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Seeing the Person in Advanced Illness: Two Current Federal Opportunities

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By Anne Montgomery

In late July 2016, my friend Dan sent an email around to friends and colleagues. The subject line was “Uncomfortable news.” Opening it, we read about his diagnosis of metastatic pancreatic cancer. Gently telling us there was no effective treatment and that he would not be seeking any, he said: “I will of course be grateful if it happens that I am way out on the tail of the prognostic bell curve. But I cannot plan on that basis, nor do I want to waste energy on hoping the obvious will not in fact occur. I do have hope. It is hope to use well the time I still have.”
Dan did just that, living for several more weeks and leaving a record of accomplishments, passions, and a capstone legacy of hope and inspiration recorded in a videotaped tale of health policy, clinical practice, and reflections on a life well lived. During this period, he had plenty of support – no more and no less than he wanted.

Living meaningfully in the presence of serious and advanced illness requires caring companionship and support from family and friends, and attentive services from professionals. The duration may be relatively brief, or it may extend for years. Making this period meaningful and affirming for each individual means basing care on person-centered practices, which can guide all involved supporters: medical and social services practitioners, family and friends. Overall, a person’s particular desires and preferences are at the forefront, rather than the more conventional and generic goals of cure and rehabilitation. It is good news that this approach is reflected in a set of succinct “Draft Principles for a Person-Centered Approach to Serious or Advanced illness,” announced in March by the Administration for Community Living (ACL).

Among the principles are these:

  • “Decision-making and advanced planning should occur as early in the disease process as possible, especially for people with progressive illnesses like dementia or ALS, which can make clear expression of choices increasingly difficult during the course of an illness;
  • Supported decision-making principles and practices should guide those who are helping individuals who need assistance with planning and decision-making. Individual goals, decisions, and known views should take priority;
  • Person-centered planning principles and practices should guide health and long-term services and supports (LTSS) planning and provision;
  • People have a responsibility to document and communicate with loved ones and health and LTSS providers about their goals and decisions. All parties should respect these goals and decisions. Since circumstances may change over time, there should be regular opportunities to update planning and communicate goals and decisions.”

These are sound goals and we encourage you to be in touch with ACL to thank them for the effort. You can also suggest some improvements for the final version or for the future.

Yet the policy question remains: How do we translate them into real-world practice, and make them part of programs such as Medicaid and Medicare? Currently, person-centeredness is frequently mentioned in the context of quality measures, but it is infrequently discussed in terms of process and workflow. One way to think about changing this is to build person-centered principles and questions into comprehensive care plans that are designed to be longitudinal; that are based on a thorough initial assessment; and that are updated as circumstances change. The U.S. Senate has an opportunity to start moving such an agenda forward in the Medicare program as part of its consideration of pending legislation, the Creating High-Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act. Scheduled for mark up in the next several weeks, S. 870 is a thoughtful, bipartisan measure sponsored by the Finance Committee’s Chair and Ranking Member, Sen. Orrin Hatch and Sen. Ron Wyden, respectively. Senators Johnny Isakson and Mark Warner lead the panel’s Chronic Care Working Group and have personally been shaping the bill. In order to accelerate the implementation of comprehensive, longitudinal person-centered care planning, we suggest that the HHS Secretary be charged with devising appropriate incentives and standards as part of new Medicare initiatives and models, and for existing programs as they are adapted.

The timing for this is good, since as the U.S. longevity boom rolls forward, ACL notes that individuals with serious and advanced illness will “need access to services that enable them to manage their conditions and symptoms, live in the setting of their choice, and be integrated into the community.” The agency’s draft principles articulate a bold advocacy stance, calling for “individuals [to] have access to advocacy services to assist them in resolving problems with services or benefits or when their choices are not honored.” The document specifically affirms the importance of palliative and hospice care, and more generally argues for more education of providers and the public “about health conditions and disabilities, living well with advanced age and/or disability, and evidence-based information and training about how to help individuals with serious or advanced illness.”

To be realized, this far-reaching agenda will require both medical and social services providers to clearly and concisely document the health-related and broader life goals of all individuals they treat. Core components of person-centered comprehensive care plans include prognosis, personal treatment preferences and goals, and a person’s social context. This is a systems challenge that can be met with creative design and deployment of technology, along with a desire to put the pieces of a patient’s puzzle of different services and providers into an organized, searchable and interactive records system. These records need to be maintained and updated on interoperable electronic platforms.

A major asset of comprehensive longitudinal care planning, if it becomes widespread, is that it could be used to track service delivery across multiple providers working in various settings and for different programs and payers. Such care plans would also be a boon to shared decision-making processes for beneficiaries living with multiple chronic conditions and functional disabilities, and for their families. The decisions that individuals like Dan are called on to make, when they are living with serious and advanced illness, are some of the most consequential they will ever consider. To best inform and honor those decisions, we should ask our care system to use comprehensive planning protocols that include their preferences and goals, and factor these in when offering a choice of options.

We look forward to hearing your thoughts — and if you’d like to join us in urging Finance Committee members to adopt comprehensive longitudinal person-centered care planning as part of the CHRONIC Act that will be marked up at the end of May, please let us know. Better yet, contact them yourselves! Here is a list of the CHRONIC Act’s current co-sponsors – encourage them, and push the rest to join!

1 comments on “Seeing the Person in Advanced Illness: Two Current Federal Opportunities”

  1. Is there any talk of allowing family members to be paid/trained caregivers (ex. a parent caring for a disabled child on a Medicaid waiver)?


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