It's been 17 years since the Institute of Medicine (IOM) released their original end-of-life focused report, Approaching Death: Improving Care at the End of Life. Today (September 17, 2014), during a live-streamed event, the IOM released Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.
The 1997 Report
The 455-page Approaching Death report, which documented the state of end-of-life care, provides context for the 2014 report. I've posted my very brief summary of the "problems" and "solutions" identified in the report for those who are interested. Many of those recommendations served as catalysts for improvement in the care of the dying and seriously ill. Philanthropic organizations invested millions in developing palliative care, engaging communities at the national, state and local levels, and establishing evidence-based clinical and organizational practices.
The 2014 Report
Given the impact of the last IOM report, organizations will benefit from reading the full IOM report, or at least the Key Findings and Recommendations. I certainly haven't read the full report as yet, however here's my summary of the findings and recommendations, followed by a few initial thoughts on the implications for hospices and those advocating to improve end-of-life care.
- Recommendation 1: Delivery of Care - payers "should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life." The IOM report states that comprehensive care should include all the essential elements of quality hospice care - patient-centered, holistic, coordinated, and value-based. This recommendation also states that all health care organizations should work to ensure that "all people with advanced serious illness should have access to skilled palliative care or, when appropriate, hospice care in all settings..." That phrase - or when appropriate, hospice care - is the only specific recommendation to referral to hospice in the summary document. More on that in a bit. Recommendation 1 also calls for transparency and accountability through public reporting of quality and costs of care and that people's individual choices should be honored, including the right to decline care or services.
- Recommendation 2: Clinician–Patient Communication and Advance Care Planning - organizations should develop quality standards for advance care planning and communication, which are "measurable, actionable, and evidence based." These standards should evolve over time and be adopted by payers and health care organizations, integrating them into "assessments, care plans, and the reporting of health care quality" assessments, care plans, and the reporting of health care quality. Furthermore, payers should tie the standards to reimbursement and professional organizations to credentialing and licensing. The goal of this recommendation is to encourage everyone - including children - to participate in their care decision making and receive care consistent with their stated preferences. Additionally, the IOM is seeking to motivate clinicians to become actively engaged in all aspects of ongoing advance care planning throughout a person's life.
- Recommendation 3: Professional Education and Development - everyone, from providers to accrediting organizations to regulators and credentialing bodies - should establish training/licensure requirements that strengthen clinician palliative care expertise and skills. There are seven specific items related to this recommendation, including a suggestion that all physicians "responsible for managing advanced serious illness (including primary care..." be required to receive palliative care education and clinical experience. As an aside, I don't see (at first glance) anything that encourages health care providers to regularly offer, subsidize, or promote palliative care continuing education for staff.
- Recommendation 4: Policies and Payment Systems - payers and health care providers should integrate the financing of services, including incentives to achieve coordination of care and improve shared decision making. This recommendation emphasizes the need for universal electronic health records that are accessible across care settings and providers and incorporate essential elements of advance care planning. Additionally, states are encouraged to implement the Physician Orders for Life-Sustaining Treatment (POLST) paradigm.
- Recommendation 5: Public Education and Engagement - national, state and community organizations should provide informative resources and facilitate ongoing engagement regarding the care of those living with a serious illness. Specific education and engagement foci are detailed including outreach to underserved populations, values-based dialogues and efforts to "dispel misinformation that may impede informed decision making and public support for health system and policy reform regarding care near the end of life." Health care organizations are encouraged to provide information about end-of-life care and the report asks payers to disseminate potentially proprietary research that can improve the efficacy of audience-specific messaging.
It's been a long day, listening to the webcast, reading the summary document, and writing this blog and I'm sure I'll have more thoughts on this after I spend more time reviewing it, but for now, here are some thoughts regarding the potential implications for national, state, and community-based advocates for, and providers of, hospice:
- In a very politically-sensitive, inclusive, and not at all defensive way, I think we need to engage our colleagues in a discussion regarding the lack of hospice-specific recommendations. I understand that the process was entirely consensus based, was focused more on the individuals and less on the providers, and that many of the committee members represented the broader field of palliative care, yet in a report called "Dying in America" one could expect to see a little more emphasis on hospice. Since hospice is the only Medicare benefit designed specifically for "the dying" and so many Americans are accessing hospice hours or days before they die, the issue of timely access to hospice care must be addressed.
- Another distressing omission was the lack of specific recommendations related to improving access to quality end-of-life care within communities of color. During the webcast today the IOM announced that it is developing a year-long dissemination plan that includes an emphasis on public engagement and education. As I tweeted earlier today, I hope that this dissemination plan engages many diverse stakeholders representing different perspectives, including a meaningful representation of communities traditionally-underserved by hospices and other palliative care providers.
- The majority of the recommendations describe and/or promote the goals of US hospice founders when they championed end-of-life care and started the hospice movement. Back in 1989 when I started in this field hospices were the only practitioners consistently providing quality relief from the burdens of serious illness and related "curative" treatments. That is no longer true. And that isn't a bad thing: access to palliative care, in advance of hospice Medicare benefit services, is, was and, will continue to be needed in all care settings.
- This year several high-profile national stories have garnered significant attention to some highly questionable practices. While I disagree with the conclusions and sensationalized approach of the journalists, the comments of members of the public demonstrates a need for vigilance. All hospices and those who work with, and on behalf of hospice providers must do everything possible to ensure the provision of the highest quality care and utilization of ethical business practices. I firmly believe the majority of hospice professionals want to do the right thing and we must all work to help them do it.
As always, I welcome your feedback, comments and questions. kb
Posted by Kathy Brandt, MS, Principal of the kb group