Parents' views on medical decisions related to life and death for their ageing child with profound intellectual and multiple disabilities: A qualitative study.

Kasper and her team talked with 14 Dutch parents who have adult sons or daughters with profound intellectual and multiple disabilities (PIMD).

All of the adults were over 40, lived in full-time care, and had no speech.

The parents were asked open questions about life-prolonging treatments such as hospital care, feeding tubes, or resuscitation.

Parents split into two camps. Some wanted every possible medical treatment so their child could live as long as possible.

Others felt extra surgery or tubes would only add pain. They were open to letting nature take its course or even shortening life.

Every parent wanted doctors to treat them as the expert on their child's quality of life and to respect their choice either way.

Schertz et al. (2016) reviewed nine studies and saw the same wish: parents of younger children with severe disabilities also want an active say in end-of-life talks. Kasper moves that finding into the adult years.

Williams et al. (2021) show that most state service plans lack clear end-of-life sections. The new parent voices give you real-life wording you can drop into those blank spaces.

Sandler (2009) tells of an adult whose feeding tube was refused on 'quality-of-life' grounds, then the person ate by mouth and lived. That case warns doctors not to judge. Kasper's parents, however, judge for themselves and sometimes choose to let go. The difference is who makes the value call—professional vs. parent.

If you write behavior plans, medical protocols, or attend ISP meetings for aging adults with PIMD, invite parents to the table early. Ask them to describe what 'a good day' looks like for their son or daughter. Use their words to craft medical and comfort-care instructions before a crisis hits. This simple step honors their expertise and can spare the team from last-minute ethical fights.