QUALITY: A Good Beginning for Better Endings

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. 

The concurrent care model, says Jon Keyserling, vice president of public policy and communication at the National Hospice and Palliative Care Organization, "lets you meet patients where they are."  The NHPCO and other trade and advocacy groups have a longer list of programs they'd like tested, but Keyserling noted that legislation can be monumental or incremental -- and in some ways, health reform  2009 is both. The sweep of the whole bill is monumental; some components are incremental. But they are a start, and they can be built upon.

The House and/or the  two Senate bills do include numerous provisions that have the potential to improve care for seriously ill people (and even nibble around the edge of the long-term care crisis -- which isn't addressed head-on by the current health reform bills). This post is long enough, so we won't go into detail here. But the bills include things like advanced medical homes for people with chronic disease, iniatives to reduce hospital readmissions, bundled payments, transitional care benefits (paying hospitals to do a better job of moving a patient from one care setting to another), assorted quality measurements, pilot programs to improve home-based (as opposed to institutional) care, even a new research initiative on undertreatment of pain. All these steps, whether they survive in a final bill this year or become part of the "building on" agenda for the future, mean paying attention to, and talking about, and doing something about, the needs of the old, the frail, the seriously ill and the vulnerable among us. Our grandparents. Our parents. And someday, ourselves. It's the one thing we all have in common.