In this section, we present some findings from the four FGDs. FGD 1 comprised 5 women aged 34–52 years, all professionals working Nairobi, who had cared for a family member with terminal cancer. FGD 2 comprised 3 elderly widows (65–75 years) each of whom cared for a spouse with terminal cancer. FGD 3 comprised 3 women aged 31–36 years who each cared for a terminally ill parent, while FGD 4 consisted of 2 women aged 27 and 33 years who served as caregivers of siblings with terminal cancer.
Utilizing relevant illustrations from FGDs, this section discusses the content and contexts of family end-of-life conversations and meanings ascribed to these conversations. Two related themes are presented: (1) advance directives as preparedness for death, and (2) initiating death talk. These themes were developed from JNG’s dissertation chapter on death, dying and bereavement transitions in the context of family caregivers’ experiences of ‘midwifing death’ [
27]; watching and waiting on their terminally ill loved ones as death approached. We utilize the term advance directives in the broader sense of and verbal or written instructions conveying ‘a person’s health care preference while they are competent to make decisions for themselves….’ ([
28], p.1) In our specific context advance directives include wills, do-not-resuscitate (DNR) directives, and other variations of end-of-life conversations and decisions regarding terminally ill cancer patients, and from the perspectives of lay family caregivers. The symbol [] indicates omitted sections of text. Pseudonyms are utilized to safeguard participants’ identities.
Advance directives as preparedness for death – ‘it’s not that I’m dying right now’
The theme of wills generated substantial discussion among focus group participants. Wills were considered a hallmark for preparedness or lack of preparedness for death as illustrated in the following excerpts drawn from an FGD 1 conversation:
Elimu (FGD1): Before he [husband] went to the hospital we sat with the family and he was telling us ‘now very soon you’re going to have one parent and it’s good you start adjusting. Mum cannot afford the rent. Now, she’s going to look for a smaller house [] And the little money which I’m going to leave will educate the ones who are in school’ [] And he said ‘Jumuia[daughter] take that book and write what I’m saying.’ [] And then after that he was saying ‘it’s not that I’m dying now, right now [] But you know my sickness; you know it’s cancer and there’s no cure’ [] I wouldn’t have managed but he really prepared us very well.
The statement ‘it’s not that I’m dying now’ points to the commonly held Kenyan belief that speaking about death implies summoning it, which might explain Elimu’s husband’s need to reassure his family that he was not on his death bed at the time of issuing his will. Retrospectively, Elimu appreciated her husband’s advance directives in aiding her cope with his death.
Elimu’s experience seems to have caused other group members to recall and reflect on their own experiences, with Elimu’s story as the point of reference for Baraka and Usafi’s meaning-making:
Moderator: I don’t know if anyone has something to say as we part. What would you say to other women who are going through this as we end our discussion?
Baraka (FGD1): Well, the only thing I’d say, I’m very happy that your [Elimu’s] husband did that because my mother didn’t do that and it left us in disarray [] I think that’s very helpful because reality is reality whether you like it or not [] and I kept on telling my sisters this and actually they thought I was an enemy. At one point they just told me ‘you want your mother to die’ which is not the case [] I didn’t know the date but from my senses I could tell that this is not the road to Jahazi Town [parents’ current residence]. This is the road to Mpakani Town [rural home] where the grave was going to be put [] and this is where I really feel as a family we went wrong and we did not support my mum because we were not giving her strength to, to, to be dignified [] Just be like this gentleman who died because I think it was a very dignified death.
Baraka sought to initiate end-of-life discussions with her sisters in an effort to support her mother by facilitating what she deemed a dignified death. This yielded dissonance between cultural beliefs regarding speaking about death being perceived as a death wish versus the reality of impending death, communicated in Baraka’s metaphor of ‘the roads’, symbolizing the common Kenyan practice of burial in rural homes. In this cultural context a death wish may be interpreted as ill will towards a seriously ill family member in the sense that ‘you want your mother to die’ in contrast to waiting for the ill person to communicate one’s dying wishes, like in Elimu’s case. However, Baraka’s intent seemed to be encouraging ‘death talk’ in the context of preparation for death, a perspective documented in palliative care literature [
1,
2,
29]. The context of the cited studies – established palliative care facilities with palliative care professionals - differs from the current study where end-of-life care conversations occurred in home or hospital contexts outside of formal palliative care structures.
