More on how The House and Senate Bills are “Ambitious”: “Not Perfect—but Ambitious”

Over at the New America Foundation, blogger Joanne Kenen elaborates on how the House and Senate Finance bills can lead to providing better end-of-life care.  As As Kenen points out, these proposals are all about giving people choices—including the parents of children who are seriously ill. Finally, these proposals would reduce health care costs by making sure that people who don’t want to die in an ICU don’t wind up there by default.

“After all the sound and fury of last August, we're pleasantly surprised that the right hasn't risen again with all sorts of horror stories about the resurrection, so to speak, of the "death panels." Maybe because all that fear-mongering was finally discredited. Maybe we are finally getting just a little bit smarter.
The inevitable focus on the politics of health reform, and the disproportionate amount of attention paid to the public plan, sometimes obscures the many ways that the House and the Senate health plans are ambitious. Not perfect. Ambitious. I've heard experts, people I like and respect, say the legislation does "nothing" to advance the cause of quality of end of life care in America. They are wrong. The House and Senate bill each contain measures that would advance that cause — not fix it completely, far from it, but they will take us important steps in the right direction. It's too soon to know which of these measures – if any — will survive a final melding of House and Senate legislation. But let's look at them here because, except for the end of life consults which got way too much of the wrong kind of attention, they haven't gotten adequate attention. In an accompanying guest post. Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center in New Hampshire, talks about what these changes can mean for his patients and their families.

“One of the most damaging myths, or at least misunderstandings, in what passes for our national discourse about health policy is that our culture (and too often our doctors) have trouble talking about end of life care. And when we do talk about it, we don't always know what we're talking about. That confusion in turn fueled the "death panel" chaos  of last summer.

“An advanced directive — whether a "living will," a health care proxy or a Physician Order for Life Sustaining Treatment — does not mean "pull the plug." It does not constitute a license for rationing. It does not obligate you to "give up." It is not irrevocable.

An advanced directive is a tool. Properly used, it is a tool that helps you decide how you want to live out your final days, weeks or maybe even months. It is a tool that helps your doctors know what your wishes are so they can respect them. It is a tool that lets your family know what you want, so they too can respect your values and wishes, and avoid the anguished second-guessing and potential family conflict that ensues when people don't know or can't agree on what is best for an incapacitated loved one. If you want aggressive high tech care, a ventilator and a feeding tube and all that is offered in an advanced ICU, you can state that. If you want a DNR you can state that. And if you want something in between those options, you can say that too. (And we do so wish that the move to change the terminology eventually catches on, so that instead of Do Not Resuscitate, or DNR,  we talk about  Allow a Natural Death, or AND).

“The House kept in its bill the VOLUNTARY advanced directive consult provision.(The word VOLUNTARY appears at least five times.)  Basically, this means that Medicare will reimburse doctors for taking the time to talk to an elderly patient about what he or she may face medically and how he or she wants to confront it. Right now, there are all sorts of built-in disincentives — cultural, emotional, legal and yes financial – against having that conversation. The incentives lie in the other direction: Doctors, and ERS and ICUs are all reimbursed for giving you the aggressive care, and aggressive care is often the default form of care. Maybe our system should make sure you want it.

“In addition, the House bill (Section 240)  requires health plans in the new insurance exchanges make available to beneficiaries information about end of life planning and the option (Repeat after me: The Option. Not the requirement. The Option) to complete an advance directive or, in accordance with state law, a Physician-Order for Life-Sustaining Treatment (Not Life Terminating Treatment. You can repeat that a few times too.) The bill explicitly states this "shall not promote suicide, assisted suicide, euthanasia, or mercy killing." It also explicitly states that the provision "shall not presume the withdrawal of treatment and shall include end-of-life of life planning information that includes options to maintain all or most medical interventions."

“The Senate left that out of the Finance bill. But the Senate bill does incorporate some — not all — of what's been on the wish list of hospice and palliative care doctors and nurses and social workers and chaplains for years. For instance, a number of states have been individually seeking Medicaid waivers so that seriously ill children can get hospice for 12 months instead of six — and that they can also get concurrent, curative care. In other words, as a parent, you don't have to choose between say, chemotherapy, and all the support and symptom management and family assistance of hospice. The Finance bill would wipe out that lengthy, cumbersome, bureaucrat, financially-restrictive waiver process. All seriously ill children in Medicaid in any state could get concurrent curative and hospice care. It isn't that expensive, and it is so badly needed.

“And it's not only kids who benefit. The Finance bill sets up a 26-site hospice concurrent care demonstration project in Medicare, so adults too in these test programs can have both curative and hospice care. Some earlier tests and research suggests that this isn't just going to improve the quality of care for people with advanced and life-threatening illnesses, it's actually cost effective.  Given a better and gentler continuum of care, without having to make the stark either/or choice of hospice, people often end up gradually shifting the balance as their disease progresses. It is their choice. But their choice is often less aggressive care toward the end.”

To read the rest of Kenen’s post, click here

7 thoughts on “More on how The House and Senate Bills are “Ambitious”: “Not Perfect—but Ambitious”

  1. Maggie- As you know I personally believe that end-of-life/death and dying is THE issue of greatest importance.
    But your blog piece title did not have the concept in it?
    My language is “Every American citizen deserves as dignified and as a pain free a death that modern bio-medicine can possibly provide”-ral
    Blatant profiteering off the dying borders on being sinful
    But patient and family choice is essential!
    Thanks,
    Dr.Rick Lippin
    Southampton,Pa

  2. Dr. Rick–
    I didn’t put “death and end-of life” in the title because I wanted as many people as possible to read the post.
    Like you, I think these issues are paramount. But I also know that many people turn away when they see those phrases. . ..
    Rick, people like you and I would be drawn to a post that included “end-of-life” in the headline. But I want to preach to the unconverted. (That’s why I worked at Barron’s)
    Also, Joanne’s larger theme fit into the larger theme that I have recently been developing on HealthBeat:
    The current legislation is far fom perfect–but we should support it.
    And then help to improive it over the next 3 years.

  3. I understand Maggie- And I thought of you and your significant contribution to thr entire reform issue late Sat night as I watched the House vote live
    Be Well
    Dr. Rick Lippin
    Southampton,Pa

  4. A gullible conservative friend just forwarded another scare email from Humanevents.com that doesn’t use the “death panels” catchterm, but still is trying to stir uprage (and stimulate donations) with scary words about advance directives. I’m concerned that this could turn into heavy political pressure to keep hearts pumping and lungs inflating at any expense if these people ever get enough influence.

  5. Harry & Jan
    Harry–
    “Gullible” is definitely the audience that fear-mongering conservativs are trying to reach.
    Jan– Than you much for the better link.

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