04 May âDiagnosis of dyingâ: How one manâs tumor exposes dee…
The diagnosis felt like a death sentence.
Pam Dahl had just driven four hours to visit her adult son, Derrick, at the southern Oregon group home where he received round-the-clock care. A gaunt man with dark hair and blue eyes, Derrick Dahl, 35, was diagnosed in childhood with developmental disabilities that leave him largely unable to communicate.
During the March 2018 visit, Dahlâs mother recalls a caregiver saying in passing that her son had been diagnosed with a dangerous tumor.
Pam Dahl was shocked. She pressed for more information.
She remembered the caregiver saying her sonâs tumor was discovered almost six months earlier but doctors thought surgery would be risky. Pam Dahl said she was told that the tumor could be deadly if left untreated. Doctors hadnât scheduled Dahl for an operation.
Successfully pushing for a fresh examination of her sonâs case led to another shock. A cancer specialist gave her hope Dahlâs tumor could be treated. She talked to a Portland doctor who was able to remove a baseball-size mass from Dahl during a November surgery.
âSomebody, somewhere, should have said, âYou need to get a second opinion,ââ Pam Dahl said of the care her son received. âYouâve just given this person a diagnosis of dying.â
Her effort to help her son highlights holes in a state safety net meant to protect vulnerable Oregonians who cannot advocate for themselves. It provides a cautionary tale for any family that lacks legal guardianship of a loved one who, because of a developmental disability, cannot make medical decisions.
The Oregonian/OregonLive spent six months investigating Derrick Dahlâs case to pinpoint why he didnât see a cancer specialist until his mother stepped in. The newsroom reviewed more than 3,000 pages of medical documents, business filings, licensing records and state rules for appointing health care decision-makers for adults with developmental disabilities.
The investigation uncovered such profound flaws in the system that state officials scrambled to fill gaps as the newsroomâs inquiry was underway, writing new legislation in March to formally endorse the process for the first time.
Among the newsroomâs findings:
- Oregonâs rules to protect individuals with developmental disabilities are on shaky legal ground. Lawmakers never told the Department of Human Services how people should be appointed to make medical decisions for vulnerable adults like Dahl, or what qualifications are needed to fill that role. The agency is now asking the Legislature to ratify its existing practices. But the stateâs omission could leave it vulnerable to lawsuits from families who believe bad decisions were made.
- The department canât quantify how many Oregonians lack a voice in their own health care. The Department of Human Services doesnât track when medical decision-making is delegated because officials donât want to collect the paperwork centrally. The Legislature approved money for a computer system six years ago, but officials spent it on other needs. Data is now managed across Oregonâs 36 counties through a hodgepodge of spreadsheets and sticky notes.
- Family members can be left in the dark. The person listed as Dahlâs appointed decision-maker as of December wouldnât allow state or hospital officials to release his medical records to his mother. That decision-maker, like her predecessor, is a former employee of the nonprofit that manages the Medford group home where Dahl lives.
- Other potential conflicts of interest exist. Alternative Services-Oregon, the group homeâs operator, has employed or contracted with five people who are part of the executive directorâs family, including one identified in records as helping make decisions for Dahl. Board members own and earn lease payments from some Alternative Services homes in Oregon where people with developmental disabilities live.
The Alternative Services employment and rental arrangements are legal, and the nonprofit says interested parties were not involved in approving them. There is no evidence the family member involved in Dahlâs care approached the role differently than other decision-makers.
The Department of Human Services defended the stateâs track record of care while acknowledging room for improvement.
Lilia Teninty, director of Oregonâs Office of Developmental Disabilities Services, would not answer questions about Dahlâs case, citing his right to privacy. But she pointed to a recent study by national advocacy groups ranking Oregon the second-best state in America for serving individuals with developmental disabilities.
âI believe Oregonâs system is better than other statesâ systems,â Teninty said.
State officials similarly believe their process for appointing decision-makers is appropriate under current law. But prompted by the newsroomâs inquiries, Tenintyâs office is pushing Senate Bill 1039 to âstrengthen the statutory languageâ for making appointments within a system established two decades ago.
The legislation doesnât create any new qualifications for medical decision-makers, nor does it say how much independent medical expertise should be enlisted in cases like Dahlâs. In fact, while the bill for the most part is a carbon copy of department rules, it removes any direct mention of a second opinion as a factor for decision-makers to consider in weighing a major medical procedure.
People with developmental disabilities are more likely than others to face significant physical ailments, according to a federal report. They also face bigger barriers to receiving preventative care and…