Is end-of-life care threatened by today’s healthcare environment? – Part 6

SUMMARY

Dame Cicely Saunders’ legacy of merging compassion and science—heart and mind—must be preserved because neither facet alone is sufficient to meet the challenges the healthcare system faces in caring for the dying. Compassion alone cannot sort out the best methodologies of patient care. And scientific study that lacks compassion fails to protect the dignity and humanity of the patient.

“Few of us have escaped the chaos of our current system, myself included,” said Tom Koutsoumpas, president and CEO of the National Partnership for Hospice Innovation. “My personal passion is driven by my mother’s experience, who, for almost five years, lived with multiple chronic conditions, visited the ER and the hospital on countless occasions; it became almost impossible for her and for our family. Late at night, answers did not come quickly. It often required an ER visit or hospital stay.

“With 10,000 baby boomers newly eligible for Medicare every day, many of whom will have or have advanced illness, we must find a way to provide quality care to this population—or fragmented care and cost will continue to spiral out of control. I often say we need to go back to the future by providing care where patients want it—in the home up until the end of life,” Koutsoumpas said.

The four areas of emphasis covered in this paper are:

• Patient-centered, whole-person care
• Physician-patient communication
• Staff and provider education
• Research

Even with this brief introductory overview of these topics— each of which deserves an entire volume of its own—it is obvious that they are all intricately intertwined with one another.

Rigorous scientific research yields the information needed to educate providers about best practices and to point out the gaps and flaws in the current system. Physicians who have been adequately educated about the research are much more likely to engage in meaningful communication with patients about end-of-life issues and help them make decisions for their own

care that best meet their goals and needs. Patients who have been informed in a timely manner about their care choices and have had a meaningful conversation about their goals of care are more likely to choose hospice and palliative care for their last days, which will ensure they are treated with a patient- centered, whole-person approach—as long as they choose a hospice that prioritizes patients over profits.

Meeting the challenges of a burgeoning elderly population that will result in increased healthcare costs and a shortage of providers and caregivers requires both a focus on the legacy left by Dr. Saunders and a commitment to patient-centered rather than profit-centered care.

While this paper has highlighted the limitations of the profit- centered approach of many for-profit hospices, there are also lessons that not-for-profits can learn from these corporations, such as increased operating efficiency.⁴⁴ One study also shows that for-profits are more likely to reach out to low-income and minority communities,⁴⁵ which not-for-profits would do well to emulate.

As Dr. Byock writes: “If we see the problem within a larger social framework—helping people to live in safety and as well as possible as they care for one another and face the natural end of their lives—we will discover approaches that are refreshingly intuitive and many more resources than we had previously imagined were available.”⁴⁶

While there is much work yet to do, a great deal has already been accomplished in the quest to provide compassionate care for the dying, thanks to the tireless devotion of Dr. Saunders. Since 2008, CMS and other government agencies have recommended, suggested, and made changes to the Medicare Hospice Benefit, to attempt to curb financially driven behaviors. Perhaps now is the perfect time—with population health and patient- and family-centered care shifting the U.S. healthcare system—for us to again focus on Dr. Saunders’ core elements, looking for ways to strengthen the spirit of end- of-life care and improve community engagement. Preserving the legacy of her vision will provide the best guidance and innovation possible for the tasks that remain.

ABOUT OHIO’S HOSPICE

Ohio’s Hospice, based in Dayton, Ohio, is a network of mission-driven, not-for-profit hospice and palliative care providers leading a collaborative transformation to assure superior end-of-life care. As a forward-thinking leader, Ohio’s Hospice is dedicated to preserving and sustaining the legacy of community-based, person-centered care at the end of life for all who could benefit from quality, compassionate care regardless of the ability to pay.

