Table 3

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*Quotationsn (%)
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 unclear63 (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.”
6 (4.2)
Impact on others, helping others“Impact on others.”
“Helping people.”
5 (3.5)
“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)
“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 unclear44 (31.0)
Type of support (if any) accessed to help you with your decision
None“No help or support.”
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 unclear43 (30.3)
  • *Multiple codes were permitted.

  • ACP, advance care planning; DNR, do-not-resuscitate order; SDM, substitute decision-maker.