The Last Day Narratives: An Exploration of the End of Life for Patients with Cancer from a Caregivers' Perspective

Data collection

After obtaining Institutional Review Board (IRB) approval, oncology providers purposively screened, recruited, and invited potential participants. The inclusion criteria were as follows: ≥18 years, English-speaking, and self-identified caregiver of deceased patient with a cancer diagnosis at a single academic cancer center. The caregiver must have been present on the day of death and the patient must have been deceased between one month and two years before the interview date.

Before conducting the interviews, the investigator obtained informed consent, assured confidentiality, and made clear that pseudonyms would be used in the reporting to provide anonymity. Interviews were open ended but began with a question asking participants to describe the last day. Interviews were digitally recorded, transcribed verbatim, and conducted until data saturation was achieved.

Data analysis

The data analysis process began with a listening and relistening to each audio recording. Analytic memos captured changes in participant's tone of voice, pauses, emotions, and gaps in conversation. Transcripts were read and reread. Initial coding involved noting repeated words and phrases first within and then across interviews. Codes were then organized into categories that provided context to the codes. Finally, themes that captured the overall experience were developed.

Lincoln and Guba's evaluation criteria of dependability credibility, transferability, and confirmability were used to establish trustworthiness. ⁴ Dependability was assured by providing a detailed description of the study procedure and data analysis. Credibility was assured by sampling family caregivers involved in the last days of life, taking analytic notes during the data collection and analysis and assuring the various participant voices were reported in the findings. Transferability was achieved first by the investigator sharing findings with members of the study team and second by sharing themes with several participants to determine if findings resonated with them. Confirmability was accomplished by the investigator keeping a reflexive journal and sharing the thoughts with the team in regular meetings so as to reduce any potential for bias.

Theme 1: Relationships and communication with HCPs impact overall experience

This theme is derived from participants' positive and negative communication with the HCPs, the impact of which directly influenced the overall experience. This dominant issue of most interviews is captured by Mrs. C.:

The most important thing is how you communicate good or bad whether it be the caregiver or the family members, but especially the patient.

Descriptions of distress arising on the last day reflected an insensitivity to the participant's needs or a mismatch in communication, the consequences of which were a lingering distress. One participant, Mr. E., tearfully described a request he had and how the nurse responded in a way that did not consider his needs. He described:

I asked the nurse…to make sure that [his wife] had her clothes on when the funeral parlor came to get her… It's important to me for her dignity. She responded: “When they get to the funeral parlor, they just cut the clothes off anyhow.”

Distress also arose when the caregiver perceived an impersonal relationship or a lack of concern about the patient as a person. Communication issues also arose from the lack of communication from HCP that may be reflective of mismatched expectations. Mr. R described his frustration with what he described as a lack of caring for his wife as a person during a hospitalization: “Forget about the patient. Let's see what we can do to learn.” Mrs. A. described a communication breakdown between the oncologist who wanted to do further treatment and her husband who wanted hospice. She interpreted the doctor's absence as disapproval for the decision in this way: “After we said no to chemo, [the oncologist] never came near [my husband] again.”

Another element of this theme was the relationship formed between the caregiver and the HCP although it is less clear if this was reciprocal. Caregivers had a strong sense of attachment to the provider and considered their relationship ongoing even after the patient's death. Mrs. X. described: “I still keep in touch with all the doctors and nurses at the hospital because they are like my family.”

Theme 2: Being able to prepare for death was a source of comfort

This notion of preparation was evident in the majority of the interviews. This theme has two subthemes: preparing for death eases process and prepared, but the actual death is different than expected.

Theme 3: Being a caregiver impacts quality of life and role identity

The tone of this theme ranged from melancholy to weary to proud. As the patient's condition worsened, the need for increasing dependency required a shift in the caregiver's role from one that included being with and quality time to one that involved more doing for and less quality time. Caregivers reported being “different” from the person they had been earlier in their caregiving role. Primarily, this shift in role was viewed as an intrusion on the ability to be with the loved one. Mr. R initially cared for his wife on home hospice, but she eventually transitioned to an inpatient hospice. Mr. R. recalled his relief when he could go “from caregiver to her husband again.”

Theme 4: Spiritual visitations as a welcome experience

Seventy percent of the caregivers in this study described spiritual visitation from the deceased love one after the death. Participants willingly discussed this without prompting near the end of the interview. When participants discussed this, they were calm, positive, and expressed a sense of reassurance and comfort in having had a visitation. Mr. E described: “There was a cloud that went between the light and myself and everything around me went dim just for a moment and I looked up to see what was going on and nothing. And I started to talk to her.”

