In this section we will present what we see as the main results. The three close thematic findings show how, in ACP-conversations, 1. Patients and relatives are perceived as an intertwined unit, 2. Relatives’ involvement and participation in ACP-conversations is significant to get to know what is important in the patients’ lives, and 3. Families share experiences of dying and death. Before continuing to present the results in detail, we want to add some information about the conversations. In the participating nursing homes, questions concerning future medical treatment and end-of-life care were raised as part of admission conversations and bi-annual routine conversations. Only in nursing home C was the sole aim of the conversation to talk about and discuss future medical treatment and withdrawal of treatment. The patients who took part in the conversations were asked about DNR, if they wanted medical treatment in case of infections like pneumonia, if they wanted hospitalization and if they had any particular thoughts or wishes about dying and death. Only in one case was the patient asked a ‘non-medical’ question; if he had any hopes or worries for the future. Even if there were one or more nurses present, it was always the physician who raised the ACP-questions.
Relatives and patients; an intertwined unit
All the patients who participated in our study were (more or less) competent. This should indicate that it was possible to conduct a conversation about health issues and future treatment with patients on their own, but in all of the observed conversations one or more (close) relatives were present. A relative is defined in the Patients’ and Users’ Right Act (§ 1-3) as the person or next of kin who the patient notifies as his/her relative. In our study, six daughters, two sons, two spouses, one son-in-law and one niece took part as relatives in the encounters with the nursing home staff. Thus, all the relatives were close family members, and there were no friends of the patients among the relatives. Some nursing homes had written information and procedures on how ACP-conversations between patients, relatives and staff should be carried out, what the aims of the meetings were, and who should participate. In these documents, nursing home patients and relatives were more or less treated like one unit, because they were often mentioned together or addressed together. For instance, nursing homes held admission conversations where questions about future medical treatment were raised, called Physician, patient and relatives’ conversation, or User and relatives’ conversation. As already described, observing the conversations confirmed the impression of patients and relatives being connected and intertwined, and of how the patient’s well-being was related to their relationship to their loved ones.
The observation of a conversation between Arne, who has lived on the nursing home ward for more than five years, his wife Liv who visits Arne every day, and the nursing home physician illustrates the point of being intertwined. The conversation took place in Arne’s room and centered on the present unstable medical situation, possible new strokes and whether Arne needs hospital admission in case of a new stroke. The physician wonders if it is better for Arne to stay on the ward, and he asks Liv what she thinks about hospital admissions. They remind each other that the last pneumonia was well taken care of in the nursing home, and both Liv and Arne agree that in case of a new stroke, the hospital should be consulted before any decision about admission is made. The physician then asks Arne: “Do you have any other worries for the future – or hopes?” Arne refers to a documentary about a wheelchair bound man who trained himself to walk, and asks if that could possibly happen (to him)? Liv comments on this as a wishful dream, and the physician states that this is not possible for Arne. Liv continues by telling us that a density has been found in one of her lungs, and that she needs to go through further examinations. The physician asks questions concerning her symptoms, and while Liv’s possible illness is talked about, the atmosphere in the room is felt by LT as becoming tense. Arne says that he tries not to think about how Liv may be ill, and that everything is going to be fine. The physician says that the staff should be informed because Liv visits every day, and if she is ill, they should know.
We find that this case illustrates well that issues concerning the aging patients’ deteriorating health, what is important today, and what may happen in the future is something that not only ‘belongs’ to the patient. These are issues that are also part of the relatives’ daily life as well as the rest of the family. What Arne wants for himself is closely related to Liv’s former experiences and knowledge about Arne, and as this case shows, what happens to Liv means a lot, perhaps everything to Arne. The couples’ everyday life is intertwined in many ways, and it is difficult to see how Arne could plan for the future without consulting or involving his wife, and the other way around. Liv and Arne are involved with and dependent upon each other.
In one of the nursing homes, the physician’s practice was quite the opposite. Prior to admission conversations where the relatives were invited, the physician always talked to the patients alone about their future wishes and preferences. The physician explained that it was important to talk to patients on their own, to be sure that the patients’ wishes and preferences were not affected by what relatives thought. This means that during the observed admission conversation, where the patient and her daughter were present, as well as the physician and other staff, the physician informed all of us of what the patient had already expressed as her wishes and preferences on future medical treatment and hospitalization. In the interview some days later, the daughter said that she wished she had been informed in advance about the dialogue between her mother and the nursing home physician and she said: “I find it to be a good thing that they want to talk to her, because she is able to express her views. But, I wish we could have talked to each other in advance, and I also would have liked to talk to my brother. I just think that we should have been informed.” The daughter told us that her mother had recently been through a very tough time where she lost a leg and now she was bound to a wheelchair. The daughter thought that her mother should have been spared being asked questions about wishes concerning future medical treatment and end-of-life shortly after this extremely hard period. We find that this example highlights how the daughter felt that she was somewhat set aside by the physician. She had followed her mother closely for many years, and had recently faced a hard time by her side. In the interview, the daughter repeated many times that at the one hand, it was right to ask her mother what she wanted, but on the other hand, she expressed that it was also kind of harmful to her to have to answer the questions. The daughter was fully aware of the value of autonomy, but she also wanted to protect her mother. Another relevant issue in this particular nursing home is that the daughter was informed about her mother’s preferences along with the staff. This way, she was treated like the staff, even though she had very different knowledge about, and relation to the patient. What we see as sensitive issues concerning future illness and dying is handled as information in an efficient way. During the observed admission conversation, there was no room for reflections on the impact these questions had on the patient or the daughter.
