Experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life

Figures & data

Table I. Summary of the participants.

Subject	Age group (years)	Elderly person (age at the time of death, years)	Place of treatment (at the time of death) Causes of death	Dementia (communication)	Written instructions regarding medical care	Accepted medical care Rejected medical care
A	70–79	Mother (102)	At home (At home) Heart failure	Yes (Difficult)	Unknown	Intravenous nutrition Subcutaneous infusion Oral administration treatment Gastric feeding
B	60–69	Mother (91)	Nursing home (hospital) Infectious disease	Yes (Difficult)	Unknown	Fracture surgery Intravenous nutrition Intravenous Hyperalimentation Gastric feeding Respirator
C	60–69	Mother-in-law (86)	Special elderly nursing home (Special elderly nursing home) Pneumonia	Yes (Difficult)	Unknown	Gastric feeding Intravenous Hyperalimentation
D	60–69	Mother (91)	Nursing home (Psychiatric hospital) Heart failure	Yes (Difficult)	Written will	Changing battery of pacemaker Fracture surgery Intravenous nutrition Intravenous Hyperalimentation Gastric feeding

Table II. Experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life.

Category	Subcategory
Life-prolonging treatment viewed as an action that deprives the parent of pleasure and joy	Prolong the pain of the parent Artificial hydration and nutrition will not restore the parent’s health Life-prolonging treatment deprives the parent of pleasure and humanity Meaning of life is the ability to consume food
Knowledge of the limit of care that can be provided by family	Never-ending care Home health care aggravates dementia symptom Motherly qualities were lost to dementia
Satisfaction with sufficiently provided care	Wish to obtain satisfaction from medical care Spent the entire life with the parent I was the only sibling who cared about the parent
Acceptance that death cannot be avoided	Parent continually weakening Awareness that death is imminent Understand recovery is impossible
Limited possibility of recovery conveyed by the physicians	Oral intake is impossible Impossible to continue parenteral nutrition Gastric feeding and central vein feeding are essential for life support
Limits of recovery revised by the physicians	Regarding mobility following bone fracture surgery Possibility of recovery is not 0% Consciousness is maintained with a respirator
Acceptance of medical care that is not life-prolonging	Provide treatment to revive swallowing function Provide artificial hydration and nutrition through methods other than gastric feeding
The meaning of “natural death” was revised by the physicians	Not providing treatment will cause the parent to starve Not providing treatment will cause the parent to experience pain Physicians stress the pain of the parent Physicians blame caregivers for not accepting that death is imminent Resuscitation is attempted following a sudden change in the parent’s condition until the family arrives
Refusal of treatment led to ejection from medical facilities	The parent can enter the facilities if artificial hydration and nutrition is administered Facility admission was denied unless curative treatment was attempted Hospitalization cannot continue without accepting treatment
Request support regarding the decision to accept life-prolonging care	Learn the burden or risk to the parent based on the literature and discussions with people close to the parent Confirm the desire of the parent from a written will or other information People close to the parent convey their beliefs that the parent would refuse life-prolonging treatment
Acceptance of death	Do not introduce new medical care even when the condition changes Spend time together to ensure a peaceful death Accepting that death is imminent
Affirming the decision to forgo life-prolonging treatment	“Natural death” was painless for the parent Refused further treatment suggested by physicians Respected the humanity of the parent