An ELNEC (End-of-Life Nursing Education Consortium) training was recently held at Wuhan University HOPE School of Nursing in China. Carma Erickson-Hurt, an ELNEC Instructor and Project HOPE volunteer, gave the two-day seminar which included information about palliative care, pain and symptom management, communication, ethics, loss, grief, bereavement and care during the final hours.
In China, palliative care and hospice care are in the very beginning stages of development. Concepts such as pain management, symptom management, bereavement, social and psychological issues that accompany serious illness are not well addressed in the plan of care. Most doctors and nurses have not received any formal education in palliative care. In a country of over a billion people there are fewer than 50 hospices and only a handful of palliative care programs. In Wuhan, a city of over 10 million, there is one small hospice staffed with one doctor and four nurses. The support and resources for palliative care and hospice is inadequate to meet the needs of an aging population facing chronic diseases and a significantly increasing cancer rate. It is imperative that holistic palliative care is incorporated in the treatment plan.
The training was very interactive and participants shared many case examples of the challenges they have faced in addressing pain and psychological care of very sick patients. We discussed the cases and various interventions and alternatives nurses could use in their daily practice caring for patients. We did several case studies and role plays, to act out appropriate conversations and responses to various scenarios. Some participants became emotional as they shared difficult situations they encountered and how they felt powerless to address the situation. After the course, I worked with several inpatient units on their sick patient rounds and as a team we discussed various cases. The post course rounding was very effective as it helped nurses to utilize their new knowledge at the bedside.
One area that really seemed to appeal to the nurses was how they could use humanistic interventions such as touch, empathy and conversation skills learned in this course to approach care. Nurses realized that there are many interventions they can provide in caring for patients and families and those interventions are not limited to medications. The nurses began to realize the concept of “quality of life” as part of the care they can provide.
One of my biggest breakthroughs was in the ICU. I discussed with the nurse and doctors the importance of talking to patients, even if they are comatose or intubated and may not be able to verbally reply. Although this is common practice in the United States, in China it is not.
There was a 15-year-old patient in the ICU for several weeks; he had developed sepsis and was intubated. I discussed with one of the ICU residents the importance of talking to the patient and the next day she told me, “I told his mother to touch him and get close to him, touch him and talk to him.” Although this may seem basic to many ICU staff in the U.S., in China this was not a typical approach to care as the focus is usually on the medications and technical interventions. The humanistic piece is not always addressed.
This ICU resident was so happy that she could tell the mother of this patient what she could do. She felt empowered that she could not only help the patient, but also help his mother. The ICU resident now wants to learn more about palliative care.
Several days later a young nursing student from the HOPE School of Nursing had this same 15-year-old patient. As a student, she felt a bit overwhelmed as to what she could do. I taught her to get up close to the patient, touch him and look into his eyes and just have a conversation; tell him what day it is, what the weather is like, what is happening in the city, or whatever she thought she could tell him about current events. The student did this and as she talked to the patient, his eyes moved toward her and he was actively listening to her. Such a seemingly small intervention, but so very important for psychological care. As important as classroom education is, the bedside mentoring piece is equally important for staff to see the knowledge put into practice.
Because of this training an interdisciplinary “palliative care work group” has been developed. This group plans to create simulation training scenarios and will initiate discussions with hospital leadership on the way forward in developing palliative care.
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