Managing Pain at the End of Life

One of the first questions we ask hospice patients is, “what really matters to you at the end of life?” Managing pain is often at the top of their list.

Controlling pain helps patients and families focus on the important moments they have together. Recent evidence also shows that hospice patients who get specialized medical care for their pain live longer, have less depression and a higher quality of life during the course of their illness. That specialized care is called palliative care, a medical practice focused on relieving symptoms, pain, and stress of a serious illness.

One study in the New England Journal of Medicine found that lung cancer patients receiving palliative care lived almost two months longer than those who had standard care. 

Have conversations about pain early and often

Effective pain management begins with a conversation about your current needs and what you want as care progresses.

Everyone deals with pain and pain medication differently. This is your time to honestly share your current level of pain, your tolerance for pain and how you want caregivers to respond to your pain in the future.

Not all patients experience pain at end of life, but understanding the unique nature of each patient’s pain and how they want to be treated is an essential part of hospice care.

If a patient is unable communicate their level of pain, the hospice care team works hand-in-hand with families to co-manage treatment.

A doctor or nurse may ask about the kind of pain a patient is experiencing. Different kinds of pain, such as bone pain or nerve pain respond to different medications. Knowing if the pain is in one place or radiates, if it’s constant or comes and goes will help us get the right balance of medications and therapies. 

Staying ahead of the pain

Understanding how and when to take medications is essential for controlling pain. Many pain medications require patients and families to take them a regularly and on time, regardless of current levels of pain.

“I often share a story about how pain medicine is like water preventing wood from catching fire,” say Synthia Cathcart, Vice President for Clinical Education and Development at Compassus. “If you keep a piece of wood wet, it’s difficult to burn. But, if that wood dries out and catches fire, it takes a lot of water to put it out. Pain meds are the water that keeps pain from flaring out of control”

Concerns and questions about pain to consider:

·        Will my pain medications make me unable to function?

·        Will I get opioids for pain and are they safe?

·        What about side effects?

·        What about a sudden onset of pain? 

Will my medications prevent from functioning normally?

Managing pain is actually about helping you get the most out life. Extreme pain starts a downward spiral of stress, troubled sleep and depression that

Pain management starts with talking to your hospice caregivers to share your preferred balance of pain relief. Your doctor will match medications and other pain management therapies to your level of pain and step up to stronger medications as needed. On a practical level, our hospice care team attempts to offer the right drug, at the right dose, at the right time.

Will I get opioids for pain and are they safe?

Opiate medications are an effective option for aggressively treating pain, but only prescribed when they are timely and effective. Some of the fears about opioids aren’t relevant to hospice care.

The grogginess associated with opioids almost always tapers off after a few days, without any loss as an effective treatment for pain.

When opioids are used as prescribed, addiction is not typically a problem for hospice patients. Patients should never feel ashamed about taking a doctor-prescribed medicine to ease the pain of a terminal illness.

Families sometimes fear that opioids will hasten their loved one’s death. Again, studies and experience show that proper use can extend life.

What about side effects?

Medication side effects, including constipation and nausea, are often easily controlled in hospice patients.

about a sudden onset of pain?

Hospice providers are trained to help patients and families deal with breakthrough pain. The key is close communication with hospice caregivers and having a plan in place for emergencies.