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Serious Illness Communications Checklist

Authors:
  • Dana-Farber Cancer Institute, Brighsm and Women's Hospital, Harvard Medical School

Abstract and Figures

The goal of the Serious Illness Communication Checklist is to improve care for patients with serious illnesses and their families by facilitating and documenting discussions about end-of-life issues at the right time in the right way.
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Communication About Serious Illness Care Goals
A Review and Synthesis of Best Practices
Rachelle E. Bernacki, MD, MS; Susan D. Block, MD; for the American College of Physicians High Value Care Task Force
Effective communication plays a major role in facilitating ad-
aptation to illness realities, appropriate decision making, and
quality of life
1,2
throughout the trajectory of a serious ill-
ness. As patients approach the end of life, communication about
goals of care and planning is a key element in helping assure that pa-
tients receive the care they want, in alleviating anxiety, and in sup-
porting families.
3-5
Effective communication supports, not only end-
of-life care, but quality of life throughout the illness trajectory, even
if death is not an imminent outcome.
In this review, we evaluate current practices in communica-
tion about serious illness, their effects on patients, and factors that
may influence these practices; we conclude by identifying best
practices in communication about goals of care in serious illness,
primarily in the ambulatory setting. On the basis of this assess-
ment, we propose a systematic approach, informed by evidence,
to help assure that each seriously ill patient has a personalized
serious illness treatment plan. The most common clinical condi-
tions relevant to this discussion include cancer, congestive heart
failure, chronic obstructive pulmonary disease, and chronic kidney
disease and/or end-stage renal disease. This work was undertaken
as part of the American College of Physicians (ACP) High Value
Care Initiative and subsequently endorsed by the High Value Task
Force of the ACP.
Methods
We conducted a narrative review of evidence about advance care
planning and end-of-life communication practices to provide clini-
cians with practical, evidence-based advice. Both observational and
intervention studies were included, as well as indirect evidence from
high-quality studies of palliative care specialist interventions that ad-
dress the impact of communication about serious illness care plan-
ning on outcomes. We use the term serious illness care goals to in-
clude discussions about goals of care, advance care planning, and
end-of-life discussions for patients with serious illness to empha-
size the targeted population and the potential impact on these dis-
cussions, not just for the very end of life but for care throughout the
course of serious illness. In citing specific studies, we use the terms
(eg, end-of-life care) used by the authors (see eMethods in the
Supplement for a detailed description of methodology). For a sum-
mary of the ACP High Value Care Advice, see Box 1.
An understanding of patients’ care goals in the context of a serious illness is an essential
element of high-quality care, allowing clinicians to align the care provided with what is most
important to the patient. Early discussions about goals of care are associated with better
quality of life, reduced use of nonbeneficial medical care near death, enhanced goal-consistent
care, positive family outcomes, and reduced costs. Existing evidence does not support the
commonly held belief that communication about end-of-life issues increases patient distress.
However, conversations about care goals are often conducted by physicians who do not know
the patient, do not routinely address patients’ nonmedical goals, and often fail to provide
patients with sufficient information about prognosis to allow appropriate decisions; in
addition, they tend to occur so late in the patient’s illness that their impact on care processes is
reduced. This article (1) reviews the evidence and describes best practices in conversations
about serious illness care goals and (2) offers practical advice for clinicians and health care
systems about developing a systematic approach to quality and timing of such communication
to assure that each patient has a personalized serious illness care plan. Best practices in
discussing goals of care include the following: sharing prognostic information, eliciting
decision-making preferences, understanding fears and goals, exploring views on trade-offs
and impaired function, and wishes for family involvement. Several interventions hold promise
in systematizing conversations with patients about serious illness care goals: better education
of physicians; systems to identify and trigger early discussions for appropriate patients; patient
and family education; structured formats to guide discussions; dedicated, structured sections
in the electronic health record for recording information; and continuous measurement. We
conclude that communication about serious illness care goals is an intervention that should be
systematically integrated into our clinical care structures and processes.
JAMA Intern Med. doi:10.1001/jamainternmed.2014.5271
Published online October 20, 2014.
Supplemental content at
jamainternalmedicine.com
Author Affiliations: Author
affiliations are listed at the end of this
article.
