1. Alexander, Susan DNP, ANP-BC, ADM-BC

Article Content

Caring for a family member facing the end of life can be a challenge for loved ones. Even the smallest decisions may present unanticipated layers of complexity, particularly if families are forced to make those decisions in the setting of a complex and unfamiliar environment such as a critical care unit. Family members may be left wondering whether they chose the care their loved one wanted, and wishing for another opportunity to have the conversation that could have answered questions about preferences for treatment and support in their last days.


As older adults comprise greater numbers of the population in the United States, will more families find themselves in these uncomfortable positions? Unless conversations centered on what patients want and need for their end-of-life care take place, this may be the case, particularly when considering the age bracket that is anticipated to experience the largest growth. By the year 2060, numbers of older adults are expected to double, with increases in the oldest old (aged >=85 years) of more 400%, totaling 4.6% of the population, by the year 2050.1


We are better prepared to care for patients when we can understand that care, for many, healthcare, occurs along a spectrum and at some point there will likely be a need to transition from aggressive cure and management to the relief of suffering. The recognition of when this change occurs necessitates a combination of skills, steady focus upon the needs of the patient, and much practice in initiating difficult conversations with in stressful situations. This is no easy task. Atul Gawande, author of Being Mortal: Medicine and What Matters in the End, writes about his experiences as a resident and physician in caring for patients with terminal illnesses, "[horizontal ellipsis]when I came to experience surgical training and practice, I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them."2



Keeping the patient as the central focus of care is a skill that requires consistent practice, particularly in end-of life care, and the feeling of being unprepared to care for dying patients is not limited to physicians. Despite being consistently rated as highest on average for honesty and ethical standards, research suggests that nurses also have difficulty in talking with patients about end of life issues. Younger nurses and those who work in fields other than oncology may face struggles in talking about end of life issues.3 End of life care in the hospital setting, particularly a high-intensity critical care unit, can be emotionally exhausting for a nurse, who may be diverted from the needs of another seriously ill patient to attend a grieving family.


There is a great need for education in end of life care, which may be most perceptible at the bedside, as nurses witness the profoundly intimate moments between patients and families. Kathleen A. Gould, PhD, RN, states, "This is the essence of caring for patients[horizontal ellipsis]understanding what matters to them," says Gould, "[horizontal ellipsis]we must talk to people about their wishes when they are healthy and able to communicate" (KA Gould, personal interview, March 2016). As a critical care nurse, Gould cared for many patients who were too ill too communicate and watched families struggle to make decisions for their loved ones. Chances to have discussions about the wishes of patients were one of the many things lost within a fragmented healthcare system. Healthcare reform was needed, along with a more person-centered approach to care, including end of life care. "I knew that something was broken, [horizontal ellipsis]I chose to go back to school; maybe to figure out my part in fixing the system" (KA Gould, personal interview, March 2016).



Fortunately, the system is changing. Reimbursement for advanced care planning services from the Centers for Medicare and Medicaid Services, along with initiatives for healthcare facilities, presents a range of opportunities for nurses at all levels of educational preparation to lead the way in beginning conversations about end of life issues. Nurses can access a variety of resources to acquire training in improving end of life care planning, specifically including topics such as how to initiate conversations about patient wishes. Nurses can become the experts in improving end of life care experiences for families across populations and healthcare settings.


The growing need for attention to the end-of-life experience in America was addressed by the Institute of Medicine in its report entitled Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.4 Nurses can play a key role in addressing the multiple circumstances known to increase the distress of families in end-of-life experiences. The frequency of transitions between home and hospital for the patient, the demands upon families to serve as primary caregivers for loved ones, and delays in referrals to palliative care services that could better equip families to provide adequate end of life care have all been cited as factors that diminish end of life experiences for families.4 Participating in additional training, as suggested by the Institute of Medicine, on ways to promote conversation about wishes for advanced care planning, using culturally diverse methods, and at more frequent intervals is necessary to ensure that patient wishes for treatment are met.4 There are questions that simply must be asked; the nurse who is able to initiate difficult conversations about end of life issues with patients and families will have expanding opportunities to provide patient-centered, compassionate care, while improving clinical skills in the complex world of healthcare.



The Institute for Healthcare Improvement (IHI) is an agency dedicated to the improvement of health and healthcare worldwide. The IHI is committed to the sharing of evidence-based knowledge in its Open School, an innovative, online collection of interprofessional education resources designed to serve as a hub for global interdisciplinary healthcare professionals (Table). The IHI's commitment to providing better healthcare extends to all aspects of population-based healthcare, including end of life care.

Table. Resources for... - Click to enlarge in new windowTable. Resources for Further Use

The IHI is a strong supporter of the Conversation Project, a Boston-based effort cofounded in 2010 by Ellen Goodman and Len Fishman, intended to initiate discussions about individual's wishes for end of life care and to ensure that those wishes are respected. Improvement science is a strategy used by the IHI to foster and sustain rapid improvements in healthcare outcomes and to equip healthcare providers with needed skills before entering the healthcare workforce (Table). These tools can be readily adapted for use in nursing curricula.



