Pediatric Palliative Care Pharmacy Pearls—A Focus on Pain and Sedation

Determining the optimal dosing regimen for pediatric patients is a challenge due to the lack of dosing guidelines and studies. In addition, many developmental pharmacology changes that occur throughout childhood that have profound impacts on the absorption, distribution, metabolism, and elimination of medications are commonly used in palliative care. Adding to that complexity, certain medications have different effects in the pediatric patient compared to the adult patient. Being aware of the pharmacokinetic changes, impact on neurodevelopment and unique medication factors that are present in pediatric patients helps clinicians treat the pediatric palliative care patient in the best and safest way possible.

Family Stress

Serious illness creates a need for financial and legal support for individuals and their families. Nonmedical issues are often as pressing on them as their medical concerns. Clinicians must have a basic understanding of meeting those needs of advance planning, income and family maintenance, access to insurance, and family preservation within the context of culturally appropriate care. Knowledge of community and faith-based resources to meet the nonmedical needs of the palliative care patient is an essential aspect of care. Since these are often unknown to patients and their families, the clinician must know how to guide patients through the morass of cultural and legal requirements for this purpose.

Delirium

Delirium is the most common and serious neuropsychiatric disorder experienced by people with advanced illness. It leads to significant morbidity, and significant distress for the person themselves, family members and staff. Delirium often bodes of a poor prognosis and can significantly interfere with pain and symptom control. Unfortunately, delirium is often under-recognized or misdiagnosed in the palliative care patient, and even when recognized, it frequently goes untreated or is inappropriately treated. Clinicians who care for patients with advanced illness must be able to diagnose delirium accurately; undertake appropriate assessment of aetiologies and consider their treatment with due consideration of treatment goals and illness trajectory; and individualize the pharmacological and non-pharmacological interventions to support delirium recovery, maximize patient safety, and reduce distress from symptoms.

Total pain and comfort theory: implications in the care to patients in oncology palliative care

ABSTRACT Objective: To reflect on the possible connections between Katharine Kolcaba's Theory of Comfort and Cicely Saunders’s concept of Total Pain and the implications to the care of the oncology palliative care patient. Method: Theoretical reflection based on a literature review carried out in May 2020, in the PubMed and LILACS databases, which sought to answer the question: “Are there any theoretical-conceptual connections between Kolcaba's Theory of Comfort and the concept of Total Pain by Saunders?” Results: The knowledge of the concepts presented allows redirecting the focus of care towards individualized actions to strengthen the patient and his participation in the choices of comfort interventions. Conclusion: Understanding the connections between the concept and theory presented provides the patient in oncology palliative care with individualized and qualified care, focused on the person and not on the disease and can contribute to a greater effectiveness of nursing interventions aimed at the relief of suffering.

The art of expressive objects supporting agency in palliative care

I have been developing a model for how to use animated objects when meeting a palliative care patient and I have noticed that during these animated moments in the hospice, performing objects have represented different sites of humanity. At their best, these moments have created a performance from the patient’s story that has become shared. Moments of animation in the hospice are meetings between me and a person who is in palliative care. I have facilitated our meeting and brought a suitcase full of everyday objects with me. A patient is given a story and then cast in their own story with objects they have chosen. Meetings with patients in palliative care made me think about patients moral agency. A moral agent is a being who consciously puts moral activities into practice. Expressive objects telling stories for a patient is one place where moral agency survives in the hospice setting and where a palliative care patient can act for a while as a member of a moral community. In this article, I share my model of expressive objects related to my practice.