The experiences on how living funerals impact the psychological well-being and sense of closure for terminally ill patients –Case report

Abstract

Terminally ill individuals often grapple with various psychological challenges as they face their mortality. While traditional funerals provide solace to the bereaved, living funerals have emerged as a distinct opportunity for both the patient and their loved ones to socially participate in the farewell. This case report highlights the impact on the psychological well-being and sense of closure for Ms. T, a Singaporean patient with terminal ovarian cancer, who hosted her own living funeral. Ms. T was receiving home hospice care. Her symptoms (including pain, discomfort, insomnia, nausea, fatigue, and shortness of breath) have limited her from social connection; something that she values and emphasized prior to illness. After discussing with Ms. T about her values and end-of-life care preferences, a living funeral was arranged, where she invited friends and family to attend at her home to connect with her and to create memories. At the session, Ms. T became more energetic and was described as ‘the life of the party’. The social experience of holding a Living Funeral provided motivation and sustainability to her overall well-being. Moreover, there was an increase in her social circle contacting her to keep in touch. The living funeral is aligned with concepts related to life review. The patient, as host of the living funeral, was able to witness the impact of their life on others, reinforcing her ego integrity and psychological resilience at her final stage of life. The patient expressed a sense of ‘closure and completeness’, having ‘reconnected with friends and family’ by ‘clarifying their relationships’ and ‘expressing love for each other’. This intervention also highlighted the impact of addressing social connections and relationships between patients and their loved ones. Further examination could highlight the benefits, challenges, and underlying constructs of the Living Funeral.

Introduction

Patients with advanced illness and short prognoses may experience significant physical and psychological impacts. ¹ During this period, interventions such as psychotherapy, support groups, and mindfulness-based practices can improve quality of life and coping strategies.

The living funeral, also known as pre-funerals or celebration of life ceremonies, is a platform offered to patients to participate in and experience the expressions of love and appreciation that are practiced in traditional funerals, while they are still alive. ² Traditional funerals serve to honour the deceased and comfort the bereaved, but living funerals allow terminally ill individuals to take an active role in their farewell. These ceremonies provide a more casual setting to enable sharing memories, expressing wishes, reconciling relationships, and saying goodbye. ³

Living funerals were thought to offer practical benefits, such as reducing the family’s burden and allowing patients the control to determine how their death is approached. ² Living funerals may also provide emotional advantages, enabling hosts to reflect on relationships, express appreciation, reconcile estrangements, and plan for death. ² However, gaps remain in understanding the psychological effects of such ceremonies, particularly the impacts on cultural practices, ethical considerations, and the interdisciplinary nature contribute to the limited studies available.

Understanding their impact on psychological well-being is crucial for improving psychosocial support in end-of-life care. This report aims to provide a case study of a living funeral held at home for a Singaporean patient to explore the impact of a living funeral on the patient and the respective impacts on end-of-life care.

Case presentation

Ms. T was a woman in her late 40’s with advanced ovarian cancer and end-stage renal failure. She transitioned to comfort care when her cancer did not respond to medical treatment. She was admitted to home hospice care in December 2023, while receiving dialysis three times a week, for pain and symptom management.

Ms. T was described as an extrovert; although she stayed alone, she enjoyed social interaction with friends and family and would take part in recreational activities together. Due to her various symptoms as her disease progressed, her participation in these activities was reduced, and she withdrew inward. Ms. T was supported by a multidisciplinary home hospice care team consisting of a nurse, a physician, and a medical social worker (MSW). The team visited her regularly to provide medical and psychosocial support. However, she continued to face challenges in maintaining her social connection in view of her continuous deterioration.

During the conversation, the MSW observed how Ms. T placed great emphasis on her social connections, including friends and former colleagues. She often expressed gratitude for their practical support when she was battling with her myriad of health issues. She had also expressed a strong preference to continue connecting with friends and family. In light of her wishes, the concept of a living funeral was brought up during discussion; it was suggested that the team could support Ms. T to organize a living funeral event, and to invite her friends and former colleagues, such that she and invitees can reconnect, socially interact, express love, and to achieve a sense of closure and completion to their relationships.

Figure 1 illustrates the timeline of the Living Funeral unfolding from the point of Ms. T’s first contact with MSW to her death. Between January 2024 and April 2024, the team engaged in extensive planning for the Living Funeral. This process involved selecting and inviting friends identified by Ms. T, with oversight by the MSW. Thematic elements and music, such as karaoke singing, were incorporated into the event. The colour themes of ‘Purple’ and ‘Balloons’ were chosen to represent positivity and strength.

