End of life Conversations and Remembering Grace Order Instructions: Introduction by Maureen Boshier, Editor
Remembering Grace: A Personal Reflection on Death and Dying by Donna M. Nickitas and Barbara Cohen
Innovation in Palliative Care Delivery: A Historical Case Study Yields Key Drivers of Successful Implementation by Dorothy L. Faulkner, Elke H. Rockwell, Donna Stevens, and Daniel E. Ray
The Conversations We Should Be Having Now by Revathi A-Davidson
Now & Then: The Evolution of Advance Care Planning by Joan McIver Gibson
Legislative Initiatives and Policies: Video Roundtable with Joan McIver Gibson, Rob Swartz, Nancy Guinn, and Revathi A-Davidson
A Thanatologist’s Point of View by Deborah Golden Alecson
Acknowledgements, Commenting Policies, and other fine print
Introduction
“Do not go gentle into that good night, rage, rage against the dying light” written by Dylan Thomas and published in 1951, and often quoted because it captures so much of the human response to ending of life. The need to be the one to call the shots, the need to have control of the elements and the surroundings, it’s all there. We should want to support that need in our patients, families, and loved ones, yet we often do not know how to do that. Professionally and personally we have to learn new ways to have the conversation about what will happen and what we want to happen at the end of our days.
This issue of N21 has already resonated with early readers, and a conversation about any and all of the articles has begun and will continue with each reading.
In this issue:
Donna M. Nickitas, PhD, RN, Professor Hunter College, City University of New York Hunter-Bellevue School of Nursing, has written (with Barbara Cohen) a personal reflection drawn from the recent loss of her sister and her sister’s end-of-life care, looking at how her roles as a nurse and a sister blurred, and the value of a caregivers support system. Donna is also the editor of Nursing Economic$, which published a special issue in 2012, How Can We Afford to Die?
Dorothy Faulkner, PhD, MPH, PMP, Faculty, Master of Public Health Program, Eastern Virginia Medical School, Old Dominion University, along with three colleagues who are working with her, writes on new and innovative models for integrating palliative care into clinics and home-based programs of care.
Revathi A-Davidson, MA MPH, introduces the Institute for Healthcare Improvement’s “The Conversation Project,” which is based on the work of Ellen Goodman, a Pulitzer Prize-winning journalist. Specifically, The Conversation Project addresses―and Revathi discusses―how the precepts of the project might apply to preparing individuals, including nurses (often the ones speaking with patients and families) and other care givers to sort through what’s important when faced with serious, limiting illness. The Conversation Project plans to nationalize their work using state-level Project Chapters. This is a “how to” piece, and will include examples of successful health system initiatives that engage the community in The Conversation.
Revathi also conducted two interviews, one with Ellen Goodman, about her reasons for starting The Conversation Project, and one with Kate DeBartolo, the national field manager at The Conversation Project.
Dr. Joan McIver Gibson is a well-known bioethicist and national speaker and has written a personal piece that weaves her professional work of the past 30+ years together with her personal journey living with someone with a serious illness. The article includes her recommendations for preparing care givers to really give care. Joan has published two useful books, A Field Guide to Good Decisions: Values in Action (2006), and Pause: How to Turn Tough Choices into Strong Decisions (2013).
Dr. Gibson also facilitates a video conference discussion with Rob Swartz, Nancy Guinn, and Revathi A-Davidson about legislative initiatives, attitudes, and policies surrounding end-of-life care and includes commentary on the 2014 IOM report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.
Rob Schwartz is an attorney and professor emeritus of Law at Stanford and UNM. Widely published and recognized as an expert in administrative law, bioethics, health law, and legislation. A discussion about current law regarding advance directives and health care decision making, progress on barriers, and current social practices is included.
Nancy Guinn, MD, is a family practice physician and medical director of Presbyterian’s hospice program in Albuquerque, New Mexico. She completed a post doctoral fellowship in Palliative Medicine at the VA in Palo Alto and Stanford, and is now heading New Mexico’s Medical Orders for Life-Sustaining Teatment (to document by protocol patient’s preferences for end of life care).
To end the issue, Deborah Golden Alecson, a thanatologist and adjunct faculty at Excelsior College, shares a recent public radio interview on manifestations of grief, loss, and the Death with Dignity Initiative.
Our thanks to all these talented professionals for helping frame a conversation to move on these important changes.
Remembering Grace: When the Personal and the Professional Collide
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, sensitivity, and an understanding that life fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
Elisabeth Kübler Ross
The conversation about death and dying becomes different and more mindful when it transitions from health care by a professional to personal care by a loved one. For me, the professional and personal collided when my elder sister, Grace, was diagnosed with cancer.
Donna’s sister, Grace.
As a nurse and an editor, I was an early champion who encouraged, supported, and provided a forum to discuss the dying process in a special issue of Nursing Economic$ The Journal for Health Care Leaders, entitled, How Can We Afford to Die? (Nickitas, D.M., 2012). Within this special issue, the focus was on cost, quality, and access to palliative and hospice services, and the best evidence on end-of-life care. My editorial, “The Dialogue about Death and Dying: It’s Time” (Nickitas, D.M., 2012) opened the dialogue on creating opportunities for experts to discuss the critical issues at the end of life, including care and costs. However, when it came to discussing the dying process with my own sister, I was lost for words. The dialogue was too personal, painful, and fraught with fear.
A Personal Reflection on End of life Conversations and Remembering Grace
When Grace became seriously ill, the imperative around death and dying was no longer just a professional one concerning how to deliver and provide pain management and symptom relief, but rather how best to provide safety, security, and support for Grace, my family, and myself as we addressed end-of-life care issues. Suddenly, there was a mismatch between what my sister (the patient) and my family needed and the actual services available. Her care coordination meant that I had to reach into the depths of my professional resources and networks to find supportive nursing and social services. In my clinical capacity, I could help her when she had difficulty swallowing, care for the sores in her mouth, and use my network to get her home care. But when it came time to say to her, “You’re dying,” I could not speak the words. My eyes simply filled with tears as my hands touched her body to soothe her pain and reassure her of my love. With small gestures, I learned to communicate my enduring love and recognize that death was nearer than either of us was ready to accept.
As hard as I tried to change the narrative from pure medical treatment (i.e. cure) to care coordination and pain management, it was difficult to reach beyond medical intervention of ‘doing whatever it takes to treat the cancer.’ It was not until the very end, when Grace’s body gave way to the disease process, that palliative care was considered. I learned the hard way―through painful, personal experience―that sustained efforts are needed to change the private narrative to a public one, where palliative care is not about dying or ‘losing hope’ but rather learning to live with a serious illness. To achieve this requires what Sarah Lochlann Jain calls an “Elegiac Politics,” which “argues for pushing the private face of cancer culture―grief, anger, death, and loss into the public cultures of cancer―… with the recognition of the enormous economic profits and gains that parallel these losses” (2007).
Too many times, family goals and preferences are at odds with those of the providers. Patient-centered and family-oriented care is about encouraging early conversations about advanced planning and palliative services. So many families are still left in the dark about how to ask for help and guidance on coordinating advance planning and how to begin a conversation about dying. The newly released report issued by the Institute of Medicine, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life(IOM, 2014), creates new opportunities for national conversations about dying in America. It emphasizes the advancement of palliative care and its integration into life-prolonging and disease treatment. It calls for new payment systems by public and private insurers to encourage health care providers to discuss issues like advance planning so as to enhance a patient’s quality of life and make costs for the health care system sustainable. The report summary materials are available on the IOM website (IOM 2014) and the full report is available as a free download (IOM, 2014).
The Difficult Conversation End of life Conversations and Remembering Grace
End-of-life conversations frequently occur at just those moments in time: at the end of an individual’s life. At a time when that individual is most vulnerable, at a time when family members’ strength is sapped and hearts are broken. A timely interview with Diane Meier in the Wall Street Journal provides the straight talk about palliative and end-of-life care (Sadick, B., 2014).
I waited too long, out of fear and anxiety, to discuss dying with my own sister. Dying in America is difficult and increasingly characterized by a long-term progression of chronic conditions. There is a great need for integration of medical and social services (and payment for such), support for caregivers and ramping up of palliative care services. As a society, we are still not at ease discussing or preparing adequately for death. When death and dying were at my doorstep, I had real difficulty discussing end-of-life care openly with my own sister.
Grace’s medical team was committed to providing state of the art cancer treatment to manage her symptoms, yet failed to prioritize her daily quality of life and well-being. The conversation should have been on advance care planning and preparation for in-the-moment treatments and improved ways to enhance quality patient-clinician interactions. The medical complications and side effects of chemotherapy were often confusing for Grace and her family; this was due in large part due to the representation of treatment as effective and worthwhile, and of the cancer as treatable. At no point did Grace’s physician say that the cancer was more than likely terminal. Finally, after an invasive procedure in which 2500 ccs of fluid were removed from her lungs, Grace was told that there was nothing more that could be done. I believe that conversation could have happened 6 months earlier―allowing a transition to the management of symptoms and palliative care.
It is crucial to encourage patients and their families to have discussions on advance planning prior to any illness or medical crisis. Health care providers must facilitate these difficult conversations and attend to the legal issues involved with end-of-life decisions, so that the hopes, dreams, and wishes of all concerned parties are understood. This allows the caregivers clearer insights for care choices. Clarity of choice allows caregivers to focus on supporting patients and family members rather than wrangling with unknowns.
There are laws in every state that provide for options such as health care proxies, advance directives, which provide an opportunity for individuals to select an agent to make wishes on their behalf, should they be unable to speak for themselves. New York State has enacted a Medical Order for Life Sustaining Treatment (MOLST), with similar but not equivalent forms in other states, known as Physicians Orders for Life Sustaining Treatment (POLST) or Medical Orders for Scope of Treatment (MOST). These forms allow ongoing conversations amongst patients, caregivers, and family members about end-of-life decisions including DNR, DNI and other treatment options as patients’ chronic conditions change. Discussing who will handle financial matters, such as transfer of real estate and debts, can be managed through use of various powers of attorney or other legal options. Each of these options allows individuals to control their own destiny long before end-of-life decisions become urgent. By attending to these matters, individuals are free to manage feelings, attend to grief, and to provide comfort to each other, rather than spending time in attorneys’ offices, courthouses, legislative arguments, or sitting before ethics committees, as we saw in landmark cases such as Karen Ann Quinlan (70 N.J.10, 1976), Nancy Cruzan (497 U.S. 261, 1990), and Terri Schiavo (780 So. 2d 176, 180, Fla.Dist.Ct. App. 2001).
