often patient already on opioids for analgesia
    if dyspnea develops it will usually be the
    symptom that drives the need for titration
  • Dosage should be titrated empirically
  • May need rapid dose escalation in order to keep
    up with rapidly progressing distress

40
Recommended Opioid And Sedative Doses For Dyspnea
(gt 6 Months Age)
For infants lt 6 months start with ¼ of the
pediatric starting dose and titrate
Agent Intermittent Dose Intermittent Dose Parenteral Infusion Dose
Codeine Enteral 0.5 1.0 mg/kg q4h Not recommended parenterally
Morphine Sulfate Enteral 0.2 0.3 mg/kg q 4h 0.05 mg/kg IV load over 10 min then 0.01 0.03 mg/kg/hr
Morphine Sulfate IV/SQ 0.05 0.2 mg/kg q 2-4h 0.05 mg/kg IV load over 10 min then 0.01 0.03 mg/kg/hr
Hydromorphone Enteral 30 80 micrograms/kg q4h 10 20 micrograms/kg IV load over 10 min then 2 8 micrograms/kg/hr
Hydromorphone IV/SQ 15 micrograms/kg q 2 4h 10 20 micrograms/kg IV load over 10 min then 2 8 micrograms/kg/hr
Oxycodone 0.05 0.15 mg/kg po q4h 0.05 0.15 mg/kg po q4h N/A
Fentanyl Citrate 0.5 2 micrograms/kg IV 0.5 2 micrograms/kg IV 0.5 2 micrograms/kg/hr IV
Lorazepam 0.05 mg/kg IV/SL 0.05 mg/kg IV/SL
Midazolam IV 0.025 0.05 mg/kg titrated carefully, with 2-3 min. between fractions Infusion would be guided by prn doses neither surgical anesthesia nor fatal intoxication is produced by benzodiazepines in the absence of other drugs with CNS-depressant actions an important exception is midazolam, which has been associated with decreased tidal volume and respiratory rate (Goodman Gilman)
Midazolam Nasal 0.1 mg/kg in each nostril Infusion would be guided by prn doses neither surgical anesthesia nor fatal intoxication is produced by benzodiazepines in the absence of other drugs with CNS-depressant actions an important exception is midazolam, which has been associated with decreased tidal volume and respiratory rate (Goodman Gilman)
Midazolam po/SL Child 1 month18 years 0.5 micrograms/kg (max. 15 mg) 3060 minutes before procedure Infusion would be guided by prn doses neither surgical anesthesia nor fatal intoxication is produced by benzodiazepines in the absence of other drugs with CNS-depressant actions an important exception is midazolam, which has been associated with decreased tidal volume and respiratory rate (Goodman Gilman)
Methotrimeprazine 0.025 - 0.1 mg/kg q6h po/SQ 0.025 - 0.1 mg/kg q6h po/SQ 0.1 - 0.4 mg/kg/24 hr IV/SQ
41
Common Concerns About Aggressive Use of Opioids
at End-Of-Life
  • How do you know that the aggressive use of
    opioids for dyspnea doesn't actually bring about
    or speed up the patient's death?
  • I gave the last dose of morphine and he died a
    few minutes later did the medication cause the
    death?

42
  1. Literature the literature supports that opioids
    administered in doses proportionate to the degree
    of distress do not hasten death and may in fact
    delay death
  2. Clinical context breathing patterns usually seen
    in progression towards dying (clusters with
    apnea, irreg. pattern) vs. opioid effects
    (progressive slowing, regular breathing pinpoint
    pupils)
  3. Medication history usually the last dose is
    the same as those given throughout recent
    hours/days, and was well tolerated

43
  • Typically, with excessive opioid dosing one
    would see
  • pinpoint pupils
  • gradual slowing of the respiratory rate
  • breathing is deep (though may be shallow) and
    regular

44
COMMON BREATHING PATTERNS IN THE FINAL HOURS
Cheyne-Stokes
Rapid, shallow
Agonal / Ataxic
45
Palliative Management of Secretions
46
Managing Secretions in Palliative Patients
  • Factors influencing approach management
  • Oral secretions vs. lower respiratory
  • Level of alertness and expectations thereof
  • Proximity of expected death
  • Death Rattle up to 50 in final hours of life
  • At times the issue is more one of creating an
    environment less upsetting to visiting
    family/friends
  • Suctioning If you can see it, you can suction
    it

47
Secretions - Prevalence At Study Entry And In
Last Month Of LifeUK Childrens Cancer Study
Group/Paediatric Oncology Nurses Forum
SurveyGoldman A et al Pediatrics 2006 117
1179-1186
48
Atropine Eye DropsFor Palliative Management Of
Secretions
  • Atropine 1 ophthalmic preparation
  • Local oral effect for excessive
    salivation/drooling
  • Dose is usually 1 2 drops SL or buccal q6h prn
  • There may be systemic absorption watch for
    tachycardia, flushing

49
Glycopyrrolate For Palliative Management Of
Secretions
  • Less sedating than scopolamine (doesnt cross the
    blood-brain barrier), longer acting, however not
    as effective
  • Useful where patient is still alert scopolamine
    will cause sedation and delirium in awake patients

Enteral 40 100 micrograms/kg 3 4 times
daily
  • 2006 British National Formulary For Children
  • IWK Health Centre (Halifax) Formulary

Refs
Parenteral 4 10 micrograms/kg 3 4 times
daily (1/10th the enteral dose)
IWK Health Centre (Halifax) Formulary
Ref
50
Scopolamine For Palliative Management Of
Secretions
Ref 2007 British National Formulary For Children
Transderm-V (Scopolamine) Transderm-V (Scopolamine)
Age Dose
1 month 3 yrs 250 micrograms every 72 hours (1/4 patch)
3 10 yrs 500 micrograms every 72 hours (1/2 patch)
10 18 yrs 1 mg every 72 hours (one patch)
Intermittent SQ/IV 6-10 micrograms/kg (max.
600 micrograms) q 4h
Continuous SQ/IV 40-60 microgram/kg/day (1.67
2.5 microgram/kg/h)
2006 Rainbow Hospice Guidelines
Ref
About PowerShow.com