Second Opinion: How Does Obamacare Address End-of-Life Care?

Second Opinion: How Does Obamacare Address End-of-Life Care?

By John Rosman, KPBS

Sally Johnson is a British expatriate. She says American's aren't as open about death, and that translates into poor care and high costs at the end of life.

Second Opinion is a weekly Q-and-A series that answers questions from San Diegans on the Affordable Care Act. Ask yours here.

The Question: How does the Affordable Care Act deal with end-of-life planning and care?

Sally Johnson’s Mira Mesa home is decorated with paintings of the oak trees that surrounded her previous home in Northern California. In 1990, she and a good friend, Sam, left for San Diego.

During their first weeks among the palm trees, Sam was diagnosed with Parkinson’s disease. He moved in with Johnson permanently. Over time, handrails joined the paintings on her walls.

Because of her role as Sam’s caregiver, Johnson has spent a great deal of time thinking about how the U.S. health system handles care for people with late-stage illnesses. Her thoughts are further influenced by her British upbringing.

“In England, we have a much more open conversation about what happens to people throughout their lives and illness and cancer and things like that,” Johnson said. “People are better prepared than most Americans, as far as I can tell, for most end-of-life challenges.”

Video by John Rosman, KPBS

Johnson said there aren’t enough dinner-table conversations in the United States about what to do when family members and friends grow old or ill. The toll is both emotional and financial.

In 2009, 5 percent of patients – the elderly and those in critical care for chronic illnesses – accounted for half of the nation’s spending on medical care, according to the U.S. Department of Health and Human Services. Family members are often late in leveling their expectations. There’s little training for doctors to help them do so. Spending on costly life-sustaining procedures continues.

Johnson said she hopes health reform stirs a national conversation about how to do better when it comes to caring for people who are dying. Here’s her question:

I’m interested to know how the Affordable Care Act handles end-of-life situations and [treatment for] expensive chronic illnesses like dialysis and heart transplants for people over 50.

The Takeaway: Advance directives are mentioned – though, not explicitly encouraged – and there’s some help to keep the dying at home.

Obamacare did stir a substantive conversation about end-of-life care, but it didn’t make it past 2009, let alone into the final health reform law. As Congress worked on drafting the Affordable Care Act, discussions about how to deal with the dying were filed under the politicized heading “death panels.”

feature_inline-second_opinion500President Obama had wanted end-of-life counseling to stand as a separate, billable service, giving families and doctors a clear route to make decisions about when to forgo treatment. The idea was scrapped because of concern the benefit might pressure families and incentivize doctors to pull the plug.

But there is language in the final law that moves the discussion forward a bit. The Affordable Care Act’s Medicare regulation says “voluntary advance care planning” can be included in covered annual wellness appointments. The planning would involve creating an advance directive, a legal document that dictates how aggressively a patient can be treated once he or she loses the ability to make decisions.

The law also says all insurers must cover hospice, or palliative care for people within six months of dying.

In terms of strengthening in-home services, the law provides some resources:

  • It establishes an insurance policy working adults can purchase to help pay for future long-term disability care. It would pay out at least $18,250 a year that could go toward any in-home support services, including paying loved ones as caregivers.
  • It offers funding to increase the long-term care workforce.
  • It gave the state an additional $573 million in Medi-Cal funding for a three-year pilot program in eight counties, including San Diego, that gives health plans financial incentive to care for patients at home rather than in hospitals or other institutions. The program begins in 2014 and is open to patients who are dual eligible, meaning they qualify for both Medi-Cal and Medicare.

The additional Medi-Cal dollars, however, only offset recent cuts to in-home support services. And under the Affordable Care Act, Medicare must reduce its home health reimbursement rates. California recently made cuts of its own.

The Orders: Look into San Diego’s new Cal MediConnect program.

Ellen Schmeding, director of Aging and Independence Services for the county, said the pilot program that incentivizes keeping patients in their home is the biggest change San Diego is seeing right now for end-of-life care. It won’t spell drastic change for Johnson in terms of caregiver procedure or pay, but it could better coordinate care among all of Sam’s providers.

Check out last week’s Second Opinion: Does Obamacare Impact My Military Benefits?

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Voice of San Diego is a nonprofit that depends on you, our readers. Please donate to keep the service strong. Click here to find out more about our supporters and how we operate independently.


Megan Burks

Megan Burks

Megan Burks is a reporter for Speak City Heights, a media project of Voice of San Diego, KPBS, Media Arts Center and The AjA Project. You can contact her directly at meburks@kpbs.org or 619.550.5665.

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8 comments
Mark Giffin
Mark Giffin

My Mom always had a healthcare directive provided as part of her estate planning prepared by her attorney. Last year while she was in the hospital, the nursing staff had a version they wanted us to complete that was more oriented (and specific) towards what the hospital and healthcare professionals perceived as more precise criteria when it came to those types of situations. Their position was the legal form of the directive did not address the criteria of those decisions adequately.

Mark Giffin
Mark Giffin subscribermember

My Mom always had a healthcare directive provided as part of her estate planning prepared by her attorney. Last year while she was in the hospital, the nursing staff had a version they wanted us to complete that was more oriented (and specific) towards what the hospital and healthcare professionals perceived as more precise criteria when it came to those types of situations. Their position was the legal form of the directive did not address the criteria of those decisions adequately.

paradocs
paradocs

As a practicing family doctor who is very familiar with Obamacare, I would advise that the concern is miss placed. A doctor, who wants to take the initiative or respond to a patient's concerns, has always had the ability to talk to a patient and his/her family about end of life care and bill Medicare under the patient's diagnosis. The main problem is that neither system does or will pay the doctor adequately for the time and intense emotional effort needed to do this task correctly. We are better paid for giving a flu shot, a well woman exam, or counseling about not smoking. Proposed improvements in this problems were prevented by the venial propaganda about 'death panels'. It seems most of the "quality" items are highlighted because they are easy to identify and because of media madness for prevention. Yet the soul of medicine, in caring for anguish, is underpaid because it is not easily quantifiable.

Judith Swink
Judith Swink

It would be helpful to know what those differences are and whether you felt that they were improvements over the standard form.

Judith Swink
Judith Swink subscriber

It would be helpful to know what those differences are and whether you felt that they were improvements over the standard form.

Mark Giffin
Mark Giffin

Hi Judith. I don't have the specific documents (questions asked) readily available but I had given them the one prepared by her attorney. The hospice nurse had asked to speak with me at the hospital (initial shock) because she was the one doing the advanced directive program at the hospital. (Scripps) It had several more questions concerning specifics of what constitutes a "do not resuscitate" situation for hospital staff and what does not. Yes it was very helpful. I know that you can talk to Scripps about assistance on the matter (not sure of other providers). Assistance and info is typically available through their social workers. Hope that helps

Mark Giffin
Mark Giffin subscribermember

Hi Judith. I don't have the specific documents (questions asked) readily available but I had given them the one prepared by her attorney. The hospice nurse had asked to speak with me at the hospital (initial shock) because she was the one doing the advanced directive program at the hospital. (Scripps) It had several more questions concerning specifics of what constitutes a "do not resuscitate" situation for hospital staff and what does not. Yes it was very helpful. I know that you can talk to Scripps about assistance on the matter (not sure of other providers). Assistance and info is typically available through their social workers. Hope that helps