One of my core beliefs in palliative care is “It all starts with communication” even and perhaps most especially when talking about opioids. It starts when talking about a parent’s assessment of their child’s distress (pain or breathing or unknown source) and the provider’s assessment of the situation. It continues as we explore what’s been tried to alleviate the suffering thus far. It then includes talking about the family’s experience with opioids: has a family member lived with substance abuse or did grandpa die “soon” after hospice initiated a particular opioid or what have they seen on TV or read about in a magazine? Parents often express the very real fear that they will give “too much” or be the one who gives “the last dose” before death.
In other words, it is often very tricky when speaking about the use of opioids in children. The fears can be many – of drug addiction, having it “in our home”, administering too much, will I/it cause or hasten my child’s death? “
What the opioid crisis has taught us is that we all need to be more aware and educated about opioids, including palliative care clinicians. We need to listen and learn from the addiction specialists on the crisis they deal with constantly, and we need to include screening and follow up with those to whom we prescribe opioids. Thankfully we have the ongoing studies and research. We now also have better safeguards about prescribing, and more accountability asked of prescribers and families, pharmacies AND the drug companies.
Here were some of my realities as a prescribing palliative care clinician:
Children who have a serious illness and can communicate with us are VERY reluctant to take anything which makes them sleepy or that they fear will alter their mental capacity. By and large, they get the message “Just say no.”
Parents’ fears are real; so it is essential that we educate them in what our hopes are for what the medication will and will not do and how we are going to monitor that. We also need them to agree to monitor opioid use carefully at home: using a lock box, documenting doses and presumed evaporation and spillage; and using best practices for administering a correct dose, including careful measuring.
We must also fight for our palliative care patients to have access to any medication that might be beneficial. This includes advocating with those making the laws and rules and educating them about the palliative care patient’s needs. This may include educating them about prescribing for symptoms that lawmakers are not familiar with: Methadone is not just for recovery maintenance and Intra-nasal fentanyl should not be just for cancer patients. And we need to help lawmakers understand what is reasonable to expect and ask of these families in such practical matters as frequency of clinic visits, screening tests and physically picking up prescriptions.
The presence of pain, difficulty breathing, neurologic storming episodes, and transient or unexplained suffering means we must employ ALL methods of relief: pharmacological and non-pharmacological. Opioids and non-opioids. The best outcome happens when we find the right medications and right dose, and couple that with the caring presence of those who matter most to the child.