Authors

  1. Fahey, Donna M. MSN, MFA, RN, CNL, HNB-BC

Article Content

Providing quality end-of-life care that preserves the dignity of the dying patient focuses on four areas: physical comfort, mental and emotional needs, spiritual issues, and practical tasks.1 While typical comfort care delivery in the acute care setting provides physical symptom management and protects the patient from further harm, rarely are spiritual and emotional needs addressed. Research studies cite barriers to providing emotional and spiritual care for patients who are dying, such as a lack of training, time restrictions, and low comfort level.2 Barriers to providing effective end-of-life care are associated with burnout, moral distress, and compassion fatigue, and these experiences correlate with low levels of job satisfaction.3 Failing to address the spiritual and emotional needs of patients who are dying and/or their families is a potential source of dissatisfaction experienced by nurses and other direct care professionals.2-4

 

A 24-bed ICU within a community hospital in southern New Jersey sought to improve end-of-life care delivery, and developed a new ritual for nurses to deliver based around four components: a prayer shawl/blanket, a candle, a flower, and a sympathy card. Staff conducted 48 rituals within 1 month in the ICU and 24-bed progressive care unit (PCU). This article highlights the development and implementation of an end-of-life ritual used to meet the emotional and spiritual needs of patients to create better patient outcomes and increase caregiver compassion satisfaction.

 

Ritual theory and comfort care

Rituals are repetitive actions that are mainly performed for their symbolic intent, such as lighting a candle to create light.5 The action may or may not have a functional purpose. Any functional purpose is secondary, however, to symbolic intent, like lighting candles on top of a birthday cake. These candles are milestones, filled with fond memories and wishes for the future.

 

Rituals also provide structure. In nursing, there are many routine activities, such as taking vital signs and administering medications. Their repetition provides a safe familiarity, often performed without significant mindfulness. The activity and repetition of ritual can also provide familiarity for delivering end-of-life care and removes some of the anxiety and uncertainty that nurses may feel when caring for dying patients.

 

When these actions also hold meaning for the nurse, patient, and/or family, the activity is filled with added significance and impacts the perception of care. Just as the lighting of birthday candles alerts those present that it is time to sing, performing an end-of-life ritual alerts everyone involved that something important has happened or is about to happen.5 Nurse theorist Dr. Jean Watson calls this a caring occasion, when a given moment becomes a focal point in space and time.6 This moment transcends, creating a new perception or a greater energy of its own.6 Emile Durkheim, a French sociologist, describes this as collective effervescence, an emotional energy that "makes the individual feel not only good, but exalted, with the sense of doing what is most important and most valuable."5,7

 

The term comfort care relates to a type of care that is delivered in the acute care setting, when "critical illness defies treatment, when goals of care can no longer be met, or when life support is likely to result in outcomes that are incongruent with patients' values."8 Care goals shift to comprehensive symptom management and supporting the patient through the dying process with dignity.

 

Cook and Rocker propose that care can actually be enhanced as death approaches.8 Enhancing care requires doing more than what is usually done. It requires the dying process to hold meaning for the patient and family and for their caregivers.

 

Developing a ritual

Initial development of the ritual was based on the premise that any meaningful activity could enhance care and reduce anxiety at the end of life. By examining current practice, small rituals already in practice were identified: a bereavement tray was ordered full of food and beverages for the family, rooms were cleaned, unnecessary equipment removed, lights dimmed, and music played. These examples were used to demonstrate to the staff what a ritual is and how it can be used to meet the emotional and spiritual needs of patients and families. Simply identifying these activities as important and meaningful seemed to enhance care delivery. Identifying what nurses were already doing to help patients and their families during this transitional time elevated their perception of the care they provided and the potential power and significance of ritual.

 

The ICU shared governance team conducted a literature review of interventions performed by nurses at the end of life. While several potential rituals were identified, such as aromatherapy, music, and Reiki, the team sought a simple intervention that required minimal training and could be easily implemented in 3 to 5 minutes by any provider. Ultimately, the team decided on four basic elements to be incorporated: a prayer shawl/blanket, a candle, a flower, and a card.

 

The prayer shawl/blanket. A selection of knitted shawls and blankets are provided to the unit from a local church. One of these items is given to dying patients and their families as a token of comfort and care. The ritual begins when a shawl or blanket is presented to the family and laid on the patient. A nondenominational prayer is read by the family or the nurse performing the ritual. The nurse or provider conducting the ritual uses best judgment and awareness of the family and patient's sensibilities to decide whether or not to include the prayer. While the prayer adds an additional layer to the ritual, the gift of the shawl/blanket alone is enough to provide benefit because it goes beyond usual care.

 

The battery-operated candle. A candle is placed in the room as part of the ritual. Light is thought to have both positive and negative influences on the human body and mind. The acute care environment is typically bright, with primarily harsh artificial lighting. Dimming these lights and replacing them with a diffused light can be relaxing. Light can also be symbolic. As the opposite of darkness, light provides hope in place of despair, direction in place of uncertainty, and life in place of death.

 

The flower. A white flower is placed near the candle. Florence Nightingale advocated for the healing use of light as well as color.9 In some cultures, colors are assigned different vibrations and resonances, and the energy is supposed to evoke both psychological and physiologic responses in the body. For example, white was chosen for this ritual because it is the perfect balance of all color and is often associated with purity, wholeness, and completion.10 A combination of silk flowers and hand-knitted roses are used. The handmade roses, also made by volunteers from a local community group, have made an impact with many of the nurses and the families. They are exquisitely crafted and become a cherished memorial for the family.

