Authors

  1. Appelzoller, Maria C. PhD

Article Content

A Journal Article Review of "The Palliative Power of Storytelling: Using Published Narratives as a Teaching Tool in End-of-Life Care"

To the Editor:

 

I present here a researcher's and clinician's experiential perspective on the article "The Palliative Power of Storytelling: Using Published Narratives as a Teaching Tool in End-of-Life Care," which appeared in the Journal of Hospice and Palliative Nursing July/August 2007 issue. Wittenberg-Lyles and her colleagues undertook a content analysis study of published narratives from healthcare providers in end-of-life care settings.1 The study examined 105 narratives that were published between 1998 and 2005; results were published in the July/August 2007 issue of the Journal of Hospice and Palliative Nursing. The Wittenberg-Lyles study analyzed the following themes: (1) relational intimacy, (2) control, (3) spirituality, (4) expression of emotions, and (5) devotion and loyalty. Most of the narrators in the study were women (52%). Narrators consisted of physicians (50%), nurses (23%), other healthcare providers, such as social workers and medical faculty employees (22%), and medical students and hospital staff (4%). The researchers concluded that further training is required in medical schools in the area of narrative medicine curriculum. This training would prepare professionals in medical fields to be better able to handle issues concerning extension of length of life and preservation of quality of life when dealing with terminally ill persons. Storytelling lets these "students" of medicine know what others have struggled with in their practice and how they handled such issues. These lessons learned from past narratives can be applied to future practice and alleviate some of the struggles when faced with end-of-life care issues.

 

The first of the five criteria, relational intimacy, revealed that relationships between the patient and the healthcare practitioner are very important. A "good death" clearly implied the value of such a relationship. The value of the relationship between the patient and the healthcare practitioner helped to alleviate feelings of isolation and abandonment on the part of the patient. Some very important elements of relational intimacy are (1) that the patient be given autonomy in the decision-making process, (2) that physicians deal with their own death insecurities first in order to be effective, and (3) that open communication and trust be developed. The second criterion dealt with control on the part of healthcare practitioners. Many of the narratives described how healthcare practitioners saw not the patient but rather the disease. Seeing the disease allowed the healthcare practitioners to remain task oriented, thus placing the disease first and the patient second. It is much easier to control a process than a human being; therefore, the focus on the tasks to be performed took priority. With human beings you also get involved, whereas with tasks you perform a job. Physicians felt they could control a patient's life by applying medical processes. Feelings of inadequacy resulted when patients died.

 

Spirituality is the third criterion. Through building a healthcare practitioner-patient relationship, many practitioners gained a new awareness of the need for spirituality in end-of-life care. Healthcare practitioners witnessed acts of surrendering to fear, bravery, courage, comfort, and peace in end-of-life care. Narratives demonstrated that death events also reinforced spiritual beliefs. Many practitioners documented that having participated in the death event served as a tremendous learning experience for them. Expression of emotions, the fourth criterion, revealed that together with control, healthcare professionals felt they must also contain their emotions because of the tension that exists between science and humanism. The study tells us that physicians in particular felt that they had to hide their emotions. Physicians are taught in medical school to relate to patients with an air of emotional detachment in order to fully succeed in the scientific approach. The need to control emotions serves to distance them from the patient, which reduces the effectiveness of a "good death."

 

The final criterion-devotion and loyalty-means going beyond good relational intimacy in healthcare practitioner-patient relationships. Devotion and loyalty cross the threshold into trust and open the healthcare practitioner-patient relationship to a whole new realm. A good solid relationship, built on devotion and loyalty, helps the practitioner to communicate better with the patient. It helps the practitioner assist the patient by facilitating his or her last wish or work that must be completed in order for the patient to die well. The practice of actually caring for patients can come a long way in end-of-life care. The study revealed that narrative medicine curriculum is very much needed in medical training. Such lessons learned from previous experiences would equip new healthcare practitioners to better assist patients in end-of-life care. "From a pedagogical perspective, narratives reveal the socio-cultural, political, and historical understandings of health care and serve as a vehicle for introducing these topics within undergraduate curriculum."1(p204)

 

I agree with the authors that much needs to be improved in the area of teaching medical professionals how to build loving, trusting, and caring relationships with dying patients. End-of-life care is in great need of understanding individuals who are there for and with the dying-wherever they are-and asking nothing in return. The dying deserve to have an "ear" to listen to them, and if we listen closely, we will learn a lot from these individuals during their last months, days, and moments. It is both a privilege and an honor to be at the bedside of someone who is dying.

 

My work with the dying has led me to know people in a way I never thought possible. This began with my own mother, who became my "baby" at the end of her life. Being able to love someone the same way she loved you when you were a baby and unable to care for yourself was an incredible experience. It continued with my patients who spoke to me in symbolic language (the language of the dying) and patients who repeated back to me days later everything I said to them when they lay semi-comatose, my sweet ladies who were so brave in their last battles with life, my gentleman who told me about his scandalous life, and my colonel who died with such honor and grace. It has truly been a blessing to work in this field.

 

Maria C. Appelzoller, PhD

 

Albuquerque, NM

 

Reference

 

1. Wittenberg-Lyles E, Greene K, Sanchez-Reilly S. The palliative power of storytelling using published narratives as a teaching tool in end-of-life care. Journal of Hospice and Palliative Nursing. 2007;9(4):198-205. [Context Link]