Helping Families Manage End of Life Pain at Home

In the oncology infusion clinic, sometimes I provide care for patients whose pain medication management is not under their control.

Typically, this patient has rapid disease progression, almost always with metastasis to the spine. They are easily identified by their need of mobility assistance. They are in pain even while lying in bed. Often they talk to you with their eyes closed. They are too sick to speak for themselves.

Also typically, a family member accompanies them. That person can recite by rote not only the name of all the patient’s prescribed medications, but the doses, and when they were last given. The caregiver provides a detailed report of the patient’s diet, stools, and urinary output. Glancing at the patient, I see he or she is freshly bathed, and dressed in clean clothes. Obviously they are well cared for.

Next, I assess for the fifth vital sign: pain. The patient’s body language prepares me for a high number. I am not surprised when they report an eight out of 10 or greater. I see on the home medication list that their oncologist has prescribed both a long-acting pain medication and a short-acting one for breakthrough pain.

I ask, “When did the patient last have pain medication?” The caregiver answers, “Last night.” I ask,  “Why didn’t patient didn’t have a dose in the morning before their appointment?” The answer is something like, “He needs to walk more.” “He doesn’t eat enough when he takes pain meds.” “I didn’t think he needed it,” and a long list more. Family members withholding a cancer patient’s pain medication are a common problem confronting hospice nurses.¹

It is my experience that when pointing out to this archetypical caregiver that their loved one is in pain, they begin crying. They almost always have the vial of long-acting pain medication in their purse or pocket. I get an order from the oncologist, and together, we treat our patient for pain.

I explain that the bone pain will not go away, it will only worsen. The patient will need more pain medication, not less. Then we discuss loss and grief, and how painful the feelings are. The caregiver sees their loved one floating away on a cloud of analgesics, and illogically thinks that withholding narcotics will keep them here longer. There may be other reasons the caregiver withholds pain medication, as well.²

How can an oncology nurse help this caregiver?

  • Provide a safe environment for the caregiver to talk about their grief.
  • Use the word “medications” when describing opioids and narcotics, instead of the word “drugs,” which has a negative connotation when associated with these necessary tools of pain management.
  • Is the patient eligible for home hospice care, which provides support and respite for the caregiver? If yes, provide the necessary referrals.

Encourage the caregiver to be brave. Appropriately treating their loved one’s cancer pain is a declaration of love.

And I say a little prayer for all of us.

Have you had similar experiences in your practice?



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