Control over place of death is deemed important, not only in providing a “good death,” but also in offering person-centered palliative care. Despite the wish to die at home being endorsed by many, few achieve it. The present study aimed to explore the reasons why this wish is not fulfilled by examining the stories of ten individuals who lost a loved one to cancer.

We adopted a narrative approach, with stories synthesized to create one metastory depicting plot similarities and differences.

Stories were divided into four chapters: (1) the cancer diagnosis, (2) the terminal stage and advancement of death, (3) death itself, and (4) reflections on the whole experience. Additionally, several reasons for cessation of home care were uncovered, including the need to consider children's welfare, exhaustion, and admission of the loved one by professionals due to a medical emergency. Some participants described adverse effects as a result of being unable to continue to support their loved one's wish to remain at home.

Reflections upon the accounts are provided with a discussion around potential clinical implications.

To explore the unique lived experiences of one patient who died at home and her family members, and to interpret how dying at home influenced patterns of bereavement for this patient's family.

Benner's (1985) interpretive phenomenological approach was employed to get at the embedded nature of the social phenomenon of dying at home, uncovering what may be taken for granted by participants — in this case, during and after the patient's home hospice course. The participants were a 78-year-old female diagnosed with amyotrophic lateral sclerosis six months prior to death, her husband, and three of her four children. In line with the patient's wish to die at home, she voluntarily forewent food and drink when she no longer wished to watch her body deteriorate and felt that her life had run its course. She informed her family of this plan, and all were supportive. For data collection, separate single in-depth interviews were conducted with the deceased three months prior to death, and after death with three of her four children and her spouse of 60 years. For data analysis, the interview transcripts were coded for paradigm cases, exemplars, and themes.

The paradigm case, “The Meaning of Being at Home,” revealed that for study participants, remaining home with hospice provided a richly familiar, quiet, and safe environment for being together over time and focusing on relationships. Exemplars included “Driving Her Own Course” and “Not Being a Burden.” Salient themes encompassed patient and family characteristics, support, emotions, the value of time, and aspects of the healthcare team.

End-of-life care providers need to hold a patient-centered, family-focused view to facilitate patient and family wishes to remain home to die. Investigation into family relationships, from the perspectives of both patient and family members, longitudinally, may enrich understanding and ability and help patients to die at home.

The aim of the study was to clarify the care experience of primary caregivers when caring for a terminal cancer patient in the home with the assistance of a home palliative care service. Participants were asked to provide background data and to evaluate their experience of caregiving and of the patient's response throughout the period of home palliative care, up to the time of death.

One hundred twelve primary family caregivers were a mailed self-report questionnaire, and 74 valid questionnaires were returned (response rate 66%).

Ninety percent felt that the patient's condition of mind and body was reasonably stable, and 75% felt that the death was peaceful. About 90% reported a deepening of their bond with the patient and that the bond of other family members deepened also. Sixty percent reported that the burden of caregiving was not too great or not felt at all. Approximately 90% judged that the patient retained his or her own personal qualities to the end. Ninety percent also felt that they had done their best in their caregiving and judged that home care had been beneficial for the deceased, for the primary caregiver him/herself, and for other family members. These primary caregivers' evaluations of caring for a terminally ill patient at home in conjunction with a home palliative care service were both high and positive.

Our findings suggest that it is important to maintain the patient's personal qualities up to the time of death through appropriate symptom management, to respect the family bond of the household, and to provide professional support in order to reduce the load on the family. If appropriate care is provided, peaceful home death will be possible, resulting in significant benefits for patients and their families in Japan.