IOM Dying Report: Reactions Range From Fear to Support

Veronica Hackethal, MD

September 25, 2014

The recently released report "Dying in America" has provoked an outpouring of reactions, ranging from support to fear, but also revealing much frustration among both health professionals and members of the public with the current system of care at the end of life.

The report, issued by the Institute of Medicine (IOM), calls for major reform of end-of-life care in the American healthcare system, particularly through improved training of healthcare providers, engagement and education of the public on a nationwide scale, and better care integration and coordination, including reimbursements for discussions about end-of-life care planning.

Although the report focuses on improving the quality of care, a byproduct of realigning healthcare priorities could be more efficient use of healthcare resources. Decreasing the number of healthcare dollars spent on unnecessary and unwanted care delivered near the end of life could result in substantial cost savings, which is a potentially contentious issue.

"[Reducing costs] is an incorrect interpretation of the report. We were very, very purposeful in making quality and individual preference a primary driver," explained Philip Pizzo, MD, cochair of the 21-member committee who drew up the report. Dr. Pizzo is professor of pediatrics and founding director of the Stanford Distinguished Careers Institute at Stanford University in California.

"We have been very specific in the report in saying that individual preferences should be honored, whether those call for more care or less care. That we shouldn't be proscriptive about this," Dr. Pizzo told Medscape Medical News. "We are also very clear that many individuals find themselves in situations where they are in the midst of acute care management when they might have wished something else, had they had the opportunity to express it."

In a statement issued in reaction to the report, the National Right to Life Committee said it opposes Medicare funding for advance care planning. The committee bases its objections on the possibility that patients could be pressured to reject treatment because of "cost pressures and the ideological commitment of a significant number of health care providers to hastening death for those deemed to have a 'poor quality of life.' "

"The report's emphasis on cost-slashing will intensify, rather than calm, the well-founded fears of older people and those with disabilities that the renewed push for government funding and promotion of advance care planning is less about discovering and applying their own wishes than about pushing them to accept premature deaths," Burke Balch, director of the National Right to Life Committee's Powell Center for Medical Ethics, told Medscape Medical News.

"Any governmental promotion of advance care planning that is not carefully vetted for death-advocating bias by disability rights, elder rights, and life advocates will almost invariably 'nudge' participants toward treatment rejection through emotionally loaded and misleading characterizations of disability, illness, and the effects of life-preserving treatment," Balch added.

However, an expert in palliative care approached by Medscape Medical News disagrees.

"The [IOM] report confronts head-on the destructive myths of 'death panels' that arose during the debates about the Affordable Care Act and forcefully counters these with substantive evidence and clear recommendations," Joshua Hauser, MD, assistant professor and Education in Palliative and End-of-Life Care director at Northwestern University in Chicago, Illinois, told Medscape Medical News. Dr. Hauser was not involved in the research and preparation of the report.

"The report frames the issue of end-of-life care as not only a medical one, but a concern and a reality for all of us as patients, family members, friends, and professionals. It recognizes the importance of the public in advocating for and pushing this issue, even in the face of hesitance by us as physicians," Dr. Hauser added.

Potential concerns stemming from the report, however, may include fear of over- or undertreatment among family members and patients nearing the end of life, according to Kathleen Dracup, RN, FNP, PhD, professor emeritus and dean emeritus at the University of California San Francisco School of Nursing. Dr. Dracup was 1 of 18 independent reviewers of the IOM report.

"Both ends of the spectrum [over- and undertreatment] can occur for financial reasons, rather than for the best interests of the patient," Dr. Dracup explained to Medscape Medical News. "[In addition], health care providers may fear that increasing regulation will be brought to bear to end-of-life care, limiting the options they might provide their patients."

Online comments in response to coverage of the IOM report by Medscape Medical News , as well as by the New York Times , seem to bear out Dr. Dracup's prediction.

The New York Times coverage of the IOM report generated more than 700 online comments before commenting was closed, revealing the complexity of this issue and readers' strong emotions about it. Reflecting the broad readership of the newspaper, comments came from across the nation and reflected a diversity of experience, including people dealing with a terminal illness themselves or in family members, as well as hospice workers, clergy, nurses, and physicians. Comments revealed broad frustration surrounding end-of-life care in the current healthcare system. They also emphasized personal choice both for and against aggressive care near the end of life.

