Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination

Very complete...

https://diigo.com/0bpwij

National Council on Disability, March 22, 2018

The National Council on Disability (NCD) is pleased to submit its report, Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities, which provides a comprehensive review of guardianship against the
backdrop of the civil rights advancements of individuals with disabilities in the past several decades. While people with a variety of disabilities may face guardianship, the burgeoning aging population in America has forced issues surrounding guardianship to the fore in national media coverage and policy debates in recent years, making NCD’s report a timely contribution to policy discussions.

The Beyond Guardianship report explains how guardianship law has evolved, explores due process and other concerns with guardianships, offers an overview of alternatives to guardianship, and identifies areas for further study. The report includes a review of existing scholarship on the topic as well as the results of a qualitative study of individuals with experience in guardianship and its alternatives, and offers major findings and recommendations to Congress, the Administration, and to state and local government. 


Caring for the Sickest Patients: A Calling and an Opportunity

https://goo.gl/g1viHd

Don't give up on the sickest patients -- your organization can make a difference, Alan Cohn, MD, said here at Thomas Jefferson University's annual Population Health Colloquium.

"Don't give up. You can have an impact. But it takes creating real trust," Cohn, president and CEO of AbsoluteCARE of Singer Island, Florida, a healthcare company focused on medically complex patients, said Tuesday.

Cohn's firm was one of several presenters at a session on companies that are disrupting the way patients are provided with primary care. Much of the discussion centered on the importance of providing ancillary services, such as transportation, food, and temporary housing, to help patients get their life -- and their health -- back on track.

"If you want to make the biggest difference, the first thing you'd do to lower hospitalizations and deliver care is give access to primary care," said Griffin Myers, MD, co-founder and chief medical officer of Oak Street Health in Chicago. Oak Street currently runs 25 primary care centers in six markets nationwide, serving 42,000 patients, of which half are "dual eligibles" on both Medicare and Medicaid and 25% are in Medicare Advantage. The company's model is to go into communities where there is little primary care access, build a brick-and-mortar health clinic, and ensure that the clinic meets strict quality-of-care criteria.

Unlike many other primary care offices, however, "we don't do fee-for-service medicine," said Myers. "We are fully capitated for [Medicare parts] A, B, and D across all of the 11 health plans that we work with ... The way we cover the costs of all the ancillary services [we provide] is through taking full risk, investing up front, and keeping people happy, healthy, and out of the hospital."

"We take care of a really sick population ... The big opportunity is addressing health disparities and social determinants of health," he added. "One man's health disparity is another's opportunity."

So far, that model seems to be working: 

What happens when a patient says, 'Doc, help me die'

https://goo.gl/NdnRz7

My response came in parts over my days with him. First, I explained that, as his physician, I wanted to be with him through the dying process. I told him that I considered us to be in a mutual covenant. We both had a degree of autonomy that had to be respected, but I would never intentionally harm him. "Paul, our covenant includes my limiting your suffering," I said. "You are the best judge of when you need more meds for pain, anxiety and breathing. All of us will work day and night to end your distress, but we won't deliberately end your life."

With our eyes locked, Paul gave his instruction: "Just don't abandon me." And we sat there, as partners.

"I want my music. Can you get me the soundtrack for 'Lord of the Rings'?" Within minutes we had the songs playing in his room, and his demeanor changed from desolate to alert and engaged. "I love music. It's always been a motivator, but now ... I don't know." He shifted in his bed. "My goals are gone."

Nietzsche's words came to my mind, "He who has a 'why' to live can bear almost any 'how.'"

'The solution is assisted life': Offered death, terminally ill Ont. man files lawsuit

https://goo.gl/8ofv8p

A landmark lawsuit has been filed by an Ontario man suffering from an incurable neurological disease. He alleges that health officials will not provide him with an assisted home care team of his choosing, instead offering, among other things, medically assisted death.

“My condition is grievous and irremediable,” 42-year-old Roger Foley said from his bed at the London Health Science Centre’s Victoria Hospital in a video that was recently posted online. “But the solution is assisted life with self-directed funding.”

According to Foley, a government-selected home care provider had previously left him in ill health with injuries and food poisoning. Unwilling to continue living at home with the help of that home care provider, and eager to leave the London hospital where he’s been cloistered for two years, Foley is suing the hospital, several health agencies and the attorneys general of Ontario and Canada in the hopes of being given the opportunity to set up a health care team to help him live at home again -- a request he claims he has previously been denied. 

“I have no desire to take up a valuable hospital bed,” Foley explained. “But at this point, it’s my only option.”

Foley suffers from cerebellar ataxia, a brain disorder that limits his ability to move his arms and legs. The condition leaves him unable to perform mundane tasks on his own, like feeding himself. He also has trouble holding himself upright. Because of the condition, he even has difficulty speaking.

Because Foley suffers from a terminal and incurable disorder, he qualifies for medically assisted death. But Foley does not want to die -- he simply wants to live at home.

According to Foley’s lawsuit, which was filed on Feb. 14, the South West Local Health Integration Network (SW LHIN) -- the government-funded organization that facilitated his home care -- left him even worse off.