Palliative Care Legislation in the 114th Congress

Post written by Stacie Sinclair, MPP, Policy Manager, Center to Advance Palliative Care

Introduction
Greetings, Palliative in Practice readers! After losing track of the past few weeks trying to capture the elusive Vapareon, we finally took a break only to discover that the 114th session of Congress is rapidly coming to a close. Therefore, we thought now would be a great time to reflect on how palliative care has fared during the current session, and what this could mean for both the field and the 115th Congress.

Themes from the Legislation
Thanks to a lot of hard work and perseverance from various organizations, as well as a number of contextual factors such a rapidly aging population and more data on the cost of caring for seriously ill patients, legislators have introduced several palliative, advanced illness and end-of-life care-relevant bills (see C-TAC’s excellent Federal Legislative Summary). Some are fan favorites from previous sessions (the Care Planning Act, Palliative Care and Hospice Education and Training Act (PCHETA), Personalize Your Care Act 2.0) while others are brand new to the lineup (the Compassionate Care Act, Medicare Choices Empowerment and Protection Act, Independence at Home Act, RAISE Family Caregivers Act and Removing Barriers to Person-Centered Care). And while each bill has its own flavor, we thought it would be useful to extract some of the themes that emerge upon closer inspection:

Bill Title Quality Measures Public Awareness New Models Training/Curricula Advanced Care Planning
Care Planning Act X X X X
Compassionate Care Act X X X X X
Independence at Home Act X
Medicare Choices Empowerment and Protection Act X
Palliative Care and Hospice Education and Training Act (PCHETA) X X
Personalize Your Care Act 2.0 X X X X X
Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act X X
Removing Barriers to Person-Centered Care Act X X

 

Quality Measures. Over the past few years, the role of quality measures in health care has expanded rapidly—both for quality improvement purposes and payment determinations. Stakeholders in palliative, advanced illness and end-of-life care have lamented the dearth of relevant measures, noting that meaningful quality measures for the seriously ill population are difficult and expensive to develop. Therefore, it is unsurprising that four out of eight bills call for the specification, development, and/or testing of new quality measures:

Quality Measure Concept Specified Bill(s)
Access to needed services (medical and supportive), such as timely referral to hospice Removing Barriers
Completion of care planning documentation, such as health care proxies, advance directives, and portable treatment orders Care Planning,
Removing Barriers
Consistency of care with documented care preferences Care Planning,
Personalize Your Care 2.0,
Removing Barriers
Effectiveness, patient-centeredness, and accuracy of care plans Care Planning,
Personalize Your Care 2.0
End of life Compassionate Care
Patient and family experience of care Removing Barriers
Process of eliciting and documenting goals, preferences, and values of the patient regarding EOL care Personalize Your Care 2.0
Screening for physical symptoms, such as dyspnea, nausea, and constipation Removing Barriers
Utilization of health care and support services Removing Barriers

Public Awareness. It’s no secret that palliative care is not exactly a mainstream issue, and yet stakeholders know that the only way ensure that people receive the care they want is to demand it early. Therefore, five out of the eight bills include a public awareness component. The Care Planning, Compassionate Care and Personalize Your Care acts all include funding and/or directives to establish national campaigns on advanced care planning (ACP), including language describing the importance of ACP and the development of training modules, decision support tools and instructional materials. Meanwhile, PCHETA provides for the planning and implementation of a national education and awareness campaign to inform patients, families and health professionals about palliative care services and benefits.  On a slightly different note, the RAISE Act seeks to spotlight the needs of “informal” family caregivers, not only bringing public attention to this issue, but also requiring policymakers to explore and strategize on specific supports.

Model Development. In recent years, the recognition that fee-for-service billing does not adequately reimburse critical services provided to seriously ill patients has led to a number of proposals for new delivery and payment models. The establishment of the Center for Medicare and Medicaid Innovation (CMMI) under the Affordable Care Act has allowed for the (relatively) rapid development and testing of these models. Building on this era of model development, four bills propose pilot programs and models which include capitated or lump payments for palliative and advanced illness management services, including the provision of ACP through telemedicine consultations (Care Planning Act, Compassionate Care Act, Personalize Your Care Act 2.0); the ability to provide curative and hospice services concurrently (Personalize Your Care Act 2.0, Removing Barriers to Person-Centered Care); and waivers allowing nurse practitioners to certify patients for home care and hospice (Removing Barriers to Person-Centered Care).

