end of life, institute of medicine, nursing and end of life



  1. Hinds, Pamela S. PhD, RN, FAAN
  2. Meghani, Salimah H. PhD, MBE, RN, FAAN


A panel of 21 diverse individuals representing different areas of expertise and experience in end-of-life care was appointed by the Institute of Medicine (IOM) in 2012 to review available evidence and craft recommendations for further improvements in care for infants, children, adolescents, and adults of all ages dying in America. The work of this panel, named the Committee on Approaching Death, was sponsored by an anonymous donor, and the oversight for the committee work was with the IOM and supported by the IOM's well-established processes to create highly credible reports that have the potential to positively affect the health of a nation. Here we briefly describe the IOM and its function in America and then the specific charge, constitution, methods, and recommendations of the Committee on Approaching Death. Importantly, we propose implications for nursing related to the recommendations from the Committee's final report (http://www.iom.ed/Reports/2014/Dying-in-America-Improving-Quality-and-Honoring) that was released by the IOM to the public on September 17, 2014.


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The Institute of Medicine (IOM) was created in 1970 and is the health arm of the National Academy of Sciences, which was chartered under President Abraham Lincoln in 1863. The IOM aims to help those in government and the private sector to make informed health decisions by providing evidence upon which they can rely. Many of the studies that the IOM undertakes begin as specific mandates from Congress; still others are requested by federal agencies and independent organizations. Beyond its advisory role, the IOM also convenes a series of forums, roundtables, and standing committees, as well as other activities, to facilitate discussion, discovery, and critical cross-disciplinary thinking.



Pertinent to the present report, the IOM has facilitated 2 earlier landmark reports related to palliative and end-of-life care in America; the first was issued in 1997 (Approaching Death: Improving Care at the End of Life)1 and focused on the dying and deaths of adults in America, and the second was released in 2003 (When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families)2 and focused on children dying in America. The reports similarly examined the policies, funding, clinical care, legal guidance, and empirically based findings related to life-limiting illness and dying; both produced recommendations for improving care. The 1997 report contained 7 recommendations, and the 2003 report included 12 recommendations. In brief, the 1997 recommendations were that all persons with a potentially fatal illness and those close to them should be able to expect skilled and supportive care; that all health professionals commit to improving care for dying persons and effectively preventing symptoms; that all parties involved in health care should improve methods to measure quality of life and other outcomes of dying patients and those close to them; to improve methods for financing end-of-life care; that all levels of education should prepare health professionals to care well for dying patients; that palliative care should become a defined area of expertise if not a medical specialty; that the research establishment should implement priorities that would strengthen the knowledge underlying end-of-life care; and that a public discussion be created regarding dying including care options.


The recommendations from the 2003 report, in brief, included that all pediatric health professionals and systems of care need to collaborate on creating clinical practice guidelines for palliative, end-of-life, and bereavement care; funders of care expand benefits and eliminate certain restrictions related to palliative, hospice, and bereavement care; all pediatric health professionals and care systems promote the coordination and continuity of care among providers and develop regional information programs as resources for providers and families; all pediatric institutions develop policies and procedures for involving children in talking about and deciding about care; all health professional programs collaborate with professional associations to improve the care of seriously ill children; pediatric health professionals collaborate with experts in adult palliative care; the collection of descriptive data needed to guide palliative, end-of-life, and bereavement care be funded by public and private organizations; and research priorities related to pediatric palliative, end-of-life, and bereavement care be established by all funders of pediatric research.



Members of the Committee on Approaching Death (Figure) represented nursing, medicine, law, hospices, health administration, social sciences, epidemiology, finance, geriatrics, pediatrics, health disparities, caregiving, and spirituality. The members represented different geographic locations in America and academic, hospital, professional association, and community-based enterprises. The committee's charge was to complete a consensus study on the state of care of all persons with a life-ending illness or condition and who are approaching the end of life and develop recommendations for needed changes in clinical care, supportive care, research, policy, financing, and workforce. In addition, the committee was charged with creating a dissemination and communication plan around the report and recommendations that would invite all others to engage in discussion that would foster understanding and action taking by others. To guide its work, the members developed a set of guiding principles that reflected values central to end-of-life care including highest-quality compassionate care that is consistent with the wishes of the dying. A strong focus on family in its broadest definition was central to the guiding principles.

FIGURE. Committee me... - Click to enlarge in new windowFIGURE. Committee members.

