Self-reported enablers of and barriers to preparedness to be a substitute decision-maker
| Theme | Subtheme | Representative quotation |
|---|---|---|
| Real-life experience | Difficulty 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-making | Understanding 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 SDM | Understanding 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/family | Fear 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 SDM | Maturity, 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 team | Need 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 SDM | Social 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) |
| Fears | Fear 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.