By Rachel Broudy
In recent years, there has been a movement in health care to focus on goal driven care, where the goals are patient goals and the laudable intent is to provide patient-centered care. However, there is something uncomfortable for me in the focus on goal driven care, goal attainability scales, and achieving what matters for patients. What could be wrong, you ask, about setting and achieving goals and paying attention to what matters? To me, it’s the worry that this intent becomes one more box for us to check, and we lose the transformative power of seeing our patients more fully as the complex and whole humans that we are. I worry that we simply replace one goal with another, while it is the lens of goal-directed care, not the goal itself, that offers us the opportunity to put patients at the center of their care.
Let me start with a hypothetical example. An older gentleman from Boston moved to a nursing home after his wife died because he could no longer care for himself. When you ask him what is most important to him, he says, “Watching the Red Sox, doc! I haven’t missed a game in 30 years!” So you write that down as a goal, pass it on to the team, and ensure that he is able to watch the Red Sox during the season. Check. Goal attained. But we’ve missed an opportunity to learn more about who he is as a whole person.
The intent of this work is deeply good and critically important — an attempt to refine our medical care and interventions to match the needs, goals, hopes, and abilities of our patients. At times, it can feel that through our medical training and standards of care, we’ve lost our ability to listen to our patients, to engage with them as complex humans. It can feel like our systems, EHRs, guidelines, and checkboxes are overrunning these relationships so completely that we need a system to keep our patient’s humanity and autonomy visible. In our medical culture, there is a need for something structural to hold the patient view, experience, and choice at the center of our vision.
I would hazard to say that many of us worry that life in a nursing home is somehow less fulfilling than life outside of it. Why is that? What would it take to change that?
I am currently working on a project at Ariadne Labs on re-imagining nursing home care, a project initiated in the early days of the COVID-19 crisis but one that has led to exploring long-needed systematic shifts in our care delivery in these facilities. Throughout this work, I find myself looking for a structural model that will put these older adults back in the center of care. A model that ensures nursing homes are able to support these people — a diverse group of individuals who live in nursing homes because of physical disabilities, cognitive impairment, chronic mental health issues, family or financial reasons — in leading lives worth living. I would hazard to say that many of us worry that life in a nursing home, a priori, is somehow less fulfilling than life outside of it. Why is that? What would it take to change that?
One of our hypotheses is that our medical lens contributes to the “othering” of nursing home residents. Nursing home residents may, unintentionally, be seen as bodies to clean, feed, and keep safe, not as mothers and fathers, workers and leaders, silly friends and wise companions. “They” are separated from “us,” the ones who care for them.
There have been many attempts to apply a more human lens to nursing home care. There is a 20 year history of a culture change movement in nursing homes directed at this very issue. Dr. Bill Thomas led the Eden Alternative, a powerful attempt to put wellbeing back at the center of care, bringing animals, pets, and plants into nursing homes. The Green House model of long term care has created small homes, more intimate and caring spaces for older adults to age. Anne Basting has led a fabulously creative approach to using art and theater to integrate residents of nursing homes into their local communities. Consumer groups have pushed to include wellbeing, dignity, people’s stories in care. But many long term care facilities remain untouched by these efforts or unable to integrate them for a myriad of complex reasons.
The What Matters movement, sparked by the Institute for Healthcare Improvement (IHI), has been very successful in opening a path to discussing values and priorities with patients across the spectrum of health care. It has helped remind us all that in the end What Matters to patients may be very different from that which matters to doctors, insurance companies, or EHR fields.
But in some of these interventions, there remains a focus on goals. I wonder if instead, we are in search of an approach that can go deeper. Let’s return to our Red Sox fan above. His goal, at the surface, is to watch every game — but why does watching the Red Sox matter to him? Is it a connection with his identity as an athlete, or a remembrance of being part of a community? Is it a deep part of his identity — the guy who watches every game, no matter what? It becomes a question of why, rather than just what. And if it is the answers to these deeper questions that really matter, how do we then integrate them into our systems of care and care plans?
I wonder if instead, we are in search of an approach that can go deeper…And if it is the answers to these deeper questions that really matter, how do we then integrate them into our systems of care and care plans?
The answers to these types of questions are often not a goal to be attained but a way of seeing and engaging with someone, as their full self, in all of our interactions and clinical decisions. His love of the Red Sox is a window into who he is outside of his diagnoses and treatments that we as clinicians are focused on. But it is only a window, and thus, cannot be where we stop in our attempts to see our patients more fully.
