End-of-Life Nursing Education Consortium comes to BWH
By Jacqueline C. Feeney, MSN, RN
Medical ICU
Joan is a 29-year-old woman who was admitted with end-stage, metastatic breast cancer. She was diagnosed about one year ago and her cancer is aggressive. She has endured multiple surgeries, radiation therapy and many rounds of unsuccessful chemotherapy. She recently has completed a round of chemotherapy that has left her weak and exhausted. Her blood counts reveal that, once again, the chemotherapy has not rid her of her cancer. She is in a lot of pain and moving has become quite difficult. Her breathing has become very labored, which is what has brought her into the hospital. Joan’s parents and her three older siblings are ever-present at her bedside encouraging her to “fight.” Joan agrees that she will fight hard, when her family is at her side. However, when they step away from the bedside to give her privacy during her care, Joan confides in you that she “has fought really hard and is suffering a great deal.” She would really like to be made comfortable and get some rest, she doesn’t want anymore treatment. She also confides in you that she “could never hurt her family by telling them her wishes.” She states that she is afraid that her family will think that she has given up.
At this point, you, her nurse, page her oncologist to the bedside, and he then has a similar conversation with Joan while her family is at the cafeteria. At the conclusion of her discussion with the oncologist, Joan asks that you and her oncologist meet with her family and disclose her wishes to them, outside of her room. The family meeting is convened, and Joan’s wishes and concerns with expressing them to her family are explained. Her family is sad, but agrees that they would like to honor Joan’s wishes. They know that she has suffered a great deal on their behalf and agree that they should focus on her comfort now.
Upon leaving the family meeting, Joan’s family returns to her bedside, and the whole atmosphere has changed. Everyone is more relaxed and enjoying each others’ company. There is a lot of storytelling and reminiscing. There are also tears. Everyone has a chance to tell Joan “I love you” and “thank you for fighting so hard.” They tell her how brave she has been over the past year, and that they are so proud of her. They bring her some of her favorite items from home: pictures, music and pajamas. Joan is kept very comfortable, and her relief is palpable. When she passes away, she is surrounded by her loving family and is at peace. It was a good death, which you, as her nurse, helped Joan achieve.
The End-of-Life Nursing Education Consortium (ELNEC), a project sponsored by the American Association of Critical Care Nurses, is aimed at enhancing professional nurses’ skill and level of comfort when delivering end-of-life and palliative care. The ELNEC curriculum provides fundamental education, which focuses on nine specific modules that have been identified as essential to training nurses in end-of-life and palliative care. The specialized knowledge and skills taught to nurses in the ELNEC training program will lead to improved end-of-life experiences for patients and families. Individually and as a group, nurses play a very important role in improving care at the end-of-life because of our unique position to recognize needs of patients and families and identify creative ways to meet those needs. ELNEC training prepares nurses to provide expert end-of-life care to patients and their families.
In October, Brigham and Women’s Hospital will host its first two-day ELNEC course. The nine modules and their clinical application will be the focus of the course: Nursing Care at the End of Life; Pain Management; Symptom Management; Ethical/Legal; Cultural Considerations in EOL Care; Communication; Grief, Loss, Bereavement; Achieving Quality Care at the End of Life; and Preparation and Care for the Time of Death. There will also be an additional module related to end-of-life care practices at Brigham and Women’s Hospital.
Upon completion of the ELNEC training course, participants will be valuable resources for staff nurses on their individual units, as well as to the hospital. The October course is currently full, but if you are interested in putting your name on a waiting list or receiving notification of any additional ELNEC courses, please contact Julianne Nee at the Center for Nursing Excellence at 617-525-8757 or jnee@partners.org