Sei sulla pagina 1di 4

A Framework for Reducing Suffering in Health Care

by Deirdre E. Mylod and Thomas H. Lee | 1:00 PM November 14, 2013

Patients suffer predictably and so obviously that they bring clichs to life. They
wince with pain. They shudder with fear. They lose sleep because of anxiety and
confusion. And, as they suffer, they turn to medicine for help. But medicine,
increasingly, has not provided them with relief.

A century ago, little could be done to alter the course of disease, but clinicians
understood suffering and their role in addressing it. They acknowledged it, they gave
drugs to relieve pain, and they took the time to bear witness to what their patients were
enduring. But in recent decades, spectacular medical progress has made many diseases
treatable, and some even curable. Super-specialized physicians learned how to attack
disease in various organs systems, and fatalism has gone out of fashion. Much good has
resulted from that aggressiveness and the narrowed focus of clinicians but patients
suffering has been pushed from center stage into the background. Suffering still goes on,
of course, but it is often overlooked. Perhaps it is overlooked because clinicians are so
busy focusing on the technical details of care, or perhaps it is due to their uncertainty
about how to respond. In fact, the profession so systematically avoids acknowledging
suffering that medical journals dont even use the term to describe a patients
experience. Compliance rates may be said to suffer, but not patients. (See Thomas H.
Lees essay The Word that Shall Not Be Spoken in the November 7, 2013 New
England Journal of Medicine.)

The time has come to deconstruct suffering break it down into meaningful categories
that reflect the experience of patients and help caregivers identify opportunities to
reduce it. Just as medical science has broken down patients clinical needs and created
corresponding specialties, we propose a framework for major types of patient suffering
so that health care providers can organize themselves to address suffering more
effectively. Our hope is that this framework will show that suffering is neither too vast
nor too vague to be measured, and that reducing suffering can thus serve as an
overarching performance goal for providers.

We believe that a comprehensive approach to measuring and reducing suffering is not


just an ethical imperative; it makes strategic sense for health care organizations. Those
that can accurately categorize, measure, and mitigate their patients suffering most
effectively will be rewarded with greater market share as well as the loyalty and
retention of clinicians and other personnel. These personnel will take pride in and be
motivated by the shared purpose of reducing suffering more than is possible with
financially driven goals alone. From our experience in direct patient care and
measuring the patient experience, we believe that when you deconstruct suffering
that is, tease it apart to reveal underlying distinct and addressable components
instead of deconstructing patients by reducing them to the sum of a set of diseases or
symptoms, you have a chance of leaving the patient whole, and delivering care that is
truly patient-centered.
Types of Suffering

For any categorization framework to be useful, it must logically lead to distinct and
effective responses. As the table below shows, we begin by dividing suffering into that
which is unavoidable (e.g., pain caused by a disease) versus that which can be avoided
(e.g., delays and confusion before or after the diagnosis is made). For suffering that is
unavoidable, health care providers should organize themselves to anticipate, detect, and
mitigate patients distress. For suffering that is avoidable, providers should perform
these same roles, but also have a duty to measure and implement strategies that prevent
the dysfunction that causes the suffering.

Unavoidable suffering

Unavoidable suffering is divided into two major types suffering due to disease and
suffering due to treatment. Before and after diagnosis, patients may have unavoidable
suffering directly due to the specific condition they are experiencing. The disease or its
complications may cause pain, other symptoms, or reduced function. Beyond such
clinical issues, knowing their diagnosis often creates anxiety and fear, or a feeling of
loss of control. It can challenge relationships and alter life plans.

Once patients begin to receive treatment for their illness or condition, they often
experience unavoidable suffering arising from that treatment. Treatment may cause side
effects, pain, discomfort, or loss of function whether it ultimately leads to recovery or
only slows their decline. Additionally, patients may feel confused and anxious about
having to navigate unfamiliar territory both the physical structures and often arcane
processes of the health care system. And treatment itself can be frightening.

Though these two types of suffering may be unavoidable, they are not untreatable
and, in fact, addressing them constitutes the agenda for many, if not most, interactions
between patients and clinicians. In those interactions, physicians in particular tend to
focus upon clinical suffering reducing symptoms, treating the underlying illness and
managing side effects. But all clinicians have additional opportunities to mitigate
psychosocial suffering by providing information, orienting patients to the foreign
environment, acknowledging and helping to reduce their anxiety and fears, showing
compassion, and establishing trust.

