In September, the Institute of Medicine (IOM) released its report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The report argues that the U.S. health-care system subjects patients to too many—and often futile—interventions near the end of life, often denying them their best chance of maintaining the highest possible quality of life for the longest possible time. Care near the end of life, said the report, should be person-centered, family-oriented, and evidence-based and should be covered by government and private health insurers.
The 500-page report describes a health-care system that is largely broken and unable to meet the needs of dying patients and calls for improvements in the areas of care delivery, clinician-patient communication and advance care planning, professional education and development, policies and payment systems, and public education and engagement.
Remedying the poor quality and availability of medical and social services for patients and their families, according to the report, will not only enhance quality of life through the end of life, but will also ensure a more affordable and sustainable health-care system by avoiding acute care services that patients and families do not want and that would not deliver clinical benefit.
Included among the factors the report cites for derailing the delivery of high-quality care near the end of life are:
- A rapidly increasing number of elderly Americans
- A growing cultural diversity of the U.S. population, heightening the need for a more responsive patient-centered health-care system
- Structural barriers in access to care that disadvantage certain population groups
- A mismatch between the services patients and families need and the services they can readily obtain
- An inadequate number of palliative care specialists and too little palliative care knowledge among other clinicians who care for individuals with serious advanced illness
- A fragmented health-care delivery system that has wasteful and costly systemic problems, including perverse financial incentives, time pressures that limit patient-doctor communication, a lack of service coordination across programs, and unsustainable growth in costs
Finding Opportunities for Improvement
Although the challenges facing end-of-life care are many, the report provides several areas of opportunity for improving the delivery of health care near the end of life, including:
- Increasing ways to improve participation in effective advance care planning and shared decision-making among patients and families, including seriously ill children and adolescents, who may be able to participate in end-of-life decision-making on their own behalf. According to the IOM report, the advance care planning process can begin at any age or state of health and should center on frequent conversations with family members and care providers
- Utilizing communication and health information technologies, including electronic health records
- Recognizing and supporting the role of family caregivers
- Revising payment systems to incentivize the integration of medical and social services, the coordination of care across multiple care settings, and the use of advance care planning and shared decision-making to ensure the services patients receive reflect their goals and preferences
- Developing quality measures to enable accountability
The ASCO Post talked with Philip Pizzo, MD, Former Dean and David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology at Stanford University School of Medicine and co-chair of Dying in America, about the IOM committee’s findings and recommendations to improve end-of-life care in America.
Achieving Goals
Among the areas of medical care cited in Dying in America that need improving are greater access to palliative care services and a greater understanding of the role of palliative care by both the public and medical professionals. Please talk about how those goals can be accomplished.
First of all, it is important to recognize that palliative care is about providing high-quality, experienced, and competent medical care that is complementary to state-of-the-art treatment and is provided in tandem with standard care, not in place of it. In our report, we define palliative care as care that provides relief from pain and other symptoms, supportive care in terms of overall nutrition and well-being, and management of all the social and psychosocial issues that occur during an advanced-stage serious illness.
Palliative care has evolved over the past 10 to 15 years to become a medical specialty in its own right that is provided by doctors, nurses, social workers, and clergy, among others. Data from randomized clinical trials show that palliative care together with standard medical treatment improves not only the quality of life for individuals with cancer, but lengthens their lives as well. So there are many reasons to believe that palliative care is an important component of overall cancer treatment.
That said, I think there is a dilemma for oncologists in terms of knowing what the boundaries are between what we do as general practitioners and what we do as cospecialists in providing this type of care. Some oncologists will feel comfortable and competent in delivering basic palliative care (which is what our report refers to), meaning that they have some of the skills needed to deliver palliative care; they stay with their patient and continue providing supportive care in addition to active treatment throughout the life and death of the patient if death is the end result.
That level of hands-on care is different from requesting a consult from a palliative care specialist. So the dilemma for oncologists is deciding whether to comanage the palliative care needs of their patients or to turn their patients’ care over to a palliative care specialist.