As a professional, I could easily speak about the importance of advance planning. A recent WNYC interview with Dr. Meier explains how health care is broken and fails to serve the needs of dying patients. However, when the circumstances changed and my own sister, Grace, was dying, I was suddenly filled with fear and consumed by my personal suffering. As the nurse-sister, my roles were often blurred. I tried to do both but could not do so effectively. I now realize that nurses as caregivers and family members need their souls and spirits restored in the face of loss. Nurses frequently care for others at the expense of their own personal physical, mental, and spiritual health. They very seldom pause and reflect upon the toll that death takes upon them.
Care Giver Grief and Support End of life Conversations and Remembering Grace
Remembering Grace offers a lesson in humility, but it also teaches a lesson about self-care, reminding us, in the words of Elisabeth Kübler-Ross, that we are never alone: “The sole purpose of life is to grow. The ultimate purpose is how to love and be loved unconditionally” (1997). Seen through the eyes of two nurses―one who experienced the personal loss of a sibling, and the other, who came to her aide, this reflection illustrates how nurses who are healers to their patients can be healers to one another. As Carton & Hupcey suggest, unaddressed grief may lead to increased levels of stress, compassion fatigue, burnout, decreased job satisfaction, and physical and psychological symptoms (2014).
Following my sister’s death, I did not recognize how I was functioning on auto-pilot while managing Grace’s terminal illness. It was my former doctoral nursing student/mentee, now my colleague, Dr. Barbara Cohen, who saw my grief and brought it to my attention. She attended the wake, sat quietly and observed our traditional Catholic mourning rituals (she is Jewish) and in the end offered her support by “sitting shiva” with me. She knew well the cultural benefits of sitting shiva, a ritual that had benefited her following the death of her beloved grandparents and parents. This caregiver support unfolded in daily visits to my office, lunch and coffee, and assistance with my pile of projects, which had been left undone for several weeks. Barbara came faithfully every day for a week. Her daily arrival created a support model of nourishment, attention to my needs for concentration, and social support. Each day we spoke of Grace, of her life, her illness, her family and of my relationship as her sister. As the days went on, my spirits lifted. I felt lighter. The pile of work diminished. My appetite improved, tempted by the little lunch treats. By accepting this caregiver support, I opened up to being supported and to supporting; to being loved and loving; to being cared for and caring for others. It was an immense relief.
At the end of the week’s time, I learned as the mourner I was being sent gently out to rejoin the world at large (Lamm, M., 2000). In the process, my grief was experienced in an environment of loving-kindness and my mentee became my colleague. By combining faith traditions, I was blessed with the best of both worlds. Grace’s wake and funeral were the services of my heart, of my family, of my heritage. The framework that supports mourners in the Jewish tradition shaped the days spent in my office. Mourners are cared for, they are fed. Conversation is, at first, kept to a minimum and then, focuses upon the recently departed loved one.
End of life Conversations and Remembering Grace on What Remembering Grace Can Teach Us
Reflection is the restoration of strength. It takes real leadership, courage, and commitment to have the dialogue about death and dying. Remembering Gracereminds us that as caregivers/health providers it is difficult to bring urgency and action to end unnecessary suffering and create solutions when the dying person is our own family member. However, it underscores why this dialogue about death must occur prior to an individual’s end of life. For me, I can now express openly the need for nurses and other health providers to have the courage to talk openly about human suffering, pain, death, and dying. Grace’s death has helped me to recognize the importance of being comfortable with thinking and talking about death and dying. The IOM report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life provides a national strategy to solidify this dialogue.
For the caregivers and those who come to their aid during end of life, it is the small gestures of swapping a day off, donating a sick day to a colleague who needs a day off to recover from a loss, bringing some food to share, walking with a colleague around the hospital grounds, sitting with them in hospital gardens, giving permission to a colleague to accept loving support when offered makes all the difference. These suggestions require little, simply the intention to be open to healing ourselves and to healing each other. Thoughtful introspection and commitment fosters self-healing, the ability to accept help when needed, and humility. Remembering Grace is my story of personal healing. For regardless of my professional expertise, death will come. As health professionals, are we ready to improve the quality of the dying in America and can we honor their individual preference? We will only know if we ask.
End of life Conversations and Remembering Grace References
Carton, E.R. & Hupcey, J.E. (2014). The Forgotten Mourners. Journal of Hospice & Palliative Care, 16(5). 291-303.
Institute of Medicine (2014). Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The national Academies Press.
Institute of Medicine (2014). Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, Key Findings and Recommendations. Retrieved fromhttp://www.iom.edu/~/media/Files/Report%20Files/2014/EOL/Key%20Findings%20and%20Recommendations.pdf
Institute of Medicine (2014). Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Retrieved fromhttp://www.nap.edu/catalog.php?record_id=18748
Jain, S.L. (2007). Living in Prognosis: Toward an Elegiac Politics.Representations, 98, 89.
Kübler-Ross, E. (1997). The Wheel of Life: A Memoir of Living and Dying. New York: Simon & Schuster.
Lamm, M. (2000). The Jewish Way in Death and Mourning. New York: Jonathan David Publishers.
Nickitas, D.M. (2012). How Can We Afford to Die [Special Issue]. Nursing Economic$, 30(3).
Nickitas, D.M. (2012). The Dialogue about Death and Dying: It’s Time. Nursing Economic$, 30(3), 122-147.
Permission granted by WNYC to link to “Dying in America: Rehauling the Nation’s End-of-Life Care System.”
Expanded Bios
Donna M. Nickitas, PhD, RN, NEA-BC, CNE, FNAP, FAAN, is the Executive Officer of the Doctor of Philosophy in Nursing Program at the Graduate Center, City University of New York. She is also a Professor in the Hunter-Bellevue School of Nursing at Hunter College. She is the editor of Nursing Economic$, Journal for Health Care Leaders.
Barbara Cohen is a professor of health service management at Berkeley College in New York City. She has many years of experience in community health and psychiatric nursing as well as 20 years of experience in healthcare related litigation and risk management matters.
Innovation in Palliative Care Delivery: A Historical Case Study Yields Key Drivers of Successful Implementation
Dorothy L. Faulkner, PhD, MPH
with
Elke H. Rockwell, PhD, MSS
Donna Stevens, BS
Daniel E. Ray, MD, MS
Abstract
Multiple chronic conditions are often associated with adverse outcomes such as symptom-burden and functional decline, the domain of palliative care. As the U.S. population ages, the need for palliative care will increase. The uptake of health care innovations to meet this challenge is not as rapid as the pace of population change, and that is why there is urgency to understanding the macro- and micro-level factors that speed up the adoption process (Keown et al., 2014). In response, this article has four aims, to: (1) describe the population health dynamics behind the increasing demand for palliative care; (2) characterize how palliative care delivery is structured; (3) present a qualitative, historical case study illustrating the development and diffusion of an integrated system of care for patients of advanced complex illnesses; and (4) apply the Consolidated Framework for Implementation Research (Damschroder et al., 2009) to the case study, in order to systematically identify the key drivers of that diffusion.
Population Health Dynamics Driving the Need for Palliative Care in the United States
(Aim 1)
The population health profile of Americans has changed dramatically in the past century. For instance, in 1900, an American’s life expectancy was an average of 47 years. The three leading causes of death were infectious diseases: pneumonia and influenza; tuberculosis; and diarrhea and enteritis. Illness and disability were common at every age, and death came abruptly (Gordis, 2014; Lynn & Adamson, 2003).
Today, advances in nutrition, housing, sanitation, education, lifestyle, and medical care have resulted in greater longevity. Americans now have a life expectancy of almost 80 years. Modern times have also paved the way, however, for chronic diseases to replace infectious diseases as the leading causes of mortality. Currently, the top three causes of death are heart disease, cancer, and lower respiratory disease (Friis & Sellers, 2009; Gordis, 2014).
Living with not only one, but two or more chronic conditions, or multiple chronic conditions (MCC’s), is now a reality for many older adults (Vogeli et al., 2007; Parekh, Goodman, Gordon, & Koh, 2011). In a nationally representative study, 71% of individuals who were 65 years of age or older had two or more chronic conditions. A subset of those persons (17%) was living with four or more chronic illnesses. The prevalence of MCC increased with age. Among those 65-69, the prevalence of MCC was 63%; whereas among those 75-79 years of age, the prevalence was 75% (Hung, Ross, Boockvar, & Siu, 2011).
The persistence and progression of MCC’s often result in a multitude of adverse outcomes, including mortality, symptom burden, depression, and physical disability. Cognitive function (including memory, orientation, thought, perception, reasoning and behavior) may also decline, contributing to inaccurate symptom reporting, delays or interference with treatment, and lower adherence to therapies (“Conditions”, 2012; Parekh et al., 2011). The effects of cognitive impairment and stroke in combination are synergistic, resulting in even greater disability (Vogeli et al., 2007).
With respect to health services utilization, data suggest that individuals with MCC’s use more services than other consumers of care. Among Medicare beneficiaries, the number of different physicians seen annually ranges from four (among patients with one chronic condition) to 14 (among patients with five or more chronic conditions). As the number of providers increases, so does the difficulty for patients in understanding, remembering, and reconciling their providers’ instructions. In addition, because patients with MCC’s take more medications, they are more likely to suffer adverse drug events (ADE’s), including ADE’s from drug-drug interactions (Vogeli et al., 2007; Benjamin, 2010). As the number of chronic conditions increases, so do the rates (per 1000 Medicare beneficiaries) of avoidable inpatient admissions and preventable complications that are incurred during hospitalization (Wolff, Starfield, & Anderson, 2002; Benjamin, 2010).
On a social dimension, individuals with MCC’s may require a great deal of family or caregiver support (“Conditions”, 2012), and the caregiving role has all the features of a chronic stress experience. It creates physical and psychological strain over extended periods of time; it is accompanied by high levels of unpredictability and uncontrollability; and it can create secondary stress across other domains of life. As a result of these stressors, the caregiver may experience harmful effects such as psychological distress, negative health behaviors, psychiatric illness, physical illness, and even death (Schultz & Sherwood, 2008). Many factors influence caregiver burden, such as the patient’s type of illness, the stage of illness, the level of care-needs and the specific care functions required (Emanuel, Fairclough, Slutsman & Emanuel, 2000; Grunfeld et al., 2004). Dementia, for example, is considered to place a particularly heavy burden on the caregiver (Schulz & Martire, 2004). No matter what the specific diagnosis, the impact on the caregiver can be significant and calls for a response from the medical community (Emanuel et al., 2000).
The chronic disease landscape just described is complicated by the fact that the number of older Americans will continue to grow at an accelerating rate. In 2020, there will be an estimated 55 million Americans aged 65 years or over. By 2050, that number is estimated to climb to over 88 million (Vincent & Velkoff, 2010). This rising number of people who will be facing old age makes it likely that supporting elderly persons with MCC’s will be a major challenge for health care in the next half-century (Lynn & Adamson, 2003).