Figure 1.

Timeline of the living funeral intervention for Ms. T.

In April 2024, the Living Funeral event was held. The home hospice team facilitated volunteer engagement and social support. Ms. T and the attendees shared songs and tribute messages. The MSW and nurse practitioners were present to offer additional support.

The Celebration of Life concluded with Ms. T personally handing handwritten letters and physical copies of photos, sealed in envelopes, to all her invitees. Hugs were exchanged, along with laughter and tears.

The living funeral went as planned. Ms. T was able to achieve what she intended from the beginning, particularly the opportunity to hear words of appreciation from her friends, and to create a form of legacy for her friends. Although family members were not invited, Ms. T hoped that her family and friends would be able to view the media content taken at the living funeral to reminisce about the intimate moments after her demise. The reason why Ms. T did not include her family members were due to her perception that her family members would have to go through the grief cycle twice, one would be at the Living Funeral, and another one would be at the wake, as Ms. T has plan to still hold a wake after her demise despite having a living funeral. The attendees were grateful, and a few of them sent text messages to the MSW after the event to express appreciation for the arrangement. They valued the opportunity to exchange appreciation and express love with Ms. T while she was still alive.

Approximately 1 month after the living funeral, we conducted an interview with Ms. T. Interview questions (Box 1) were designed to explore her experience and reflections on how the living funeral impacted her.

Box 1.

Interview questions.

1. How did you feel immediately after the completion of a Living Funeral? How did you feel a few days after?2. What did you gain most from the Living Funeral? (What aspects of the Living Funeral were most meaningful to you?)3. What was the moment that the Living Funeral enables you to experience a form of closure? (Can you describe a specific moment during the Living Funeral that made you feel a sense of closure?)4. What are the differences in your life after the Living Funeral? (In what ways has your life changed following the Living Funeral?)5. How would you define a sense of closure? (How would you describe your experience of closure from the Living Funeral?)6. How has the Living Funeral affected your relationships with the attendees? (How has the Living Funeral influenced your relationships with those who attended?)7. How satisfied are you with the Living Funeral? From 0 to 10. (On a scale from 0 to 10, how satisfied were you with the Living Funeral overall?)8. What could be done better for the Living Funeral? (What aspects of the Living Funeral do you think could be improved?)

Ms. T described a mix of immediate and lasting effects following her Living Funeral to the interviewer. Figure 1 depicts the short-term, long-term, and both positive and negative effects of Ms. T’s experience of holding a Living Funeral. Prior to the actualization of the Living Funeral, the medical team observed that Ms. T was more energetic and occupied during visits, despite being symptomatic; the upcoming event appeared to be a source of continuing motivation for Ms. T.

When asked about achieving a sense of closure, Ms. T emphasized a feeling of ‘wholesome completion’ rather than closure. She felt the event fulfilled an important personal milestone, adding a sense of completeness to her life.

Ms. T rated her overall satisfaction with the Living Funeral as a 7 out of 10. While she valued the whole experience, she felt that the involvement of too much media coverage detracted from the event’s intimacy, even though she was initially inspired and motivated to discuss death and dying, and finally, creating awareness about Living Funeral. Ms. T was welcoming of having the presence of three media companies, even though she was reminded that her living funeral may not be as intimating as it should be. However, she bravely accepted all media coverage, as she believed that filming her living funeral experience would encourage others to talk about death and dying and be open to having a Living Funeral in the future.

Additionally, the dress code was also part of a contributing factor to the satisfaction grade. It is observed that Ms. T was unhappy with the dress code of one of the supporting staff who wore a pair of shorts instead of below-knee length. In terms of adverse and unanticipated events, the unscheduled visitations and numerous phone calls from friends, while supportive, resulted in social fatigue for Ms. T. This unexpected outcome prompted her to disconnect by turning off her phone to manage social fatigue.

Discussion

The living funeral intervention was a success and appeared to have improved Ms. T’s well-being. Observed benefits include:

Enhanced psychological well-being

Ms. T’s living funeral resulted in enhancement of her psychosocial well-being, which elevated her achieving a sense of completeness and increased social interaction, even as her condition continued to deteriorate.

Ms. T’s living funeral allowed her to move from being a passive recipient of care to an active participant in her farewell. Other than having the autonomy to decide on the components of the living funeral, the planning of her living funeral gave her a sense of purpose and fulfilment. During the event, she became more animated and was described as ‘the life of the party’ by her friends.