The daughter above, as well as a niece in one of the other nursing homes, expressed what we interpret as responsibility and protectiveness towards their loved ones. In the case with the niece, she participated in the ACP-conversation along with her aunt. The aunt seemed to struggle to answer questions concerning future illness, whether she wanted to be resuscitated if her heart stopped and whether she had thoughts about dying and death. In the interview, the niece told us that she wished she had had the chance to talk to her aunt before the conversation, so that her aunt was better prepared for the serious questions concerning medical treatment and end-of-life care. It was not that the niece didn’t want her aunt to have the ACP-conversation; she only wished that they had talked about it first.
As a close relative, you may not have any other option than being by the side of, for instance, your old mother. In the observed conversation in one of the nursing homes, the participating daughter was the patient’s – Asta’s - only child. Because of aphasia, Asta couldn’t speak, and her daughter had to answer questions on her behalf. During the conversation, the daughter held Asta’s hand, and she repeated the physician’s questions to Asta, using some other words. Their faces were near, and it looked like a warm and trusting relationship. When the physician asked about DNR, they both quietly started to cry. In the interview after the conversation, the daughter denied that it was difficult to know what to answer as a proxy. She said that she and her mother had never talked directly about future medical treatment or end-of-life issues, but “I know her so well, I know what matters to her.”
Our data shows that planning for the future is something that relatives want to be involved in. One daughter expressed that she wished that she could have consulted her brother about the medical questions that were brought up during the ACP-conversation, and one son told us that he represented his two brothers in meetings such as this conversation. He often discussed issues related to his mother with his brothers, and then “they send me because I can come here during the daytime.” In the interview in nursing home G, two sisters talked about the importance of being able to talk and discuss with each other during the time of their father’s weakening and finally death.
Relatives’ involvement and participation in ACP-conversations is significant to get to know what is important in the nursing home patients’ lives
As described in the literature, an ACP-conversation should cover more than mainly medical questions. Getting to know what is important to the patient today, and what are perhaps future worries is vital to be able to understand and plan for end-of-life care. Analyzing field notes of the conversations and interviews with patients and relatives through the lenses of a family ethics perspective, we became aware of what we interpret as a mismatch between what matters to the patients and what the focus of the conversations are.
One of the conversations illustrates this well. Jenny had just moved onto the ward and prior to the ACP-meeting, the nurse and Jenny had exchanged information about Jenny’s former life, and about daily routines on the nursing home ward. The nurse started the conversation by sharing with us what Jenny had answered to different questions about her life. Jenny herself was listening quietly during this part. When the physician took over, and shifted to questions concerning future medical care, hospital admission, and also asked Jenny if she had any thoughts or wishes concerning the dying phase, she replied: “It is difficult to answer (your question),” or: “I haven’t thought about it, but I don’t think one should start (DNR),” or she didn’t answer at all, looking like she wanted to excuse herself. All in all, Jenny’s participation in the conversation was perceived (by LT) as quiet, passive and hesitant. At the same time, Jenny seemed to follow intently what was said, and her facial expression and bodily movement made her look tense. In the interview with Jenny and her niece that followed straight after the conversation, the impression of Jenny as a perhaps shy or quiet person changed to some extent. LT asked Jenny how she felt about taking part in the conversation, and whether she had ever talked with anyone about dying and death. When Jenny said that she hadn’t talked to anyone about such things before, her niece asked: “Not even with Brita, your sister?” Jenny answered no once more, and then continued to tell us about her sister who died just a few months ago: “We have always been together, we grew up together, we worked together and we lived together; we have had everything together.” The niece continued: “But the two of you never talked about death, not even when she became ill?” “No, (Jenny continues), we have been a little…not so communicative about such things.” Then she tells us about a friend who is coming to visit.
