Qualitative analysis
Focus group sessions lasted approximately one hour to one hour and 15 min. Individual interviews lasted between 40 min to one hour. We identified three broad overarching themes: 1) The acceptability of a “natural” versus “invasive” procedure, 2) Cultural traditions and family involvement, and 3) Level of trust in physicians and autonomy in decision-making.
The acceptability of a “natural” versus “invasive” procedure
Both ESRD and non-ESRD participants determined if a procedure was acceptable by first assessing if it was “natural,” versus “invasive.” Invasive procedures were described as “going against what the body wanted to naturally do” and “forcing the body away” from the dying process. For example, both ESRD and non-ESRD participants agreed that intubation, mechanical ventilation, and tracheostomy can be invasive. One participant shared “If my body cannot survive on its own without invasive means like machines, then just let me go.”
In contrast, “natural” procedures were described as those that could keep patients alive without a significant amount of physical and emotional suffering by assisting the body in its innate healing process. Among the non-ESRD participants, hemo- and peritoneal dialysis, and kidney transplants were considered natural. A non-ESRD participant stated, “I’m ok with dialysis because I see that patients on dialysis can live a normal life.” Similarly, participants described enteral or parenteral nutrition as natural, because it could help someone recover from acute illness. One non-ESRD participant describes a situation involving a relative when, “They had to switch from a [NG tube] to [G-tube], she was still strong, but just needed more nutrients to regain her strength while very ill.” One ESRD participant shares, “My wife had a hard time swallowing, but other than that she was fine, so of course they put it because that’s how they had to feed her.”
Natural procedures are further characterized by their outcomes, which was different for non-ESRD and ESRD participants. Some of the non-ESRD participants described dialysis as an enhancement of health rather than a life-sustaining intervention. A non-ESRD patient stated that his family member, “was already 92 and his body looks fine, [but] on the days when he gets dialysis he looks great!” Other non-ESRD participants made similar comments about dialysis. In contrast, ESRD participants described the outcomes of dialysis more concretely and were able to identify it as a life-sustaining process. HD participants described dialysis as “doing what the kidneys should normally be doing.” Participants on PD were even more specific stating “it helps remove the phosphorus which makes me itch…it removes the water in my lungs when I can’t breathe.” Both PD and HD ESRD participants expressed that without dialysis they would die.
A difference among ESRD participants, was the desire to continue more intensive procedures regardless of risks or limitations. For example, some PD participants shared that it would be worthwhile to continue all forms of treatment even if it would only add a few more days of life. “I told my children, please take me to the hospital so they can treat me, and spend your money on me, even if it only gives me a few more days.” However, both ESRD and non-ESRD participants described not wanting intensive procedures if they were diagnosed with a terminal cancer diagnosis, in which case most participants agreed that all procedures were futile, increased suffering, and should be stopped.
Cultural traditions and family involvement
The majority of participants acknowledged that they had not given much or any thought about their preferences regarding intensive procedures. They did however, report other topics that were important in thinking about their death. For example, both non-ESRD and ESRD participants felt that preparing for a traditional burial was important. They felt that adhering to cultural traditions could minimize emotional and economic burden on their family. Several participants stated that it is customary to save money to cover expenses for their funeral, as well as discuss details about the funeral with their children. Many stated this was important to them and they were trying to do just that, even though none of them were actively passing away. They believed this would avoid major conflicts among family members during EOL and after their death. One participant shared “I already have a burial plot at the cemetery, near my husband, I have money for each of my children, I have asked my children to bring the mariachi, and the songs I wish for them to play, and I told them how to divide the land I have in Mexico. I’m ready, and this way, I avoid discord between my children.”
Both ESRD and non-ESRD participants also believed that casual conversations regarding their EOL preferences with certain family members were sufficient preparation for EOL. One participant shared “I discussed this issue with my daughters, not my sons because I cannot count on them. I have made it clear to my daughters, and they understand that under no circumstances do I want invasive life, no tubes, just let me die natural.” Participants did not offer their views on the utility of written forms of ADs or conversations with MDs to further guide end of life care, if family was not available. When probed on this, most participants verbalized that having a written AD or discussing medical care wishes with MDs was probably useful, even though they themselves had not done it.