Palliative Care as a Response
(Aim 2)
In its broad definition palliative care is specialized medical care for people with serious illness. The focus is on providing relief from the symptoms, pain and stress associated with significant illness, and improving the quality of life of patients and their families. It is prognosis-independent, appropriate at any age and any stage in a serious illness, and can be provided together with curative treatments. Palliative care is team-based and involves doctors, nurses, social workers, spiritual counselors and other specialists who work with a patient’s other physicians and healthcare workers to provide an extra layer of support (2011 Public Opinion Research on Palliative Care, 2014).
Until fairly recently, palliative care services were mainly available to patients who opted for hospice, a Medicare benefit for end-of-life care. This decision involved a physician-certified prognosis of six months or less and foregoing curative or life-prolonging treatments, with goals focused solely on maximizing comfort (Litrivis & Smith, 2011). For the growing number of patients with serious illness, who either did not qualify for prognosis-dependent hospice services, or who chose to forgo the hospice benefit in pursuit of further curative or illness-modifying treatment, or opted for hospice so late along the illness trajectory that they and their families derived little, if any, benefit from this type of care, there were limited options (Meier, 2014). Palliative care as a medical specialty in non-hospice settings emerged to address the needs of this patient population. Its indication is based on patient and family need, rather than the parameters of an insurance benefit or particular treatment choices. Over the past decade, palliative care has increasingly been included in the recommendations and practice guidelines of specialty societies.
Challenges Facing Non-Hospice Palliative Care Delivery in the Inpatient and Clinic-Based Settings
Kamal et al. (2013) published a summary article describing the evolution of the two dominant non-hospice palliative care delivery models in the United States, inpatient consultative palliative care, and outpatient palliative care clinics. Both approaches have demonstrated benefits, such as improved patient outcomes and satisfaction, cost savings, and decreased resource utilization. Both models, however, do have limitations.
For instance, with respect to inpatient consultative palliative care, hospital teams are not in a position to identify and address the longitudinal needs of patients across subsequent settings of care. Second, without exposure to the patient’s home and neighborhood surroundings, hospital-based clinicians may not be able to take into account the constellation of physical, emotional, logistical and financial stressors impacting the patient and family. Third, even within an inpatient consultation, the reach may be insufficient. That is, providers are often expected to assess, treat, participate in discussions of the goals of care, and conduct family meetings, all within a few days. Fourth, inpatient palliative care is frequently delivered during the period of functional deterioration, long after opportunities to engage early in the course of illness are missed.
Clinic-based outpatient models also face challenges. According to Kamal et al. (2013), they rely on patients’ ability to travel to clinic sites, have limited hours of operation, and depend on other providers’ referrals. In addition, many components of outpatient palliative care (such as mental health and nutrition support services) are inconsistently reimbursed across traditional fee-for-service practices.
After Kamal et al. (2013) detail the shortcomings of the current fragmented inpatient and outpatient palliative care service delivery system, they propose a comprehensive, community-based palliative care (CPC) model as an alternative. The acronym CPC is founded on three key principles that characterize care that is: 1) “consistent across transitions”, be they the result of a temporary symptom exacerbation, an overall change in health status or permanent relocation to another setting of care; 2) “prognosis-independent”, meaning, eligibility is to be determined by patient and/or caregiver need, irrespective of prognostic considerations, such as those imposed by payer thresholds, diagnosis or the concurrent pursuit of curative treatments; 3) “collaborative and coordinated”, delivered by an interdisciplinary team with a designated point clinician matched in palliative care skills to the patient’s needs and involved in the coordination of the patient’s care at all levels and in all settings. An indispensable component of this last principle is a centralized, continuously updated palliative care record that is accessible at any point of care and serves as repository for medication lists, physician orders, advance directives, treatment plans and other pertinent patient information.
Program Design in Context
The challenge for the CPC model, as for any model in any setting, is the translation from general principles into actual program design, implementation and sustainability. Moving from the conceptual to the concrete, the authors feature three programs that have provided a first glimpse at what the CPC model might look like in action (Brumley, Enguidanos, & Cherin, 2003; Rabow, Dibble, Pantilat, & McPhee, 2004; Bakitas et al., 2009). Each program has a distinct organizational characteristic. That is, one program operates in a framework of an integrated payer system (Brumley et al., 2003). The other identifies a particular staffing model (Rabow et al., 2004); and the third has a specific target population, namely patients with advanced cancer (Bakitas et al., 2009).
These early examples are “learning laboratories” that provide valuable insights, and contribute toward building an evidence base for a community-based palliative care delivery model. They also highlight the fact that “all meaningful change begins at the local level, and requires effective local leadership” (Meier, 2014). The following description of a palliative care service focuses on this interplay between “concept” and “context” in the development, implementation and growth of an integrated program.
Historical Evolution of OACIS/Palliative Medicine (Optimizing Advanced Complex Illness Support)
(Aim 3)
OACIS/Palliative Medicine (hereafter referred to as OACIS) of the Lehigh Valley Health Network (LVHN) in Allentown, Pennsylvania, allows access to palliative care through three closely connected service branches: (1) an inpatient consult service; (2), a home-based consult service; and (3) an outpatient palliative care clinic located in the cancer center. Each service branch operates in its distinctive environment with differing demands and priorities, but shares a common vision and mission, works under an umbrella of shared medical and administrative leadership, jointly defines quality goals (Rockwell, Stevens, & Ray, 2013) and supports service delivery across the palliative care continuum.
OACIS is situated in a large, private, not-for-profit health care system that serves a population of 837,859 in its primary service area and 2,154,633 in its secondary service area. Its demographics include four hospital campuses with 1,161 acute care beds, 136 physician practices, 17 community clinics, a network-owned home care and hospice program, and a provider workforce of 1,340 physicians and 582 advanced practice clinicians. In its role as an academic community hospital, LVHN shares in the education of medical students through its collaborative relationship with the University of South Florida Medical School, offers a residency training program, several accredited fellowship programs, among them in Hospice and Palliative Medicine, and supports the Office of Health Systems Research and Innovation (OHSRI) and the Network Office for Research and Innovation (NORI) with an accredited institutional review board (IRB).
Non-hospice palliative care was first introduced to the network in 1999 through a physician leader who recognized the need for palliative care in the inpatient setting and obtained a grant from a local foundation to start a hospital-based palliative care consult service using the nurse practitioner model. This initiative did not gain traction due in part to limited resource allocation; services were discontinued three years later. However, this first pilot was instrumental in fostering culture change by familiarizing physicians, advanced practice clinicians, and nursing staff in the hospital with the core principles of palliative care through multiple educational opportunities. It also introduced palliative care to patients and families in one-on-one education that resulted during the consults. These activities combined played a significant role in removing many of the myths and fears surrounding palliative care. Once nurses, physicians, and other medical staff better understood the purpose and benefits of palliative medicine, they were more willing and prepared to accept the next stages of palliative care as it evolved in the network.
Only two years later, in 2001, another physician leader obtained a grant from a national foundation to integrate a palliative care model for patients admitted to the medical intensive care unit. While the number of affected patients was relatively small, again significant efforts were made to raise awareness about the role of palliative care in non-hospice settings through educational events for critical care physicians and nurses, residents, patients and families and the larger hospital community (Ray et al., 2006).
A year later palliative care had risen to a level of interest in the network that an advisory group, representing champions from multiple disciplines, departments and services, was established to coordinate activities and promote palliative care through an exchange of ideas and information. By 2003, palliative care related projects increased noticeably and began exploring new territory: 1) the same physician/nurse practitioner team that had initiated the inpatient consult service in 1999 launched a home-based palliative care service to make palliative care available to community-dwelling patients recently discharged from the hospital. The service was administratively housed in the network-owned hospice program; 2) the oncology service obtained funding for the development of a nurse-practitioner-based palliative care service component; 3) the network’s practice-based research network EPICnet (Eastern Pennsylvania Inquiry Collaborative Network), a collaborative effort between the Department of Family Medicine and the OHSRI, administered a needs assessment survey to primary care practices. Chronic illness management was identified as one of the most pressing concerns.
In response, a pilot project called “Community Care for Complex Illness” (3CI) was launched in 2005 by physician leaders in the Department of Family Medicine, after funding had been procured from a local foundation. The project linked a specialized palliative medicine house call service staffed by nurse practitioners with seven primary care practices in the co-management of patients with advanced complex illness (ACI). This pilot was the starting point of what was to evolve into the home-based service branch of OACIS. The network’s Physician Hospital Organization provided important support that facilitated practice integration. Also in 2005, the network participated in the IHI Chronic Illness Collaborative. This effort resulted in a significant amount of cross departmental collaboration between the departments of Internal Medicine, Family Medicine and the Division of Education. Furthermore, the chronic illness model influenced some of the structural features of 3CI.
Prior to the network committing to the support of a palliative care service, it held a Future Search meeting (Future Search, 2014) in early 2006, bringing together a broad range of stakeholders: physicians, nurses, allied health professionals, patients, families, administrators, network leaders, payer organizations, and community agencies to assess the status of chronic illness care in the community and create a shared vision of optimal health care for patients with serious and chronic illness. Following this community-wide needs assessment, LVHN announced a new strategic initiative that created one platform for all palliative care efforts and culminated in the establishment of OACIS in September 2006. The new program comprised a specialized palliative medicine inpatient and a home-based consult service. At the time, the home-based service was unique in its construct and designed specifically to support patients with ACI living at home or in an assisted living facility. The many projects and initiatives described above were harbingers of a slowly emerging culture change in the United States with respect to the role of palliative care in the health care system.
Within the network, continued culture change was significantly aided by the establishment of the Palliative Medicine Scholars program called PalMS (Hirschmann, Ray, & Foster, 2011) in 2009. PalMS was an educational forum that allowed clinicians from all disciplines to come together and learn from each other about the core principles of palliative care, develop a common language, exchange experiences, strengthen goals and purpose, and provide a safe environment for processing. This educational initiative continued the work of developing palliative care champions in the network, a process that began with the early educational efforts and the creation of the palliative care advisory group. Additional education opportunities for the wider community were provided through four symposia between 2005 and 2014.
In 2009, culture change was also promoted through the development of an electronic communication tool called GOALTX dictation type, a collaborative effort between palliative medicine and information services (Lukas, 2010). GOALTX allowed any provider, inpatient or outpatient, with access to the network EMR to communicate the salient points of a “goals of care” conversation with patients and families, thereby facilitating any subsequent care encounter, including in the emergency department. A referral to palliative medicine was not required for a GOALTX completion.
In the summer of 2009, LVHN was one of six health networks selected to participate in the Medicare Innovations Collaborative (MED-IC). The other members of the Collaborative were: Aurora Health Care, Inc. (Milwaukee, WI), Carolinas Health Care Systems (Charlotte, NC), Crouse Hospital (Syracuse, NY), Geisinger Health Systems (Danville, PA) and University Hospitals Case Medical Center (Cleveland, OH). The goals of the collaborative were to improve the care of frail and complex patients by expanding the use of evidence based programs, one of them being palliative care, to create a centralized service line and contribute to the policy debate on improving health care for this population (Med-IC, 2014). The project was funded by The Atlantic Philanthropies (Leff, et al., 2012).
