All pediatric patients with cancer who enroll in a phase 1 trial should also receive a palliative care consultation if they have not already had one, say the authors of a new paper.
In fact, this should be the new standard of care, write Sarah Lord, MD, a staff pediatrician at the Hospital for Sick Children in Toronto, Ontario, Canada, and colleagues.
Consulting with a palliative care team at time of enrollment into a trial “promotes a child’s best interests” because it offers a more holistic approach, the authors comment.
Children participating in a phase 1 trial have generally exhausted their therapeutic options and face a significant possibility that they will die of their disease. Therefore, it is important that families and patients who are considering enrollment in a phase 1 trial do not feel that they are trading “hope” with palliative care, they warn.
The paper was published online February 14 in the Journal of Clinical Oncology.
“Introducing palliative care consultation to a family should be individualized depending on the patient and family’s needs and expectations, the relationship with the clinician, and where the clinician feels the family is at in terms of their beliefs and perspectives about the child’s illness,” Lord commented in an interview.
She noted that some clinicians and families are “very comfortable exploring the balance of hope and worry and may prefer to discuss all of the ways in which palliative care teams can be helpful, including the possibility of end of life care.”
On the other hand, she told Medscape Medical News, “other family and clinician partnerships may be focused more on particular concerns, such as bothersome symptoms, and so the introduction to a palliative care team might focus more on that particular area of expertise.”
Negating Misconceptions
Increasing evidence suggests that early referral to specialist palliative care for patients with advanced cancer can be highly beneficial for symptom relief, reducing aggressive end-of-life care, and lowering treatment costs. The latest set of guidelines on palliative care issued by the American Society of Clinical Oncology (ASCO) state that palliative care should begin early in the course of the disease. They also recommend that palliative care be delivered concurrently with active treatment for patients with metastatic cancer, those with a high burden of symptoms, or those with unmet physical or psychosocial needs.
Ideally, palliative care should be introduced as soon as the cancer becomes advanced or within 8 weeks of diagnosis in newly diagnosed patients with advanced cancer, according to ASCO.
Although patients may often benefit from participating in an early trial, phase 1 trials do not have a therapeutic intent as their primary objective. But patients who enroll in these studies may be doing so with the goal of improving their current disease status or even curing it, so there is often an element of hope. Thus, Lord and colleagues explain the necessity of negating the misconception that palliative care is focused only on end-of-life care or that it indicates abandoning any hope for recovery or at least improving disease status.
They also emphasize that the recommendation for a palliative care consult when enrolling in a phase 1 trial is not meant for patients who are already engaged with a palliative care team. But making this a routine practice for all patients who enroll in phase I trials can help providers introduce the concept of palliative care to patients and family, especially in situations where end-of-life care is not yet needed.
Strategies for Discussion
In their paper, Lord and colleagues offer a few strategies for introducing palliative care at the time of phase 1 trial enrollment, keeping in mind that most are entering the trial with the hope of a therapeutic benefit.
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It is important to “normalize” palliative care consultations as a standard practice for all patients who enroll in phase 1 trials because it will ensure the best possible support to the patient and family.
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The role of the palliative care team in supporting the patient/family’s goals should be emphasized.
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The expertise of the palliative care team in symptom management should be discussed, in particular how this team can help with managing symptoms.
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Explanations of how the palliative care team can promote quality of life, such as with the use of adjunctive therapies, volunteers, or facilitation of care in the family’s preferred location when possible.
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The role of the palliative care team in supporting hopes and worries should be explained; this is a concern of many families when a patient enrolls in a phase 1 trial.
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Among those who are already discussing end-of life care and/or bereavement, the expertise of the palliative care team in those areas can be emphasized.
“We are less concerned about how the introduction is made, as each family’s needs and perspectives are different,” said Lord. “We are more concerned that the introduction should simply open the door for the family and palliative care team to meet.”
“The opportunity for the palliative care team to then start to build a therapeutic relationship enables them to understand how they can add value to the patient’s care,” she added.
Lord and coauthor Kevin Weingarten have disclosed no relevant financial relationships; coauthor Adam Rapoport reports having stock or other ownership in Medcurrent decision support software.
J Clin Oncol. Published online February 14, 2018. Abstract
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