The committee convened for 6 2-day meetings and used multiple strategies to gather evidence related to the current status of care for the dying in America such as public testimony (including from the chief executive officer of the Alliance for Excellence in Hospice and Palliative Nursing of the Hospice and Palliative Nurses Association), in locations across America, critiquing published research and policy papers from among the 4500 papers identified, commissioning additional analyses and papers for the final report, openly discussing and debating the meaning of available relevant data, and writing various sections of the report and critically reviewing each draft of the written report. The work of the committee was facilitated by administrative and research support staff from the IOM and from 2 scientific writers.


The final report, titled Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, is composed of 6 chapters and 3 commissioned papers (1 on financing and payment methods for end-of-life care, a second on the epidemiology of individuals who are dying and the details and patterns of their use of health care, and the third on providing pediatric end-of-life and palliative care). Importantly, the progress made with each of the recommendations from the 2 prior IOM reports on end of life is summarized in this new report. Key findings included that persons nearing the end of life tend to experience multiple care transitions between settings and providers, which fragments care and burdens the dying person and the family caregivers; more is now expected of family caregivers in terms of care for their dying family member; and timely referral to palliative care is often delayed.



The 5 consensus recommendations, purposefully crafted to specify responsible parties that are well positioned for action taking, included the following:


Recommendation 1: Delivery of Care

Government health insurers and care delivery programs, as well as private health insurers, should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life.


Recommendation 2: Clinician-Patient Communication and Advance Care Planning

Professional societies and other organizations that establish quality standards should develop standards for clinician-patient communication and advance care planning that are measurable, actionable, and evidence based. These standards should change as needed to reflect the evolving population and health system needs and be consistent with emerging evidence, methods, and technologies. Payers and health care delivery organizations should adopt these standards and their supporting processes and integrate them into assessments, care plans, and the reporting of health care quality.


Recommendation 3: Professional Education and Development

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


Recommendation 4: 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 quality care consistent with the values, goals, and informed preferences of people with advanced serious illness nearing the end of life. To the extent that additional legislation is necessary to implement this recommendation, the administration should seek and Congress should enact such legislation. In addition, the federal government should require public reporting on quality measures, outcomes, and costs regarding care near the end of life (eg, in the last year of life) for programs it funds or administers (eg, Medicare, Medicaid, the Department of Veterans Affairs). The federal government should encourage all other payment and health care delivery systems to do the same.


Recommendation 5: 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 about care of people with advanced serious illness to encourage advance care planning and informed choice based on the needs and values of individuals.



The report very much reflected the key role of nurses in end-of-life care, education, research, and advocacy. Although responsible parties are named in each recommendation, the roles for nurses to champion these recommendations are multiple and key to the future positive impact of each recommendation. Below we identify opportunities specific to practice and educational capacity building.


Developing skills in primary palliative care. Increasingly, palliative care is becoming a mainstream approach to preventing or diminishing suffering in patients and families and is available in some form in most large hospitals. Nevertheless, individuals trained in specialized palliative care remain in short supply. Thus, the report recommendation is that primary palliative care should be a core skill of every frontline health care clinician dealing with patients with advanced or serious illnesses regardless of the site of care including outpatient departments, primary care provider offices, hospitals, and community settings. All nurses, as all other interprofessional clinicians, should develop primary palliative care competencies including skills in symptom management (eg, assessment of patient's physical, emotional, social, and spiritual well-being; primary management of emotional distress) and in patient/family communication (eg, counseling of patient and family) and interprofessional collaboration (eg, serving as patient/family advocate, communicating needs to other members of the team; offering timely referral to expert level hospice or palliative care).


Enhancing the roles of nurses in improving care efficiency and care coordination. The IOM report underscores many important gaps in meeting the needs of individuals in advanced stages of serious illnesses stemming from a fragmented care delivery system, lack of care coordination and care efficiency, and chasms in medical and social services. The report recommends patients and families have access to a "24/7" consistent point of contact to address needs that may be taken care of without engagement of emergency medical services and 911 calls. These predictable needs include assistance with activities of daily living, medication management, wound care, physical comfort, and psychosocial needs, all of which are areas of nursing expertise. Thus, nurses' role development in end-of-life care coordination is an important area of opportunity. This role may facilitate end-of-life care that purposefully honors the preferences and values of the dying person while simultaneously improving the dying person/family experience at a vulnerable time in their lives.