In 2012, the network added a palliative care outpatient clinic (PCOC) located in the cancer center to continue the integration of oncology and palliative care, an effort that had initially been supported by a grant. The PCOC further expanded access to palliative care for patients in the ambulatory setting. Full institutionalization of palliative care at LVHN occurred with the establishment of an ACGME (Accreditation Council for Graduate Medical Education) approved Fellowship program in Hospice and Palliative Medicine in 2011 and the establishment of the Section of Palliative Medicine and Hospice under the Department of Medicine in 2012. A constant guide throughout the development of OACIS has been the technical support and access to tools and resources made available by the Center to Advance Palliative Care (CAPC).
Structural changes in administrative alignment, new network goals and new institutional relationships have all impacted the palliative care service branches. In the early years, OACIS was administratively housed in the Division of Home Health Services that also included homecare and hospice. This proximity fostered a shared understanding of the scope of practice of each service and the development and articulation of collaborative relationships as, for example, the referral of patients discharged from the network-owned hospice (back) to the home-based service. Through the administrative alignment with the Department of Medicine there has been an increase in joint quality projects. A collaborative effort with the medical ICU’s led to an increase in inpatient consults. Growing collaboration with Oncology has impacted referrals to the home-based service. Finally, LVHN recently entered into an alliance with six other regional hospitals and health networks in New Jersey and Pennsylvania (AllSpire). The first joint endeavor is a focus on advance directives, in particular education on the POLST (Physician Order for Life Sustaining Treatment) form. The home-based visit by the nurse practitioner is an excellent time for patients to ask questions and consider goals of care and, if they choose, to complete a POLST form. In recognition of the leadership role OACIS has taken in the delivery of palliative care across the continuum, the program was named a recipient of the 2014 Circle of Life Award by the American Hospital Association (AHA).
Historical Evolution of the Home-Based Service Branch
A fundamental objective of the home-based program was and is closing the gap in access to palliative care for community-dwelling patients, especially those with mobility challenges. It also strives to make palliative care available irrespective of diagnosis and early in the trajectory of a serious illness to improve symptom management, reduce exacerbations, identify emerging health issues, promote patient/family understanding of disease status and prognosis, and support advance care planning based on the patient’s goals and values. At its inception in the fall of 2006, the OACIS home-based palliative medicine consult service was at the frontier of community-based non-hospice palliative care in the fee-for-service environment.
As already mentioned the home-based service was designed by primary care physicians and founded on closed collaboration with the patients’ primary care provider (PCP) in the coordination of care. These linkages evolved further with the growth and development of patient-centered medical homes (PCMH) in the network and the integration of OACIS into the medical neighborhood. The design of the home-based service linked understanding of the social determinants of health with the availability of a locally funded, network-supported Time Bank (Time Bank, 2014) that had developed the expertise, procedures and policies to support people in the community in their efforts to stay well. The system is based on reciprocity, everyone contributes according to ability and everyone’s contribution is equally valued. The currency is “time credits”, not money. Patients and their families can share whatever services they are capable of rendering, thereby gaining a sense of purpose and inclusion. If direct participation is not an option, they can benefit through donated time credits to obtain access to services such as medication pick-ups, help with dog walking, meal preparation, and socialization, to name a few (Letcher & Perlow, 2009).
OACIS pioneered the development of a scorecard for the home-based service to identify and capture operational, financial and quality metrics (Stevens & McFadden, 2010). This scorecard is reviewed annually and reflects in any given fiscal year the chosen priorities based on program needs and network goals. The home-based service was recognized as a model program in 2011 by The Advisory Board Company Oncology Roundtable and a year later became one of the model programs featured in CAPC’s IPAL-OP Project. The website provides a detailed program description and operational data reflecting the status of 2011/2012.
Early effectiveness results were published by Lukas et al. (2013) based on 369 patients with advanced complex illness indicating a significant reduction in hospitalizations, cost and probability of a 30-day readmission in the 18-month period following enrollment. The probability of emergency department use was not reduced. In addition to positive health outcomes for patients and reduced cost of care, the OACIS home-based service also offers opportunities for an expansion of the role of nurse practitioners specializing in palliative care (Deitrick et al., 2012).
Interpretive Evaluation of the Historical Case Study, Informed by the Consolidated Framework for Implementation Research
(Aim 4)
Implementation science refers to efforts designed to move evidence-based programs or practices into use, via effective change strategies. The Consolidated Framework For Implementation Research (CFIR) offers a typology of factors that influence the adoption, diffusion, and sustainability of programs. It is “meta-theoretical”, in that it is a comprehensive synthesis of existing theories and constructs. The CFIR is composed of five domains: (1) intervention characteristics; (2) outer setting; (3) inner setting; (4) characteristics of individuals; and (5) process of implementation (Damschroder et al., 2009). The “intervention characteristics” domain refers to constructs such as complexity and trialability, the degree to which the intervention can be piloted before full-scale implementation. The outer setting influences adoption through several mechanisms. Key among them is the extent to which organizations place a priority on meeting patients’ needs. Assessment of the inner setting must take into account factors such as organizational structure, culture, and access to knowledge and information. Characteristics of individuals involved, such as self-efficacy and stage of change, also influence implementation. Finally, the fifth domain identifies roles and responsibilities in the change process, including those of opinion leaders and external change agents (Damschroder & Hagedorn, 2011).
In an interpretive evaluation of the evolution of non-hospice palliative care at LVHN in the context of implementation science, more specifically the CFIR, four antecedents emerge as foundational to the establishment and growth of OACIS; these are: (1) culture; (2) learning climate; (3) stakeholder engagement; and (4) broad-based needs assessments. While this does not mean that other constructs did not contribute to program implementation, it suggests that these four factors are perceived as the major driving forces.
Central to LVHN’s culture is the commitment to patient advocacy and innovation. In the late 1990’s, when engaged physician leaders in the organization recognized the gap in care for patients with ACI and their families and began to advocate for non-hospice palliative care, this field was in its early stages. Even at the national level, the idea of integrating the principles of palliative care into routine patient care was novel and yet to be fully understood. The institution’s basic philosophy combined with its maturity and size –the beginnings of what is LVHN today reach back to 1899, and the network currently employs over 13,000 people – provided the support structure for the early pilots.
A learning climate is a work environment in which members formally specify a problem to be addressed and plan an improvement activity (“plan”), execute the plan (“do”), analyze the results (“study”), then act upon the information (“act”). In addition, members feel psychologically safe in engaging in the aforementioned PDSA activities, team members feel that they are valued partners with knowledge to offer, there is sufficient time and space for reflective thinking and evaluation, mechanisms are in place to capture learnings, and new knowledge is codified for organizational consumption. Formal education is also offered; and it takes many forms such as mandatory training, learning-collaboratives, fellowships, and symposia (Damschroder et al., 2009; Damschroder & Hagedorn, 2011; Hovlid, Bukve, Haug, Aslaksen & von Plessen; 2012; ILot, Gerrish, Booth & Field, 2013). Based on these defining qualities, the LVHN has an extremely vibrant learning climate that contributed immensely to the successful implementation of OACIS.
The initial physician champions for non-hospice palliative care provided unique perspectives from different practice settings. Their knowledge, experience, commitment and motivation, combined with a growing set of objective data led to the coalescence of a stakeholder base within the network among clinicians from multiple disciplines, leadership, and administration. This stakeholder base by definition also included seriously and/or chronically ill patients and their families; and it eventually grew beyond the confines of the network to encompass community agencies and payers. Stakeholder engagement was the solid foundation for the strategic initiative and its success.
While a coherent narrative emerges in retrospect, the initial efforts were not organized at a network level. However, deliberate, data-driven planning and an interest in collaboration were part of the organizational environment. This encouraged activities such as the EPICnet survey, which provided a solid foundation for the understanding of provider needs in the care of the target population. It also inspired the Future Search, a community-wide needs assessment, which brought together a broad range of stakeholders from across the network and the community to define the needs of patients with serious and chronic illness and envision a health service delivery system that would meet those needs. It also provided the foundation for a network-wide approach to integrated palliative care across the continuum.
During the early years of OACIS implementation (given limited knowledge about, and evidence base for, non-hospice palliative care), culture and stakeholder engagement were vital. However, given the current climate of growing understanding and acceptance of non-hospice palliative care, CFIR constructs such as “external policies and incentives”, and “peer pressure” may constitute a somewhat stronger impetus for more recent palliative care initiatives, than they did in the establishment of OACIS.
In addition, the determinants that were important to the development andimplementation of this palliative care service may differ somewhat from those that are vital in sustaining and growing such a service. For example, CFIR constructs such as ‘knowledge and beliefs about an intervention’, ‘self-efficacy’, and ‘individual identification with the organization’ (Damschroder et. al., 2009) were certainly contributing factors during the implementation; but they have grown in importance as OACIS continues to strive to meet network goals. The messaging, credibility, and intrinsic motivation of the entire palliative care staff directly relate to the ongoing support and expansion of the program. Furthermore, the LVHN culture fosters the development of “opinion leaders” (individuals who have influence on the attitudes and beliefs of their colleagues) and “champions” (individuals who risk informal status and reputation to drive through an intervention) in the targeted areas of organizational growth, vital factors in the acceptance of, and participation in, shared goals (Damschroder et al., 2009).
In conclusion, multiple chronic conditions are often associated with adverse outcomes such as symptom-burden and functional decline, the domain of palliative care. As the U.S. population ages the need for palliative care will increase. The uptake of health care innovations to meet this challenge is not as rapid as the pace of population change, and that is why there is emphasis on understanding the macro- and micro-level factors that speed up the adoption process (Keown et al. 2014). In response, we presented a qualitative, historical case study illustrating the development and diffusion of an integrated system of care for patients of advanced complex illnesses. We then applied the Consolidated Framework for Implementation Research (Damschroder et al., 2009) to the case study, in order to systematically identify the key drivers of that diffusion. It is our hope that this article provides readers with lessons learned that they can translate to their own present-day transformation efforts.
Acknowledgments
We would like to thank the following individuals for their thoughtful comments on earlier versions of the manuscript: Dr. Jessica Adams-Skinner, Ms. Gretchen Fitzgerald, Ms. Susan Lawrence, Dr. Lou Lukas, Ms. Kathy Perlow, Dr. Debbie Salas-Lopez, and Dr. Joseph E. Vincent.