Other caregivers disbelievingly or nervously described a sense of exclusion and discomfort when they did not experience visitations. Spontaneously during the course of the interview, Mrs. A. described a lack of spiritual visitations in contrast to her sister, who was also a recent widow:

[My sister] says she can feel her husband. She has these senses of de-ja-vu. You know, she thinks she hears his voice or his footsteps. Sorry- I mean- I must be a really numb person because if that's going on, I have not anything to report. [nervously laughing]…I miss him terribly but I know he is gone.

Others described visitation from other family members that were predictive in nature. Mrs. X described a spiritual visitation from a deceased family member before her husband's death.

Theme 5: Navigating the dying days and early grief period wrought with guilt and closure

The early grief period was expansive in terms of emotional experiences and was impacted by role. Some participants were able to describe moving on and starting anew. More commonly, participants reported being burdened with new responsibilities or a loss of responsibility altogether (that of caregiver). This latter group reported more guilt and distress.

Caregivers reported guilt at the EOL, and this was especially so if they needed to do other things that took away from being with the dying person. These tasks were often tasks the dying person had previously assumed so there was not only the burden of assuming this added role, but also the loss of time to be with the dying person.

Before the death, participants worried about not being with the patient with death looming. They reported that death was “permanent” and it “was not to be missed” and they would feel guilty if they “were not there.”

Feelings of guilt caregivers experienced lingered far past the death. During the grief period, caregivers reported new tasks interfered with their ability to grieve. Mrs. X. described: “There's just a lot of things … trying to deal with finances, his estate, paying his bills, applying for his retirement money, social security…”

This theme also captured caregivers' descriptions of emotional closure. Often, they reported in a positive reflective way coming to terms with death. Mr. E. described his life with his wife as “a closed book to which he could no longer add pages and that now he was starting a new book of his life alone.” Others were able to find closure and solace through rituals such as those associated with funerals.

Some caregivers described closure in the dying person for whom they were caring. Mrs. P. recounted what she described as her husband's closure experienced before his death. Mr. P. served in Vietnam. Mrs. P. recalled:

When he was in the hospital they asked him if he wanted to see a priest, so he said ok…It was a Vietnamese priest and … he said to the priest, “Father, do you forgive me for what I had to do in Vietnam? Do you think God will forgive me?” And the priest said, “Of course God will forgive you.” And he said, “Well, Father, do you forgive me?” And he said, “Yes, I do…Of course I forgive you.” He (Mr. P.) seemed to be much more at ease after that.

Theme 6: A loss of community contributes to distress and distracts from healing

Caregivers discussed the need for support from their community but expressed dissatisfaction with the community response. There seemed to be a mismatch in expectations about what a community should provide, which led to distress. As one participant described: “I have been really unprepared for how quickly people disappear,” whereas another participant who had become disillusioned with his faith community described:

The consolations that religion provides, I mean, the customary consolations. Those are so childish. No, just come and spend some time with me. That's all.

Participants described their perception that community should be an important source of support that led to healing, but in many cases, the response was inadequate leaving the caregiver feeling alone.

Implications

These findings are consistent with research suggesting caregiving is a stressful role contributing to distress.^3,5,8 In this study, distress was most often linked to communication failures. This study supports the importance of provider–caregiver relationship and its role in communication. Future research needs to focus on patient–provider and caregiver communication with special attention given to caregiver's needs and perspectives on the patient.

Findings from this study support work that indicates caregivers need more preparation and knowledge about specific tasks and challenges they will assume.^2,5,8–11 Consistent with this is the need for caregivers to have an understanding about what to expect during the trajectory of the dying process. Some work in the care of persons with chronic illness focused on supporting caregiver knowledge suggests caregivers with more knowledge report less depression and improved coping.^3,10 Further research is needed in this area to understand how, when, how often, and what interventions are needed for caregivers of people with advanced cancer.

Findings indicate that after the death, caregivers experience profound distress and lingering guilt not only related to the loss of the person, but as a caregiver. This shift from a caregiver role to an uncertain role post death serves as another potential loss that may contribute further to these feelings. This is an important area to further understand in considering caregiver health.

Finally, the literature on visitations and/or spiritual experiences in the grieving period is sparse, but a growing body of literature reveals that this is a very real experience and that it is one caregivers want to discuss.^12–14 More research is needed in this area to understand the individual experiences and personal meaning caregivers ascribe to visitations.

This study has several limitations. The sample size although adequate in size for a narrative analysis, is small and drawn from a single institution and, therefore, not generalizable. Further research is needed to confirm findings.