Overview of study participants
A total of 228 respondents satisfied the inclusion criteria. Among them, 15 participants were selected from among the respondents who were available for interviews at a date and time convenient for both researchers and participants (i.e. interviewees). The number of individuals pooled by the web survey company(12), to whom survey requests could be sent, was not disclosed by the company. The 15 participants were interviewed over the course of six non-consecutive days such that up to three participants were interviewed per day in November and December 2017. Although 15 participants were interviewed, the data from only 14 were subjected to analysis; the remaining one participant’s data were excluded since the participant was a patient’s family member but did not make decisions on the patient’s behalf. Table 2 summarises the participants’ characteristics. All the surrogate decision-makers who participated in this study were family members of the respective patients.
Table 2:characteristics of surrogate decision making in this reserach |
Age of surrogate decision-maker |
Relationship with patient |
Interview duration (minutes) |
Sex of patient |
Age of patient |
Cohabiting (patient and surrogate decision-maker) |
Inpatient department |
Content of surrogate decision-making |
Life-prolonging treatment |
Ventilator |
Artificial nutrition |
Place of treatment |
Dialysis |
30s |
daughter-in-law |
48 |
Male |
70s |
NO |
Cardiology |
○ |
○ |
○ |
○ |
○ |
40s |
eldest daughter |
50 |
Male |
70s |
NO |
Neurology |
|
|
○ |
|
|
40s |
daughter-in-law |
40 |
Male |
70s |
NO |
Respiratory |
○ |
○ |
|
|
|
60s |
second son |
50 |
Male |
80s |
NO |
Neurology |
○ |
|
○ |
○ |
|
60s |
eldest son |
26 |
Female |
90s |
NO |
Internal medicine |
○ |
○ |
|
|
|
40s |
eldest daughter |
40 |
Male |
80s |
NO |
Neurology |
|
|
○ |
○ |
|
40s |
eldest son |
25 |
Male |
60s |
NO |
Cardiology |
|
○ |
○ |
|
|
50s |
daughter-in-law |
45 |
Female |
70s |
NO |
Internal medicine |
○ |
|
|
○ |
|
50s |
second daughter |
37 |
Male |
80s |
NO |
Internal medicine |
|
|
○ |
|
|
40s |
second daughter |
34 |
Male |
70s |
NO |
Neurosurgery |
|
|
○ |
○ |
|
50s |
daughter in law |
48 |
Female |
70s |
YES |
Neurosurgery |
○ |
|
○ |
○ |
|
60s |
second daughter |
37 |
Female |
70s |
YES |
Internal medicine |
○ |
○ |
○ |
○ |
|
60s |
eldest son |
37 |
Female |
80s |
YES |
Internal medicine |
|
|
○ |
|
|
50s |
eldest son |
54 |
Female |
80s |
NO |
Internal medicine |
○ |
○ |
○ |
|
○ |
Qualitative analysis
Table 3 summarises the results of the qualitative analysis of the judgement grounds for surrogate decision-making in Japan. It clarifies that the study extracted 4 core categories, 17 categories, 35 subcategories, and 55 codes (in the following text, core categories, categories, subcategories, and codes are represented using quotation marks, square brackets, angle brackets, and parentheses, respectively).
Table 3 Results of the qualitative analysis of the judgment grounds for surrogate decision-making in Japan
Core category |
Category |
Subcategory |
1. Patient preference–oriented factor |
I respected the patient's preferences |
I told them that I had been instructed by the patient to decide against life support |
Since the patient’s preferences were clear, my decisions never wavered |
I made the decision respecting the patient’s intention regarding life-prolonging treatment |
I respected the patient's presumed intentions |
I made the decision based on my understanding of what the patient would do |
My daily communication helped (patient-family) |
I thought the family would be able to guess the patient’s intentions |
I think I made the decision believing it to be in line with the patient’s intentions |
I guessed the patient’s intentions by observing his/her condition |
|
|
|
2. Patient interest–oriented factor |
I tried making the decision by considering the patient’s best interests |
I valued the patient's safety |
I thought it would be good for the patient to receive medical treatment and recover |
I did not know what was good for the patient |
I did not want to do anything cruel to the patient |
I decided against life-prolonging treatment out of pity |
The patient appeared to be suffering; so, I thought he or she would be better off with gastrostomy |
I made the decision based on the patient’s ADL and communication capacity |
I agreed to forego life-prolonging treatment because I sympathized with the patient when I saw him/her being bedridden |
I did not choose gastrostomy since the patient was unable to communicate |
I thought the patient would find it painful to live in a vegetative state |
I thought it was my ego that wanted to choose life-prolonging treatment when the patient's condition was such that no communication was possible |
I expected the patient to recover |
If the patient had a chance at recovery, I wanted him/her to be treated |
I continued to hope for the patient's recovery |
I chose artificial alimentation in hopes of recovery |
|
|
|
3. Family preference–oriented factor |
I wanted to protect my family’s life and interests |
I wanted to bring him/her home; so, I chose the procedure (gastrectomy) |
I judged it realistically impossible to provide home care |
I made the decision that family members would not regret |
I realistically considered the lives of family members and decided to forego gastrostomy |
I thought that the patient's safety would ensure my own self-protection since I was the surrogate decision-maker |
I made the decision based on the thoughts of family members and other people close to the patient |
I ignored the discussions that we had in advance |
The feelings of the patient's closest family members were important |
I wanted the patient to live |
I was aware of the stance of the patient who refused life support; but I wanted him/her to live |
When death suddenly became a real possibility, I, as a family member, wanted to prolong the patient’s life |