References
2011-public-opinion-research-on-palliative-care.pdf. (2014). Retrieved from http://www.capc.org/tools-for-palliative-care-programs/marketing/public-opinion-research/2011-public-opinion-research-on-palliative-care.pdf
Bakitas, M., Stevens, M., Ahles, T., Kirn, M., Skalla, K., Kane, N., et al. (2004). Project ENABLE: a palliative care demonstration project for advanced cancer patients in three settings. J Palliat Med, 7(2), 363-372.
Benjamin, R. M. (2010). Multiple Chronic Conditions: A Public Health Challenge. Public Health Reports, 125(September-October), 626-627.
Brumley, R. D., Enguidanos, S., & Cherin, D. A. (2003). Effectiveness of a home-based palliative care program for end-of-life. J Palliat Med, 6(5), 715-724.
Conditions, Working Group on Health Outcomes for Older Persons with Multiple Chronic Conditions (2012). Universal Health Outcome Measures for Older Persons with Multiple Chronic Conditions. J Am Geriatr Soc, 60, 2333-2341.
Damschroder, L., Aron, D., Keith, R., Kirsh, S., Alexander, J., & Lowery, J. (2009). Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science.Implementation Science, 4:50.
Damschroder, L., & Hagedorn, H. (2011). A Guiding Framework and Approach for Implementation Research in Substance Use Disorders Treatment.Psychology of Addictive Behaviors, 25(2), 194-205.
Deitrick, L.M., Rockwell, E.H., Gratz, N., Davidson, C., Lukas, L., Stevens, D. et al. (2011). Developing Specialized Palliative Care in the Community: A New Role for Nurse Practitioners. Advances in Nursing Science, 34(4), E23-E36.
Emanuel, E. J., Fairclough, D. L., Slutsman, J., & Emanuel, L. L. (2000). Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med, 132(6), 451-459.
Friis, R. H., & Sellers, T. A. (2009). Epidemiology for Public Health Practice (4 ed.). Sudbury, MA: Jones and Bartlett Publishers.
Future Search – The Method – What is Future Search? (2014). Retrieved from http://www.futuresearch.net/method/whatis/
Gordis, L. (2014). Epidemiology. Philadelphia, PA: Elsevier Saunders.
Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, C. C., et al. (2004). Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Cmaj, 170(12), 1795-1801.
Hirschmann PhD, K. M., Ray MD, D., & Foster PhD, E (2011). When We’re All Together, the Patient Knows It: Creating an Interdisciplinary Learning Community in Palliative Medicine. Retrieved fromhttp://scholarlyworks.lvhn.org/medicine/64.
Hovlid, E., Bukve, O., Haug, K., Aslaksen, A., & von Plessen, C. (2012). Sustainability of healthcare improvement: what can we learn from learning theory? BMC Health Services Research, 12: 235.
Hung, W. W., Ross, J. S., Boockvar, K. S., & Siu, A. L. (2011). Recent trends in chronic disease, impairment and disability among older adults in the United States. BMC Geriatrics, 11(47).
Ilott, I., Gerrish, K., Booth, A., & Field, B. (2013). Testing the Consolidated Framework for Implementation Research on health care innovations from South Yorkshire. Journal of Evaluation in Clinical Practice, 19, 915-924.
Kamal, A. H., Currow, D. C., Ritchie, C. S., Bull, J., & Abernethy, A. P. (2013). Community-based palliative care: the natural evolution for palliative care delivery in the U.S. J Pain Symptom Manage, 46(2), 254-264.
Keown, O., Parston, G., Patel, H., Rennie, F., Saoud, F., Al Kuwari, H., et al. (2014). Lessons From Eight Countries On Diffusing Innovation in Health Care.Health Affairs, 33(no. 9), 1516-1522.
Leff, B., Spragens, L. H., Morano, B., Powell, J., Bickert, T., Bond, C., et al. (2012). Rapid reengineering of acute medical care for Medicare beneficiaries: the Medicare innovations collaborative. Health Aff (Millwood), 31(6), 1204-1215.
Letcher, A. S., & Perlow, K. M. (2009). Community-based participatory research shows how a community initiative creates networks to improve well-being. Am J Prev Med, 37(6 Suppl 1), S292-299.
Litrivis, E., & Smith C.B. (2011). Palliative Care: A Primer. Mount Sinai Journal of Medicine, 78, 627-631.
Lukas, L. (2010). ‘Goals of Treatment’ Enhance Long Term Communication. from http://www.capc.org/capc-resources/capc-poster-sessions/capc-phoenix-2010/abstracts/09
Lukas, L., Foltz, C., & Paxton, H. (2013). Hospital outcomes for a home-based palliative medicine consulting service. J Palliat Med, 16(2), 179-184.
Lynn, J., & Adamson, D. M. (2003). Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. Santa Monica, CA.
Med-IC: Medicare Innovations Collaborative. (2014). Retrieved from http://www.med-ic.org/
Meier, D. E. (2014). Message to the field. Retrieved from http://www.capc.org/news-and-events/releases/09-23-14
Parekh, A. K., Goodman, R. A., Gordon, C., & Koh, H. K. (2011). Managing Multiple Chronic Conditions: A Strategic Framework for Improving Health Outcomes and Quality of LIfe. Public Health Reports, 126(July-August).
Rabow, M. W., Dibble, S. L., Pantilat, S. Z., & McPhee, S. J. (2004). The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med, 164(1), 83-91.
Ray, D., Fuhrman, C., Stern, G., Geracci, J., Wasser, T., Arnold, D., et al. (2006). Integrating palliative medicine and critical care in a community hospital. Crit Care Med, 34(11 Suppl), S394-398.
Rockwell, E. H., Stevens, D., & Ray, D. (2013). Coordinating Quality Across the Palliative Care Continuum: OACIS/Palliative Medicine Services; Retrieved from http://scholarlyworks.lvhn.org/medicine/361
Schulz, R., & Martire, L. M. (2004). Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry, 12(3), 240-249.
Schulz, R., & Sherwood, P. R. (2008). Physical and Mental Health Effects of Family Caregiving. AJN, 108(No. 9 Supplement), 23-27.
Stevens, D. & McFadden, C (2010). Using Scorecards to Monitor Program Performance. Retrieved from http://www.capc.org/capc-resources/capc-poster-sessions/capc-phoenix-2010/abstracts/08)
Time Bank. (2014). Retrieved from http://timebanks.org/
Vincent, G. K., & Velkoff, V. A. (2010). The Next Four Decades, The Older Population in the United States: 2010 to 2050. Washington, DC.
Vogeli, C., Shields, A. E., Lee, T. A., Gibson, T. B., Marder, W. D., Weiss, K. B., et al. (2007). Multiple Chronic Conditions: Prevalence, Health Consequences, and Implications for Quality, Care Management, and Costs. J Gen Intern Med, 22(Supple 3), 391-395.
Wolff, J. L., Starfield, B., & Anderson, G. (2002). Prevalence, Expenditures, and Complications of Multiple Chronic Conditions in the Elderly. Arch Intern Med, 162, 2269-2276.
Expanded Bios
Dorothy Faulkner, PhD, MPH
Dr. Dorothy Faulkner, a faculty member at the Eastern Virginia Medical School (EVMS), earned her doctoral degree in epidemiologic science from the University of Michigan. Her post-doctoral work was completed at the Centers for Disease Control and Prevention’s Epidemic Intelligence Service (EIS) program. Before coming to EVMS, Dr. Faulkner was the Director of Population Health Research at the Lehigh Valley Health Network. There, she led a group of scientists in conducting studies in both the health care and community settings. Her team was unique, in that multiple academic disciplines were represented including epidemiology, biostatistics, anthropology, informatics, and regional planning. Dr. Faulkner’s research interests center around vulnerable population membership and its impact on health knowledge, health behavior, and health care quality. She has published in a number of journals, including the Journal of the National Cancer Institute (JNCI) and Pediatrics.
Elke H. Rockwell, PhD, MSS
Elke H. Rockwell served as Quality Specialist for OACIS/Palliative Medicine at Lehigh Valley Health Network (LVHN). In this capacity, she established the Quality Program in OACIS Palliative Medicine, managed Departmental quality projects, was liaison with other Quality groups in the Network, and participated in the preparation of presentations and publications. Prior to her role as Quality Specialist, she held the position of Research Associate in the Department of Family Medicine at LVHN and provided research support and coordination for special projects, among them Community Care for Complex Illness (3CI) and activities related to LVHN’s participation in the Medicare Innovations Collaborative. Before joining LVHN, Dr. Rockwell worked for over five years as an Outcomes Specialist at KidsPeace. She also has twenty years of experience teaching German language and literature at the college level. She holds a PhD in Germanic Languages and Literatures from Princeton University and a Master’s in Social Services from the Graduate School of Social Work and Social Research at Bryn Mawr College. She has published in journals in the fields of palliative care and German literature, and presented at national and international meetings.
Donna Stevens, BS
Donna Stevens is the Program Director of OACIS (Optimizing Advanced Complex Illness Support)/Palliative Medicine at Lehigh Valley Health Network, a 2014 Circle of Life Award recipient. The program includes an inpatient consult service, a nationally recognized home-based service and an outpatient clinic. With a clinical background in occupational therapy, she has spent the majority of her career in administration, psychiatry and a skilled nursing facility, prior to Palliative Medicine. Her skills lie in leadership and team building, with a strong emphasis on keeping the patient perspective in focus. In December 2011, Donna Stevens was invited to join the Improving Outpatient Palliative Care (IPAL-OP) Advisory Board of the Center to Advance Palliative Care (CAPC). She has presented on the topic of home-based Palliative Medicine services at national conferences, including CAPC, the American Academy of Hospice and Palliative Medicine (AAHPM) and the Institute for Healthcare Improvement (IHI). She is co-author on a publication about the OACIS home-based service and an article on the evidence of the impact of outpatient Palliative Care.
Daniel Ray, MD, MS
Daniel Ray attended medical school at The Ohio State University and completed his internal medicine residency and pulmonary/critical care fellowship at the Medical College of Wisconsin. His interest in palliative medicine began early in his career during his critical care fellowship. After moving to the Lehigh Valley, he was a recipient of the Robert Wood Johnson Foundation Grant for integrating palliative medicine in the ICU. He currently is the Chief of the newly formed Section of Palliative Medicine and Hospice at Lehigh Valley Health Network and serves as medical director for OACIS and director for the Hospice and Palliative Medicine Fellowship program. Dr. Ray is a member of the Improving Palliative Care in the ICU (IPAL-ICU) Advisory Board of the Center to Advance Palliative Care. He received the Roger C. Bone Award for Advances in End-of-Life Care from the American College of Chest Physicians (ACCP). He has presented on various palliative care topics at national and international conferences and has published on the subject in refereed journals.
Conversations We Should Be Having Now
“It’s always too early, until it’s too late.”