The patient Mary had also just been through severe losses; her sister died a year ago; they were close. Then she lost a leg and now she had lost her home because she had to move to a nursing home after the amputation. This affects Mary’s wellbeing and mood, her daughter told us during the interview: “She (Mary) has lived at home until now, and her hope was to continue to stay at home as long as possible, and then all of a sudden, everything is changed, and of course, that makes you lose your strength and your optimism, and…it doesn’t help (your mood) to have such a conversation (ACP-conversation) right after admission to the nursing home…I can see that she has become …you become a bit depressed moving to a nursing home because it is the last stop.” The dramatic changes in Mary’s life were not mentioned in the observed ACP-conversation, except from some brief information from the physician about the amputated leg. While the daughter is able to connect the dramatic changes in her mother’s life with the ACP questions raised by the physician, this connection is not mentioned by any of the staff during the ACP-conversation.
In the interview with the patient Asta and her daughter after the ACP-conversation, the daughter told us that the biggest problem for Asta is that since she moved to the nursing home, Asta and her husband had to live separated lives: “And my old father, he is 95 and he wonders when she (Asta) is coming back home. If he wants to come here, he has to come by taxi…sometimes he only comes Saturday and Sunday.” What the daughter described as her parents’, as well as her own, biggest problem was not brought up in the admission conversation about Asta’s life and future in the nursing home. Perhaps Asta’s daughter is right when she claimed that: “(the conversation) was obviously meant to be about medical issues…the focus was on the medical part.”
We find that the mismatch between which questions and issues are at stake in the conversations and what came to fore in the interviews underlines the importance of a family perspective in advance care planning. To Jenny, Mary and Asta, their close relatives could have added important and relevant information in the ACP-conversations if other kinds of questions had been asked. They knew their life stories, what had recently happened, and what matters to their family members today.
The families’ shared experiences of dying and death
This finding is closely related to the former one, where the relatives’ knowledge of the patient’s life can bring to fore important issues to be talked about in ACP-conversations.
For many people, dying and death is hard to talk about. The participants in our study were no exception; both health care staff as well as relatives expressed that they found it difficult to talk about or raise questions concerning the future death of the patient/family member. The observations showed that it was the physician who was responsible for turning the conversation in the direction of treatment choices and death. When asked in the interview how they experienced raising these questions, more or less all physicians described this as challenging. However, they conducted conversations like this routinely, and had been through similar meetings many times. For most patients and relatives it was quite the opposite, this was the first time they took part in a conversation like this. When they were asked how they experienced talking about treatment choices and dying, one son answered: “… (the conversation) introduced the topic of death, and we are not particularly good at talking about it – it is not a common topic of conversation in our family…we have talked very little on a deeper level”. A daughter expressed in the interview, that to be honest, she hadn’t thought much about the future death of her mother, and she had never talked with her mother about dying or death. This is similar to another son who confirmed that he had never touched upon these issues with his mother before she became ill. He added that he found it important, but very difficult, to have the conversation with the nursing home physician. These answers were representative for nearly all the relatives. When we asked them if the patient had ever talked about, expressed any wishes or made any kind of plans for their last phase of life, the answer was mostly no; one’s own death was not talked about nor planned for in any way. None of the relatives or patients could tell us about proper conversations in the family about dying and death, nor the patients’ future death.
However, what was talked about and shared in the families (we were told in the interviews) was the death of others. That is; how people close to the family or family members had died; either in accidents or because of serious illness, the impact of dying and deaths on the family, how the funerals had been and the sad memories. For instance, when Asta’s daughter was asked if she and her mother had talked about death before the ACP-conversation, she answered after a long time: “…No, let’s see – we have talked a little about the funeral, and my father, he wants to be buried, which is different from the rest of the family who want to be …and then, our nephew was in this terrible accident, and is also cremated – but except from that, we haven’t talked about it. No, we haven’t. …we try to see it as natural as possible; we are all going away from here. We have talked about those that are left behind, and my parents have been so healthy and many of their younger friends have died. It is sad to think about. And we have talked about the sadness of dying – and to older people, it is sad, but natural to die”.
A son also pointed to the deaths of other people as the link to his mother’s death: “She had a stroke before, and she has recovered more or less, and then we (the son and his mother) talked about other people in the same situation…and we had some experiences with dad who died in this nursing home…we learned a lot during his last days. So we were prepared when mother moved in to the ward.” A niece expressed: “I have thought a lot about all the losses old people experience, you (addressing her aunt) have lost so many friends.” The niece and her aunt had also experienced the death of a fellow relative in the same nursing home.
All the patients and relatives who participated in our study had experienced serious illness, dying and deaths of family members, friends or people they knew. They had visited dying people, and they may have reflected upon the weakening and fading bodily process of dying. They had been to (many) funerals and they had experienced grief. Talking about dying and death is described as difficult in Western culture, and as we can see in our data, the future dying of older family members is not talked about inside the family. But even if family members don’t talk to each other, we claim the importance of paying attention to how people have experienced the death of others; how they ‘practice’ around the death of others, and how shared experiences and memories about former deaths may be part of the bigger family narrative. Indeed, we find this to be relevant when planning and talking about one’s own future and end of life.
