What will happen to my mom? A grounded theory on nurses’ support of relatives’ end-of-life decision-making process for residents living with dementia in long-term care homes

Admission

The protocols in place in the long-term care homes indicated that the level of care should be discussed and established shortly after admission. Participants confirmed that the weeks following admission were generally the first opportunity to discuss the interventions to be carried out once the resident’s clinical condition deteriorated. Practices varied between long-term care homes, but it was generally head nurses or assistant head nurses who initiated these discussions before the physician officially prescribed a level of care. As required in the health system, this level of care was usually reviewed annually for each resident by the interprofessional team in collaboration with residents and their relatives.

Onset of specific signs or symptoms

For nurses, the onset of specific clinical signs or symptoms was an important indicator of disease progression and of the need to initiate discussion with relatives. Examples of fairly reliable signs of deterioration were a loss of muscle tone resulting in dysphagia, or a significant decrease in walking ability or tolerance. These signs indicated the need to discuss end-of-life decisions with relatives.

Almost all the time, it starts with food. Actually, with the muscle tone, [the resident] needs a geriatric chair, loses muscle tone and, with the loss of tone, dysphagia sets in. And with dysphagia, the patient eats less. Already, as soon as the person begins having dysphagia problems and uses a geriatric chair, we start talking with the family, talking about the [end-of-life] process. (Nurse 3, line 92)

Rigidity, drowsiness, anorexia, apathy, or repetitive infections without other apparent cause are other signs of deterioration in residents’ clinical condition that trigger nurses to broach the subject of end-of-life with relatives.

Decrease in quality of life

Finally, both nurses and relatives mentioned the residents’ deterioration or lack of quality of life as a turning point in the disease trajectory and an essential aspect to consider for end-of-life care. The definition of a “still acceptable” quality of life varied greatly among participants. However, one common element was relatives seeing that the older person could still recognize them, and both relatives and nurses pinpointed the moment when this was no longer possible as pivotal in the disease trajectory. Indeed, this turning point where they felt there were no more quality of life often prompted end-of-life discussions. One relative shared, with emotion, the moment he realized his mother no longer recognized him:

(...) we’d go to see our mother, take her hand when we arrived. ‘Hello Mom, how are you?’ Her eyes would sparkle! But the morning I got there, took her by the hand, saying ‘Hi Mom, how are you?’ as usual and, when she opened her eyes, … no reaction. That’s when I said to myself, ‘Oh my god’ (...) I felt … like she was cold, a dead person still alive. (...) She was already dead. (Relative 6, line 278)

For others, the loss of their relative’s quality of life was associated with an inability to eat, a lack of awareness of their environment, or signs of discomfort the majority of the time.

Demonstrating technical skills and clinical judgment

Relatives’ capacity to develop an initial trusting relationship stemmed in part from their perception of nurses’ technical skills (e.g., dressing a wound or administering an injection) and clinical judgment (e.g., interpreting vital signs or reacting to the onset of a new symptom and then intervening appropriately). Initially, relatives had a limited interest in assessing nurses’ relational skills. They wanted to ensure that their nurses had the technical skills and clinical judgment that would lead to a quick and efficient response in the event of clinical deterioration. Once this initial trust was built, relatives then assessed nurses’ bedside manner.

Being transparent and proactive

To foster a trusting relationship with residents’ relatives, nurses had to adopt a transparent and proactive approach. For instance, this could be achieved by immediately disclosing any unusual situation, such as incidents or accidents, and reaching out to explain the reasons why a particular treatment or intervention had not been done. This contact reassured relatives that the resident had not been forgotten. Instead, it informed them that temporary circumstances justified leaving a specific need unmet that day, as one relative explained: “They’d tell me ‘today, we didn’t have time’ or ‘your father didn’t want to,’ so I would understand.” (Relative 12, line 195)

Trust was also built when nurses had a proactive attitude when a problem occurred, responding quickly and without relatives having to intervene. For example, one participant was relieved that after her mother had fallen into a closet when walking, as she frequently did, a nurse placed a foam mattress there. Being promptly informed of the situation and seeing the nurse intervene immediately to mitigate the consequences of a potential subsequent fall significantly increased the trust in this relationship. Moreover, this relative was convinced that the team’s suggestion to start end-of-life care was the appropriate decision during her mother’s pneumonia: “Because they always took great care of her and they always set the record straight and I trusted them and she [my mother] did too.” (Relative 11, line 253)

Relatives mentioned nurses taking the time to answer their questions or to follow up if they did not know the answer as being important to trust-building. This was also the case with problems needing to be addressed or special requests: relatives’ trust in the healthcare team was greater when relatives did not have to reiterate their position.