Group Information: Individuals who
served on the High Value Care Task
Force from initiation of the project
until its approval include John
Bielbelhausen, MD, MBA, Sanjay
Desai, MD, Lawrence Feinberg, MD,
Carrie A. Horwitch, MD, MPH, Linda
L. Humphrey, MD,MPH, Robert M.
McLean, MD, Tanveer P. Mir, MD,
Darilyn V.Moyer, MD, Kelley M. Skeff,
MD, PhD, Thomas G. Tape, MD,
Jeffrey Wiese, MD, and Amir Qaseem,
MD, PhD, MHA (Chair).
Accepted for Publication: July 31,
2014.
Corresponding Author: Rachelle E.
Bernacki, MD, MS, Division of Adult
Palliative Care, Department of
Psychosocial Oncology and Palliative
Care, Dana-Farber Cancer Institute,
450 Brookline Ave, Boston, MA
02215 (rbernacki@partners.org).
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Current Serious Illness Communication Practices
A consistent and large body of mostly observational research shows
that patient, physician, and system factors all contribute to defi-
ciencies in serious illness care communication.
6,7
Patient Factors
Patient Emotions
Patient emotions may inhibit discussion and understanding. Anxi-
ety and denial are 2 critical patient-related factors that regularly
contribute to challenges in discussing serious illness care goals. All
patients with a serious illness experience some anxiety; one-
quarter to one-half of all patients with advanced cancer experience
significant anxiety symptoms, and 2% to 14% have anxiety
disorders.
8
Clinicians describe titrating discussions of end-of-life
issues with patients to avoid overwhelming patients with anxiety.
Avoidance may, in turn, make it more difficult for distressed
patients to accept the realities of their illness and to engage in real-
istic planning for the future.
Denial of terminal illness is common and can be “healthy” if it
facilitates adaptation. However, when denial impairs patients’
Box 1. Summary of the American College of Physicians (ACP) High Value Care Advice on Communication in the Care of Patients With Serious
and Life-Threatening Illness
Disease or Condition
Communication for patient with serious and life-threatening illness.
Target Audience
Internists (including oncologists, cardiologists, nephrologists, and
intensivists), family physicians, and other clinicians who care for
patients with serious and life-threatening illness.
Target PatientPopulation
All patients with serious and life-threatening illness.
a
Indications for Communication
Examples:
Solid tumor with metastases, hypercalcemia, or spinal cord
compression.
CHF, class III or IV with 2 or more hospitalizations.
CKD, on dialysis, age 75 years or older.
COPD, on home oxygen with FEV1 less than 35% predicted.
All patients whose physicians answer “no” to the following ques-
tion: “Would you be surprised if this patient died in the next year?”
Evidence That Early Communication About Goals of Care
and End-of-Life Preferences Improves Care
End-of-life conversations are associated with better quality of life,
reduced use of life-sustaining treatments near death, earlier hospice
referrals, and care that is more consistent with patient preferences.
Patients who received early palliative care showedsignif icant improve-
ments in quality of life and mood, and survived 25% longer.
b
Patients who engaged in advancecare planning were more likely to have
their wishes known and followed.
Preparation for the end of life is associated with improved bereave-
ment outcomes for family.
Potential Harms of Communication
Strong preponderance of evidence shows no increased depression,
anxiety, hopelessness.
Potential Costs of Communication
Increased clinician time.
Harms of Failure to Address Goals of Care and/orEnd-of-Life Issues
Patient receipt of care not consistent with personal goals.
Worse quality of life.
Prolonged death with increased suffering.
Worse bereavement outcomes for family members.
Increased costs without benefit to patients.
Barriers to Communication
Patient factors: anxiety,denial, de sire to protect familymembers.
Clinician factors: lack of training, comfort, and time, difficulties in
prognostication.
System factors: life-sustaining care is the default, no systems for
end-of-life care, poor systems forrecording patient wishes, ambiguity
about who is responsible.
Approaches to Overcome Barriers to Communication
About Patient Values and Goals
Provide communication training for clinicians, especially about
prognostication.
Improve documentation and exchange of information about patient
values and goals through information technology.
Create real-time monitoring and feedback on performance for
clinicians.