How do we do this differently? How do we shift our lens, our paradigm, our framework for care, so that we are seeing older adults who live in nursing homes as their full selves, despite their chronic illness or disabilities? Is there a way of seeing people differently, that is somehow more whole and integrative, rather than adding a personalized, attainable goal to the care plan?
Wellbeing is having, loving, and being — having one’s physical needs met, having social connections and belonging, and having purpose and meaning.
Wellbeing is a frame that offers a possible transformative lens for our work. Wellbeing is not wellness. Wellness implies health. In our late years, many of us do not have the luxury of health. And yet, wellbeing can still be nurtured and maintained despite the presence of illness. Wellbeing is not about achieving goals, attending to what matters in a concrete way. It is more of a lens for seeing others and seeing our work, our interventions and our care. Erik Allhardt, a Finnish sociologist, suggested that wellbeing is having, loving, and being — having one’s physical needs met, having social connections and belonging, and having purpose and meaning.
With this lens, perhaps we should be asking about the processes of our work, rather than discrete goals. Do our treatments and interventions support autonomy? Are we feeding those who need assistance in ways that use what function they have left? Or are we just feeding them quickly ourselves because it’s efficient? Are our processes supporting social connections and a sense of belonging? Are we offering ways for nursing home residents to build relationships and help each other, or do we prevent that because of a fall risk, a wandering risk, or concerns about boundaries? How has our idea of safety prevented us from creatively engaging residents in supporting one another?
Older adults living in nursing homes have a much smaller stage on which they are living out their lives. Their activities and opportunities may be limited to engaging in processes of care — eating, bathing, walking — and engaging with staff and residents formally and informally. These nursing homes are their homes, and the staff and other residents comprise their communities. These interactions are the places where connection and meaning occur. These interactions are the building blocks not just of care, but of selfhood. Their activities of daily living are the places in which wellbeing is created and supported or where wellbeing is nudged aside in favor of efficiency and task completion.
Pages from the What Matters to Me workbook, jointly created by Ariadne Labs and The Conversation Project to help people with a serious illness think through and talk about what matters most to them.
I am reminded here of other work Ariadne Labs has done in its Serious Illness Care Program. The Serious Illness Care Program has developed simple, evidence-based communication tools to help doctors and patients communicate about illness, prognosis, goals, and treatment. Most recently, in collaboration with the IHI’s The Conversation Project, they have developed a workbook for patients to prepare for serious illness conversations with their provider. It offers the patient prompts to respond to so that they can then actually lead the serious illness conversation — this is what I need to know, this is where I have questions, this is where I need your expertise. The patient in control of the process. The goal is the same, but the process is profoundly different. The process shifts the power dynamics and puts the patient back in the center of care, as the leader of their own team, rather than the one responding to the physician-led conversation.
What matters is my very human self, and the pathways to supporting that humanity include supporting autonomy, security, belonging, and meaning. That is a very different goal. That may be the paradigm shift needed in our care.
Autonomy, security, belonging, meaning — these are not places we get to. These are not goals to attain. These are always works in progress. It may be less about whether or not the task was completed, but whether autonomy and connection were present and encouraged while we attempted our care. These are processes and approaches and lenses towards our work, which are harder to build, implement, and measure. And yet, I believe, this is what matters to many of us. Yes, the Red Sox. Yes, visits with my family. But more broadly, what matters is my very human self, and the pathways to supporting that humanity include supporting autonomy, security, belonging, and meaning. That is a very different goal. That may be the paradigm shift needed in our care.
In order to transform the care we provide in nursing homes and make them into places where we want to work and live, we need to re-imagine our goals of care as goals of processes, as goals around ways of being and seeing, not as checking off goals attained. Together, as clinicians and patients, residents and caregivers, family and staff, we can build nursing home communities where we would want to live, communities where belonging, purpose, security, and autonomy are the tools we use to create the outcomes of wellbeing.
Rachel Broudy is a physician board-certified in Internal Medicine and Hospice and Palliative Care. She is an Associate Faculty at Ariadne Labs and Medical Director of Pioneer Hospice and Palliative Care. She is passionate about building wellbeing and equity into our systems of care.Illustration by Maltiase / iStock