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.
Evidence shows that people who get specialized care for their pain live longer, have less depression and a higher quality of life during the course of their illness. A study in the New England Journal of Medicine found that patients with the most common type of lung cancer who received palliative pain care lived almost two months longer than those without intensive support for managing pain.
Effective pain management begins with a conversation about your goals 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.
If a patient is unable to communicate their level of pain, our hospice team has experience working with families to identify pain and 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, helps patients get the right balance of medications and therapies.
Understanding how and when to take medications is essential for controlling pain. Most pain medications need to be taken on a strict schedule and exactly as prescribed, regardless of current levels of pain.
“I often share a story about how pain medicine is like water and pain is like dry wood ready to catch fire,” says Synthia Cathcart, Compassus vice president for clinical education and development.
“If you keep a piece of wood wet, it’s difficult to burn. But, if that wood gets dry and catches fire, it takes a lot of water to put out the flames. Pain medicine is like the water that prevents pain from flaring out of control.”
Questions to consider about pain management
- 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?
Managing pain is about finding the right balance of pain relief while maintaining quality of life. This requires honest and regular conversations with your doctor, nurses and pharmacists.
Opiate medications are an effective option for aggressively treating pain, but only prescribed when they are 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 reduction in controlling pain.
When opioids are used as prescribed, addiction is not 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. Uncontrolled pain can sap a person's energy, in both body and mind. Studies and experience show that precise doses of opioids can help patients regain their strength and extend better quality of life.
What about side effects?
Medication side effects, including constipation and nausea, are often easily controlled in hospice patients. Talk to your caregivers about unwanted side effects. Doctors can reduce or adjust medications or suggest alternate therapies.
The keys to dealing with breakthrough pain are:
- "Reading" a patient for early signs of pain
- Quickly addressing that pain
- Close contact with the hospice team
Hospice nurses have experience in anticipating problems and teaching family caregivers how to relieve sudden and long-term pain.