Usafi picked up the conversation, incorporating both Elimu and Baraka’s experiences in her meaning making:
Usafi (FGD1): Yes, I just wanted to identify with eh, Auntie [Elimu]. For me, I think what helped us as a family is being prepared. Dad has been sick for a long time but it wasn’t until last year June that he sat us [family] down and told us ‘I want you people to walk with us this journey’. I remember sharing with a friend and I’m telling her ‘hĩĩ! The way this man has shared, it’s like he’s going to die the next minute’[] so he wrote his life story – he actually gave it to us [] and so we safeguarded the family history. He told us where he wants to be buried [] when I heard you [Baraka] talk, I was thinking your mum hid so much. She didn’t want to see you in pain and sometimes for a woman it’s harder. For a man I think he’s feeling like ‘if I leave my family like this everything will be, you know, in disarray’.
Similar to Elimu’s account, Usafi and her family were invited to play audience as her father gave advance directives. For Usafi, this entailed navigating the tension between the traditional belief that speaking about death is summoning it and respecting her dying father’s wishes to discuss his end-of-life concerns with the family.
Usafi’s last comment supports gendered socialization of (a) men as the heads of patrilineal households with responsibility for decision-making in the home [
30], and (b) women as carers and nurturers of their children and spouses, including caring for ill family members [
31,
32]. Hence, it is understandable how women’s concern at the end of life would be to ensure the emotional comfort of their families which might include avoiding ‘death talk’ to avoid upsetting them. This resonates with the sentiments of a sample of South African cervical cancer patients some of whom were concerned about the potential emotional distress to their families upon disclosure of their diagnosis [
33]. However, the following section demonstrates that beyond gender, there were other factors in play.
Initiating ‘death talk’: Whose call? – ‘he wouldn’t talk’
Huruma, an elderly widow in FGD 2, found herself caught in the tension between her children’s demand for their father’s will and her husband’s silence about it:
Huruma (FGD2): I actually remember telling my husband to write a will or to discuss with me what he wants with his, with the properties [] because my son kept on telling me ‘mum, you people have to write a will.’ And I kept on talking to my husband [silence, then lowers voice] and his mouth was tight-lipped. He wouldn’t; he wouldn’t say [] he wouldn’t say a single thing [brief silence] and in fact I, I felt like I was pressurizing him because my children were also telling me ‘talk to him, ask him [spoken in whispers but emphatic] has he got a will?’ but he wouldn’t talk [silence] he would not say a thing.
Jahazi (FGD2): He did not believe in wills
Huruma (FGD2): No. He wouldn’t talk at all; he wouldn’t say. And I realized now I am pushing him or I am making him say things he doesn’t want to say because he would just keep quiet and look at me.
In addition to her primary caregiver role, Huruma was a mediator between her children and husband. One could sense her predicament as she was caught between her husband’s avoidance, the demands of her children and her quest to maintain family harmony. Jahazi’s comment ‘he did not believe in wills’ insinuates that refusal to issue his dying wishes may be linked to known cultural traditions. Huruma also alluded to the possibility that her husband may have considered being pressured to give his will inappropriate and thus resisted her attempts. Perhaps silence was his way of protecting his family from distress in light of his impending death as observed among terminally ill parents in an American based study that investigated reasons for avoidance amongst families coping with lung cancer [
7]. Nevertheless, Huruma’s husband’s avoidance seems to negate Usafi’s idea of gender role socialization as a determinant of who should issue advance directives.
In another focus group Ojima’s 29 year old terminally ill sister was both explicit about her dying wishes and concerned for her family’s emotional wellbeing:
Ojima (FDG4): She called my brothers and myself, sat us down, told us ‘you guys, this thing is terminal and you know, I’ll be gone pretty soon so you guys need to start dealing with it. Have you thought about therapy? I understand that the hospice, there’re people who can help you deal with, deal with this’. I was like ‘too much!’ You know we’re like ‘why are you saying that?’ My brother was like ‘stop talking; stop talking like that!’ She said ‘Seth, it’s terminal. The sooner you guys get to grips with it the better.’ [] She told my parents ‘you guys need to release me. I’m ready to go.’ [] she said all her goodbyes [] she ran us through her funeral program as she wanted it.
Ojima’s sister seemed intent on preparing her family for her death despite their unpreparedness evident in the siblings’ attempts to stop her from ‘talking like that’. Ojima’s sister’s recommendation for therapy suggests concern for her family’s emotional wellbeing and relational harmony, a theme featured in end-of-life discourses [
34].