ACP High ValueCare Advice
Communication about goals of care is a low-risk, high-value interven-
tion for patients with serious and life-threatening illness; these discus-
sions should begin early in the course of life-limiting illnesses. Ideally,
communication about serious illness care goals should come from the
patient’s primary clinician evenwhen a team of clinicians is involved with
the patient’s care. Earlydiscussions about end-of-life care issues are as-
sociated with improved patient outcomes, including better quality of
life, reduced use of nonbeneficial medical care near death, and care
more consistent with patients’ goals. This approach is also associated
with improved family outcomes and reduced costs. Keyelements of a
system to help assure that every patient has a personalized serious ill-
ness care plan include training clinicians, identifying patients at risk of
dying, preparing and educating patients, “triggering” physicians to con-
duct discussions at the appropriate time, having a structured commu-
nication format for goals of care discussions, establishing a system to
assure documentation of these discussions, and using metrics to mea-
sure performance. The ACP supports the need for improving our ap-
proach to serious illness and end-of-life care, as well as the system
changes needed to assure thoughtful and timely communication with
patients and their family members across all health care settings.
a
Serious illness (life expectancy <1 year).
b
Evidence shows that palliative care consultation is approximately 50%
communication and patient education.
Abbreviations: CHF,congestive heart failure; CKD, chronic kidney disease;
COPD, chronic obstructive pulmonary disease; FEV1, forced expiratory volume
in the first second.
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ability to appreciate reality and engage in an informed manner
with key decisions, it becomes maladaptive. Denial tends to be
amplified in situations of high anxiety and crisis, such as hospital-
ization; in such situations, patients often lack cognitive and emo-
tional resources to manage strong feelings and difficult decisions,
such as those related to end-of-life care.
2
Although guidelines
recommend that initial discussions of goals of care and end-of-life
preferences are best conducted when the patient is relatively
stable,
9
the majority (55%) of first discussions in a large cancer
population took place in the inpatient setting.
2
In a recent study of patients with either metastatic lung or colo-
rectal cancer, most (69%of those with lung cancer and 81% of those
with colon cancer) did not understand that chemotherapy was very
unlikely to cure their cancer.
10
The contribution of misunderstanding
driven by patient emotions, as opposed to inadequate disclosure, is
not known. One of the ramifications of this finding, however, is that
anxiety, denial, and misunderstanding may make it difficult for pa-
tients to consider end-of-life care options such as hospice, even when
such an option may be well-aligned with the patient’s priorities.
11
Patient Expectations
Patients, in general, expect their physicians to initiate discussions about
advance care planning and end-of-life preferences.
12
In this context,
physician reluctance to broach these issues may prevent them from
occurring at all, leaving physicians to make decisions about care with-
out adequate information about patients’ wishes.
Differences in Patient Preferences
There is dramatic geographic variation in the use of intensive care
services across the United States, leading to considerable variation
in costs. Questions have been raised about whether intensive care
that is provided in high-use geographic areas is beneficial.
13,14
Data
suggest that differences in patient preferences are unlikely to ex-
plain regional variations in use of aggressive care at the end of life.
15
Physician Factors
Physician attitudes appear to have considerable impact on whether
and when these discussions occur, with physicians describing re-
luctance to initiate them when the patient appears well, does not
have symptoms, or has not exhausted all treatment options.
16
Time
constraints are cited by many physicians as a significant barrier
17
to
end-of-life discussions.
End-of-Life Communication Training
Many physicians feel poorly prepared to conduct end-of-life
conversations.
18
Although oncologists, nephrologists, and other cli-
nicians need to communicate about end-of-life care with patients
frequently (an average of 35 times a month for oncologists)
19
and
express a strong desire for more learning about end-of-life commu-
nication, few trainees report receiving adequate training in commu-
nication about end-of-life issues.
20
For example, 72% of nephrol-
ogy fellows report lack of preparation to manage the end-of-life care
of a patient who stops dialysis and 73% were not taught how to com-
municate that a patient was dying.
21
Comfort Level in Discussing End-of-Life Issues
Talkingabout death and dying can be distressing to patients and phy-
sicians alike. Physician barriers appear to be more common than pa-
tient barriers to end-of-life communication.
16
Physicians report that
they are reluctant to initiate end-of-life discussions and are uncom-
fortable with the process because these discussions stir up difficult
emotions.
22
Many physicians feel inadequate in managing the emo-
tional and behavioral reactions of patients.
