Table 3:

Self-reported enablers of and barriers to preparedness to be a substitute decision-maker

ThemeSubthemeRepresentative quotation
Real-life experienceDifficulty in knowing how to prepare oneself“My mother had advanced dementia. When [she died], we did not know what to expect. We wanted her to be comfortable, but she didn’t look comfortable [when she died]. If we had known how difficult it would be to watch [cardiopulmonary resuscitation], we would have stopped. [We need] more guidelines on how to prepare oneself. What questions to ask a parent. We thought we were prepared and we weren’t. ... We really didn’t know what questions to ask.” (62 yr-old woman [describing her experience with changing the code status of her parent from Do not resuscitate to full code as she died])
Information necessary for decision-makingUnderstanding preexisting wishes through such means as conversation, living wills“I watched my dad go through this with my grandfather and he had Alzheimer’s, but they had discussed this sort of things beforehand, so it made things a lot easier on him because he already knew what my grandfather wanted and how to handle the situation.” (31-yr-old man)
Understanding role of SDMUnderstanding capacity and SDM legislation
Clarity regarding who legal SDM is Voluntary nature of being SDM
No secondary gain
“Need to have legal rights [explained], especially if you were to come [to] odds with the medical team.” (47-yr-old man) “It’s not clear what we expect from the SDM — it’s important to know and understand the different options that are available to help guide the SDM.” (66-yr-old man)
Relationships among SDM/patient/familyFear of family conflict and social pressures
Family consensus
“We [made] some bad decisions for my mother trying to keep some of my siblings happy. … Experience is a huge factor in empathy and understanding, and differentiating between what a loved one is saying and what [he or she] needs.” (62-yr-old woman)
Attributes of SDMMaturity, strong value system
Willingness to separate personal and loved one’s values
Previous life experience
Ability to act rationally despite distress of situation
“[You] need to be a good listener so you can understand the situation, need to be considerate of what the loved one would want, need to be rational and not too emotional.” (42-yr-old woman)
Relationship with medical teamNeed for clear communication of medical information: prognosis regarding quality of life; risks, benefits and alternatives of treatments Trusting relationship with medical team“My mother didn’t have a [power of attorney] in place before getting sick and I was the SDM, but the health care team treated me as if they didn’t think I had a right to be making decisions, so this made it very difficult. I had to advocate on her behalf to the medical team.” (64-yr-old woman, health care professional)
External influences on SDMSocial and cultural barriers to communication
Need for time and quiet setting
Previous training
“I am more open than the rest of my family to having conversations about end of life. Every time I try to initiate conversations about their wishes, they stop me. They are not open to discussing these kinds of things.” (51-yr-old woman)
FearsFear of guilt after decision
High stakes/burden of responsibility
“[Barriers include the] uncertainty of you making the final decision for someone else … [and the] responsibility of living with that decision for the rest of your life. (40-yr-old man)
  • Note: SDM = substitute decision-maker.