In certain instances, death talk featured directives regarding prolonging of life in terminal cancer. In the absence of explicit dying wills, caregivers and their families took responsibility for end-of-life decisions when their ill loved ones’ deaths were at hand [
34]. Jahazi and Fikira (FGD2) recalled making difficult decisions close to their spouses’ deaths:
Jahazi (FGD2): We were told that the doctor wants to see the immediate family[] he tried to explain to us that people may sometimes require that the patient be taken to ICU [intensive care unit] when the heart stops but he said he would, perhaps feel that that would be an unwise thing to do because of the bills that would be involved in ICU and yet you know it is a terminal illness [] But he cannot force any decisions on the family and the family would have to decide[] so we were asked []‘should the heart stop what would you like us to do?’ That was the hardest question and nobody was ready to answer it so we all kept quiet. We looked at him until I realized until I said something nobody would. So I said ‘we’ll go by his [the doctor’s] word and then we went round - every member of the family said ‘we’ll do what mum has said’ [] that was on Monday night. He passed away on [] Thursday night.
Rather than summon Jahazi, given that as the spouse and primary caregiver she would be considered the next of kin, he requested to meet the immediate family. The final decision was made jointly through family consensus.
Fikira’s contrasting experience reiterates the significance of family communal decision making in terminal illness:
Fikira (FGD2): he [the doctor] called me and said ‘Mrs Fikira I want you to sign here. If your husband deteriorates at night I want you to give us consent that we don’t take him to ICU. If he was my father that’s what I would have done- he was a young doctor - because he is going to be on a life machine and this doesn’t help. But just tell me what you want.’ Now this is where the decision was very difficult [] I, I, signed and after the doctor had gone my daughter cried, sobbed, ‘mummy how can you do [emphasis] that? [] I wish he had told me before so that I consult the members of the family [] She was very bitter: ‘How can you do that? Sign our daddy out?’
In Fikira’s case, the doctor prevailed on her, as primary caregiver, to act as the sole surrogate decision maker [
34,
35] on her husband’s behalf. Fikira’s response to her daughter’s outburst suggests the bone of contention was that the decision was made singlehandedly without consulting the other family members, who may have held different opinions.
Though it is unclear but possible that Fikira dealt with the same doctor, he involved Fikira’s family in the next major decision regarding their ailing father:
Fikira (FGD2): He [doctor] told us ‘tomorrow, Monday, come and see me with members of the family.’ We went on a Monday. He told us ‘we have done everything and now medically we’re not doing anything; it’s only nursing care. And there’re two things – you take him home or we take care of him in hospital: which one do you choose? Many people would like to see their person go [die] at home and even when they go home sometimes they get better.’ So we chose for him to come home [] on Wednesday he came home [] Friday he went - he died peacefully.
The decision regarding this advance directive, made in consultation with family members, did raise any objections. This discussion underscores the significance of cultural sensitivity, for example, in this context where family consensus was preferable to decision making by one family member [
5,
34,
36].
Though both Fikira and Jahazi’s husbands were admitted in the same private hospital in Nairobi, Jahazi was neither offered the option of taking her husband home nor of being present with him at his death bed:
Jahazi (FGD2): I told the sister [nurse] I wanted to stay on for the night. And I knew they allowed people because there were other patients that were allowed to have a close member of the family with them when they became very sick, and she was adamant; she refused [emphatic] [] maybe she, they knew he was going and I felt very [emphatic] bad because they refused to allow me to, and then because they called me at 3.00a.m. [Silence] to tell me that he had passed on at 1.00a.m., could I go to the hospital and I said ‘no, I’ll come in the morning’. I mean, I couldn’t even drive.
Jahazi’s sense of disappointment in the healthcare personnel for denying her the opportunity to be present during her husband’s death and regret that she was absent at that critical moment is apparent. Possibly, her role as the informal primary caregiver was neither understood nor appreciated in the formal healthcare set up. Jahazi’s experience reiterates the sentiments of a sample of informal cancer caregivers who reported feeling invisible and side-lined by healthcare professionals [
37].
This raises the question of why some families kept their relatives in hospital despite their knowledge that their illness was terminal; nine out of 13 patients died in hospital. This is consistent with a Botswana based study which showed more deaths, including cancer deaths, occurring in hospitals in urban cities [
38]. Though the Botswana study did not elaborate on the reasons for hospital deaths, one possible explanation is that being ill prepared coupled with the lack of resources necessary for home based critical palliative care forced families to take their dying loved ones to hospital [
15,
39]. This is in contrast to contexts where alternative resources such as home based and/or inpatient nursing and hospice care reduced the instances of hospital based deaths [
11].