23
Timing of Discussions
Physicians do not routinely initiate end-of-life discussions until late
in the course of illness. In a large, population-based prospective
cohort study of patients with metastatic lung and colorectal can-
cer, the first conversation about end-of-life care took place an
average of 33 days before death.
24
Similarly, a large study of
patients receiving dialysis found that 90% reported that their phy-
sicians had not discussed prognosis with them,
7
despite an annual
mortality rate of 22%.
One effect of delay in discussions about end-of-life goals is that
discussions of care options, such as hospice, which are associated
with consistently superior outcomes for both patients and family
members, occur very late in the patient’s disease trajectory; 15% of
hospice patients are referred in their last week of life, where ben-
efits that accrue over time to the patient and family may be
limited.
25,26
Earlier discussions about the realities of an advancing
illness and the role of hospice care in meeting patient goals allows
patients to choose the care trajectory that will best meet their goals.
27
Indeed, in a study of patients with gastrointestinal cancers examin-
ing potentially avoidable hospitalizations, rehospitalizations were
6 times less frequent in patients whose physician had discussed the
option of hospice care.
28
Uncertainty About Prognostic Accuracy
While a majority of patients want to discuss prognosis with physi-
cians and the discussions are intimately linked to good personalized
clinical decision making, many physicians hesitate to provide informa-
tion because of uncertainty about prognostic accuracy and fear of
harmingthepatient.
29
Whentheydo discuss prognosis, physicians tend
to be overly optimistic and to “shade”prognostic estimates in a favor-
able direction.
30
These practices influence patient decision making: pa-
tientswith cancer who believed they were likely to live at least 6 months
made decisions in favor of more interventions compared with pa-
tients who thought that there was at least a 10% chance of death within
6 months.
31
A subsequent study showed that these optimistic pa-
tients did, indeed, receive more life-sustaining treatments.
32
Addressing Patients’ and Families’ Psychosocial Concerns
Physicians often do not address patients’ and families’ psychoso-
cial concerns, including those about dying. Physicians tend to fo-
cus on diagnoses, treatments, and procedures in discussions about
medical care at the end of life. While survival and treatment consid-
erations are certainly significant to patients, the broad range of hu-
man concerns about the end of life—for loved ones, for spiritual well-
being, for having the opportunity to say good bye, forindependence
and control, for comfort
33
—are often inadequately understood and
integrated by physicians into the patient’s overall treatment plan.
Palliative care experts tend to explore these nonmedical issues and
to be more patient centered in their discussions with patients about
goals of care and end-of-life planning.
Patients regularly bring up concerns related to dying with their
physicians to which the physicians do not respond.
34
In a study of
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patients with congestive heart failure, 18%of patients expressed con-
cerns about dying; physicians followed up on only 16% of these
concerns.
34
Physicians frequently avoid these discussions by hedg-
ing (eg, not committing to a prognosis estimate when questioned)
or changing the subject (eg, discussing diagnostic tests).
34,35
System Factors
Life-Sustaining Treatment as Default
Although over 70% of the Medicare population want interventions
designed to palliate suffering at the end of their lives, even if it means
living for less time,
15
our health care system is oriented toward pro-
viding life-sustaining treatment, unless a patient actively chooses
against it. In the absence of conversations about prognosis, goals,
and outcomes of treatment, patients do not have the opportunity
to express their values and preferences, leading clinicians to as-
sume that patients want additional interventions, even late in the
illness. For example, among patients with chronic kidney disease re-
ceiving dialysis, 61% regretted initiating dialysis; 52%repor ted that
dialysis was chosen because it was the physician’s wish.
7
Recent research suggests that more interventions and life-
sustaining treatments are associated with poorer patient quality of
life and higher levels of family distress.
1,36
Most patients wish to die
at home and to avoid invasive measures,
37,38
yet most (52%) die in
institutional settings, including hospitals and nursing homes,
39
and
29% die after a stay in the intensive care unit in the last 3 months of
life.
40-42
In cancer care, palliative chemotherapy is used frequently
in the last 3 months of life, with 12% of patients receiving chemo-
therapy within 14 days of death.
40,43
However, there appears to be
no additional survival benefit in continuing treatment within 14 days
of death.
44
While it is difficult to prospectively ascertain that a pa-
tient is within their last 2 weeks of life, and some patients will ap-
propriately receive chemotherapy during this time, patients who re-
ceive chemotherapy in the last 2 weeks are less likely (51% vs 81%)
to enroll in hospice or enroll late.