The Conversation Project, 2013
At a recent talk on end-of-life care planning, a member of the audience made the following observation to the facilitator. Speaking about her family, she said, “They know what I want, but I don’t know what they want.” Why is talking about their own wishes for end-of-life care something that more than 90% of people think is important, yet less than 30% have actually discussed what they or their family want? Furthermore, while 80% of survey respondents state that they would want to talk to their physician about end-of-life care if faced with an advanced illness, a mere 7% report having actually done so. Similar disconnects between what individuals state they want and their actual actions is well documented.
Are such conversations relevant only to those above a certain age? Or, only to individuals suffering from advanced illness and who are nearing the end of life? Is there an optimal time and place when conversations about end-of-life care choices should take place? Is it something that can only occur between an individual and her or his physician? Most importantly, how do we assure that the values and goals for care of individuals are acknowledged and reflected in the actual services they receive at their life’s end? So, how does one even get started? One resource to help is called The Conversation Project, discussed more fully below.
The prevailing socio-cultural norm in American society has been and, to some extent still is, a lack of acceptance of one’s own mortality. In this regard, it is true that the public’s expectation of a life that can be extended by extraordinary medical measures has been equally matched by a health care system that regards death as a failure. This situation is especially problematic given two critical factors: the aging of the population and, the 70% death rate of Americans from a chronic disease. In addition, despite most people saying they would prefer to die at home, this, in fact, occurs less than a third of the time. The reality is that the majority continue to die in hospitals, nursing homes, or long-term-care facilities. As Ellen Goodman (whose work is described in detail below) noted, this enormous discrepancy can be viewed as an example of “preventable harm” in the broadest sense of that concept (E. Goodman, personal communication, November 11, 2014).
The Institute of Medicine (IOM) issued a report in 1997 entitled, Approaching Death: Improving Care at the End of Life. At that time, the IOM Committee noted that, “Except for the occasional newspaper feature or television documentary, the reality of dying as most often experienced in the United States has been largely shunned by the news, information, and entertainment media as distasteful or uninteresting” (1997:7). Consequently, among the report’s seven recommendations, one stated: “A continuing public discussion is essential to develop a better understanding of the modern experience of dying, the options available to patients and families, and the obligations of communities to those approaching death” (1997:270).
In September 2014, the IOM released a new report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.What, if anything, has changed in more than a decade with regard to the prior recommendation about engagement at the community level in discussions about death and dying? While acknowledging that over the past 17 years, the landscape has indeed changed for the better, this report again lists, as one of its five recommendations, the need for “Public Education and Engagement.”
Given these dual calls to action in 1997 and in 2014, what is the status of community engagement regarding such discussions? The focus of this article will be on a successful and important initiative called The Conversation Project (TCP). It was founded in 2012 by Ellen Goodman, a recipient of the Pulitzer Prize for Distinguished Commentary, and a strong advocate for helping individuals and families talk about their end-of-life care wishes. Since its founding, TCP has evolved into a well-established grassroots campaign that will be part of realizing the IOM studies’ vision for open and honest dialogue about death and dying.
In a 2014 TEDx talk, Ms. Goodman explains simply but eloquently the goals of the initiative, and why she was motivated to launch it. Referring to the end of her mother’s life, she states: “I was making decisions for her but I didn’t really know what she wanted.”
This insight, combined with her discussions with others who had had similar experiences, led her to the conclusion that she would undertake no less a challenge than to “transform the social norm.” Perhaps the most distinctive aspect of TCP is that it is about individuals having more than just a one-time conversation about “what matters to them, not what’s the matter with them.” One of the individuals involved with Ms. Goodman at the outset of TCP recalls, “It was remarkable how quickly we settled on three main insights: Everyone had a story to tell; the conversation that people needed to have was personal, not medical; and the best way to draw people in was through storytelling” (Bisognano & Goodman, 2013). Thus TCP with its “audacious goal of changing our nation’s culture so that everyone’s wishes for end-of-life care are bothexpressed and respected” was founded! It is important to note that TCP does not endorse or promote any particular preference for care at the end of life.
If, indeed, the conversation is something that each of us should have, how does one begin? Is it different with family and friends versus with health care professionals? What help exists for those for whom English is a second language? How does an individual start the conversation with their physician? On the TCP website, the first place to start is with the link to the “Starter Kit.” This kit, which can be downloaded, saved, and updated as frequently as needed, can be shared electronically with family and friends. In addition to English, it is also available in Spanish, French, and Mandarin.
The website also has another link, “How to Talk to Your Doctor” (or any member of your health care team), which is available in English, Spanish, and French. Both of the conversation kits use a similar methodical plan: 1) Get Ready, 2) Get Set, 3) Go and 4) Keep Going. Each of the four steps provides thoughtful, straight forward information for the user.
Recognizing that such transformational change must also involve the broader health care system, TCP has established a collaborative effort with the respected Cambridge, Massachusetts-based Institute for Healthcare Improvement (IHI). While individuals may “express” and communicate their wishes, “IHI is working to ensure that the nation’s health systems and providers have the skills torespect those wishes―to elicit patients’ and families’ preferences, document them, and carry them out” (Bisognano & Goodman, 2013). In its efforts to establish what it calls the “Conversation Ready Healthcare Community,” the IHI has identified the following five principles to guide the development of “reliable care processes”:
- Engage with our patients and families to understand what matters most to them at the end of life.
- Steward this information as reliably as we do allergy information.
- Partner with our patients to develop appropriate goals of care.
- Exemplify this work in our own lives so that we understand the benefits and challenges.
- Connect in a manner that is culturally and individually respectful of each patient.
One such successful health system initiative was developed in La Crosse, Wisconsin, where it has been reported that the Gundersen Lutheran Health System has led the effort to engage the community in the conversation. The results speak for themselves. Of the 540 adults who died in that community between April 1995 and March 1996, 85% had specified their end-of-life care wishes. And, more importantly, 96% of the Advance Directives were found in the patients’ chart (Bisognano & Goodman, 2013). These impressive results were featured on National Public Radio’s Morning Edition program entitled, “The Town Where Everyone Talks about Death”
One unanticipated result of the willingness of La Crosse’s residents to engage in open discussions and then to act upon their stated preferences was the reduction in health care expenses in that community. “At Gundersen Lutheran, the cost of care for someone in the last two years of life is about $18,000. The national average is close to $26,000.” While reducing the cost of care was not the reason for the health care system’s involvement in this effort, it nonetheless demonstrated that when patients had a choice, they elected less expensive care―care that was often not “excessive and unwanted.” This is an outstanding example of how doing the right thing can be both effective and efficient. Higher quality can indeed result in lowered cost.
To achieve its ambitious goals, TCP has adopted a broad-based approach, designed to reach as wide an audience as possible across the nation. Additionally, the project uses both social and traditional media, works with employers and faith-based groups, and has developed a field strategy to promote overall spread. This strategy is led by an individual whose responsibility is to help build a field structure to support the many communities that want to bring the conversation to their regions. In order to accomplish this, she depends heavily on local leaders across the U.S. to help translate TCP’s work to appeal to their community members.
In supporting local efforts, the IHI personnel conduct a monthly Conversation Project Regional Call during which participants share and learn from one another. For example, at the call in October 2014, second-year medical students from Brown University, who are members of the Asian Pacific American Medical Student Association, told the callers about their activities in bringing this information to the Korean and Chinese communities in Providence, Rhode Island. Similarly, the leader from Honoring Choices Minnesota shared all the many avenues she uses to reach individuals in that area, given its diverse communities, including Vietnamese, Hmong, East Africans, East Indians, Hispanics, and Cambodians.
Another method that the IHI is using with its field strategy is via a “Train the Trainer” track. The first such volunteer training session was held in late October and will be continued on a quarterly basis. Learnings and best practices will be shared as the initiative gains maturity.
In its 2014 study, the IOM committee has proposed a “Life-Cycle Model of Advance Care Planning,” which appears to fit very logically with having the conversation at regular intervals. The model identifies various milestones in life, at which time an individual experiences either a change in personal risk and/or a major shift in responsibility. These include moments such as obtaining an initial driver’s license and specifying wishes regarding organ donation, leaving for college, joining the military, getting married, becoming a parent, and so on. Each of these passages provides a logical juncture at which to engage in a conversation. While the risks at theses stage are mostly minimal, the recurring conversations seed the idea for advance care planning. Catastrophic events can and do occur at any age and, as described in the article by Joan Gibson in this issue entitled “Now and Then,” the benefit of having such a dialogue would have been of immense value to the donor’s family in the case she discusses.
The on-going communications that are implicit in the Life-Cycle model continue beyond the early phases of an individual’s life to include the vital role they play following the initial diagnosis of a chronic disease, into the progression of the disease, and through the final year of life. Discussions at these stages can be held with various healthcare professionals who have the requisite training and expertise. This includes discussions during regular visits with one’s primary care team. It is equally important to communicate about the choice of a health care agent who is designated to act in one’s behalf. In sum, this model recommends starting the conversation early and continuing as the life cycle matures and as the individual’s values and goals evolve over time.
In a recent letter to the New York Times, Ellen Goodman, while calling for more training for clinicians in the area of communicating with patients, states: “It’s also clear that families need to talk, at the kitchen table, not in the intensive care unit, about how they want to live at the end of life. And they need to talk before there is a crisis.”
“Nursing in the 21st Century” (N21) recognizes that health care today is in the midst of a major transformation, and the mobile journal seeks to be an active participant in that process. To that end, and with both the diversity and aging of the American population as critical factors, the nursing profession can play a key role in changing knowledge, attitudes, and behaviors when it comes to having the conversation. The majority of clinical care today is delivered in outpatient settings where nursing staff in the clinics can engage patients and families in this important effort early on in their relationship with each other. Both The Conversation Project and the Institute of Medicine acknowledge the importance of nurses contributing to this much-needed socio-cultural change that can have beneficial outcomes for us all.
The Conversation Project: Interviews with Ellen Goodman and Kate DeBartolo
I recently interviewed both Ellen Goodman and Kate DeBartolo. The interviews are centered on Ms. Goodman’s ground-breaking work. It was Ms. Goodman’s own experience following the death of her mother, which prompted her to start this grassroots initiative.
It is uncommon for most of us to talk with our families and friends about our end-of-life care wishes and preferences. A 2013 survey by The Conversation Project revealed huge discrepancies between what respondents said they wanted at the end of their lives versus specific actions they had taken to ensure that this would, in fact, occur. Furthermore, the realization that the health care system also plays a vital role in supporting patient and their families led to a collaborative effort between the Project and the Institute for Healthcare Improvement, to begin making health care institutions “Conversation Ready.” The IHI is implementing a “Strategy for Change” whereby communities across the nation will receive assistance at the local level to establish TCP.
To hear more about this subject and the perspectives that informed their work, please listen to the interviews:
Interview – Ellen Goodman
Interview – Kate DeBartolo
Click on the hotspots to visit websites and to learn more about The Conversation Project and the Institute for HealthCare Improvement.
