Download Health Professionals: When to Introduce Palliative Care

WHEN TO INTRODUCE PALLIATIVE CARE?
It can be very difficult to predict if and when a child with a life-limiting condition might die.
Waiting for certainty means that important supports for the family may be provided too
late or not at all. Palliative care can be provided in conjunction with ongoing efforts to
cure illness or prolong life. It does not mean the ill person and their family have to ‘give
up’ or lose hope. It is better that these children and their families have timely access to
supports even if they are fortunate enough to recover from their illness.
A mixed model of care in which facets of palliative care and cure-oriented or lifeprolonging treatment are married together may be a helpful way of approaching the
management of children with uncertain prognoses. Using such a model, a child might
participate in a trial of a new therapy or be placed on the list for organ transplantation
while receiving optimum symptom management and support in living with uncertainty
and the possibility or probability of death. The family is assisted to ‘hope for the best but
prepare for the worst’.
Tips for Introducing Palliative Care to Families
1. Consult with a more experienced nurse before and after if you are not feeling
confident about how to approach the subject.
2. Very carefully listen to what the family is saying. Can you tell me about your CHILD
(not your child’s illness).
Listen for any obvious hints about how they perceive the child’s illness?
Ask them what worries them most?
3. Always follow the family’s lead. Use their language and metaphors. For example,
some parents say they have noticed a decline in health over many months or that
since the last respiratory episode the child hasn’t got back to 100%. Ask them what
this means for them.
4. Gently try to gauge what the perceptions are.
Ask them if they know anything about palliative care or have they heard of palliative
care before. There are many misconceptions about the term palliative care.
 It is limited to terminal or end-of-life care
 It is only for elderly people or those with cancer
 It is passive and involves little more than ‘hand-holding’
 The use of pain medications shortens the patient’s life.
5. It is critically important that an accurate concept of palliative care is presented.
 Is focused on improving the patient and family’s quality of life
 Involves the active use of state-of-the-art medications and techniques to
treat pain and other symptoms
 Includes but is not restricted to terminal care
 Is appropriate for patients with any life-limiting illness
 Can be provided in conjunction with ongoing efforts to treat the underlying
disease
 The appropriate use of pain medications does not shorten the patient’s
life.
6. Ask them if they have any anxieties that may keep them awake at night. Sometimes,
parents may admit to feeling a lot of guilt when they say they have been thinking
about funerals, arranging them, choosing flowers or pieces of music they know the
child likes.
7. Some other good questions to consider are;
“As you think about going (home/the next 6 months/going on the transplant list) what
is most important to you?
“What worries you most?”
“Is there anything you need you don’t have?”
8. If the family won’t admit to any thoughts about things not going well you may ask, “Is
there ever a time, perhaps at 2am, when you worry that things might not turn out as
you hope?’
9. Parents are often very relieved to hear that comfort and quality is a large focus in
palliative care.
10. Offer to engage the palliative care team (VPPCP) to talk to and listen to the range of
services that are on offer.
11. Some services that engage families quickly are photos, assessment of equipment
need, symptom control and respite services.
12. Home setting - as above, however being in someone’s home is a completely different
environment to the hospital, we are on the family’s ‘turf’. There isn’t anywhere else to
go! You can’t come back in a minute. Be careful.
Sit with the family through the highly emotional states. These conversations are
expressions of distress and are helpful and healthy.
13. HOPE- all parents want to maintain a level of hope. When meeting a new family it is
often useful to ask them for what they are hoping for. Frequently the first hope is
‘child will get better”. Always acknowledge this, “we hoping for this too”. Then ask
again what they would be hoping for next.
Remember hope is the language of goals.