44
Receipt of palliative chemo-
therapy in the last 4 months of life was associated with an in-
creased risk of undergoing cardiopulmonary resuscitation, mechani-
cal ventilation, or both and of dying in an intensive care unit
36
; thus,
chemotherapy in the last 14 days of life has been proposed as an in-
dicator of poor-quality care.
43
While numerous commonly used treatment approaches are ap-
propriate for patients for whom the goal is life prolongation (eg, mini-
mization of opioid use, hospitalization, intensive care unit admis-
sion), many of these treatments are inappropriate and ineffective
for patients with very advanced disease. Conversely, patients who
are approaching the end of life want and benefit from intensive psy-
chosocial and spiritual support, careful but intensive use of medi-
cation for pain and other symptoms, and care in the home.
33
Be-
cause patients often are not aware that they are at the end of life,
they may overuse life-prolonging treatment and underuse services
that support quality of life (Box 2).
A Systematic Approach to Serious Illness Care Planning
Patients can plan for the end of life and make decisions about seri-
ous illness care goals through advance care planning—comprehen-
sive, ongoing, patient-centered communication between physi-
cian and patient (or the patient’s designated proxy) about values,
treatment preferences, and goals of care.
53
The reported preva-
lence in the United States of advance care planning varies between
18% and 70%.
53-55
Few health care systems have developedstruc-
tures and processes that systematically address advance care plan-
ning, even for patients with serious illness; many physicians lack un-
derstanding of the process of advance care planning and how it
affects care.
56,57
Ambiguity About Who Is Responsible
Although early discussions about serious illness care require discus-
sion in the ambulatory setting, discussions about goals of care are
not routinely integrated into outpatient care. Indeed, the physician
who is providing care for the patient’s serious illness often does not
conduct the goals of care conversation.
Patients report mixed views on their preferences about which
clinician they prefer to engage with in discussing serious illness care
planning.
58,59
Many primary care physicians report being unsure of
their role in discussing preferences for future care when the pa-
tient is cared for by a specialist. Different specialists may have dis-
cussions of goals and treatment options, without adequate com-
munication with other members of the team about what the patient’s
preferences are. Experts suggest that optimal care occurs when the
multiple clinicians involved in the patient’s care agree that 1 physi-
cian will assume primary responsibility for addressing and commu-
nicating about end-of-life issues and communicate the outcomes of
these discussions to the entire team.
60
Variation in Location and Quality of Documentation in EHRs
No consistent standard for location and quality of documentation
in electronic health records (EHRs) exists. Electronic health rec-
ords have become a major vehicle for communication about clini-
cal care across a fragmented health system. However, information
about serious illness care goals and advance care planning is not read-
ily available or consistently recorded in the EHR for retrieval. Ad-
vance care planning information is found 69% of the time in prog-
ress notes, 43% in scanned documents, and 34% in problem lists,
Box 2. Therapies With Potential Overuse and Underuse
Potential Overuse
Life-sustaining therapies at end of life
13,15
Chemotherapy
43
Radiation therapy
45
Intensive care unit admission
41
Surgery
46
Feeding tubes
47
Imaging
48
Hospitalization
39,42
Nonbeneficial medications
49,50
Potential Underuse
Early conversations about serious illness care goals and values
2
Hospice with length of stay greater than 14 days
26
Family support
39
Carefully titrated pain control with frequent follow-up
51
Nonpain symptom management
Psychosocial and spiritual support
52
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with many patients having documentation in multiple EHR loca-
tions, often with considerable inconsistencies.
61
Impact of Communication About Serious Illness
Care Preferences
Although potentially time consuming,
62
absent, delayed, or inad-
equatecommunication about end-of-lifepreferences is associated with
poor quality of life and anxiety, family distress,
1,39
prolongation of the
dyingprocess, undesired hospitalizations, patient mistrust of the health
care system,
32
physician burnout,
63
and high costs.
64-66
Improved Clinical Outcomes
In a prospective, multisite study to assess coping of patients with
cancer,investigators found that only 37% of a population of 332 pa-
tients, on average 4 months before death, reported having dis-
cussed end-of-life issues with their physicians.
1
When conversa-
tions were reported, patients reported better quality of life, received
less aggressive medical care near death, and were referred earlier
to hospice.