I wanted to do everything I could |
I had the patient undergo gastrostomy for my family |
I thought nobody would want to die |
Because the patient's life was limited, I wanted to keep him/her alive for one more day |
I accepted death |
I had no regrets; so, I didn’t choose life support |
I thought that death was inevitable |
|
|
|
4. Balanced patient/family preference–oriented factor |
I balanced the patient's intentions and lives of family members |
I made the decision considering the balance between the patient's life and the lives of family members |
I balanced the intention of the patient and the thoughts of family members |
Type 1: Core category ‘Patient preference–oriented factor’
The Type 1 core category included the judgement grounds rooted in the patient’s preferences. This core category comprised 2 categories, 8 subcategories, and 13 codes. Some representative categories, subcategories, and codes are as follows:
[I respected the patient’s preferences]
One of the subcategories under this category was <Since the patient’s preferences were clear, my decisions never wavered>, which included the following code: (I had conversations with the patient in advance. We often half-jokingly talked about when the patient was going to die. 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 these choices while making decisions.
[I respected the patient’s presumed intentions]
One of the subcategories under this category was <I made the decision based on my understanding of what 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 make 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 determine the patient’s preferences from the patient’s perspective.
Type 2: Core category ‘Patient interest–oriented factor’
This category indicated the judgement grounds rooted in the patient’s interests. This core category comprised 4 categories, 12 subcategories, and 20 codes. Some representative categories, subcategories, and codes of this core category are as follows:
[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 have an opportunity to 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 facilitate this would be in the patient’s best interest and a good decision). The case in which a surrogate decision-maker considers a treatment option that enables the patient to live as usual is in line with the patient’s best interests and uses the patient’s best interests as the basis for decision-making.
[I did not want to be cruel to the patient ]
This category included the subcategory < I decided against accepting life-prolonging treatment out of pity for the patient>, 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 could understand what we were saying—so, we did not choose life-prolonging treatment. We clearly communicated these thoughts to the doctor and made the decision). The surrogate decision-maker judged that the treatment could not preserve the patient’s dignity once the latter’s condition worsened. This formed the basis of the decision-maker’s decision 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, being 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 low ADL at an advanced age. Such thoughts can cause the decision-maker to make a decision that shortens the patient’s time to death. Further, this code 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’
Type 3 core category included the judgement grounds rooted in the preferences of the surrogate decision-maker, who is a member of the patient’s family. This core category comprised 5 categories, 13 subcategories, and 17 codes. In this category, surrogate decision-makers made decisions on behalf of the patient based on their own (their family’s) preferences, rather than considering the patient’s preferences. Whereas the surrogate decision-maker was unaware of the patient’s preferences in some cases, he or she was aware of the patient’s preferences but chose not to consider them and prioritised their own preferences in other cases.
[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 forego 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 that he should not receive gastrostomy in consideration of continuing his medical treatment at the hospital). Although this surrogate decision-maker wished to prioritise the patient’s preferences, she made a decision that did not adhere to the patient’s preferences in consideration 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 patient’s 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 are satisfactory to her once she has organised 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 long 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 that 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 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 patient’s death became a real possibility due to the worsening of his or her health condition, the desperate hope of the surrogate decision-maker to prolong the patient’s life formed the basis of judgement in surrogate decision-making.
Type 4: Core category ‘Balanced patient/family preference–oriented factor’
The Type 4 core category included judgement grounds rooted in balancing the preferences of both the patient and the surrogate decision-maker (i.e. family). This core category comprised one category, two subcategories, and five 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 the lives of family members>, which contained the following code: (I had mixed feelings when I had to make a decision on the patient’s nutrition. Considering the burden on my brother and his wife who were actually providing 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 by considering the patient’s wish to receive home care and the burden on the lives of the family members who provided the care. Based on these considerations, 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 also aimed to reduce the burden of care on family members.