UBC Objectives: Care of Children + Adolescents, UBC Objectives: Palliative Care, & Priority Topic: Palliative Care

By the end of postgraduate training, using a patient-centred approach and appropriate selectivity, a resident, considering the patient’s cultural and gender contexts, will be able to...

• Demonstrate knowledge of pediatric palliative care issues
• Establish and advocate for the patient’s goals of care, and needs (spiritual, emotional and psychosocial).
  • Identify situations that may benefit from a family meeting and facilitate these meetings.
    
  • Support patients and families coping with loss and bereavement, grief (including anticipatory grief), risk factors for atypical grief and develop an awareness of local resources to assist families through this process
    

Key Feature 3a: In patients approaching the end of life: Identify the individual issues important to the patient, including physical issues (ex: dyspnea, pain, constipation, nausea), emotional issues, social issues (ex: guardianship, wills, finances), and spiritual issues. 
Skills: Patient Centered, Clinical Reasoning
Phase: History

As expressed in my previous post, palliative care aims to alleviate total suffering, including sources of physical pain or discomfort, along with emotional, social, and spiritual concerns. In patients who are approaching end of life, it is important to explicitly screen for concerns in these various domains, as some patients may not be as forthcoming about certain types of distress. Common physical issues that affect patients approaching the end of their life include pain, dyspnea, constipation, and nausea, and these are so common they are worth screening for specifically. Asking how a patient is feeling emotionally can open up a conversation about mood and anxious distress, and gathering  a good social history can provide a framework for exploring social issues and revealing the extent to which advance care planning has been explored. Spiritual issues can often distress patients, consciously or unconsciously, as many patients are faced with difficult existential issues as they approach end of life. Taking a spiritual history is not something clinicians are trained to do very often, but it is essential in providing care that truly seeks to alleviate all sources of suffering. The approach I've adopted to taking a spiritual history comes from "Palliative Medicine: A case-based manual" by Doreen Oneschuk, Neil Hagen, and Neil MacDonald. It is summarised by the acronym "FICA" and is demonstrated in the following table as published in the book:

It's worth mentioning that the overall approach to pediatric palliative care is much the same, considering many of the same issues as for the adult patient. However, according to UpToDate, "Although the goals of palliative care in children are the same as those in adults, implementation of care is different because of the need for age-based care, differences in the underlying illnesses, the emotional and psychological issues in dealing with a poor outcome in a child, and the necessity of dealing with the child, parents, and in some families, siblings." The need for a strong team-based strategy with pediatric expertise cannot be stressed enough, and meetings that include the family are important to put together the most understanding and resources to maximize care. It's also important to consider how the patient's family and other loved ones may be impacted by anticipatory grief and eventually loss and bereavement of their loved one. Ensuring these support people are themselves supported promotes the capacity for the patient to be better cared for, and can help promote healthy adaption to life after loss. It helps to know the resources available within your community, as well as resources online or in print. These principles of integrating and caring for a family network are also esteemed for the care of adult palliative care patients.

Once you've asked and begun exploring any sources of discomfort, it's important to be an advocate for the patient in attempting to relieve their burden. Although many patients approaching end of life exude an astonishing degree of energy and capacity for autonomy despite the circumstances, many others may be too exhausted to do so, or not be aware of the possibility that some, if not most, of their physical, social, emotional, and spiritual suffering can be alleviated.