1
Patients who reported having had an end-of-life con-
versation were more likely to know that they were terminally ill, to
report peacefulness, and to desire and receive less-invasive care.
67
Bereavement adjustment for families wasalso be tter.
1
However,p a-
tients who were less anxious about dying may have been more re-
ceptive to discussions about end-of-life care than those who were
in more distress about their illness; further research is needed to
clarify the directionality of this association. In a recent randomized
clinical trial (RCT), patients with metastatic lung cancer were ran-
domized at diagnosis to receive concurrent palliative and oncology
care or oncology care alone (with palliative care consultation as
needed).
68
Relative to the control population, palliative care pa-
tients had significantly better quality of life and mood, as well as 25%
longer survival.
68
The primary focus of the palliative care interven-
tion was on communication, patient education, and planning for care
to address medical realities.
69
Two recent studies of advance care planning in general medical
populations also demonstrated positive results.
3,70
An RCT of an
intervention designed to increase advance care planning discus-
sions demonstrated that patients who received the intervention
and died within 6 months were more likely to have their wishes
known and followed (86% vs 30%).
3
A separate large study dem-
onstrated that having a living will or health care agent was associ-
ated with a higher likelihood of patients receiving the care they
desired at the end of life.
70
Further research is needed to confirm
these findings.
No Increase in Anxiety, Depression, and Loss of Hope
In general, the existing evidence does not support the commonly
held belief that communication about goals of care and end-of-
life issues increases patient anxiety, depression, and/or
hopelessness.
2,3,71,72
Patients and families want open and honest
information and a balance between realistic information and
appropriate hope.
73
A study investigating surrogate decision
makers’ attitudes toward balancing hope and truth telling when
discussing prognosis found that giving a sense of false hope or
avoiding discussions about prognosis was viewed as an unaccept-
able way to maintain hope.
74
Surrogates believed that a realistic
view of a patient’s prognosis allowed them to better support the
patient and each other.
74
However, if physicians are not trained to
conduct sensitive, effective discussions, patients may be dis-
tressed by discussing these difficult issues.
72
Reduction in Surrogate Distress
Surrogates, usually family members, commonly are required to
assume responsibility for medical decision making for patients
and frequently experience negative sequelae from their role.
75
In
a large study of patients older than 60 years, of those patients
who required decisions, 70% did not have decision-making
capacity, leaving decisions to surrogates or to previous advance
directives.
70
In a systematic review, the effect of surrogate deci-
sion making had long-lasting negative consequences for a third of
Box 3. Potential Triggersfor End-of-Life Communication
by Disease
Cancer
81
Prognosis-related triggers
“Would you be surprised if this patient died in the next year?”
Disease-based/condition-based criteria
All patients with non–small cell lung cancer,pancreatic cancer, glio-
blastoma
Patients older than 70 years with acute myelogenous leukemia
Treatment-based identification
Third-line chemotherapy
Chronic Obstructive Pulmonary Disease
6
Lack of further treatment options
Functional decline
Symptom exacerbation
Ongoing oxygen requirement
Hospitalizations
Congestive Heart Failure
82
Increased symptoms
Reduced function
Hospitalization
Progressive increase in diuretic need
Hypotension
Azotemia
Initiation of inotrope therapy
First or recurrent shock
End-Stage Renal Disease
83,84
Prognosis-related triggers
“Would you be surprised if this patient died in the next year?”
Albumin level less than 3.5 g/dL
Age (as a continuous variable)
Dementia
Peripheral vascular disease
General
Older than 80 years and hospitalized
3
Prognosis-based criteria (http://www.eprognosis.org)
85
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surrogates.
75
Common adverse effects cited by surrogates were
stress, guilt over the decisions they made, and doubt regarding
whether they had made the right decisions.
75
When surrogates
knew which treatment was consistent with the patient's prefer-
ences, it reduced the negative effect of making decisions.
Reduction in Costs
Direct data on actual costs related to communication about
advance care planning are limited, although there are several stud-
ies examining costs in palliative care.
65,66,76
In a multisite study
investigating expenses and end-of-life discussions, costs were
35.7% lower among patients reporting having had an end-of-life
discussion, with average cost savings of $1041 per patient in the
last week of life.
64
In a lung cancer palliative care RCT, those who
received early and ongoing palliative care experienced fewer inter-
ventions and spent 29% less time in the hospital.