Avoidable Suffering

The third category of suffering the avoidable suffering that comes from dysfunction
in health care delivery is a type that patients do not anticipate but is often accepted
by care givers as part of life. Preventable complications are one cause of such misery,
but others are in fact much more prevalent. Patients endure waits for appointments, test
results, and explanations, and even for their caregivers to communicate with one another
about their care. Poor coordination leads to confusing communication with patients.
Rocky transitions and hand-offs, or an apparent lack of concern about safety, erode
patients trust. All of this can feed anxiety, frustration, and fear. That special patients,
such as the family and friends of clinicians, often speed through the system without
delays shows that such waits and dropped balls are indeed avoidable sources of
suffering.

Measuring Suffering

The first step in reducing suffering must be to measure it. Today, our patient-experience
data show that contrary to earlier assumptions, patients have always placed non-clinical
offerings such as hospitality amenities or service interactions such as good food and
parking in perspective; they matter somewhat, but not nearly as much as quality of care,
control of pain, clarity of communication, emotional support, shared decision-making,
and coordination of care. These factors are essential in building trust and confidence,
which are in turn essential for reducing suffering. To be sure, soothing environments,
exceptional courtesy and responsiveness, and even amenities designed to distract
patients from their worries can help reduce suffering but what has changed is the
reliance on such tactics as the main focus for improving care. What has also changed is
the understanding that defects in care do indeed exist. Before transparency,
improvements in patient experience were often described as attempts to delight or
wow patients because an implicit assumption had been made that care was already
uniformly good. With the advent of publicly reported data, its now clear that significant
opportunities exist to remedy deficits in care.

One fundamental and measurable issue that cuts across all three types of suffering is
pain, the unavoidable cause of which may be the patients disease (e.g., cancer) or
treatment (surgery). However, pain that is undetected (because clinicians did not ask) or
under-treated it represents avoidable suffering. The pain itself is not the only form of
suffering; if patients are not responded to with empathy and a sense of urgency,
caregivers increase their anxiety and fear, while eroding their trust.

Another measurable source of avoidable suffering is patients experience of staff


coordination. Patients experience of poor handoffs, lack of consistent knowledge of
their treatment plan, conflicting opinions, or less than collegial behavior among their
caregivers creates anxiety. In fact, patients evaluations of the degree to which staff
worked together to care for them represent the strongest single correlate of their overall
evaluations of the hospital (correlation with HCAHPS rating of the hospital is .90).

As insight into the importance of patients reports of their experience has grown,
providers have realized that they need reliable data and more of it, so they can
analyze improvement opportunities at more granular levels. Thus, providers need
enough data so they can segment analyses on the basis of patient characteristics and
provider variables down to the level of the individual physician. Segmenting by
geography (i.e., patient care unit), shift or day of the week helps organizations pinpoint
when and where dysfunction may be causing patients suffering. Ideally, patient
evaluations of their experiences and other outcomes should be continuously collected
for all patients as part of their care and to support organizational improvement.

Linking episodes of care, gathering real time assessments from patients and fully
understanding the risk or resiliency patients bring to the care experience will transform
our understanding of the suffering that exists and the suffering that we inflict through
dysfunction. Future quality measures may expand on the concept of suffering to
incorporate measures of disparity in suffering across patient populations.

Reducing Suffering

Reliably providing evidence-based clinical care is essential to reduce patients suffering


but it is not the only way. Indeed, excellent clinical care is necessary but not
sufficient. As discussed, care givers must also build trust and relieve anxiety.

Skeptics may wonder if qualitative improvement in the control of anxiety, confusion,


and fear is possible. In fact, such improvement is already well underway, as
demonstrated by patient experience data collected from patients receiving care from
hospitals, ambulatory groups, and other providers. This progress seems to be driven in
particular by improvement in nurse communication, pain control, and care
coordination. Nevertheless, these data also demonstrate marked variability among
providers in these measures, and opportunities for improvement for all.

Ironically, this variability is a cause for optimism as it reveals that that improvement is
possible. The patients who touch us, who become our favorites, or who, as friend or
family have VIP status and for whom we therefore go far out of our way, help us to
understand what addressing suffering means. The gap between how we treat them and
how we treat everyone else demonstrates the distance we need to travel and the
opportunities to improve.

Potrebbero piacerti anche