REFERENCES

¹ University of Wisconsin Population Health Sciences website. https:// www.improvingpopulationhealth.org/blog/what-is-population-health. html
² Friewirth, Judy. Community Engagement Governance: Systems-Wide Governance in Action. Nonprofit Quarterly. May 9, 2011. https:// nonprofitquarterly.org/2011/05/09/community-engagement- governance-systems-wide-governance-in-action/
³ Aging statistics. Administration on Aging website. http://www.aoa.gov/Aging_Statistics/.
⁴ https://news.aamc.org/press-releases/article/workforce_report_ shortage_04112018/
⁵ Osterman, Paul. (2017). Who Will Care for Us: Long-term Care and the Long-Term Workforce. New York, NY: Russell Sage Foundation
⁶ https://www.nhpco.org/sites/default/files/public/Statistics_ Research/2017_Facts_Figures.pdf
⁷ https://www.washingtonpost.com/business/economy/2014/12/26/ a7d90438-692f-11e4-b053-65cea7903f2e_story.html?utm_ term=.1d997f8250c3
⁸ op. cit.
⁹ https://homehealthcarenews.com/2018/04/buyers-snatch-up- unprofitable-hospices-in-hot-ma-market/
¹⁰ https://www.cbsnews.com/news/the-big-and-profitable-business-of- dying/
¹¹ http://pnhp.org/news/rise-of-for-profit-hospice-industry-raises- troubling-questions-new-study-says/
¹² Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
¹³ Institute of Medicine. 2015. Dying in America.
¹⁴ https://www.gpo.gov/fdsys/pkg/FR-2015-05-05/pdf/2015-10422.pdf
¹⁵ Carlson MD, Gallo WT, Bradley EH. Ownership status and patterns of care in hospice: results from the National Home and Hospice Care Survey. Med Care. 2004;42(5):432-438.
¹⁶ https://www.washingtonpost.com/business/economy/2014/12/26/ a7d90438-692f-11e4-b053-65cea7903f2e_story.html?utm_ term=.1d997f8250c3
¹⁷ op. cit.
¹⁸ op.cit.
¹⁹ op. cit.
²⁰ https://homehealthcarenews.com/2018/04/buyers-snatch-up- unprofitable-hospices-in-hot-ma-market/
²¹ Byock, Ira. (2012). The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life. New York, NY: Penguin Group

²² Institute of Medicine. 2015. Dying in America.
²³ https://www.nhpco.org/sites/default/files/public/Statistics_ Research/2017_Facts_Figures.pdf
²⁴ https://www.johnahartford.org/newsroom/view/advance-care- planning-poll#Conversation%20Stopper
²⁵ Byock, ibid.
²⁶ Gawande, ibid.
²⁷ https://www.cbsnews.com/news/the-big-and-profitable-business-of- dying/
²⁸ Saunders & Clark, ibid. xxi
²⁹ Institute of Medicine. 2015. Dying in America. 237
³⁰ https://www.shoshanaungerleider.com
³¹ https://assets.aspeninstitute.org/content/uploads/2017/02/AHSG- Report-Improving-Care-at-the-End-of-Life.pdf
³² http://www.nedalliance.org/nhpco-eold-council.html
³³ Aldridge MD, Schlesinger M, Barry CL, et al. National Hospice Survey Results: For-Profit Status, Community Engagement, and Service. JAMA Intern Med. 2014;174(4):500–506. doi:10.1001/jamainternmed.2014.3
³⁴ https://cansupport.org/dame-cicely-saunders-palliative-care-pioneer/
³⁵ https://cicelysaundersinternational.org/dame-cicely-saunders-a- brothers-story/planning-first-modern-hospice/
³⁶ Lynch, S. Am J Hosp Palliat Care. 2013 Mar;30(2):172-7. doi: 10.1177/1049909112444592. Epub 2012 Apr 24.
³⁷ Institute of Medicine. 2015. Dying in America., 99
³⁸ op.cit.
³⁹ https://assets.aspeninstitute.org/content/uploads/2017/02/AHSG- Report-Improving-Care-at-the-End-of-Life.pdf
⁴⁰ https://www.aafp.org/news/chapter-of-the- month/20110330coloradochapter.html
⁴¹ http://www.amc.edu/BioethicsBLog/post.cfm/how-lacrosse-wisconsin- sets-a-new-example-when-it-comes-to-advance-directives
⁴² https://www.twincities.com/2018/12/30/the-way-to-go-hospice-care- surges-in-minnesota/
⁴³ Aldridge, ibid.
⁴⁴ https://www.washingtonpost.com/business/economy/2014/12/26/ a7d90438-692f-11e4-b053-65cea7903f2e_story.html?utm_ term=.1d997f8250c3
⁴⁵ Aldridge, ibid.
⁴⁶ Byock, ibid.