Gould's experiences in patient care helped to clarify her understanding of the obstacles to providing adequate end of life care. Using tools offered by the IHI, Gould was able to incorporate the language of "what matters" into her role as a clinical educator for students when she was approached by a student with a similar commitment. Gould explains, "A student within our network approached me and asked me to join her in the IHI I-CAN course, a community action network course. Through the I-CAN course we learned how to organize people who were passionate about healthcare improvement" (KA Gould, personal interview, March 2016). The student-led group began educating students and expanded discussions about end of life care to the college community, focusing on ways to initiate conversations about end of life decisions. The I-CAN group led a campus-wide book read and discussion on Being Mortal to kick off the project. Later, again using tools available from the IHI, the group designed simulation exercises to encourage students to begin conversations about end of life care. Students created scenarios and led role-playing sessions that allowed them to experience the need both to communicate and receive advanced care planning information. "Improvement science refocuses us to understand that the essence of caring for patients is understanding what matters to them," says Gould, "[horizontal ellipsis]we must talk to people about their wishes. Through IHI we have learned to ask patients, 'What matters to you?' rather than, 'What is the matter with you?'" (KA Gould, personal interview, March 2016).


As Gould and her students were beginning the I-CAN project, they were inspired by the work of Atul Gawande, The Conversation Project, and the person-centered approach that was sweeping healthcare. At the same time, many were involved in a public awareness effort called the Ice Bucket Challenge, an online fundraising campaign to raise funds for amyotrophic lateral sclerosis (ALS) research went viral, raising $15.6 million.5 The patient who inspired this movement is a Boston College graduate. "This was a watershed moment for the group, [horizontal ellipsis]we needed something like the Ice Bucket challenge; which was a wake up call to awareness for amyotrophic lateral sclerosis. We needed a wake up call to encourage us to talk about what matters to patients" (KA Gould, personal interview, March 2016).


"Using the Conversation Project has helped nurses understand how to talk to patients," says Gould (KA Gould, personal interview, March 2016). Considering what the patient wants and needs is integral to patient care and a fundamental component of nursing education that must begin with the earliest courses in nursing. "The IHI is exceptionally deep in resources, and their website contains toolkits on how to initiate the Conversation Project, along with resources for healthcare facilities on becoming Conversation Ready," states Gould (KA Gould, personal interview, March 2016). (Table). As a follow-up, students were asked to use the conversation starter toolkit to begin discussions with their own families.


Resources from IHI and The Conversation Project help healthcare providers understand how to talk to patients about care decisions. Other materials are available for healthcare providers. The Serious Illness Care Program, developed by Ariadne Labs, is accessible online for patients and healthcare providers to facilitate conversations between patients, families, and healthcare providers.



The commitment to patient-centered care and improvement in communication about end-of-life wishes has been reinforced by changes in healthcare policy. For the first time, reimbursement is available for healthcare providers who take the time to have conversations with patients about their wishes for end of life care. Current procedural terminology codes 99497 and 99498 are used to designate advanced pare planning services provided for patients. Advanced practice nurses who initiate discussions on advanced care planning with patients are now able to receive reimbursement for these services. As of January 1, 2016, Voluntary Advance Care Planning is defined as "[horizontal ellipsis]the face-to-face service between a physician (or other qualified healthcare professional) and the patient discussing advance directives, with or without completing relevant legal forms".6 Time is billed in 30-minute increments, and revenue can be captured for both inpatient and outpatient settings.



Hospitals and other healthcare facilities are participating in patient-centered care initiatives to improve end of life care by extending The Conversation Project into multiple care settings. The Conversation Ready initiative, launched by IHI in 2013, extends the concepts of patient-centered care and communication about end of life planning into healthcare facilities. Early capture of information on advance care planning, engagement, and conversation with patients and families and a commitment by facility leadership to discuss their own preferences for end of life care are factors that have been identified in the 10 pioneer organizations as key to success of integrating the Conversation Ready project.7 Gould continues to be a strong supporter for introducing end of life care initiatives at the bedside in acute care settings and featuring these for other nursing colleagues and healthcare providers.8 By beginning discussions on difficult topics, offering compassionate care, and being unafraid to address concerns of patients and families, nurses can play a significant role in improving the delivery of healthcare for seriously-ill patients. "If I was an administrator, I would want to institute 'what matters?' rounds upon admission, before discharge, and routinely as patients and families face care decisions. It's important to ask the patient what matters to them" (KA Gould, personal interview, March 2016).


An interview with Dr Kathleen Gould is available as Video, Supplemental Digital Content 1,




1. US Department of Health and Human Services AfCL, Administration on Aging. Aging into the 21st Century. 2015. Accessed March 22, 2016. [Context Link]


2. Gawande A. Being Mortal: Medicine and What Matters in the End. New York, NY: Holt and Company; 2014. [Context Link]


3. Moir CRR, Martz K, Perry J, Tivis L. Communicating with patients and their families about palliative and end-of-life care: comfort and educational needs of nurses. Int J Pall Nurs. 2015;21(3):4. [Context Link]


4. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2014. [Context Link]


5. Sifferlin A. Here's how the ice bucket challenge really started:; 2014. Accessed April 2, 2016. [Context Link]


6. Department of Health and Human Services, Centers for Medicare and Medicaid Services. MLN Matters(R) Number: MM9271. 2015. edicare-Learning-NetworkMLN/MLNMattersArticles/downloads/MM9271.pdf. Accessed April 2, 2016. [Context Link]


7. Gunther-Murphy C, McCutcheon AK, McCannon J. Is your organization "conversation ready"? Healthcare Executive. 2013;28(4):3. [Context Link]


8. Gould KA. A Conversation for the Holidays: Part II "What Matters to You". Dimensions in Critical Care Nursing. 2015;34(6):4. [Context Link]