WASHINGTON—The Institute of Medicine (IOM) has released a comprehensive new report that is highly critical of how the U.S. health care system treats patients nearing the end of life and their families.
Introduced at a news briefing here, the report, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” envisions a different approach that combines medical care and social services and always puts the wishes and preferences of dying patients and their families first.
Putting the patient's wishes first is especially important in a nation as culturally and ethnically diverse as the United States, speakers stressed. “Once we have acknowledged our common humanity and challenges, we can move forward to improve end-of-life care,” said IOM President Victor J. Dzau, MD. “The time is now for our nation to develop a modernized end-of-life care system.”
The 21-member committee that wrote the report found:
- barriers in access to high-quality end-of-life care;
- a mismatch between the services patients and families need and the services they can obtain (such as being transported to the hospital when patients would prefer to be treated at home);
- an inadequate number of palliative care specialists;
- gaps in knowledge about palliative care among treating clinicians; and
- fragmented care delivery systems with perverse financial incentives.
Although studies show that most Americans want to die at home and make care decisions as long as they can, a 2013 national survey of American adults found that while 90 percent believe that having family conversations about end-of-life preferences is important, fewer than 30 percent have actually had such a conversation.
Have Conversation at Time of Specific Milestones
To address these barriers, the committee proposed a model for advance care planning that recommends that an initial conversation with a clinician about end-of-life wishes be held at the time of certain adult life milestones, such as getting a driver's license, leaving home, or getting married. Additional planning should be done for specific situations, such as being treated for serious illnesses including cancer, when applying for Medicare, when health status worsens, and in the final year of expected life, when known.
Long aware of a number of issues raised in the new report, the American Society of Clinical Oncology issued a Provisional Clinical Opinion, “The Integration of Palliative Care into Standard Oncology Care,” in 2012 (JCO; 2012;30:880-887). As the title of the document suggests, ASCO recommends melding palliative care with the care of cancer patients receiving active treatment (OT 3/25/12 issue).
ASCO is also hosting its first Palliative Care in Oncology Symposium this month (Oct. 24-25, Boston), cosponsored with ASTRO, the American Academy of Hospice and Palliative Medicine, and the Multinational Association of Supportive Care in Cancer, and stressing “patient-centered care across the cancer continuum” [Watch for coverage of that meeting from Lola Butcher].
Dzau said the new report on end-of-life care, which was funded by an anonymous donor, “has such relevance to the national debate” about end-of-life care, which tends to be fraught with emotion. “Dying can be a tremendously difficult experience, and today patients may not die in the way they might wish.”
He said the whole debate on informed decision-making at the end of life was tainted by controversy surrounding a proposed provision of the Affordable Care Act, a provision that would have authorized Medicare to reimburse physicians who counsel patients about living wills, advance directives, and options for end-of-life care. AARP endorsed the proposed provision, but vocal opponents took to the airwaves and the Internet to label the proposal “death panels,” which they equated as veiled euthanasia, and the proposal never became law.
A later effort to pass a similar provision, which would have gone into effect on January 1, 2011, also failed. Dzau said the controversy and negative publicity over “death panels” led Americans to misunderstood the goal of the proposed Medicare payment provision; one 2011 poll of American adults found that 23 percent believed the ACA gave government the power to make end-of-life decisions for older people. While many Americans don't want to talk about death, “we cannot let our discomfort lead us down a path of inaction” on such an important issue,” Dzau stressed, noting that since the IOM released a report on end-of-life care in 1997, there has been progress: hospital-based palliative care teams have increased, and palliative care is now well established in medicine, nursing, and social work.
But to improve end-of-life care further, “We need to overcome many impediments,” said IOM committee co-chair Philip A. Pizzo, MD, a pediatric oncologist who is the David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology at Stanford University School of Medicine and former Dean of Medicine at the university.
He noted that:
- There is insufficient attention to palliative care in medical and nursing school curricula;
- Educational silos impede the development of multidisciplinary teams to care for patients at the end of life; and
- There are gaps in equipping physicians with sufficient communication skills to talk to patients about end-of-life choices.
