Connecting Soul with the Role:
San Diego Hospice and The Institute for
Palliative Medicine’s Remembrance
Rituals Honor Patients, Promote Self-Care
by Kristina Berwyn-Shaw
For Kristen Carlson, Spiritual Counselor at San Diego Hospice and The Institute for Palliative Medicine, walking alongside patients during their final journey is a privilege that she appreciates daily. “I often say that our patients are my teachers and every life represents an amazing journey that we are privileged to walk alongside for the final duration,” says Carlson.
But for Carlson, and many in the field of hospice and palliative care, working closely with individuals who are at the end of life, and processing the feelings and emotions that arise following a patient’s death, can be demanding. Often, they are challenged to reconcile and balance their heart, such as their feelings towards an experience with a patient, with their minds, such as continuing to be able to fulfill their role as a professional caregiver.
“Every member of our staff cares deeply about our patients and their families,” says Jonathan Flood, Patient Care Manager at San Diego Hospice. “San Diego Hospice care teams work tirelessly to ensure the patient, and their loved ones, are treated with respect, dignity, and warmth during their end-of-life experience. This can be a taxing undertaking. As such, it’s imperative for staff to be able to renew themselves in order to balance work and life, as well as replenish their capacity to care.”
As part of self-care, and to help balance the heart and the mind, San Diego Hospice care teams conduct a “remembrance ritual” after a patient’s death. As part of their remembrance ritual, each team conducts a different visual ceremony in addition to sharing stories about the patient and setting aside time for staff members to express their feelings and experiences.
For example, the San Diego Hospice care team that is based in the South Bay area of San Diego ties colored ribbon on a wreath as a way to symbolize the connection between patients and their care team members. Another visual ceremony, conducted by San Diego Hospice’s Children’s Care Team, is to write a word or name in memory of the deceased patient on a smooth stone, which is then placed in a glass vase. Once this vase is filled, it is displayed at San Diego Hospice’s Inpatient Care Center in Hillcrest.
“As part of my team’s remembrance ritual, we pour a vial of colored sand into a clear vase,” says Carlson. “The mixing of different colored sand is an open representation of the beauty, diversity, and vibrancy of the lives that have touched ours. To me, this remembrance ritual is a chance to ‘connect soul with role,’ while honoring the patient’s life and helping me process their death.”
Usually these rituals are conducted at the San Diego Hospice care teams’ weekly or monthly meetings. But some staff members are moved to remember their patients more immediately. Staff members at the Inpatient Care Center, for instance, light an electric flame when a patient passes away on their floor. This instantaneous remembrance is a way for them to pause and reflect during their busy shifts.
“When I feel challenged by the demands of my role as part of a hospice care team, I often turn to a quote that I read recently in an inspirational book: ‘Life is about choice. We are all given a choice every day to choose love or fear, happiness or pain, wealth or poverty,’” says Jocelia Kidio, a Certified Home Health Aide at San Diego Hospice. “To me, our remembrance ritual personifies this choice because it lets me remember the patients in my own way, with my own words. That is very powerful.”
Staff members have also taken to heart the importance of remembering and honoring those who have passed in their personal lives. One San Diego Hospice care team intermingles the names of their loved ones or friends who have recently died with the names of their patients who have died, on silk flower petals. These petals are then arranged into flowers, becoming a beautiful display of hope, love, and grace.
“When I hear about these rituals, see them displayed in various places, and listen to how they positively impact our staff, I am reminded why spirituality is such an integral part of our journey through life, both in caregivers’ self-care practices and for patients when they face end-of-life issues,” says Ben Marcantonio, M.Ed., MS, LMFT, Chief Administrative Officer at San Diego Hospice.
The traditional philosophy of hospice care has always included spirituality as an important component of care for terminally ill patients, as requested by the patient and their family. San Diego Hospice honors this philosophy by creating an interdisciplinary care team, which includes nurses, doctors, social workers, and spiritual counselors, to prevent and relieve suffering and promote quality of life, regardless of where a patient is during their journey through life. By incorporating and encouraging spirituality in their hospice and palliative care practices, San Diego Hospice staff can provide patients and their families healing on physical, emotional, spiritual, and social levels.
In addition to medical expertise in alleviating physical pain and suffering, San Diego Hospice also puts an emphasis on following and promoting the core guidelines for spiritual caregiving in a hospice environment. These include self-knowledge of one’s own spiritual needs, authenticity and respect for the beliefs and practices of the patient and family, and being empathetic and supportive throughout the spiritual process. This type of individualized patient and family care, along with education, research, advocacy, and practical support, is how San Diego Hospice helps patients and their families make the most of each moment for as long as life lasts.
“Whether spirituality is part of a patient’s compassionate hospice care or a team member’s self-care, we believe individuals’ spirituality and beliefs should be respected and supported,” says Marcantonio.
In death, as is often in life, it is the simplest of ceremonies and stories that provide lessons of growth and change as well as offer a chance to accept and embrace the next chapter with anticipation and hope. San Diego Hospice invites others in the fields of hospice and palliative care to be attentive to their self-care through the inclusion of remembrance rituals, or find other ways to nurture and care for themselves.
For more information on the importance of self-care in the fields of hospice and palliative medicine and caregiving, as well as ways to connect heart with mind, please visit San Diego Hospice’s blog series on The Caregiver’s Corner (www.sandiegocaregiversblog.com). As the region’s oldest and largest nonprofit hospice and palliative care provider, San Diego Hospice brings compassionate, expert medical care to more than 1,200 seriously ill adults and children each day throughout San Diego County. For more information, visit www.sdhospice.org or call toll-free at 866.688.1600.
Kristina Berwyn-Shaw works in San Diego Hospice and The Institute for Palliative Medicine’s Communication Department. Contact her at KBerwynShaw@SDHospice.org.