Content and example quotations for types of SDM decisions made, most challenging aspects of these decisions and support accessed to support them with their decision (n=142)
| Content* | Quotations | n (%) |
| Type of medical decisions made | ||
| Routine treatment and care (eg, dentist, diet, medications) | “If that person needs dental treatment or not.” “Doctor, dentist.” | 22 (15.5) |
| End-of-life care decisions (eg, to withdraw or continue treatment, to administer resuscitation, chemotherapy, a feeding tube or antibiotics, to adopt a conservative pathway, follow ACP documentation) | “To make decisions regarding end of life care and treatment.” “Life support.” “The decision to allow (my husband) to pass away in the nursing home.” | 18 (12.7) |
| To continue with/decide course of treatment | “Continuation of treatment.” “Course of treatment.” | 9 (6.3) |
| Surgery/operations | “Liver transplant.” “About the surgery they need to undergo immediately.” | 8 (5.6) |
| Hospitalisation | “About hospitalizing a family member.” “Deciding to take the person to hospital.” | 8 (5.6) |
| Future treatment and care in the event of a deterioration | “What to do if suffers heart attack.” “d n r.” | 7 (4.9) |
| Transfer to aged care facility | “Dementia putting my father into a nursing home for care.” “Moving into aged care facility.” | 4 (2.8) |
| Acute medical problem (eg, cancer, stroke) | “Treatment of a stroke.” “Ongoing cancer treatment.” | 4 (2.8) |
| Choosing a healthcare provider or medical insurance | “Buy medical insurance.” “Medical provider to choose one.” | 3 (2.1) |
| Medical tests and assessments | “My mother had dementia. Took her to the doctor to have her assessed.” | 2 (1.4) |
| Respite care | “Respite care.” | 2 (1.4) |
| Not specified or unclear | 63 (44.4) | |
| The most challenging aspects of making these decisions (if any) | ||
| No challenges | “None.” “No challenge quite straight forward.” | 31 (21.8) |
| Knowing what decision to make and making the best/most correct decision (eg, is what the person would have wanted, if preferences misaligned with person or others, not having medical knowledge) | “Just deciding which way to go.” “Being certain that the person really agreed with DNR.” | 25 (17.6) |
| Decision about end of life | “Having a parent who chose no treatment and preferred to die in pain.” “Knowing that she would die.” | 9 (6.3) |
| Family | “Waiting for the rest of family.” “Siblings.” | 6 (4.2) |
| Impact on others, helping others | “Impact on others.” “Helping people.” | 5 (3.5) |
| Emotions | “Grief.” “The burden of guilt even though I was sure I was meeting their wishes.” | 4 (2.8) |
| Financial issues | “Money effect.” “Financial crisis.” | 4 (2.8) |
| Government/paperwork | “Government.” “Dealing with bureaucrats.” | 3 (2.1) |
| Own health | “My health.” | 3 (2.1) |
| Being responsible for someone else | “Taking responsibility for someone else.” | 2 (1.4) |
| Struggling to help the person | "Watching her getting more and more frustrated at being denied the right to a dignified death at a time of her own choosing.” “Trying to keep my Friend comfortable and pain free.” | 2 (1.4) |
| Not specified or unclear | 44 (31.0) | |
| Type of support (if any) accessed to help you with your decision | ||
| None | “No help or support.” “None.” | 33 (23.2) |
| Doctors (medical staff) | “Medical professionals.” “Specialist doctor.” | 30 (21.1) |
| Family or friends | “Sibling.” “Other family members.” | 22 (15.5) |
| Other healthcare professionals and services (eg, hospitals, palliative care, aged care assessment team, social workers) | “Pharmacist, social worker.” “Nursing staff.” | 16 (11.3) |
| Support not needed | “Luckily I didn’t have to make that call because after 7 weeks he was allowed home thank goodness.” | 2 (1.4) |
| Counselling or support groups | “A support group.” | 3 (2.1) |
| Internet | “Internet.” | 2 (1.4) |
| Religion | “None other than prayer.” | 1 (0.7) |
| Not specified or unclear | 43 (30.3) | |
*Multiple codes were permitted.
ACP, advance care planning; DNR, do-not-resuscitate order; SDM, substitute decision-maker.