Informed patients can make good negative as well as positive care choices, Pizzo said: For example, they may make it clear that they do not want certain kinds of medical care. Also, he said, it should be recognized that “choices change over the life cycle.”
Stigma about the Word?
Asked if stigma surrounding the word “hospice” accounts in part for late physician referrals to hospice care for patients drawing near the end of life, he said: “There is still very much the mind-set among oncologists that care be continued. The orientation of medicine is geared towards doing and always doing more.”
With that in mind, he said, it is important for physicians treating seriously ill patients to have an honest, transparent dialogue with the patient about the patient's prognosis and wishes. Ironically, he said in his remarks at the news briefing, physicians themselves are generally very clear about how they want to die—stating that they want to die at home with palliative care to keep them comfortable—“and yet those same physicians, when they care for others, are doing the opposite.”
“We need clinicians to understand hospice, and then we need the public to understand hospice so that misperceptions can be corrected,” added IOM committee member Jean S. Kutner, MD, MSPH, Professor of Medicine in the Divisions of General Internal Medicine, Geriatric Medicine, and Health Care Policy and Research at the University of Colorado.
As of now, the fee-for-service medical system perversely encourages spending at the end of life on acute-care incidents—such as visits to emergency rooms—which could be reduced with high-quality palliative care, said the other co-chair of the IOM committee, David M. Walker, former US Comptroller General.
“We find that current practices result in more acute care,” he said. Specifically, Walker cited the fact that when emergency medical services respond to a 911 call for a Medicare patient, the current Centers for Medicare & Medicaid Services policy (which is generally followed by private insurers) requires as a condition for reimbursement that the patient be taken to a hospital. So even if patients might be better served at home with well-managed palliative care and do not want to go to the hospital, they end up being transported by ambulance to and being treated in the emergency department.
The IOM report recognizes that patients who are in the advanced stages of a serious illness often have multiple needs, and states: “Round-the-clock access to a consistent point of contact that can coordinate care obviates the need to dial 911 and engage emergency medical services.”
Walker said the committee believes that some changes to improve end-of-life care can be made without legislative action, and noted that some insurers are already taking steps to reduce emergency department visits at the end of life.
“I can assure you this is not totally altruistic,” he said, adding that insurers are well aware that they save money by encouraging more high-quality palliative care in the home (which many patients prefer), and fewer trips by ambulance to the hospital.
The new report on end-of-life care can be accessed at the National Academies Press site at http://bit.ly/1qpJBhN
Among the recommendations of the new IOM report are the following:
1 Government health insurers and care delivery programs, as well as private insurers, should cover and reimburse for comprehensive end-of-life care for patients with advanced serious illness;
2 Clinicians should initiate high-quality conversations about advance care planning, integrate the results of these conversations into the ongoing care plans of their patients, and communicate with other clinicians as requested by the patient;
3 All clinicians across disciplines and specialties who care for patients with advanced serious illness should be competent in basic palliative care, including communication skills, inter-professional collaboration, and symptom management;
4 All patients with advanced serious illness should have access to skilled palliative care—such as that provided by an interdisciplinary palliative care team—or hospice care in all settings where they receive care (including health care facilities, the home, and the community);
5 The full range of palliative care delivered should be characterized by transparency and accountability through public reporting of aggregate quality and cost measures for all aspects of the health care system related to end-of-life care;
6 Certifying bodies and state licensure agencies should require knowledge of and education in palliative care;
7 U.S. policies and payment systems should provide financial incentives for medical and social support services that decrease the need for emergency department and acute care services at the end of life;
8 Public and private insurers should require the use of interoperable electronic health records that incorporate advance care planning in order to improve communication of patients' wishes across time, settings and providers, documenting the designation of a surrogate/decision maker, the patient's values, beliefs, and goals for care, the presence of an advance directive, and the presence of medical orders for life-sustaining care;
9 States are encouraged to develop and implement a Physician Orders for Life-Sustaining Treatment (POLST) paradigm program in accordance with nationally standardized core requirements; and
10 Health care professional societies and care delivery organizations should prepare and broadly disseminate educational materials on high-quality care near the end of life to encourage discussions about informed advance care planning.