Strengthening primary and specialized palliative care skills and knowledge through interprofessional education. The recommended shift in end-of-life care delivery (eg, from palliative care experts responsible for this care to developing primary palliative care skills) will result in greater care efficiency and care coordination but is contingent upon a corresponding shift in professional education and training paradigms. Currently, curricula of health professional schools including nursing schools contain too little content (<15 hours on average) in palliative care and lack content in practical skills development, for example, in communication. Many nurses enter practice with an understanding of palliative care and end-of-life care that is insufficient to meet the needs of patients and families. Whatever little training is available occurs mostly in isolation of the other disciplines centrally involved in end-of-life care. This professional isolation is inconsistent with the fundamental nature of palliative care as an interprofessional art and science. The committee's report identifies important opportunities for improving interprofessional education for nurses through professional training, certification, and licensure requirements as well as to increase the workforce of nurses who specialize in palliative care.


The American Association of Colleges of Nursing (AACN), the national voice for baccalaureate and graduate nursing education, can play a vital role in developing a dynamic workforce of "primary palliative care nurses" through establishing quality standards for palliative care education and assisting schools in implementing these standards. The accreditation standards for undergraduate baccalaureate nursing programs, adopted by the AACN, already specify that all baccalaureate nursing graduates be able to "[horizontal ellipsis]implement patient and family care around resolution of end-of-life and palliative care issues, such as symptom management, support of rituals, and respect for patient and family preferences."3(p31) At this juncture, important questions include the following: Are these standards adequate to train nurses in primary palliative care? Are they responsive to the expanding system level needs? How should success of these standards be measured? In addition, the accreditation standards for graduate programs could reflect the need for specialized palliative nursing knowledge and care.


The Hospice and Palliative Nurses Association (, with the mission of advancing expert care in serious illness, can play a vital role in increasing the number of nurses who specialize in palliative care through certification and recertification programs and provides specialty education offerings for nurses. The National Board for Certification of Hospice and Palliative Nurses offers 7 unique certification opportunities with varied eligibility criteria. Through its close collaboration with the American Academy of Hospice and Palliative Medicine, the Hospice and Palliative Nurses Association is particularly well positioned to advocate actively for interprofessional education in end of life.


Practicing at the highest scope. Through rigorous training, nurses can assume a more active role in delivering high-quality care that meets the needs of patients and families. However, the aforementioned efforts in improving education and training may fall short if nurses remain limited in their scope of practice. The scope-of-practice laws should allow nurse practitioners to perform at the highest level for which they have been trained and have demonstrated competence. While this is important in its own right, it is also increasingly important in the face of an ongoing and looming shortage of physician primary care providers.


Faculty training and capacity building. Implementing a model of primary and specialized palliative care training and education requires capacity building for faculty members and trainers. Existing programs such as the End-of-Life Nursing Education Consortium (ELNEC) ( may be leveraged. The ELNEC project is a national education initiative to provide undergraduate and graduate nursing faculty; continuing education providers; staff development educators; advanced practice nurses; specialty nurses in pediatrics, oncology, critical care, and geriatrics; and other nurses with training in palliative care so they can teach this essential information to nursing students and practicing nurses. While the program, administered by AACN, has trained more than 18 600 nurses since 2001 (77% of whom are nurse educators), this represents a small percentage of the total workforce or the workforce of nurse educators and calls for simultaneously increasing capacity and interest in these programs. Effectiveness of the curriculum in improving care outcomes has not been evaluated. This is a very important future step for ELNEC.



The current IOM report (http://www.iom.ed/Reports/2014/Dying-in-America-Improving-Quality-and-Honoring) identifies tremendous opportunities to improve how end-of-life care is delivered to patients of all ages who are experiencing a serious illness and their families. As an important part of the health delivery system and interprofessional palliative care teams, nurses are key stakeholders in implementing the proposed recommendations to improve end-of-life care in America. The success of future workable models of palliative care (primary and specialized) necessitates a commitment toward shifting the current educational and training paradigms toward capacity building for educators and preparing a pipeline of undergraduate and graduate nurses who can serve as resourceful and skillful members of the interprofessional teams.




1. Field MJ, Cassel CK. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academy Press; 1997. [Context Link]


2. Field MJ, Behrman RE. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academy Press; 2003. [Context Link]


3. American Association of Colleges of Nursing. The Essentials of Baccalaureate Education for Professional Nursing Practice. Washington, DC: AACN; 2008. [Context Link]