ACA provisions: "Overwhelmingly positive potential" to improve Americans' end-of-life care
Improved care, reduced costs with palliative care
The Affordable Care Act (ACA) has an "overwhelmingly positive potential" for both palliative care and end-of-life care, according to Timothy E. Quill, MD, professor of medicine, psychiatry, and medical humanities at University of Rochester (NY)'s Palliative Care Program.
"Palliative care has the potential to improve care and save money," says Quill. "It allows patients to use medicine where it's helpful for them, but potentially not use it in circumstances where they really don't benefit."
Two provisions in the ACA have highlighted the role of palliative care, says Jonathan Keyserling, JD, senior vice president of the office of health policy and counsel at the National Hospice and Palliative Care Organization in Alexandria, VA. One provision allows for concurrent care for pediatric patients covered by Medicaid and the Children's Health Insurance Program.
"This recognizes the role that palliative care can play in the dilemmas that patients and families face when they have a child with a severe illness," he says.
The second is a provision that authorized the Centers for Medicare & Medicaid Services (CMS) to undertake a demonstration project to test the notion of concurrent care for adults. "While that provision might not result in action from CMS, we think it has engendered a great deal of interest in concurrent care," says Keyserling. "A variation on that theme will probably be coming from CMMI [the Center for Medicare & Medicaid Innovation]."
First stage of reform
There is growing interest in palliative care in multiple care settings, as well as in providing palliative care earlier in a patient's diagnosis. "There is a lot of activity around recognition of the role of advanced care planning," says Keyserling. "There is a heartfelt desire among policymakers, when politics are set aside, to make sure the right care is delivered to the right patient at the right time."
The ACA did not establish palliative care as an essential health benefit that must be covered by all insurance plans; instead, this was left this up to the states to determine. "We would have loved to have seen both end-of-life care and palliative care established as an essential benefit," notes Keyserling. "Some have termed the ACA 'the first phase' of health care reform, and there are any number of steps that will follow."
There was originally a provision in the ACA that would have provided for reimbursement for a goals of care conversation, for example. While this wasn't included in the final legislation, "there is currently legislation pending in Congress that would provide for that conversation," Keyserling says.
The goals of care conversation is an important component of palliative care, he adds, since in order to meet the patient's goals, the provider has to know what those are.
"The legislation was intended to provide for that opportunity to have a meaningful and comprehensive conversation about the patient's values and goals, and then translate that into an agreed-upon plan to meet those goals," he says.
Keyserling says a consistent and clear definition of palliative care is needed. "Prior to there being a reimbursement stream, it seems prudent to have an agreed-upon set of standards," he says.
At some point, difficult decisions will need to be made as to whether marginally effective treatments will be covered for everyone. "Right now, health care reform is a little bit all over the place. It's talking about giving everybody access to everything, and is not talking about any limits," says Quill.
Palliative care can help in this conversation, says Quill, "but we don't want to be in the business of being the arbiters of who gets what."
The role palliative care plays in helping people make informed choices has significant financial implications for hospitals. "The impact of that, economically, can be huge," Quill says. "Lots of folks are getting treatments that they think are much more effective than they are. At least some of those patients, if they were told the truth, would make different decisions."
Some research has shown that palliative care, if introduced early enough, can improve quality of life, save money, and even prolong life relative to standard cancer care.1 The more difficult research is yet to be done, says Quill — that of assessing the quality of care that's being delivered.
"Standards for quality palliative care have been developed and updated, but this is not routinely being measured outside of the hospice community," says Quill. "This is an important order of business for the field."
Improved discharge planning
Americans' end-of-life choices are changing "perhaps not rapidly, but nonetheless steadily," says Mark Pfeifer, MD, senior vice president and chief medical officer at University of Louisville (KY) Hospital.
"We know more Americans are thinking ahead about their deaths. Over the last 20 years, we've gone from about one in 10 to one in three having put their future wishes in some written form," says Pfeifer. "Still, talking about death and end-of-life care remains a very uncomfortable subject in most families."
In addition, more patients are choosing aggressive treatments due to technological advances. "I believe this reflects an increased desire to take advantage of current medical science, while simultaneously having a focus on symptom relief, the place of dying, and knowing when to stop," Pfeifer says.
Hospitals' efforts to reduce length of stay and readmission rates could result in better end-of-life care. "It is possible that readmission rate pressure will lead to more definitive discharge planning with a longer horizon," says Pfeifer. "This would be a positive result, if it is truly patient-centered."
Pfeifer says the ACA will "further push coordinated care ... and that, in turn, will push goals of care discussions around end of life. Too often in acute care, we discharge a patient without discussing 'If this happens again, what do you want to do?'" Pfeifer says bioethicists can address this by:
- constantly encouraging goals of care discussions;
- reinforcing that palliative care is not hospice care, should begin at the time of a diagnosis, and does not mean the patient is "giving up."
"Our systems are built to continue curative care unless they are stopped," Pfeifer says. "Discussing goals of care in a patient-driven way can open other possibilities, including hospice and palliative care."
Too few palliative care specialists
Since reimbursement for palliative care is not sufficient to support a program or a clinical team, its cost must be supplemented by hospitals. "But a system will still save money investing in palliative care. Many progressive systems are already doing that, in a major way," says Quill. "It's a way to improve quality and take some cost out, with virtually no downside."
Most health care systems remain narrowly focused on their short-term financial survival. "But surviving by doing more of the usual care that people have been getting is not a long-term strategy," Quill says. "It's not sustainable, and it's also not good care."
While earlier involvement of palliative care is desirable, there are inadequate numbers of palliative care specialists to provide this care. "That is why the cutting edge is going to be training all clinicians who care for really sick people to do the basics of palliative care, and reserving the palliative care consults for the tougher cases," says Quill.
Palliative care involves being honest with patients and providing good pain management. "Those are skills you want every doctor caring for sick people to have," says Quill. "It's only when those good basic skills are insufficient that you might need a specialist to come in and help sort out the path."
Many palliative care consults consist of simply telling the patient the truth in a straightforward, compassionate way, so that the patient is able to make good decisions.
"You don't necessarily need a palliative care consult to do that — you need a good doctor," says Quill. "We have some skill building to do with doctors who have never been trained in this, or who have been deferring these conversations to somebody else."
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic nonsmall-cell lung cancer. N Engl J Med 2010;363:733-742.
- Jonathan Keyserling, JD, Senior Vice President, Office of Health Policy and Counsel, National Hospice and Palliative Care Organization, Alexandria, VA. Phone: Phone: (703) 837-3153. E-mail: firstname.lastname@example.org.
- Mark Pfeifer, MD, Senior Vice President/Chief Medical Officer, University of Louisville (KY) Hospital. Phone: (502) 562-4014. E-mail: email@example.com.
- Timothy E. Quill, MD, Professor of Medicine, Psychiatry and Medical Humanities, Center for Ethics, Humanities and Palliative Care, University of Rochester (NY) School of Medicine. Phone: (585) 273-1154. E-mail: firstname.lastname@example.org.