More Specialist Education Needed
The report cites the insufficient numbers of palliative and hospice care specialists as among the factors contributing to the lack of high-quality care near the end of life and calls for greater professional education and development in these specialties. What would you like to see
happen?
I think that all physicians, particularly those who are engaged in caring for people with serious illness, should feel competent in engaging in end-of-life discussions. One of the challenges we have as a nation is that we don’t engage in those discussions proactively, and one of the improvements we call for is making these discussions routine around different stages in the life cycle. By that I mean introducing the topic early in life at various milestones, for example, when a person gets a driver’s license, graduates from college, gets married, changes jobs, moves, and, of course, encounters an illness.
These are points in time when there ought to be some reflection around what one’s goals are should a catastrophic event occur, and having these conversations at different points helps normalize advance care planning discussions. It’s not something that you save for those last weeks, days, or moments of life, and all doctors need to be willing to engage in those kinds of discussions and to listen to what their patients have to say.
Now, the problem is that the current practice of medicine, which is still very much fee-for-service and volume-driven as opposed to quality of time–based, makes it very hard for those discussions to take place. One of the changes we call for in the report is that physicians and other providers be evaluated in how well they are able to deliver those kinds of life and death discussions with their patients, and that over time, quality measures are developed that are linked to fees that physicians receive.
The Patient Protection and Affordable Care Act originally included a provision that authorized Medicare to pay physicians for counseling patients about living wills, advance directives, and options for end-of-life care, but it became too politicized and was removed from the law. That’s unfortunate because these discussions need to be part of the standard of practice of medical care.
The report also calls for providers across all disciplines and specialties and medical institutions to put measures in place as part of their practice certification and accreditation of competency process to expand palliative care education and increase the number of palliative care specialists to meet the needs of patients with advanced illness.
Encouraging Developments
As you mentioned, the Affordable Care Act and Medicare currently do not reimburse physicians for having conversations with their patients on advance care planning. The issue is so politically charged—do you think it will be possible to change that provision in these programs?
There are a couple of things happening that are encouraging. Some private insurance companies are taking steps to provide physician reimbursement for advance care planning discussions. Of course, Medicare is the major insurer for people over 65 and that is where the preponderance of this issue lies. Changing the provision may require legislation and that should happen, because it is the right thing to do.
It is unfortunate that provisions that included payment for end-of-life discussions got off track because of the political tonality that surrounded talk of “death panels” and we lost a lot of ground in terms of opening dialogue in this area because of the fear that was perpetuated by those words. The idea of these discussions encouraging death panels couldn’t be farther from the truth.
What we are seeking to do is improve rather than limit care. In our report, we purposely talked about honoring individual preferences about end-of-life care and took into account that some people will want more treatment and others will want less and that we need to respect that, but we won’t know what people want if we don’t have a conversation that elucidates that information.
Public Education
Dying in America also calls for greater public education about end-of-life care planning, and members of the IOM committee will be embarking on a yearlong campaign throughout the country to encourage conversations about the report’s findings and recommendations. What is the committee planning?
It is a bit unusual for the IOM to continue working on a project after its report has been submitted and published, but in this case the IOM received funding that allows this public education plan to be carried out. Right now, the IOM leadership is putting together various packages, communication strategies, and plans for dealing with all the multivariegated constituencies that would need to be part of this national dialogue. This work will be completed soon, and an announcement will be made on how we plan to proceed.
Closing Thoughts
How optimistic are you that the recommendations proposed in the report will be accepted and implemented?
I am always optimistic when facing challenges. Unlike many previous reports, we limited ourselves to five recommendations because we wanted to make our message as clear and understandable as possible with the hope that it would foster implementation. Because we are talking about recommendations that are logical, sensitive, compassionate, caring, and that enhance the quality of life as well as the quality of death, there is every reason to believe that the public will embrace these recommendations. ■
Disclosure: Dr. Pizzo reported no potential conflicts of interest.
For a copy of Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, go to iom.edu/endoflife.