Research supports that meaningful social interactions and reminiscence can reduce depressive symptoms and improve mental health. ⁴

Sense of completion/closure

The living funeral was key in creating a sense of closure for Ms. T. Sense of closure is achieved when the individual has completed all uncompleted matters, communications, or relationships with her friends. ⁵ It also involves resolving past conflicts and affirming important relationships. By expressing gratitude, love, and final wishes during the event, Ms. T and her guests managed to clarify their relationships and express mutual affections, core parts of achieving psychological closure. This mutual exchange of affections and affirmations aligns with completing ‘unfinished business’ often observed in life review practices. This is similar to research findings by Jefferson, which demonstrated that individuals could find closure for their life events and experiences as they process through life review therapy. ⁶

Social connectedness

Living funerals uniquely emphasize the importance of social connections, which is crucial for terminally ill patients who often feel isolated. For Ms. T, reconnecting with her friends and family at the funeral fostered a renewed sense of belonging and strengthened her psychological resilience. After the event, Ms. T noticed an increase in interaction within her social circle, showing the continued impact of these rekindled relationships.

Alignment with life review approach

The positive impact of Ms. T’s living funeral can be viewed through the lens of Butler’s life review approach. ⁷ Butler described the life review as a spontaneous psychological process triggered in individuals when facing the end-of-life; this internal and natural process involves reviewing and evaluating life events, characterized by increased vulnerability.

Applying Butler’s model to Ms. T’s experience, her living funeral provided a structured process to trigger and guide her through a life review. Observed through the process of planning to executing the event, it facilitated her sense of fulfilment and achievement, aligned with the life review approach. Hosting the funeral helped Ms. T reflect on her life, reconcile her experiences, and affirm her legacy with loved ones. This process could also be understood as individuals achieving a sense of ego integrity, an element of Erikson’s stages of psychosocial development. ⁸ The relation to the achievement of ego integrity was further confirmed as Ms T shared that she felt a sense of wholesome completion, which is an indication of the connection.

Barriers and challenges to Living Funerals

The concept of conducting one’s own living funeral is relatively new to the local context and culturally specific, and there exist persistent barriers to its practice. First, the idea of hosting one’s own funeral can be seen as taboo or uncomfortable to patients and their loved ones, thus deter the practice. Secondly, while traditional funerals have rich documentation across cultures and historical periods, the concept of a living funeral is a modern adaptation and therefore lacks the historical precedent. Third, holding a living funeral may not be favourable and applicable to everyone, even though they may be interested. For instance, Ms. T had a strong social support system to begin with. The turn up rate for the event was assured as Ms. T described her friends as loyal, trustworthy, and with strong rapport. In contrast, having a low turn up rate may dampen the mood of the host, which may potentially cause negative emotions. Lastly, individuals at end-of-life may experience a wide range of symptoms causing great challenges to organize and coordinate a living funeral, whether single-handedly or with external support (e.g. Hospice service).

YouGov is an international research and analyst group that conducted an online survey with Singaporeans on living funeral. Its findings reveal that more than 50% of people below the age of 60 are aware of a living funeral. However, only less than a quarter are comfortable to organize one for themselves. ⁹ One of the main barriers that discourages discussion about death and living funeral among Singaporeans is due to cultural taboo. ¹⁰

Conclusion

This case report described the significant potential benefits of living funerals for terminally ill patients. The Living Funeral enhanced Ms. T’s psychological well-being even as her condition worsened. She shifted from being a passive care recipient to an active participant, finding purpose and fulfilment through planning and executing her own farewell. The experience fostered meaningful social interactions, reduced feelings of isolation, and reinforced her psychological resilience by reconnecting with friends and family. This intervention aligned with Butler’s life review process and Erikson’s concept of ego integrity, allowing patients to reflect on their legacy and achieve psychological closure. While this case report provides insights, more research is needed to evaluate the long-term psychological impacts of living funerals. Studying various demographic and cultural contexts can also help understand the broader applicability and nuances of the intervention.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524251364277 – Supplemental material for The experiences on how living funerals impact the psychological well-being and sense of closure for terminally ill patients –Case report

Supplemental material, sj-docx-1-pcr-10.1177_26323524251364277 for The experiences on how living funerals impact the psychological well-being and sense of closure for terminally ill patients –Case report by Shannon Sim and Jonathan Sim in Palliative Care and Social Practice