Demonstrating a genuine interest in residents and their relatives

The nurse-relative relationship was positively influenced when nurses demonstrated genuine interest in the resident and their relatives. This was manifested when nurses knew the residents and their habits, interests, and life story, and adapted their interventions accordingly. The relationship also benefited when nurses gave importance to the relatives who were present. A relative explained that this was why she trusted the healthcare team:

Their empathy, their kindness to my mother. They knew her very well. Empathy to want to help us, too. Then, when my father came to see her, the empathy for my father, wanting to chat with him and get to know him, too. (Relative 12, line 187)

Another way nurses confirmed their genuine interest was by recognizing the relatives’ knowledge of the resident’s needs. This recognition was demonstrated by involving relatives in discussions about daily care and the best ways to provide it to residents, as evidenced by the same study participant:

Sometimes I’d say, ‘You know, my mother, this problem...’ and she [the nurse] would answer, ‘What do you think if we bathed her in bed instead? It would be less trouble for her’ ‘Ah, yes, I agree.’ Things like that, you know, being involved in the decisions. (Relative 12, line 31)

Recognizing relationship difficulties

Despite all the efforts invested, the trusting relationship was sometimes difficult to establish for healthcare professionals. For a variety of reasons, including difficult prior experiences in the healthcare system, some relatives displayed mistrust of the professionals and of the care they provided. Sometimes, nurses acknowledging the friction or precariousness of the trusting relationship was enough to defuse the situation and foster relatives’ openness, thus forging a bond and establishing communication with these relatives:

I recognized that the trusting relationship was weak, so I told [the relative] ‘I know you don’t trust us’ and then I actually reflected it all, ‘You think we drug her too much that it keeps her from eating. I know you don’t trust us’ and just to acknowledge the lack of trust there, already, I think then we made a lot of headway. (...) Just naming it already repaired something. (Nurse 3, line 12)

Therefore, technical skills, transparency, proactive attitude, and genuine interest for residents and their relatives proved to be essential components in establishing a trusting relationship, which, in turn, allowed nurses to effectively support the decision-making process that guides the end-of-life of people living with advanced neurocognitive disorders in long-term care homes. The relatives who were convinced that the nurses worked for the residents’ well-being expressed greater trust in the healthcare team.

Fear of abandonment and of poor quality of care

Some relatives associated end-of-life care with abandonment in two ways. First, relatives felt that, by accepting this type of care, they were giving up and thus abandoning the resident. For some participants, agreeing to palliative or end-of-life care was synonymous with provoking the resident’s death or at least being responsible for it, as one nurse testified: “The family, [all the siblings], told me ‘if we stop [the treatment], we kill her right there,’ [...] then, ‘we’re going to have killed our mother, you know’” (Nurse 15, line 121).

Second, yet other relatives perceived professional suggestions to treat the resident’s various symptoms with a palliative approach as abandonment by the healthcare team. In their view, not to intervene curatively was the same as not intervening at all. Similarly, some relatives felt that palliative or end-of-life care was poor-quality or limited care. These beliefs caused some study participants to fear that their relatives would experience significant suffering when cared for with a palliative, rather than curative, approach.

Thus, relatives’ perception of abandonment—be it by the relatives themselves or the healthcare team—and the fear of poor quality of care were essential aspects that nurses explored when relatives expressed reluctance about palliative or end-of-life care. To work through these perceptions, nurses supported relatives by listening and validating the emotions they expressed. They then educated families by defining palliative or end-of-life care, the rationale behind the need to provide such care for the resident, and the care and supervision that were provided when a resident received palliative or end-of-life care.

Uncertainty, guilt, and hope

End-of-life decisions stirred a great deal of uncertainty and guilt among relatives. These latter doubted the resident really was “there” at the end of their life. They also feared making the wrong decision and living with regrets after the relative’s death. A nurse described relatives’ reactions:

They feel guilty. They do not know if they are making the right decision and they wonder (...) “Is that what my mother would have wanted, is that what my father would have wanted?” So, they question and then... “Could I do more if I asked for it? And if I don’t, I’ll feel guilty forever,” so it is a lot... (Nurse 18, line 23)

To guide relatives through this uncertainty and the guilt that may ensue, nurses used the same strategies as for perceptions of abandonment or the fear of subpar care: they focused on educating relatives. By providing a better understanding of the resident’s current medical state and the usual trajectory of the disease, they helped reduce relatives’ uncertainty.

