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End-of-Life Care in Pediatric
Oncology Patients
Hector Rodriguez-Cortes, MD
Pediatric Palliative Care and Hospice
Objectives
 Define:
 elements of end-of-life care.
 Describe:
 different illness phases in patients with cancer.
 symptoms in cancer patients near death.
 Understand:
 the needs of the end-of-life care.
 how parents comprehend prognosis and treatment goals in a
terminally ill child with cancer.
 the needs of palliative prognostic score for terminally children
with cancer.
 factors influencing parental readiness to “ letting go”.
Cancer
 Definition:
• life-threatening illness.
• may possibly end in death.
• prolonged period of living with the disease may precede
death.
• profound uncertainty prevails.
Pathways of dying
Pathways of dying
 Pattern B:
 Children in good health until
a disease or condition
 cause a steady decline in
quality of life, predictably and
inexorably.
 Malignancy
 degenerative disorder
 efforts to maximize a child's
quality of life for as long as
possible
 The scale then extends
below 0 (a quality of life
worse than being dead)
Pathways of dying
 Pattern C
 decline after the onset of the
condition varies significantly,
 episodes of worsening health
interspersed among periods
of relative recovery.
 malignancies that enter
remission and then relapse
 cystic fibrosis with periodic
exacerbations
 metabolic disorders that
cause lasting injury with
every episode of
decompensation.
Within the illness trajectory of Cancer
 Critical phase
 Terminal phase
Critical phase:
 No longer responds to conventional treatment.
 Therapy shifts from a curative approach to palliative care.
 Family and patient are usually aware of the diminishing
or nonexistent options.
Terminal phase:
 Patient may still continue to live quite productively for
weeks or even months, either on experimental treatment
or on no treatment at all.
 Death is imminent.
 Patient begins a final withdrawal from all that is familiar
and loved.
 Complex decisions must be handled.
End of Life Care
 End-of-life care refers:
 care delivered when the prognosis of death is
almost certain and close in time.
What defines the transition to end of life?
 Not precise definition of end of life or its transitions.
 Usually defined and limited by the regulatory environment
rather than by the scientific data.
 Not defined by a specific timeframe unless evidence can
support reliable prognostication.
 Very difficult to accurately predict an individual’s time of
death.
 End-of-life process includes numerous transitions:
 physical, emotional, spiritual, and financial.
Good vs. Bad Death
BAD DEATH
“…too many Americans die unnecessarily bad deaths—deaths with
inadequate palliative support, inadequate compassion, and
inadequate human presence and witness. Deaths preceded by a
dying marked by fear, anxiety, loneliness, and isolation. Deaths
that efface dignity and deny individual self-control and choice.”
Common Elements of a Good death:
 Adequate pain and symptom management.
 Avoiding a prolonged dying process.
 Clear communication about decisions by patient, family and
physician.