References
Bisognano, M. and Goodman, E. (2013). Engaging Patients And Their Loved Ones In The Ultimate Conversation. Health Affairs, 32 (2), 203-206
Goodman, E. (2014, September, 26). Who Speaks for Dying Patients? New York Times. Retrieved from http://www.nytimes.com/2014/09/26/opinion/who-speaks-for-dying-patients.html module=Search&mabReward=relbias%3Ar%2C{%221%22%3A%22RI%3A8%22}
Institute of Medicine (1997) Approaching Death: Improving Care at the End Of Life, The National Academies Press.
Institute of Medicine (2014) Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, The National Academies Press.
Expanded Bios
Revathi A-Davidson, MA, MPH. Healthcare and Hospital Administrator (Retired), Presbyterian Healthcare Services, Albuquerque, New Mexico.
Ellen Goodman has spent most of her life chronicling social change and its impact on American life. She was one of the first women to write for the op-ed pages where she became, according to Media Watch, the most widely syndicated progressive columnist in the country. In 1980, she won the Pulitzer Prize for Distinguished Commentary. Ellen founded The Conversation Project in 2012 which is dedicated to helping people talk about their wishes for end-of-life care. TCP has the audacious goal of changing our nation’s culture so that everyone’s wishes for end of life care are both expressed and respected.
Kate DeBartolo has worked at The Institute for Healthcare Improvement (IHI) since 2007 and currently leads both the national field team at IHI as well as for The Conversation Project. Her work on The Conversation Project began in April 2013. Her role with The Conversation Project is to help build a field structure to support the many communities bringing the conversation to their regions. She depends heavily on local leaders across the US to help translate The Conversation Project’s work to appeal to their community members.
Now and Then: The Evolution of Advance Care Planning
The Call
The phone call came at 1:00 AM. It was the transplant nurse coordinator, telling us of a possible match for a kidney for my husband. By 7:30 the next morning the match was confirmed, and within 12 hours Mike received a working kidney. It was by no means a straightforward recovery, but because of that priceless gift, and the indefatigable efforts of the transplant team, Mike gained another year to savor life, enjoy his family, and ride his recumbent trike.
Mike Gibson on his recumbent trike.
A year later his/our incredible journey together came to an end. After 42 years of marriage and 35 years of living with a debilitating chronic illness, rheumatoid arthritis finally took its toll. Mike died in February of 2011. It was time.
1975
Wind the clock back to 1975. I was a newly minted Assistant Professor of Philosophy teaching all manner of philosophy courses at a small liberal arts college in Albuquerque, New Mexico. Among the college’s excellent programs was the Associate Degree of Nursing (ADN), our community’s premiere clinical nursing program at the time. The nursing faculty asked me to design a Nursing Ethics course for their students, and so I did. It was the nursing profession that launched my bioethics career.
Those were the early days of Medical Ethics. In 1975, Karen Ann Quinlan slipped into a coma and, through her family, launched the Right to Die movement as she lived another 10 years before her family was granted legal permission to remove her from life support. On June 12, 1985, the day after Karen Ann Quinlan died, the New York Times published an account of the effect her case had on evolving right to die issues. Seven years earlier, the Harvard School of Medicine had published its criteria for determining irreversible coma/brain death. It proposed this new definition in response to the need for timely and precise determinations of death when retrieving organs for transplantation.
1975 was also the year that my husband, returning from one of our backpacking trips into the mountains of northern New Mexico, visited his physician to check out a sore foot and knee.
Backpacking, 1975.
The diagnosis was brutal: rheumatoid arthritis. It would become one of the most virulent cases his rheumatologist had seen, and for 35 years it did not let up. In December 1975 our daughter was born.
“My Mother Does Death and Dying”
And so began my career in Medical Ethics, and a family life defined in so many ways by debilitating chronic illness. I would not wish Mike’s illness on anyone, but I appreciate that my growth as a bioethicist and the quality of our family life would not have been the same, perhaps not as rich, without that personal, relentless experience.
When our daughter was in kindergarten, her teacher asked the children to talk about their parents. Robin had difficulty pronouncing “Cinematographer,” her father’s profession, so she settled on, “My mother does death and dying.” That turned out, for her, to be the perfect answer: they never asked her again.
In the years following 1975, advance care planning and end-of-life decision making were the mainstay of Medical Ethics courses, conferences, and hospital ethics committees. Legislatures, courts, professional societies, religious groups, and numerous organizations scrutinized issues of withholding and withdrawing life support treatment, the moral status of artificial hydration and nutrition, treatment of seriously ill newborns, health care powers of attorney, hospice care, hospital DNR orders, “living wills,” and advance directives. More recently attention has focused on out-of-hospital DNR orders, M/POLST (/Medical/Physician Orders for Life Sustaining Treatment) orders, palliative care, and physician aid in dying.
This robust menu of end-of-life issues has defined and described much of the bioethics agenda of the past 35 years. It came to life in acute care settings; it focused on physician practice and life saving/sustaining treatments; and it pretty much ignored patients and families living with chronic illness. The ethics of cure, and issues surrounding dying and death, had little to offer to those for whom cure was not in the cards but quality of life and living well were of urgent and ongoing concern.
From Cure to Care: Advance Care Planning Evolves
Enter nurses and the ethics of care. Even a cursory reading of the American Nurses Association’s Code of Ethics for Nurses over the years reveals the professional nurse’s commitment to caring, comfort, and compassion:
“Nurses take into account the needs and values of all persons in all professional relationships [Provision 1.1]…. An individual’s lifestyle, value system and religious beliefs should be considered in planning health care with and for each patient [Provision 1.2]…. The worth of the person is not affected by disease, disability, functional status, or proximity to death. This respect extends to all who require the services of the nurse for the promotion of health, the prevention of illness, the restoration of health, the alleviation of suffering, and the provision of supportive care to those who are dying. [Provision 1.3]”
This cure-to-care trajectory of relationships, process and values has played out in interesting ways over the years, as advance care planning and medical decision making have matured.
I began “doing death and dying” outside academia in 1978, when New Mexico enacted its Right to Die law. The previous year California had passed the nation’s first “living will” law, the Natural Death Act. New Mexico was one of a handful of states immediately to follow suit. Unlike California’s lengthy law, crafted to appease as many different interests groups as possible, New Mexico’s law was beautifully and surprisingly simple: An adult of sound mind may execute a document, with all the formalities of a valid will, directing that maintenance medical treatment not be used to prolong life if a person is certified under the Act as suffering from a terminal illness or being in an irreversible coma.
Other states would follow suit and would also enact health care power of attorney laws, expanding the scope of advance care planning to include decision makers appointed to speak on behalf of those no longer able to do so. So what should such an expanded directive contain?
The earliest directives focused on life sustaining treatment questions: Would you want to be placed on a ventilator? Would you ever want the ventilator removed? How about a nasogastric tube? PEG tube feeding? Of course, the obvious answer to these questions is, “It depends.” But on what do one’s decisions depend?
I remember when Mike and I sat down together, trying to fill out a rather lengthy Advance Medical Directive form. We were asked to imagine certain conditions, consider various treatment choices for each, and record a decision. This condition/treatment pairing seemed logical at the time, though at some point we paused: Even then the universe seemed to us, on occasion, to be a bit perverse. Who is to say that, once we have anticipated 148 possible conditions and treatments, it won’t be #149 that strikes?
A Focus on Values and Conversations
And so in the early 90s, nearly 10 years into my stint as chair of a local hospital ethics committee, some colleagues and I at the University of New Mexico began to design another kind of advance directive that focuses on answers to the question, “On what do my decisions depend?” They depend on what matters to me. They depend on what I value. The Values History Form was born. To download a free, non-copyrighted Values History Form from the University of New Mexico Ethics institute, click this link.
As we developed and tested the VHF throughout the 1990s, several realities came into sharper focus.
First, whenever we make a decision of any kind, we do so because something matters to us. Something pushes or pulls us in one direction or another. (Bennett and Gibson, 2006; Gibson, 2013) We make health care decisions because we harbor certain values about quality of life, independence and dignity, relationships, pain, dying and death, finances, religion perhaps, to name but a few categories of values. Physicians may be the experts on medical diagnoses, prognoses and treatments, but we are the experts on ourselves and what matters to us. Only we can fill in those blanks.
Second, since these directives are often intended for others to use on our behalf, we need to make sure our decision makers understand what we mean. How many people, in the early days of advance directives, filled them out and then carefully tucked them away in their safety deposit box, never mentioning to others where to find the forms, let alone what they contained? Over the years, we have learned to tell our family and friends where to find our advance directives, and increasingly we have made copies and handed them out to those with a need to know.
Third, we must face the reality that the hardest yet most important part of this process is not the writing down of what matters. It is sitting down and having the conversation, face to face, with family, friends and prospective decision makers. More than once. Nevertheless, when we are ready and anxious to have the conversation, others may be reluctant, or outright refuse to discuss these issues. Even if we decide to follow the “70/40 rule,” which says if we are 70 and our adult children are 40 we should not postpone this talk any longer, it is not uncommon for the 70s to be willing and the 40s to resist.
Mike, Robin, and I were thrust into this awareness at an early age. We did talk, over and over. Yet even with the Values History Form’s focus on what matters, the process seemed oddly disconnected from our current situation. The health care system seemed to care most about what we wanted at the end of our lives. Every time Mike was admitted to the hospital he was asked for his advance directive, what life sustaining treatment he did and did not want, and whether or not he wanted to be resuscitated. “Thank you for choosing to have your joint replacement surgery in our hospital. Now, should you be close to death, how would you like us to proceed?” By then we were not squeamish about such matters, but there seemed to be so much more to talk about. And it changed from year to year, from situation to situation.
Life Cycle Model for Advance Care Planning
So you can understand my unmitigated delight as I read, in the recent Institute of Medicine’s Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, about the proposed life cycle model for advance care planning. Throughout our lives, risks and locus of responsibility are continually shifting. There are certain common and predictable milestones or moments when we should pause, reflect on what matters to us, and communicate this to others: when we get our first driver’s license and are asked whether we want to be an organ donor; when we turn eighteen and are eligible to vote; when we leave home, go off to school, join the military, get married; when we give birth; when we receive our first diagnosis of a chronic condition with which we will live for the rest of our lives; as we age and experience inevitable changes in health status; as we live into our last year of life. See 3:52-54 for a detailed explication of the proposed milestone-specific life cycle model for advance care planning.
Using this model, advance care planning is not just about end-of-life decision making, until it is. Rather it is about developing the capacity to take stock, periodically, of what matters to us now, and to inform those who need to know. It is about reflecting, talking and listening across generations about what quality of life means to us now. It is about exercising this capacity and becoming skilled and intentional as we make even the most ordinary of health care decisions, nowand throughout our lives.
