By MICHAEL SHAPIRO, MD, Chief Medical Officer, Cornerstone Hospice and Palliative Care

A unique protocol implemented throughout Cornerstone Hospice and Palliative Care's seven-county region has been successful in helping patients and their family members cope through episodes of dyspnea. Approximately 55% of Cornerstone Hospice patients receive care in their homes (does not include nursing homes or assisted living facilities). These patients face life-limiting illnesses such as cancer, C.O.P.D., heart disease, stroke, and dementia. Any of these conditions may lead to the shortness of breath or dyspnea.

The Dyspnea Self-Management Protocol involves a non-pharmacological approach to easing a patient's dyspnea and/or associated anxiety by providing tools and techniques to help them regain a more normal and relaxed breathing pattern.

The idea for the protocol began with a Polk County patient suffering from C.O.P.D. The nursing team was vigorously searching for alternatives to traditional treatments, as the patient refused to take recommended medications to help treat her frequent episodes of dyspnea. The team's social worker, John Burd, MDiv, M.Ed. MSW, BCB, attempted a non-pharmacological technique known as an "affect bridge" (a technique common in many therapy models in which the patient's awareness is focused on a present feeling or affect, and uses that to bridge their conscious awareness to an earlier seminal experience). He discovered that her reluctance to use medication was due to a childhood trauma in which she lost control. This thought of losing control of her mental abilities, because of the medication, led to a PTSD-like panic response during these episodes.

Once identified, Mr. Burd realized traditional treatment methods would not work. He researched the effectiveness of using a hand-held fan for easing breathlessness. Much like a high-pressure system, the hand-held fan can make breathing easier for certain individuals.

Mr. Burd instructed the patient on proper use of the fan along with structured breathing and anxiety-reducing relaxation techniques when dyspnea presented. During the training, he utilized a pulse-ox to visually illustrate how these basic steps quickly could improve her oxygen saturation. For this individual, seeing was believing, as it dramatically increased her confidence in being able to maintain control and self-manage her anxiety/dyspnea episodes. On subsequent visits, the techniques were reiterated and rehearsed, and at times the pulse-ox re-incorporated to provide essential biofeedback; thus, reinforcing the effectiveness of the protocol and the control she had in resuming comfortable breathing.

An essential component of hospice care is the training of family members or caregivers to assist with a patient's comfort and care. Mr. Burd had seen firsthand the vital role caregivers play in helping to calm a patient experiencing dyspnea. Working with the hospice nursing team, he developed a curriculum to train and rehearse dyspneic situations with the patients and their caregivers.

Among other things, caregivers were taught to hold their loved one's hand while holding the fan towards the patient's face and calmly coaching the patient through the rehearsed breathing techniques. Consequently, caregivers would feel more relaxed and confident in working through their own sense of panic from witnessing their loved one's distress.

After a year and a half of working to implement these techniques, the Cornerstone Hospice team realized one metric was the most indicative of a patient's success in self-managing dyspnea: Whether the patient and caregiver had the confidence to be able to self-manage an episode of shortness of breath.

For example, after demonstrating breathing techniques, the patient and caregiver are asked to rate their confidence in being able to self-manage a potential episode.

Next, they are asked under what circumstances they would call 911. If the caregiver indicated that seeing their loved one experiencing shortness of breath would prompt them to call for immediate help, then the team would know more reinforcement and rehearsal was needed. However, the team always clearly reinforced to the patients and caregivers that they could call for emergency assistance and/or 911 if they felt it was necessary.

Once the protocol demonstrated success, the Cornerstone Hospice team determined that social workers on the patient care teams would implement the program.

The National Association of Social Workers states that a key role of the social worker in the hospice setting is to provide psychosocial education to patients and family caregivers about coping skills, hospice and palliative care philosophy and nonpharmacological symptom management strategies.

Because biofeedback played a critical role in the genesis of the program, Cornerstone Hospice sent John Burd to become biofeedback certified.

Upon completion of his training, Mr. Burd utilized biofeedback equipment to demonstrate the effectiveness of the described methods to fellow social workers. The team could observe muscle tension, skin conductance, body temperature, and heart and pulse rates. They could see when patients were using the incorrect muscles during self-management techniques and learned how to redirect and correct these situations. The biofeedback data allowed the social workers to track how a patient in distress could normalize breathing using the techniques.

Social workers were taught to integrate pulse oximeters as a biofeedback device into education sessions with patients and caregivers.

The Dyspnea Self-Management Program is now implemented throughout the Cornerstone Hospice service area. Care teams regularly monitor and evaluate a patient's ability to execute the skills because as a hospice patient's underlying condition continues to progress and decline, they may become physically and/or mentally unable to utilize the techniques they were taught.

From an organizational standpoint, the DSMP has enhanced the interdisciplinary care teams' ability to provide patients suffering from dyspnea with a new pattern of nonpharmacological interventions. Care teams have consistently observed significant satisfaction and peace of mind in their patients' faces. One patient commented that she no longer felt "the elephant sitting" on her chest, while another caregiver reported that had he not be "taught that stuff, I would've called 911, like I used to."

For patients successfully utilizing these skills, the improved outcomes have tremendously contributed to their overall quality of life as they traverse the road of living with a life-limiting illness.

Michael Shapiro, MD is Chief Medical Officer at Cornerstone Hospice and Palliative Care, a not-for-profit, community organization since 1984. Dr. Shapiro joined Cornerstone Hospice in 2013 and provides oversight and clinical stewardship of all medical practitioners at Cornerstone. He Shapiro attended the Medical School at Ross University and completed a residency at Mercer University School of Medicine/Medical Center of Central Georgia. He completed a Fellowship in Hospice and Palliative Medicine at University of South Florida, Morsani College of Medicine. Over 7,000 people in Lake, Sumter, Orange, Osceola, Polk, Hardee and Highlands counties benefit from Cornerstone programs each year. www.cornerstonehospice.org.