Another reason for integrating palliative care perspectives from the time of diagnosis is to encourage sensitive but systematic revisiting of goals and plans as a child’s medical condition changes. Parents may be so absorbed in the medical, financial, and practical aspects of caring for their children and surviving day to day that they may find it difficult to recognize the need to redefine goals or identify different ways of reaching them.
When appropriate, early consultations also give families an opportunity to become familiar with palliative care personnel in advance of an expected or possible crisis and to discuss issues such as continued relationships with the child’s established care team. Without such preparation, families may react instinctively by feeling that they are being abandoned and by rejecting certain options, including hospice care, without understanding what is being offered.
Given the diversity of the goals, no single health care professional is likely to be fully prepared to discuss ways to fit medical care and family strategies to the goals. Depending on the situation, physicians, nurses, social workers, psychologists, child-life specialists, chaplains, and others will have roles to play. Again, for them to perform effectively, professionals will need to be adequately educated and trained to discuss goals, identify strategies, and guide families to the appropriate and available resources.
I’ve had the experience of having to stand at the table in the emergency room and say, it’s okay to let him go. And of talking to my son [Joshua] and saying, it’s okay to go, if he wants to go. For the most part, the doctors are responsive to that, but they just can’t stop themselves from intervening. . . . We need to teach people how to stop and respect.
Tina Heyl-Martineau, parent, 20012
Much has been written about advance care planning for adults, particularly planning for a time when they are no longer be able to make decisions or communicate preferences. Ideally, this planning is less about documents—although certain documents can be important—than it is about an ongoing process of considering values, preferences, circumstances, and expectations relevant to what a person wants at the end of his or her life (see, e.g., Larson and Tobin, 2000). A variety of initiatives have helped make advance care planning more routine and more informed. Nonetheless, most adults, even older adults and adults with serious illnesses, have not considered their own values about end-of-life care, discussed their views