By the time we find ourselves near the end of our decision-making lives, we and those around us should be practiced, comfortable and relatively confident. What we need are tools and prompts that help us to focus on WIN (What’s ImportantNow). As we build on this, the WIT (What’s Important Then) will follow. Present care planning is a prerequisite for advance care planning.
The life cycle model also reminds us that present and advance care planning is not a one-way, downstream conversation, where only the older people tell the younger ones what matters and what they want. Months later we learned about Mike’s kidney donor: a 17 year old whose tragic mountain bike accident caused lethal brain damage, whose parents had to make the unbelievably difficult decision about organ donation. What had they talked about as a family? Our children may know about our wishes, but do we know theirs? Now that’s a difficult conversation.
Have it. Now.
Nursing Education and Practice Going Forward
Nurses have always played a central role in supporting patients’ quality of life. As we move into this new era of increased collaboration among health care team members, nurses’ time-honored commitment to patient values, and their undisputed skill in fostering communication among patients, families and providers will become even more valuable. Were I designing my 1975 nursing ethics course for today’s professional nurse, what would I include in the area of ethics and end-of-life decision making?
The first part of my nursing course mirrors what I would present to all would-be health care professionals:
- Have the conversation with your own family and friends before you try to show others how begin advance care planning. Designate someone to be your health care proxy and clarify with him/her what is important to you.
- Understand the medicine, law, ethics and current standard of practice for basic palliative care.
- Familiarize yourself with the various advance care planning tools available to your patients and their families.
- Identify where, in your practice, you can introduce the topic of present and advance care planning. Where possible, design a program for initiating and regularly revisiting that initial conversation. What WIN(What’s ImportantNow) documents might you develop for patients at different stages of life?
- Understand and remain up to date on applicable law and policy concerning end-of-life care and decision making.
For nurses specifically, I would highlight two critical roles: advocacy and communication:
- Nurses commit to patient advocacy as a primary duty. They should remain keenly tuned in to patients’ values, interests and wishes, and help these patients and their families articulate and advance what matters to them.
- In hospital and other health care settings, nurses often take the lead in facilitating communication among patients, families and health care providers. Nursing expertise in fostering ongoing dialogue with all these parties becomes even more important as they, together and separately, grapple with difficult decisions in the face of serious, life limiting illness.
The articles in this volume of Nursing in the 21st Century present current research findings as well as practical advice for the professional nurse who wants to improve her/his skills in helping patients and families navigate difficult decisions, all the while remembering: It starts at home.
References
Bennett, M and Gibson, J (2006). A Field Guide to Good Decisions: Values in Action. Westport, Connecticut: Praeger.
Gibson, J (2013). Pause: How to Turn Tough Choices into Strong Decisions. Albuquerque, New Mexico: Joan McIver Gibson, Ph.D.
Institute of Medicine (2014). Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, D.C.: National Academies Press.
Expanded Bio
Joan McIver Gibson, PhD, Consulting Ethicist, Director (Retired), Health Sciences Ethics Program, University of New Mexico Health Sciences Center.
Legislative Initiatives and Policies: Video Roundtable
Joan McIver Gibson recently led a video roundtable discussion with noted authors and experts Rob Swartz, attorney and professor emeritus of Law at Stanford University and the University of New Mexico; Nancy Guinn, a family practice physician; and Revathi A-Davison, a former executive in hospital administration and a key member of The Conversation Project.
The group discusses their professional, and sometimes personal, experiences with addressing and providing for appropriate end-of-life care. Especially interesting are the legal changes that have occurred in the most recent decades, and the progress to eliminate barriers, to change social practice, and teach care providers more effective approaches to those individuals and their families who are in the last days of their lives.
To watch, click here.
Expanded Bios
Joan McIver Gibson, PhD, Consulting Ethicist, Director (Retired): Health Sciences Ethics Program, University of New Mexico Health Sciences Center.
Professor Robert L. Schwartz, JD, attorney and Emeritus Professor of Law at Stanford and UNM, B.A. 1970, Stanford University, J.D. 1975, Harvard University. Member of the American Samoan, New Mexico, and New York Bars. Widely published and recognized as an expert in administrative law, bioethics, health law, and legislation.
Nancy Guinn, MD, family practice physician and medical director of Presbyterian’s hospice program, in Albuquerque, New Mexico. She completed a post doctoral fellowship in Palliative Medicine at the VA in Palo Alto and Stanford, and is now heading New Mexico’s Medical Orders for Life-Sustaining Treatment (to document by protocol patient’s preferences for end of life care).
Revathi A-Davidson, MA, MPH, Healthcare and Hospital Administrator (Retired), Presbyterian Healthcare Services, Albuquerque, New Mexico.
A Thanatologist’s Point of View
Deborah Golden Alecson, M.S.
I came to the field of thanatology through the door of medical ethics. I was always drawn to the study of ethics and was a philosophy major as an undergraduate. But it was a personal experience of medical ethics in action that further plunged me into research about end-of-life decision-making. In 1989, my daughter came into the world with extensive brain-damage due to medical malpractice during labor. She lived for two months in an isolette in a neonatal intensive care unit, where she mercifully died. I wrote a book about this experience, Lost Lullaby, which included the ethical and legal issues of that time, and how thwarted my husband and I were to be able to make end-of-life decisions for our child. I have had other unprecedented kinds of losses (my husband’s pancreatic cancer, my mother’s suicide) that I have written books about and which have contributed to my ability to teach subjects in medical ethics and thanatology.
As a thanatologist, my mission is to have conversations with people from all walks of life about their thoughts and feelings about their own mortality; their experiences of loss; and the decision-making process that takes place, or more often than not does not take place, once an illness has been diagnosed, especially one that can be terminal.
My supposition is that most of us live our lives with the potential of illness at bay and our mortality out of sight so that when we are diagnosed with something that can kill us, we are totally unprepared and cannot think clearly. We react from the instinct of survival.
My research and experience have shown me that we make bad decisions at the end of life, from a place of fear, and consequently extend our lives with poor quality. If only we had spent time while healthy to contemplate various end-of-life scenarios. By doing so, we can eliminate much of the misery for ourselves and our loved ones. I also believe that the period of time leading up to death can be one of spiritual evolution, not one spent in the waiting rooms of countless doctors, but with our family and friends. My husband and I worked together to achieve this before his death.
Recently, I was invited to speak on my local public radio station, WAMC, with Alan Chartock. I planned to discuss the Death with Dignity Initiative, and I prepared myself with statistics and facts from the states where Death with Dignity is legal. (The Death with Dignity Initiative is being presented to the Massachusetts legislators on January 21, 2015. This is a bill I support which legalizes―with restrictions and guidelines―the ability of a competent patient diagnosed with a terminal illness to request and receive a lethal dose of medication with which to end his or her life.) When I arrived at the studio in Albany, New York, with my notes and graphs, Alan told me to put those away and that we are going to have a “conversation.” True to his word, that’s what we had. We explored everything from Death with Dignity to manifestations of grief, from my thoughts on Kervorkian to my mother’s suicide. We had the kind of conversation I hope to have with everyone I meet. I invite you to listen to the interview here.
Expanded Bio
Deborah Golden Alecson, MS, is a thanatologist and Excelsior College adjunct faculty member in the Schools of Health Science and Nursing. She is the author of four books, three of which deal with death, dying, and bereavement:Complicated Grief: A Collection of Poems, Lost Lullaby and We Are So Lightly Here: A Story about Conscious Dying.
Ms. Alecson has put together and moderated two interfaith forums on death, dying, and the afterlife. She has given talks on the elements of conscious dying, care-giving for a loved one, and other related topics, and facilitates workshops for health care professionals on spirituality in health care. She has been a hospice patient volunteer for over a decade and is a member of the Association for Death Education and Counseling.
Acknowledgements
MAUREEN BOSHIER
Editor-in-Chief
SUSAN PETRIE
Managing Director
Hudson Whitman/ Excelsior College Press
MELISSA MYKAL BATALIN
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AMIE RUGGIERO
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Thank you to everyone for being accommodating and for being willing to try something new.
Advisory Board
CHRISTINE KOVNER
PhD, RN, FAAN, a Professor and Senior Faculty Associate, Hartford Institute for Geriatric Nursing both at the College of Nursing, New York University. She is a Nurse Attending at New York University Langone Medical Center. Her work focuses on the organization and delivery of nursing care.
DIANE L. HUBER
PhD, RN, NE-BC, FAAN, and a nationally recognized nursing administration expert, researcher, academic, speaker, and consultant. She specializes in leadership and nursing care management, emphasizing case and population health management.
KATE FENNER
Compass Clinical Consulting Managing Director, RN, and PhD, with more than 30 years of experience in senior health care leadership roles in university, regional, state and national organizations. She is a regular keynote speaker throughout the country and has authored a leading college text on law and ethics in healthcare.
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End of life conversations
End of life conversations are difficult to initiate to a point where health care practitioners start to actively avoid talking with individuals that are under palliative care. The thought of initiating the conversation fills a clinician with dismay. McRee & Reed (2016) advise that conversations about end of life should be initiated at the time of patient’s admission. Therefore, GPs should monitor the trajectory of patients’ conditions as soon as they have been admitted in hospital. For instance, they can assess whether the patient is exhibiting a consistent decline instead of improvement or if the patient is complaining of fatigue with the treatment process of frequent hospitalization. These prompts then require a clinician to set up a place and time when those who should be involved can be present.
As a RN nurse, I can promote and support the process of end of life conversation by first asking for permission from the patient to talk about the topic. This is crucial as it assures the patient that I respect and honor his/ her wishes. I can start by a question such as, “I would like us to discuss about how you would like to be cared for in case you become really sick, is that okay with you?” I will then determine the appropriate time and place where the conversation should be done. During the discussion, I will show empathy and give enough time to the patient and the loved ones for them to absorb what is being said. I will ensure that I am patient in that I do not focus on covering everything at once.
One of the challenges that makes nurses to shun away from end of life conversations is the fear of blame or causing emotional harm to the patient (McRee & Reed, 2016). Similarly, some clinicians spend months or even years with their patients such that they end up developing deeper relationships with the patients, and therefore, it becomes difficult for them to initiate talks about the patient’s death. They treat the patients as their close friends or loved ones, and honestly no one would like to discuss with a beloved one about their death. Dreadful!!! This is how most clinicians describe the thought of initiating the discussion.
Nurses play a central role when it comes to delivering end of life care. Their conversations about end of life should be patient led, honest, gentle, and should not proceed with the conversation in the event that the patient does not want to continue. Therefore, they should be equipped with the right skills, attitude, and knowledge on end of life for them to deliver quality care.
End of life Conversations and Remembering Grace References
McRee, L., & Reed, P. G. (2016). Nurse Practitioners Knowledge, Skills, and Leadership for the End-of-Life Conversation in Intensive Care. Nursing Science Quarterly, 29(1), 78-81.