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Adequate preparation for death, for both patient and loved ones.
Feeling a sense of control.
Finding a spiritual or emotional sense of completion.
Affirming the patient as a unique and worthy person.
Strengthening relationships with loved ones.
Not being alone.
Palliative care
at the End-of-Life
 Key component of high-quality medical care.
 Includes:
• enhanced care coordination
• facilitate a multidisciplinary approach
• address specific needs: physical, psychological, and spiritual
support
• supportive care and pain control
End-of-Life Care
 Includes care of the imminently dying patient
and the family.
 Should be implemented before death is
imminent.
 Requires team members:
• listen
• respectfully to understand the patient’s and family’s
beliefs, attitudes, values, relationships, priorities,
dynamics
End-of-Life “Decisions” phase
 Most difficult situation that the parents can face.
 Choice between cessation vs. experimental treatment
 Physician’s attitude:
• great influence in the parental decision process.
• may be not prepared to stop treatment.
• may reflect his/her difficulty in admitting having failure.
End-of-Life Care: Cancer
 Symptoms in cancer patients near death:
•
•
•
•
•
pain
poor appetite
fatigue
depression
often not treated or are treated unsuccessfully.
 Pain is the most significant symptoms THEREFORE:
• anticipate and prevent symptom from being experienced.
Terminal phase from
“Patient’s View”:
 More awareness of dying.
 Able to discern the distress among family and caregivers
 Perceive adults’ difficulties to talk to them about end-of-life
issues, death, and dying.
 Feel isolated and alienated.
 Endpoint:
 patient’s withdrawal from the external world.
 may talk very little and may even retreat from physical contact.
 intervention can be critical in able to give the patient implicit
“permission” to die.
Terminal phase from
“Patient’s View”:
 Endpoint:
 patient’s withdrawal from the external world.
 may talk very little and may even retreat from
physical contact.
 intervention can be critical in able to give the
patient implicit “permission” to die.
The Role of EOL care: Terminal phase
 Family needs to:
• know patient is likely to die.
• support decision about a home or hospital
death.
The Role of EOL care: Terminal phase
 Identifying the patient’s and family’s
preferences:
• referral to hospice care
• desired location of death
• avoidance to referral to intensive care unit
• adoption of “do not resuscitate” order
• plans for funeral arrangements
EOL: Home vs Hospital
 Home :
•
•
Advantages:
 chosen by most patients and families.
 families cope better after the patients’ death.
 greater control over the environment.
 involvement of fewer professionals.
 increases opportunities for privacy and time together.
 easier to include siblings and to discuss difficult issues.
Can poses significant challenges.
 underestimate the physical and emotional burden of end-of-life care.
 some families feel isolated.
 unable to cope at home and difficulties with symptom control, psychological distress, or social.
 Hospital hospice:
•
Advantages:
 give the family a break from routine and stress of caring.
 prevent family breakdown or unnecessary admission to hospital .
 The hospital provides reassurance of highly trained staff and a secure environment.
EOL: Terminal phase
 Communication:
• remains the most important element during this
phase
• many parents notice less interaction with the
medical team.
• parents report feeling abandoned.
Health Care Professionals Implications
During the Terminal Care:
 Risk for developing compassion, fatigue, and burnout.
 Some common stressors include:
 chronic nature of the disease.
 uncertainty of its development.
 emotional impact of the long-term involvement with young patients and
families.
 continuous exposure to suffering and death.
 team conflicts when the goal of intervention becomes of caring instead of
curing.
 ethical challenges experienced in end-of-life care.
Health Care Professionals Implications:
 Grieving of health care professionals:
 remains hidden, society expects them to be strong and insensible in the face of
death
 If ignored, they may become a source of distress and eventually, of dysfunction.
 Health care providers should recognize:
 understand, and process their losses and grieves.
 patient’s death should not be neither idealized nor denied, but integrate the loss
into a narrative that is coherent and meaningful, both personally and collectively.
 Regular end-of-life debriefing sessions and multidisciplinary bereavement
rounds
 to share their thoughts, feelings, and experiences regarding the death
 to facilitate follow-up with the family.
Palliative chemotherapy versus supportive care alone:
comparing the preferences of parents and
health care professionals
 Parents:
 focus on the importance of hope than health care professionals.
 quality of life was ranking very high in importance but they would accept
chemotherapy even if it reduced both quality of life and survival time.
 Single parents may be more resistant to giving up aggressive treatment if
they lack a supportive family structure.
 Health care professionals:
 tend to view supportive care alone more positively than did parents,
implying different underlying attitudes toward end-of-life treatments.
 These underlying differences may contribute to the apparent conflict during
the palliative phase of care.
Palliative chemotherapy versus
supportive care alone..
 Parental desirability factors:
 child quality of life
 survival time.
 Two highest-scoring factors that parents consider when caring for
children with cancer
 “recommendations received from health care professionals”
 “things my child said about continuing or not continuing treatment.
A Palliative Prognostic Score for
Terminally Ill Children With Cancer

25% of children with cancer eventually die of their disease.
 Main question? : amount of time left with their children.

Estimating a patients length of survival:


may contribute to the patient’s and family’s quality of life
adequate therapy and care
 No consensus about predictive factors regarding end-of-life.

clinical, biological, and social demographic variables and social and cultural
differences
 End-of-life prognostic scores:

described for adult patients but little is known in pediatric patients.
A Palliative Prognostic Score for Terminally Ill
Children and Adolescents With Cancer
A Palliative Prognostic Score for Terminally Ill
Children With Cancer
 Prognostic Score can help:
 patients and families participating in decision-making therapeutic issues.
 In planning of therapeutic options, avoiding over and under treatment experiences.
 The study predicts that a child diagnosed with leukemia/lymphoma as
well as with anemia is at high risk for death within 60 days following
enrollment in palliative care. Thus, the family will require preparation,
information, and training sooner than a lower-risk child.
Understanding of Prognosis and Goals of Care Among Couples
Whose Child Died of Cancer
 Parents (61%) of children with newly-diagnosed cancer:

more optimistic than the child’s primary oncologist regarding the child’s prognosis.
 Parents of children who died of cancer:


recognized that there is no realistic chance for cure an average of 3 months later than the primary
oncologist.
Later recognition of the child’s end-of-life (EOL) period:
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
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associated with the administration of more aggressive care
later involvement of hospice services
physician and parent care goals were less likely to be directed at lessening suffering.
Understanding of Prognosis and Goals of Care Among Couples
Whose Child Died of Cancer
 Father:


“engaging in an all-consuming battle with illness itself ”
Struggling against treating illness or accept death.
Understanding of Prognosis and Goals of Care Among Couples
Whose Child Died of Cancer
Understanding of Prognosis and Goals of Care Among Couples
Whose Child Died of Cancer
Factors Influencing Parental Readiness to Let Their
Child With Cancer Die
 Almost all parents vacillated between preservation and letting go.
 A timely transition to letting go is of importance:
 for the child’s well-being .
 for the parents, (positive evaluation of their performance as parents).
Factors Influencing Parental Readiness to Let
Their Child With Cancer Die
 From a parental perspective EoL phase is characterized as
coping with loss than as the acceptance of death.
 “Preservation”means:
 to maintain, improve, the existing situation
 preserve “what is still there of their child”. Parents attempt to “prolong
their life” with their child.
 “Letting go” means:
 recognize that death is inevitable.
 recognize that child’s well-being and comfort is a priority.
 Is not the same as giving up
Factors Influencing Parental Readiness to Let Their
Child With Cancer Die
Factors Influencing Parental Readiness to Let Their
Child With Cancer Die
 Supporting “preservation”
 Promoting “letting go”
 Supporting in both “directions”
Factors Influencing Parental Readiness to Let Their
Child With Cancer Die
 Supporting “preservation”:
 Uncertainty: provides rationale for hope
 Fragmentation
 Anxiety.
Factors Influencing Parental Readiness to Let Their
Child With Cancer Die
 Factor promoting “letting go”:
 Certainty:
 arises from the child’s physical deterioration.
 supported by providing honest information.
 visualizing the illness process and by framing.
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Feelings of loss
Postponed grief
Perception of suffering
Ability to disentangle needs
Ability to finding meaningful answers
Factors Influencing Parental Readiness to Let Their
Child With Cancer Die
 Supporting in both “directions”
 Hope
 good parent–child relationship
 attitude of professionals
Factors Influencing Parental Readiness to Let
Their Child With Cancer Die

To be able to let the child go parents have to:
 cope with feelings of loss
 find meaning in a letting go perspective
 perceived reality and requires an integration of all
modulating factors.
Bereavement Care
 Parents’ and siblings’ responses to loss and grieving vary widely
depending upon individual, cultural, and circumstantial factors.
 Family members face anticipatory grief, and then bereavement after
the patient dies.
 Parents and siblings of patient who dies of cancer may take many
different paths:
• incorporate the loss and continue with their lives.
• integrate their feelings and thoughts.
• share their experiences with other bereaved families.
 Other families may present an intense or complicated process of
mourning
Bereavement Care
 Problems after bereavement:
•
•
major depression and generalized anxiety disorder
poor school performance, depression, severe separation anxiety, distress, and fear
for their own health (healthy siblings)
 After the patient’s death:
•
•
parents need to reengage in daily routines.
may experience a significant change in their relationship with the treatment team.
 Care for bereaved families should begin when the patient is first admitted for
treatment.
• can alert the team to families whose coping may be less than adaptive.
• to prepare family for loss, which, in turn, may lower the risk of psychological
disturbance after the patient’s death.
References

End-of-Life Management in Pediatric Cancer Claudia L. Epelman, Current
Oncology Reports, 17 February 2012

Pediatric palliative care, Julie Hauer, et al Up to Date.2012

Chemotherapy versus supportive care alone in pediatric palliative care for
cancer: comparing the preferences of parents and health care professionals.
Tomlinson D, et al, CMAJ. 2011 Nov 22;183(17):E1252-8. Epub 2011 Oct 17.

A palliative prognostic score for terminally ill children and adolescents with
cancer. Kurashima AY, et al, Pediatr Blood Cancer. 2010 Dec 1;55(6):1167-71.

Understanding of prognosis and goals of care among couples whose child
died of cancer, Edwards KE, et al, J Clin Oncol 2008 Mar 10;26(8):1310-5.

Factors influencing parental readiness to let their child with cancer die. Kars
MC et al, Pediatr Blood Cancer. 2010 Jul 1;54(7):1000-8.