Family members and caregivers emphasized the stress and guilt involved in seeing loved ones suffer through unnecessary and often futile procedures near the end of life, often at great financial cost. They also stressed the need for advocacy against a system they perceived to be difficult to navigate. In addition, the comments show dissatisfaction with the quality of current hospice and palliative care and the concern that only those who can afford home healthcare aides will receive better end-of-life care.

Some of the comments also revealed distrust of the government and medical establishment, with concern that politics and cutting costs could stand in the way of personal choice. One individual with advanced cancer, commenter Jay Kallio, writes: "The greatest impediment to rational end of life care is the tremendous distrust of both government and the medical/pharmaceutical industries that they have earned. As a stage 4 cancer patient it seems very unlikely to me that any recommendation emanating from either institution will carry much weight with the public, and given the pervasive degree of distrust, might well persuade the public against support for change, rather than promote change. The most likely assumption is that: 'If either government reimbursement policies or the health care industry are for it, it will probably be bad for the patients.' "

Others voiced concerns about "rushing" elderly patients into hospice before they really need it: "Would that my parents could have had home care covered rather than using up what little remained of their savings on home caretakers, all the while worrying about running out of money," writes commenter Elizabeth from Vermont. "Government HAS a stake in our dying now and dictates that you will be in a hospital attached to tubes," she added.

The idea of having conversations about end-of-life care earlier on in life drew sharply opposing responses.

One reader commented: "I am not young, but perfectly able to take care of myself, drive, cook, clean, work, volunteer etc. It seems a bit rude. Just so you all know. I do not want to die. If I change my mind I will let you know. No need to ask continuously. And no, I am not in the mood to delegate. If society, possibly in the form of an officious intake person, decides that I am not worthy of the expense of keeping me alive it will have to do it on its own. No authorizations from me in advance. I will let you know when and if I change my mind.... [D]on't be in such a hurry. I find life interesting. Let you know if I change my mind."

But some readers also strongly supported the idea. "The 'death panel' scare tactic turned the conversation about end of life into a political football rather than a sobering conversation about the personal needs and desires of people for self-determination. While it may not be an easy conversation, it is a necessary, highly personal one that must be encouraged and supported," commented Art Murr from New York.

Not surprisingly, the coverage of the IOM report by Medscape Medical News generated comments predominantly from providers and other healthcare professionals. Many commenters supported the report's recommendations and agreed about the need to get the discussion going about end-of-life care. Others voiced concerns about overregulation by government authorities and the need for malpractice reform. Still others outrightly rejected the report.

"It is about time that America pays attention to this urgent matter draining our healthcare dollars and increasing suffering of our elderly population! I feel it should be mandatory to have advanced directive[s] as soon as you get qualified for Medicare," writes commenter Dr. Usha Setia, who cares for patients with HIV/AIDS.

"When a society becomes focused on death, however well meaning, unintended and often unpredictable results appear. One very predictable result is [that] at some point helping the old and suffering to die with grace, can and likely will turn into their duty to die so that the rest don't suffer emotionally or financially," writes a commenter named Paul Johnson.

"Whenever government begins to dictate what is best across the board is when problems begin," writes commenter Kay Whitehead, a hospice employee for 25 years.

"Scariest article I have read in a long time," writes commenter Patricia Leonard, a registered nurse.

The reactions will continue, and the IOM report appears to have hit a nerve in the American population,

"I take pride in the IOM report, because I think the report is pretty courageous," said one of the authors, William Novelli, professor at the McDonough School of Business at Georgetown University in Washington, DC; cochair of the Coalition to Transform Advanced Care; and past chief executive officer of AARP.

Research suggests that when people have an advanced illness, they want to be home with their loved ones, to have appropriate pain management, and to have their spiritual needs addressed without impoverishing their families, Novelli said to Medscape Medical News.

The IOM report is "about patient and family satisfaction," Novelli said. "If you achieve and improve those through a better, more aligned, more integrated health system, then it is possible that as a result of that we may have a more sustainable healthcare system," he said. However, he emphasized that this is "not a report about saving money. It's a report about quality care."

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