Death is a very final event. It is the end of our physical life as we know it. Many cultures and populations follow special mannerisms or traditions in order to transition a person and loved one from this world. For the living, sometimes it is a method of meaningful closure through environmental control and the provision of physical, emotional, and medical comfort to the person in need. Patient's death for nurses is a harsh reality, so how do they deal with such experience?
There are times, however, when control and comfort are not possible due to unforeseen, emergent, or extenuating circumstances or when the individual is hospitalized with a suddenly poor prognosis. How can nurses help patients' families and friends handle loss and grief? Similarly, when death occurs in the hospital setting, how do nurses and hospital staff handle it? Is there significant emotional distress associated with patient death? What do nurses do to relieve this potential burden on themselves?—The answer is cope through care.
Today, many healthcare facilities are now handling patient death as a recognized method of care practice (Capitulo, 2005). They have acknowledged the need to implement practices and approaches of care and comfort during times of bereavement not only for the dying patient, but also for the patient’s family and friends. Subsequently, such implementation of bereavement protocols has also been found to aid the primary nurse and their co-workers deal with or effectively cope with loss of a patient-whether anticipated or unexpected (Ellershaw, 2003).
Many are familiar with terms like end-of-life, palliative care, or comfort care, but how many of you are familiar with Seeds of Hope? A colleague of mine at St. Joseph’s Hospital Health Center (SJHHC) in Syracuse, NY has developed a program called "Seeds of Hope" where nursing and ancillary staff provide special, end-of-life care for patients and their families. A bonus outcome to the program is that staff members are finding that they are also receiving care and closure themselves.
Seeds of Hope (SOH) began in 2009 at SJHHC’s surgical intensive care unit (SICU) through the endeavors of one nurse with an idea geared toward practice improvement and satisfaction (for both customers and employees; St. Joseph’s Hospital Health Center, 2012). It stemmed from the past, personal experience of losing a loved one and the culminating professional experiences of witnessing numerous natural and imminent deaths of critical care patients throughout her career. Sometimes these patients died alone. Other times, families were not allowed to be present, or they were rushed in and out of the patient’s room without receiving appropriate, time-sensitive closure. Occasionally, patients and families did receive well-thought, dignified care through their process of death. In these instances it was recognized that ritualistic behaviors and care practices were consistently delivered by staff to dying patients, their families, and significant others.
In an effort to develop a grief and bereavement process to assist patients and families in receiving comfort, a staff-driven taskforce was established in the SICU. A search of the literature showed that rituals already existed in perinatal end-of-life (EOL) situations (Callister, 2006). The evidence suggested that consistent care practices such as providing mothers quiet time to be with their child and presenting parents and families with hand and foot prints, photographs, and locks of hair cut from their child’s head seemed to provide them with a form of solace and informal closure to the experience (Callister, 2006; Capitulo, 2005). It was hypothesized that innovating and replicating similar practices in the hospital setting with adult deaths would offer comparable comfort to patients, families, and their significant others. Not only was the idea conceived to implement a ritualized style of care for these individuals, but the concept of providing mementoes and mailing grief and bereavement sympathy cards throughout the first year following death was also considered by the group.
The SOH taskforce felt it would be important to devise objectives that provided specialized, individual treatment for EOL patients and families in the SICU and that all staff was educated in these practices so they could participate in the process. Any patient whose prognosis resulted in death was included in SOH. No specific requirements were necessary. The patient could be progressing toward EOL as the result of an emergent hospital situation, failed resuscitation, or as the result of a chronic condition. They could have a designated resuscitation status or they may have elected to allow natural death. An outline of care practice was adapted from literature as well as from information from other similar hospital programs.
The family and friends of identified EOL patients receive some basic explanation as to what is going to occur with their loved one regarding SOH. They are educated on the basic physiologic process of death and dying and how to assist in making their loved one comfortable during this time in the hospital. Families naturally have the right to decline: few have, but they were always appreciative of the SOH offer.
Patients receive a handmade, quilted blanket designed by the SJHHC volunteer staff to cover them, making them look comfortable and more at home. Families are allowed to commune in the patient’s room where they can also receive food and beverages as needed. They are invited to make handprints of the person to have as keepsakes. These are done using a colored acrylic or oil-based solution with the print laid over a beautifully written poem on decorative card-stock paper. The poetry was composed by an SICU nurse. The handprints, along with a simple letter of condolence and a sympathy packet of Forget-Me-Not seeds are all placed in a hand-made, fabric envelope and given to the family when they are prepared to leave the hospital. Over the years, the program has grown to include mementos of locks of hair or ventilator water as well, per family request. While the entire SOH process is going on, a Forget-Me-Not sign is placed outside the patient’s room to alert the other unit staff of what is going on-so they may maintain a quiet environment or assist in delivering care.
Families of SOH patients receive bereavement “Hope Notes” throughout the first year following a patient’s death. This gesture is carried out by volunteer nurses. These spiritual and grief-healing mailings are managed by dedicated SOH nursing staff who each assumes responsibility for an entire month of family mailings during the year. They include cards at
1-, 3-, 6-, 9-, and 11-month intervals; the Thanksgiving and Christmas holidays (as appropriate); and a one year anniversary card. A final “note-of-closure” from the SICU team is mailed at the 13th-month mark to signify closure from the SJHHC-end and well-wishes to the family or significant others as they continue through their own lives.
SOH nurses have also developed listings to offer families in need: contact numbers and addresses for area funeral homes, grief and bereavement support groups, and counseling services. The long-term goal is to disseminate the SOH practice throughout the hospital network and beyond, for caregivers everywhere to be able to implement so that patients and families may receive appropriate comfort and support through trying times and nurses, physicians, and other support staff can experience meaningful closure to an often-time stressful or emotional, yet commonplace natural event of life.
Nurses have a duty to care, including the care of the dying patient, their family, and themselves (other nurses). For more information on bereavement and family care through the Seeds of Hope at SJHHC, please contact the organization.