However, even when rationally acknowledging that the resident was at an advanced stage of the disease and their likelihood for improvement was poor, some relatives sometimes maintained hope that the situation would improve, if even slightly. Conversely, accepting palliative and end-of-life care or refusing a potentially curative treatment reduced hope that the condition would improve or that the resident’s life would go on. One nurse said the following about relatives: “When we offer [end-of-life care], they are very reluctant because it means really giving up all possibilities of saving their relative, so for them it’s very complicated” (Nurse 4, line 82). Thus, uncertainty may persist despite cognitive recognition of the resident’s condition.

In these situations, nurses tried to instill a different hope, based on the family’s beliefs. Turning the hope of healing into a hope of life after death, a return to God, a cessation of suffering or a peaceful death, for instance, allowed relatives to cope better with the situation and adjust their expectations for care.

Aspects to be addressed

The essential information that needed to be shared with relatives related to the disease, how it manifests at different stages, and its expected trajectory. It was also important for nurses to address the impacts and risks of each of the treatment options available to the resident. For example, not adapting the resident’s diet or “forcing” a specific diet on a resident who does not wish to eat or drink runs a risk of causing aspiration pneumonia. Nurses therefore had to explore the benefits of each potential decision, but also its risks, with relatives.

Ideal timing

Participants did not identify the same ideal timing for education about the disease trajectory: while some felt it was better to teach early on in the journey, others considered it to be more appropriate to focus on the signs and symptoms that the resident presented in the moment. All agreed, however, that moments of crisis, such as acute symptoms of pneumonia being displayed, were undeniably inappropriate times for education. Given the uniqueness of each relative and situation, nurses mentioned the importance of exercising their clinical judgment to determine the best time to initiate or continue educating relatives.

A relative, whose mother had been admitted to a long-term care home a few months before, also mentioned her current need to protect the hope she maintained and to live day to day, without looking too far ahead. She said that, for now, she did not want education:

In the beginning, if we see too far ahead, if we know too much, it’s too difficult ... if we go back to one day at a time, well, we say today, it’s a good day and we will cross that bridge when we come to it. (Relative 13, line 63)

Plain language

The interviews highlighted the importance of clear communication when nurses provided education or information to relatives. Indeed, it was essential that they use simple but accurate terms when sharing information and, above all, that they avoid the use of euphemisms that might exacerbate misunderstanding in relatives. A relative, whose father had survived pneumonia in the months preceding his death from a second bout of pneumonia, reported this misunderstanding of the nurse’s message about her father’s condition just prior to his death:

The evening nurse (...) said ‘Oh you know, your father is not doing well at all.’ So, I thought, he’s really not well, but they had already telephoned [during the first episode of pneumonia] to say that he wasn’t doing well. (Relative 1, line 49)

This relative expressed surprise at her father’s death since, although she had understood that he was “not well,” she took this to mean that his condition was similar to that of the first episode of pneumonia, from which he’d recovered. She was not expecting him to die, even though the clinical signs reported during the interview clearly indicated her father’s impending death and the care provided by the healthcare team was indeed end-of-life care. The choice of terms used by nurses to discuss residents’ condition is therefore fundamental to relatives’ understanding.

Repetition, patience, and keeping things grounded in the present

It was crucial for nurses to understand that decision-making is, in fact, a non-linear and dynamic process. For optimal understanding, certain relatives needed to receive education or information on a specific topic several times over a more or less extended period of time. It was essential for nurses to recognize this need and to respect relatives’ pace whenever possible. Depending on the residents’ health, some situations did not allow unlimited time for reflection. In these cases, nurses relied on the strategy of supporting relatives’ need to witness the residents’ condition, while ensuring that they reflected on their perceived well-being. Questions such as “Do you feel that your relative is comfortable right now?” “Do you consider that he still has a quality of life?” “How do you find her compared to yesterday?” (Nurse 17, line 31) allowed some relatives to better understand the resident’s current condition and to see the suffering or deterioration.