ClinicSpeak: end-of-life care in MS

What metric should we use to measure the quality of our MS services at the end-of-life? #ClinicSpeak #MSBlog #MSResearch

"We have debated end-of-life care and advanced directives on our blog posts many times before. The consensus has been that MSer choice is what is important in driving key decisions around end-of-life issues. I therefore find it odd that some of of you think we should include the issue of end-of-life care in any quality standards/metric that involves the care of MSers. The following excerpts from a recent perspective piece gets to heart of the problem; it was written in response to an Institute of Medicine report of 'Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (2015)'. I believe strongly in the holistic management of MS and to do this properly we need some kind of metric in relation to end-of-life care; simply having it as part the quality debate will get healthcare professionals, and MSers, to think about it and consider their role in the management of MS in its terminal phase. A lot of end-of-life care is futile, expensive and undignified. Don't we all deserve the right to choose a dignified death?"


Pizzo & Walker. Should We Practice What We Profess? Care near the End of Life. N Engl J Med 2015; 372:595-598.

Excerpts

..... Physicians should be in a better position than people without medical training to judge the likely value of health care services available near the end of life. Yet several studies have revealed a disconnect between the way physicians themselves wish to die and the way the patients they care for do in fact die......

..... A 1998 survey of participants in the Precursors Study, which enrolled 999 physicians who graduated from Johns Hopkins School of Medicine between 1948 and 1964, revealed that 70% had not had a conversation with their own personal physician about end-of-life care. But 64% had an advance directive that they'd discussed with their spouse or family, and more than 80% indicated that they would choose to receive pain medication but would refuse life-sustaining medical treatments at the end of life....

..... Similar preferences were expressed in a 2013 survey of 1147 younger academic physicians (a group that was more diverse and included more women): 88.3% indicated that they would forgo high-intensity end-of-life treatment.....

.... Complex social, cultural, economic, geographic, and health system factors and impediments contribute to this discordance between how doctors treat their patients and how they themselves (and the majority of surveyed Americans) wish to be cared for at the end of life.....

...... In Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life, an Institute of Medicine (IOM) committee (which we cochaired) concluded that the U.S. health care system is poorly designed to meet the needs of patients and their families at the end of life and that major changes are needed.....

...... We need to begin by fostering patients' ability to take control of their quality of life throughout their life and to choose the care they desire near the end of life.....

..... The IOM committee concluded that “federal, state, and private insurance and health care delivery programs should integrate the financing of medical and social services to support the provision of quality care consistent with the values, goals, and informed preferences of people with advanced serious illness nearing the end of life.”.....

..... Physicians can also work to ensure that their patients have access — in all care settings — to skilled palliative care or, when appropriate, hospice care..... 

..... Ideally, physicians would initiate discussions about advance directives with their patients at key milestones throughout their lives..... 

.... Changing the culture in these ways will require intervention at all stages of physicians' education....

..... Physicians' experiences with medical care and dying patients have helped crystallize their desires for their own end-of-life experiences....

..... As Dying in America makes clear, physicians should now practice what they profess, to ensure that their patients have the same options that they themselves, and a majority of Americans, would choose and that they honor patients' preferences at the end of life.,,,,,

SUMMARY OF IOM COMMITTEE RECOMMENDATIONS

Delivery of care: Government health insurers and care delivery programs, as well as private health insurers, should cover comprehensive care, including palliative care and hospice care for persons with advanced serious illness who are nearing the end of life.

Clinician–patient communication and advance care planning: Professional societies and other organizations should develop standards for clinician–patient communication and advance care planning that are measurable, actionable, and evidence-based. Payers and delivery organizations should adopt these standards and their supporting processes and integrate them into assessments, care plans, and the reporting of health care quality.

Professional education and development: Educational institutions, credentialing bodies, accrediting boards, state regulatory agencies, and health care delivery organizations should establish appropriate training, certification, and licensure requirements to strengthen the palliative care knowledge and skills of all clinicians who care for patients with advanced serious illness who are nearing the end of life.

Policies and payment systems: Federal, state, and private insurance and health care delivery programs should integrate the financing of medical and social services to support the provision of high-quality care consistent with patients' values, goals, and informed preferences. Insofar as additional legislation is necessary to implement this recommendation, the administration should seek and Congress should enact such legislation. The federal government should require public reporting on quality measures, outcomes, and costs and encourage private payers and delivery systems to do the same.

Public education and engagement: Civic leaders, public health and other governmental agencies, community-based organizations, faith-based organizations, consumer groups, health care delivery organizations, payers, employers, and professional societies should engage their constituents and provide fact-based information to encourage advance care planning and informed choice based on individuals' needs and values.

The full report is available at www.iom.edu/endoflife.

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