A distinction between the non-ESRD group and ESRD group, was the level of involvement of family in EOL decision-making. Among the non-ESRD participants, many wanted family present during EOL discussions, but expressed a desire for making their own medical decisions when possible. “It’s always better if you don’t have to leave the hard decisions up to them.” Several participants even knew that there were ways to document preferences for EOL care. “There is a lot of information out there, and a form called five wishes, and you can indicate what you want and it prevents your family from having to make those decisions.”
In contrast, the ESRD participants saw procedural interventions as immediate events that cannot, and should not be planned for, even if they had already experienced a severe life-threatening hospitalization. One participant shared “when I got sick and they had to intubate me, it was so sudden and I didn’t have time to even think about it. So you never know when it’s going to happen to you so why even plan for it?” ESRD participants more often expressed that they believed their children (less often their spouses), would and should be responsible for making those decisions. Knowledge about written ADs among ESRD patients was secondary to their inherent exposure to healthcare settings due to their disease. One ESRD patient stated, “I did fill that form out…they told me I had to fill it out if I wanted to be on dialysis, but before that I didn’t even know about it.”
Both ESRD and non-ESRD participants used spirituality and religion in determining when life-sustaining procedures should be stopped. Often these difficult discussions included the guidance of a spiritual or religious leader. A non-ESRD participant stated, “Father [name] told me, if [patient name] was still with life, he would tell you himself, ‘let me go, I am suffering too much.’ It would have been wrong to keep him going.” Several ESRD participants stated that “you cannot go against what God has already decided. God was ultimately the one who decided when your life was over.” A Non-ESRD participant added “If God thinks it is their time, then none of what you do will help…you will only make them suffer.”
Level of trust in physicians and autonomy in decision-making
An apparent distinction between ESRD and non-ESRD participants was the trust they had in their physicians. Among the non-ESRD group participants, there was a general agreement that one should not take physicians advice at face value. One non-ESRD participant shared “a doctor told me there was no hope for me, but then the cardiologist came and said he would send me to a specialist who could heal me so I went there.” Several non-ESRD participants expressed frank mistrust of physicians and wondered if they were not guided by alternative [monetary] motives “I’m not saying all of them, but some physicians are like vultures, just waiting until you get sick so they can take and take.” Another ESRD participant shared of someone he knew, “the man no longer spoke, and was no longer conscious of himself and I asked why, why they had him on life support, and you know why? It was so they can keep billing.” Others in the non-ESRD group stated that when they did not receive enough information, or conflicting information from different physicians, they were more likely to keep interventions going on longer. A participant shared that a doctor “didn’t really give me options. He didn’t explain well. He said he had to put the feeding tube [G-Tube], or he would die in 4 days. I had no idea what to do and I looked to God, I was alone without my children so I said “Go ahead and put it!” And he lasted six months after that.” In contrast patients who received a consistent message from the entire team of physicians felt comfortable in withdrawing care.
In general, ESRD group participants appeared to have a more trusting relationship with their physician. “They saved my life once, so they know what they are talking about. We just do whatever the doctor says is best.” When asked about intensive procedures, they generally took a more passive role, looking to their physician for answers rather than asking questions. “They didn’t ask me if I wanted hemodialysis or peritoneal dialysis, they just said this one was better because I was having too many infections on my arm with the other one.” PD patients appeared to have a particularly trusting relationship with their physician. As one person stated, “I trust him because he told me about the process and what it did to my body, and that eventually I was going to need a transplant. No one else had told me all the options and now I’m definitely going to try to get on that list!” Additionally, HD and PD patients were much more inclined to let doctors decide treatment at EOL as they felt they did not have enough knowledge to contribute to the decision-making. One participant shared that his “doctor decided that it was time for dialysis, they said it was that or I would die, so I went with that.” Another PD ESRD participant stated, “When my son in law was beat up, he was practically dead. His brain didn’t work. They kept him alive on the machine. My daughter just figured that the doctors thought he just needed more time on the machine. Then after a long time, they told her it was time to take him off. I guess it didn’t work.”
Among non-ESRD and ESRD participants, there was a common perception regarding Cardio Pulmonary Resuscitation (CPR). CPR was thought of as a “duty” that physicians must carry out. A non-ESRD participant said, “They at least have to try the chest compressions. That’s part of their job so it’s not really up to us.” An ESRD participant stated “Well, they have to do that because if they don’t they’ll get sued. People will say that they didn’t try their best to save them.”