 

The sympathy card. A sympathy card is signed by the staff and placed in a bag along with the shawl/blanket and flower to be given to the family after their loved one passes. Literature supports the benefit that sympathy cards from professional care providers have on grieving families.11,12 In addition, these sympathy cards allow the staff to acknowledge their participation in an intimate and significant event and provide closure.

 

Addressing barriers and improving practice

The ritual was different and strange to many of the nurses, and adding another task to the workflow was enough for some to reject the idea. To address the perceived burden of performing the ritual, the four elements were prefilled into brown paper gift bags and made immediately accessible to the nurses. Further, three champions were chosen from the shared governance team who could either perform the ritual for or with nurses who felt uncomfortable.

 

During the first 2 weeks of implementation, a nurse asked one of the champions to perform the ritual for her. The primary nurse needed to safely transfer the comfort care patient to another unit while preparing to receive a critical patient from the ED. The champion transferred the patient, taking the prefilled bag and performing the ritual in the patient's new room. As the ritual was performed in the new room, the staff on the receiving unit were invited to participate.

 

Several surprising things happened with this modification. The ritual resolved the feelings of abandonment that the patient, family, and nurse felt because of the transfer. The ritual became a special activity signifying not only the physical transfer of the patient but a change in care goals to those of comfort and compassion. The ritual also supported the development of a relationship between the new caregivers and the family and patient.

 

Momentum and feedback

The end-of-life ritual started with great excitement. Upon hearing of the project, staff from other units visited the ICU requesting blankets. A patient received the ritual while in the ED, comforting the family and the entire staff.

 

Feedback and stories were shared at unit meetings and huddles as sources of added inspiration. A nurse manager who witnessed the ritual being performed during patient transfer shared how the activity profoundly touched her. A family member shared with the team via e-mail that when the ritual was performed she was overwhelmed with practical matters. It was later, when things began to settle, that the blanket became a source of comfort to her and she appreciated the spiritual care provided to her grandmother. Several nurses described their experience performing the ritual. It gave them chills, and they sensed the deep connection and emotional support it provided to the patient and family.

 

An online survey was created to generate further feedback and identify barriers or performance improvement opportunities for the new ritual. Sharing the responsibility of the ritual with a spiritual provider, the family, and another nurse was identified as one way to increase comfort levels. It was also found that the steps of the ritual remained unclear. A short description was therefore included in each of the bags and one-on-one education was provided by the champions to the nurses.

 

A simple Likert-type scale evaluation tool was generated by the author to collect data on the effectiveness of the ritual on nurse and family perception of care and anxiety/comfort levels. In a small sampling of 12 nurses, the ritual helped to reduce family anxiety and stress levels. (See Evaluation results.)

 

Sustainability

As the ritual project continues to grow, sustainability is an issue. The community church that provides the shawls/blankets struggles to meet the demands of the ICU and PCU. With the growing interest of other units within the hospital, the need will eventually outweigh the supply. However, the pastoral care department has relationships with other community organizations who supply shawls and blankets.

 

Combing resources is one strategy toward meeting this increased need. For example, while the blankets/shawls are made charitably, the yarn needed to create them is costly. To offset this cost, the ICU nurses held a yarn drive. Nurses purchased yarn and donated skeins to the local church. This also increased the personal commitment of the nurses to the project, especially when they saw blankets made from the yarn they selected. Several nurses expressed their desire to learn to knit and/or crochet, which sparked ideas of starting a knitting/crochet club within the hospital.

 

Other practical considerations include the future purchasing of additional brown paper gift bags, sympathy cards, candles, and flowers. At the start of the intervention, these items were purchased through the shared effort of the unit staff. Some items were washed and reused, such as the plastic battery-operated candles. The ritual made such an impact on some families, however, that they began requesting to take these items home with them as well. To generate financial support, mini-presentations were developed by the team and delivered to different clinical areas and levels of administration. It was clear to the team that the end-of-life ritual had reached a critical point where organizational support was needed for further development.

 

Areas of further research

End-of-life care needs to be defined and developed in the acute care setting. Delivery models need to consider collaborative efforts among team members, pastoral care, and nurses; between and among nursing units; and the involvement of the family and patient. A literature review on the use of ritual specific to end-of-life care, along with an investigation of the symbolic relevance and healing properties of objects used, would be valuable. Holistic healing modalities, such as prayer, light, color, water, music, and touch, are a few elements of ritual that may demonstrate clinical significance in enhancing the healing of the body, mind, and spirit. Finally, research supporting rituals as an intervention to increase compassion satisfaction and decrease moral distress, compassion fatigue, and nurse burnout would be beneficial to the nursing profession.

 

Conclusion

Improving end-of-life care in the acute care setting is an important goal for the entire healthcare community. Creating comforting end-of-life rituals can help. Rituals have the potential to provide structure in uncertainty and give meaning to suffering. When individuals rely on meaning-making strategies, they display more resilience to stress and experience better quality of life.13 Rituals create emotional energy and can raise the mundane into significance. When only a few moments remain, each moment matters.

 

Evaluation results

A small sampling of 12 nurses completed an evaluation that rated their perception of anxiety/distress levels in themselves, their patients, and the families before and after implementing the ritual. The figure represents the average level reported anxiety and distress in each category based on a Likert-type scale of 0-10, where 0 = no anxiety/distress and 10 = extreme anxiety/distress.

 

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