Lortab

"Kathy, Judy is gone." As I sit in my meeting at work with my cell phone to my ear, those were the words I had both dreaded and hoped for. Judy was my friend, the sister I've never had, my confidant and she was a cancer patient.

Judy, my "horsy" friend who had more energy than I thought possible, who did for others, who opened her home and heart to all, was gone. I wish I could say her passing was gentle and with dignity, but with great sorrow I cannot. In the year 2001, even with new advances in pain management and pain being promoted as the 5' vital sign to the health care community, Judy suffered the last few days in horrible pain. Where did we fail her? Probably in many places: physicians and nurses who couldn't be truthful when she asked about comfort measures. Or maybe it was the system that says no hospice care if you are on chemo. Or maybe the cancer that doesn't recognize holidays or weekends when no support services are available.

Judy's cancer chose Memorial weekend to go rampant. By Saturday afternoon Judy's pain had increased. She became increasingly jaundiced and she had herpetic lesions that were bleeding in her nose and mouth. When we paged the physician and told him what was going on, he said, "it sounds like things are spiraling out of control. What pain meds does she have?" We told him, "none." Since it was a weekend, he said he couldn't give her the Fentanyl patches or MS drops we had hoped for. Instead he prescribed Tylenol #3. Would this work for metastatic cancer in the liver? Almost as an after thought, the physician told me, "you'll need to let the family know there is nothing left to do now." As I hear his words I am looking into the eyes of Judy's husband and mother. How do I do this? As I go to Judy's room, her first question is, "what did the doctor say?" With our arms around each other I tell her there is no other treatment available and that we would try the pain medications.

It is now Monday, no one has slept, and Judy remains in pain. We are all in agony. As I reach down to help Judy turn, she puts her tiny arm around my neck, and with tears flowing down her cheeks she asks, "Oh, Kathy, what are we going to do?" I place my forehead to her cheek and feel her tears. "I don't know honey, I don't know." I am angry. This is wrong. Where is the comfort? Where is the dignity? I contact the doctor on call. She says, "I would get you a prescription, but only her physician can write Level II prescriptions." (Who made that rule?) "Okay, let's try Lortab and Hydrocodone elixir." "Great! Cough syrup!" We're desperate, so we try. it.

The family is gathering. As they sit and look at me, Judy's daughter asks, "Kathy, tell us the truth. Where are we?" I don't want this job! I want to be her friend, not a nurse, but the choice is not mine. With jumbles thoughts and words, I try to tell this family that we are losing Judy. Anguished, frustrated, and fearful, Judy's family and friends say, "We're not ready!" Monday night, or is it Tuesday morning? The pain! The pain! It won't stop so we give her the elixir as often as possible, until finally Judy sleeps. Is it sleep free of pain or just her body shutting down from the pain? I don't know.

Tuesday morning while I'm at work, Judy's daughter and husband go to the doctor's office. His first statement was, "So the chemo isn't working?" They tell him in frustration, "She's dying, please help us." Finally at 9:30, Tuesday morning, Judy receives hospice care and the Fentanyl patch. At 1:00 p.m. I answer my cell phone to hear "Kathy, Judy is gone."

Is this an isolated case? Did Judy fall in a health care crack? Not from what I've heard from others. What has happened to allowing cancer patients to die with dignity? Where are all the wonderful medications that we, in the medical field, know are available? Who is making the decisions of when Level II medications are started on patients; patients who are terminally ill?

Federal regulations have made pain the 5' vital sign for hospitalized patients. But those who are outpatient or terminally ill and want to die at home in their own environment with family and friends at their side are not being given the same level of care. Physicians, at times, have chosen to continue chemo as a last ditch effort, which prevents many from receiving hospice care to help patients and families cope with final stages of terminal illness. How many families have been forced to hospitalize their loved ones due to the horrific pain or lack of home care, and perhaps taking away their dignity and control. A hospital can be the worst place for terminally ill patients to spend their last hours, but due to circumstances beyond their control, that is exactly where many families must say their last goodbyes.

Those of us in the medical/health field must be responsible to learn how to communicate honestly and profoundly to patients and families dealing with terminal illness. We also must put our own biases and personal issues aside and recognize it as our responsibility to find the best pain control available for each patient as they go through chemo therapy and chronic or break through cancer pain. Last, but not least, we must recognize when it is time to stop cancer treatment and allow the patient to take the final path with dignity, support and encouragement.

Isn't it time that all of us in the nursing field become proactive and speak out. The question is... who is listening?

by Katherine Maria Ure, RN

Copyright Kansas State Nurses Association Jun/Jul 2002
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