Palliative care can be a highly complex, emotionally-charged medical specialty. Many patients transitioning to end of life care are experiencing painful symptoms and turbulent emotions, and often are accompanied by family members who play a role in healthcare decisions. According to the World Health Organization (WHO), “[palliative care] involves effective symptom management to address the physiological manifestations of diseases; interventions to promote the social, spiritual, and emotional well-being of patients and their families; and end-of-life (EOL) care to support patients’ greatest comfort and dignity when death is imminent”.
You have a responsibility as an NP practicing palliative medicine to make informed decisions with care, sensitivity, and attention to detail. Here, we break down the most important things to know when supporting patients through the later stages of their lives.
Managing symptoms
The main goal for palliative care should be to reduce pain and preserve quality of life. This includes assessment of pain levels and the root causes of pain, along with finding the most effective, non-invasive solutions for pain and distress. Your assessments of patient pain level should be conducted through open ended questions, which can help determine if pain is physical, emotional, or both. It may be helpful to use validated tools like the Edmonton Symptom Assessment System (ESAS) to quantify pain intensity.
When addressing pain with drugs, the rule of thumb is to follow the “start low, go slow” policy. This is especially true with strong sedatives and opioids. Older adults and those with organ dysfunction (renal/liver) require careful dosing. Monitor closely for side effects like delirium, constipation, and respiratory depression.
Related: Pain Management Boot Camp for the Primary Care Provider
Opioid rotation
When a patient’s pain is resistant to opioids, strategic rotation through other drugs can help alleviate pain more effectively. To safely rotate opiates for a single patient, try this protocol:
- Add up the patient’s current total oral morphine equivalent daily dose (MEDD)
- Choose the new opioid based on renal function, resistance severity, and responses to past opioids
- Convert the current opioid dose to an equivalent dose of the new opioid
- Reduce the calculated dose by 25–50% to account for incomplete cross-tolerance
- Monitor and adjust dose as needed
Other symptoms
Addressing dyspnea should be high on your priority list. Labored breathing can be as distressing as pain. While drugs can help, non-pharmacological solutions include position adjustment and strategic fan placement. Delirium is also common in patients close to death. It is not uncommon for patients to have visual or auditory disturbances, speak to people who aren’t in the room, or report seeing deceased loved ones. While these visions may be cathartic or comforting to some patients, others may be disturbed. Rule out reversible causes (infection, meds, metabolic), and consider haloperidol for agitation or distress.
Patient and family communication in palliative care
The emotional aspects of your palliative care position are just as crucial as the clinical ones. Sensitivity, compassion, and realism are key to successfully guiding patients through the end of their life. When emotions are heightened and tensions are high, communication can be even more difficult. Use these techniques to mitigate expectations, give clear instructions, and address questions with patients or their family.
“Ask-tell-Ask”
This communication framework involves asking permission → telling the information clearly → and asking for understanding/emotion. This helps structure discussions about prognosis, goals of care, or bad news.
Asking permission:
- “Can I ask what you understand about your illness so far?”
- “Would it be okay if I shared what the scan results show?”
- “How much do you want to know about what to expect?”
Telling information:
- “The scan shows that the cancer has grown despite treatment.”
- “This means that the treatment is no longer working.”
- “I wish the news were better.”
Asking for emotional expression:
- “What’s going through your mind right now?”
- “Does this match what you were expecting?”
- “What questions does this bring up for you?”
Related: Cannabis Use for Symptom Management in Palliative Care Patients
Navigating family communication
It’s up to you to support a terminally ill patient’s family during a time that often feels isolating and lonely. This includes speaking in clear terms: now is not the time to bombard family with technical or clinical language. Break down prognosis, care strategies, and patient updates in the most simple terms possible. Remember to listen more than you speak. Grief is moved through when dialogue is open and a family’s concerns are validated.
Remember to balance honesty with kindness. Do not sugarcoat a patient’s situation, but avoid excessively describing symptoms that may be distressing for a family member to hear. Some loved ones may want comprehensive education on what exactly is happening to their family member at a given time, while others would rather know less intricate details. Use your best judgement to gauge what a specific person needs and when.
