Overview of study participants
A total of 228 participants met the inclusion criteria. Of these, 15 participants were selected from among those who were available for interviews at a convenient date and time for both researchers and participants (i.e., interviewees). The number of individuals pooled by the web survey company, to whom survey requests could be sent, was not disclosed by the company. Interviews with the 15 participants were carried out over the course of 6 non-consecutive days (up to 3 interviewees per day) in November and December 2017. Of the interviewed participants, data from 14 were subjected to analysis after excluding one who was a family member of a patient but did not make decisions on the patient’s behalf. Details regarding participant characteristics are summarized in Table 2. All surrogate decision-makers who participated in this study were family members of the respective patients.
Results of the qualitative analysis of judgment grounds in surrogate decision-making are summarized in Table 3. A total of 4 “core categories”, 17 [categories], 35 <subcategories>, and 55 (codes) were extracted.
Type 1: Core category “Patient preference-oriented factor”
Judgment grounds rooted in patient preferences were classified as the Type 1 core category. This core category comprised 2 categories, 8 subcategories, and 13 codes. Representative categories/subcategories/codes are described below.
[I respected the patient’s preferences]
One of the subcategories of this category was <Since the patient’s preferences were clear, my decisions never swayed>, which included the following code: (I had conversations with the patient in advance. We often talked about when the patient was going to die, half-jokingly. The patient also mentioned specific matters, such as not wanting to live with various machines connected to the body). In this case, the patient mentioned specific treatment choices in prior discussions, and the surrogate decision-maker respected them.
[I respected the patient’s presumed intentions]
One of the subcategories of this category was <I made the decision based on what I thought the patient would do>, which included the following code: (We as family members tried to put ourselves in the patient’s place. We wondered which one of the choices my father would pick after hearing what the doctor had said, had he been able to make his own decision). In this case, the surrogate decision-maker attempted to figure out what the patient’s preferences might be, from the patient’s perspective.
Type 2: Core category “Patient interest-oriented factor”
Judgment grounds rooted in patient interests were classified as the Type 2 core category. This core category comprised 4 categories, 12 subcategories, and 20 codes. Representative categories/subcategories/codes of this core category are described below.
[I tried making the decision by considering the patient’s best interests]
This category included the subcategory <I thought it would be good for the patient to receive medical treatment and recover>, which contained the following code: (What I thought would be good for the patient was, for example, to be able to lead a normal life as before, even if it is somewhat inconvenient. I thought any decision that would allow for this would be in the best interest of the patient and was a good decision). The surrogate decision-maker considered a treatment option that allowed for the patient to live as usual would be in line with the patient’s best interests and used this as the basis for judgment in decision-making.
[I did not want to do anything cruel to the patient]
This category included the subcategory <I decided against life-prolonging treatment out of pity>, which contained the following code: (To be honest, we as family members just felt sorry for the patient, whom we couldn’t even recognize anymore, and since we were no longer able to have a conversation, we did not know how much the patient was understanding what we were saying – so we did not choose life-prolonging treatment. We clearly communicated these thoughts to the doctor and made the decision). As the patient became increasingly ill, the surrogate decision-maker judged that the patient’s dignity was not being preserved. This formed the basis for the judgment to tell the physician that life support was not desired.
[I made the decision based on the patient’s activities of daily living (ADL) and communication capacity]
This category included the subcategory <I thought the patient would find it painful to live in a vegetative state>, which contained the following code: (I might come off as an ungrateful child if I say this, but my feeling was that, rather than living in a vegetative state at age 87, the patient would be better off just dying. ... Living in pain connected to numerous tubes, just lying in bed and sleeping for 1 year, or 2 years – how pitiful, I thought, if that’s what it comes to). The surrogate decision-maker felt sorry for the patient living with significantly reduced ADL, given the patient’s age. Such thoughts could lead to a decision that shortens the patient’s time to death. This code also reflected a sense of guilt associated with making a surrogate decision based on the family’s preferences.
Type 3: Core category “Family preference-oriented factor”
Judgment grounds rooted in the preferences of the surrogate decision-maker, who is a family member of the patient, were classified as the Type 3 core category. This core category comprised 5 categories, 13 subcategories, and 17 codes. Surrogate decision-makers made decisions on behalf of the patient based on their (family’s) own preferences, rather than considering the patient’s preferences. In some cases, the surrogate decision-maker was unaware of the patient’s preferences originally, while in other cases, the surrogate decision-maker was aware of the patient’s preferences but chose not to consider them, prioritizing their own preferences.
[I wanted to protect my family’s life and interests]
This category included the subcategory <I realistically considered the lives of family members and decided to forgo gastrostomy>, which contained the following code: (I thought ‘I must look to the best interests of my father,’ but realistically speaking, my younger sister, the second daughter, had young children and was running her own business. Her life would have been affected if she did not work. As the eldest daughter, I myself was also unable to leave the house for a long period of time because I was raising my children. Therefore, it was not at all realistic for us to provide home care. I shut my eyes to his pain and wishes and decided not to have him receive gastrostomy in consideration of continuing medical treatment at the hospital). While this surrogate decision-maker wished to prioritize the patient’s preferences, she made a decision that did not go along with the patient’s preferences in light of the realistic circumstances surrounding herself as well as other family members.
[I made the decision based on the thoughts of family members and people close to the patient]
This category included the subcategory <The feelings of the closest family members were important>, which contained the following code: (I needed to convince my mother-in-law, who was closest to the patient. I thought that, rather than us (the son and his wife) making decisions against her will, she should make decisions that she is satisfied with, after she has organized her own thoughts. For this reason, it took a lot more time to come to a decision, and I’m afraid my father-in-law suffered for a prolonged period). This code describes a surrogate decision-making process in which the surrogate decision-maker secured the time necessary for the family to agree with the decision. However, this in turn increased the time the patient was in pain.
[I wanted the patient to live]
This category included the subcategory <When death suddenly became a real possibility, I as a family member wanted to prolong the patient’s life>, which contained the following code: (The shock was tremendous when the doctor told us that death was inevitable, as the patient’s condition worsened. At that time, I honestly just thought, ‘I want the patient to live, even a day longer,’ and it didn’t matter if gastrostomy, or anything, had to be done. It was hard for the family to have to say goodbye all of a sudden, so I wanted the patient to get better, even just a little. I was always prepared, to no small extent. But when a doctor talks about life-or-death, you can’t help but think “please just help the patient”). When the death of the patient became a real possibility with worsening health, the desperate hope of the surrogate decision-maker to prolong the patient’s life formed the basis for judgment in surrogate decision-making.
Type 4: Core category “Balanced patient/family preference-oriented factor”
Judgment grounds rooted in balancing preferences of the patient and those of the surrogate decision-maker (i.e., family) were classified as the Type 4 core category. This core category comprised 1 category, 2 subcategories, and 5 codes.
[I balanced the patient’s intentions and lives of family members]
This category included the subcategory <I made the decision considering the balance between the patient’s life and lives of family members>, which contained the following code: (I had mixed feelings when I had to make a decision about the patient’s nutrition. Considering the burden on my brother and his wife who actually provided care, I wondered how my decision might affect their lives. On the other hand, I also had to think about the feelings of my father who wanted to recuperate at home. It was a hard decision to make. I was particularly worried about the burden on my sister-in-law). As suggested by this code, the surrogate decision-maker made decisions while considering the patient’s wish to receive home care, as well as the burden on the lives of family members who provided the care. On these grounds, the surrogate decision-maker ultimately decided on gastrostomy as a means of nutrition support, which was not in line with the patient’s wish to receive home care. This decision was also made to reduce the burden of care on family members.