The Independence at Home Act takes a more comprehensive approach to model development.  The act converts a successful CMMI demonstration program into a permanent Medicare benefit.  Independence at Home (IAH) allows home-based primary care for a  targeted to a sub-set of the Medicare population – those who have: 1. two or more chronic illnesses; 2. at least one urgent hospitalization, along with a either a skilled nursing or rehabilitation facility stay or certified home health care services; and 3. has at least two functional dependencies. There is a good deal of overlap between the IAH model – including an interdisciplinary team, coordination and accountability for all care, clarification of care preferences, and 24/7 access to medical care – and high-quality palliative care.  In fact, several existing IAH providers have noted that strong palliative care skills are required to ensure that their patients receive appropriate care and their programs meet quality targets.  It doesn’t hurt that the existing IAH providers have saved, on average, more than $3,000 per beneficiary.

Workforce Training and Curriculum Development. The historical absence of communication and patient-centered care training in medical and nursing education seems to reflect an assumption that clinicians either have the skills to care for seriously ill patients (perhaps through osmosis), or they do not. Fortunately, there is increasing recognition that these skills can be learned, and three bills propose awards and/or grants to train clinicians across disciplines in palliative medicine (PCHETA) and how to have difficult ACP conversations (Compassionate Care Act, Personalize Your Care Act 2.0).

Advance Care Planning and Associated Forms. Many stakeholders view ACP as a critical activity for ensuring that patients with serious and advanced illness receive care that is concordant with their wishes. This is reflected in the fact that several bills specify components of ACP (Care Planning Act, Compassionate Care Act); the importance of completing specific forms such as advance directives, living wills, and POLST/MOLST forms (Medicare Choices Empowerment and Protection Act, Personalize Your Care Act 2.0); and the need for portability of these forms through mechanisms such as interoperable EHRs and/or centralized registries (Care Planning Act, Compassionate Care Act, Medicare Choices Empowerment and Protection Act, Personalize Your Care Act 2.0).

In addition to the key themes across the various pieces of legislation above, there are a few notable provisions in individual bills, including proposed changes to the “Medicare & You” handbook, the development of a new accreditation for “advance directive vendors”, a call for a research strategy and the establishment of an Advisory Council on ACP.

Without casting judgment on any individual bill, we have to acknowledge that some are more developed than others in terms of specifying a target population and anticipated costs. And, perhaps unsurprisingly, euphemisms abound with references to palliative care, end-of-life care, advanced illness care, serious illness, and advanced serious illness. Yet, taken together, these bills reflect a number of policy priorities identified by key stakeholders in the field, with a relatively good mix of upstream and downstream interventions. Encouragingly, six out of eight bills also make at least some reference to the need for interdisciplinary care.

Next Steps
Without the benefit of a crystal ball, we have to go out on a limb and say that it is unlikely that a majority of these bills will become law before the 114th Congress adjourns. But do not lose faith! We can counteract our pessimism by sharing some of the more encouraging aspects of the situation:

  1. Public perception seems to be warming to the need for palliative, advanced illness and end-of-life care. At the risk of jinxing ourselves, these bills were introduced with minimal backlash—quite the contrast from the dark days of 2009.
  1. Similarly, legislators are more willing to lead and/or attach their names to this kind of legislation. Sponsors and co-sponsors for these bills include representatives from both chambers and political parties, confirming that palliative and end-of-life care are truly bipartisan issues.
  1. Several champion organizations in the field are growing increasingly sophisticated in their advocacy efforts and are well-positioned to leverage their momentum in the 115th Congress.

For these organizations, we offer a few final thoughts. First, given the overlapping themes in many of the bills introduced this session, we see an opportunity for more coordination among champions and legislators. Selecting a few key issues on which to concentrate, developing a shared vocabulary and paring the number of bills down to one or two could perhaps a) alleviate some of the confusion that is often associated with palliative, advance illness and end-of-life care and b) increase the likelihood that these bills become law. Second, there are a host of ongoing non-governmental initiatives in palliative, advanced illness and end-of-life care (e.g., the creation of the NQF Palliative and End-Of-Life Care Project and the National Academy of Medicine’s Roundtable on Quality Care for People with Serious Illness) which could serve to direct and supplement legislative efforts in the months to come. It would behoove advocates to consult these resources and recommendations – for instance, by using the measurement gaps outlined in the NQF Standing Committee report as the foundation for new measure provisions.

And with those sage pieces of advice, we wish you a happy remainder of the summer. We’ll talk to you again in a few months, assuming that we have not fallen off a mountain in search of Pikachu . . .

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