68,69
The ongoing
communication about goals of care that is part of palliative care
practice
69
may also have played a role in reducing hospitalizations.
Increasing the practice of early end-of-life discussions has been
proposed by experts as 1 of 5 key changes that can “bend the cost
curve” for oncology care.
77
Data Summary
Our review of the evidence demonstrates that there is consistent
but often low- to moderate-quality evidence in the field of oncol-
ogy for the benefits of discussions and emerging evidence in other
diseases (congestive heart failure, chronic obstructive lung disease,
and chronic kidney disease). Data, especially from oncologic stud-
ies, show substantial and highly consistent associations between
failure and delay in discussing end-of-life care options and poor
outcomes. There is moderate-quality evidence from multiple stud-
ies that discussions do not harm oncology patients. We have not
found any data about the impact of conducting early end-of-life
discussions on subsequent clinician time investments (ie, an
upfront investment of time could save time in the long run). A
large, diverse, and consistent body of evidence demonstrates that
early discussions of serious illness care goals are associated with
beneficial outcomes for patients, without harmful adverse effects
and with potential cost savings. Thus, we believe that there is a
strong rationale for recommending that clinicians initiate early dis-
cussions with all patients with serious illness. However, more
research, using high-quality methods, is needed to strengthen this
conclusion and to better evaluate the impact of these discussions
in nononcologic diseases.
Practical Guidance for Clinicians
A systematic, multicomponent intervention holds the greatest po-
tential for improving serious illness care planning and is aligned with
existing evidence. We propose the following steps: train
clinicians
78-80
to enhance competencies in conducting discus-
sions; identify patients at risk; develop “triggers” to assure discus-
sions take place at the appropriate time (Box 3); use a checklist or
Box 4. A Systematic Approach to Discussions of Serious Illness Care Goals
Train Clinicians
Interactive case-based sessions with communication skills practice are
effective
Participants show sustained improvement in patient-centeredskills
Significant improvement in responses to patients’ emotional cues
Clinician training is necessary to enhance effectiveness of checklists,
as in aviation and surgery
86-88
Identify Patients at Risk
Standardize the timing and conduct of early goals of care discussions
by identifying patients at high risk of death in the next year, for
example:
End-stage heart disease with two or more hospitalizations
Poor-prognosis cancers
Patients older than 75 years with end-stage renal disease
“Trigger” Conversations in the Outpatient Setting Before a Crisis
Develop criteria for appropriate timing of initial discussions (eg, all
patients should have documentation of an initial conversation about
serious illness care goals at the time of initiating second-line
chemotherapy)
Make “triggers” a routine part of ambulatory care
Educate Patients and Families
Initiate discussions before decisions are required
Provide patients with appropriate information about prognosis, based
on their information preferences and the limits of uncertainty
Focus initially on goals and values about care before discussing
procedures
Encourage discussion of nonmedical goals
Encourage patients and their families to reflect on and clarify their
wishes through discussion on an ongoing basis
Use a Checklist or Conversation Guide
Since conversations about serious illness care goals are challenging, high
stress, and emotionally difficult for physicians and patients,
78,91-93
use
of a checklist supports clinicians and assures completion of key steps
in the conversations (see Figure)
Improve Communication of Critical Information
in the Electronic Medical Record
Designate a site in the electronic medical record for a “single source
of truth” for recording and retrieval of patients’ values, goals, and
preferences for care, as well as other key information, including:
Health care proxy
Medical orders for life-sustaining treatments
Code status
Measure and Report Performance
Develop appropriate performance standards for high-quality care
that include key indicators related to discussion and documentation
of serious illness care goals
To accelerate improvement, simple measures of the presence of
advance care planning information are likely to be inadequate.
Indicators of quality of discussion are essential
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conversation guide to support clinicians and assure adherence to best
practices
86-88
; provide a structured documentation template for se-
rious illness care goals in the EHR
89
; and measure performance
90
(Box 4). Key elements that should be addressed with patients are
described in the Figure and include the following:
1. Understanding of Prognosis: Physicians should explore prognos-
tic understanding to ascertain the patient’s degree of aware-
ness and acceptance of the diagnosis and illness course. This will
allow the physician to titrate his or her discussion to address the
patient’s level of understanding
78,91-94
and respect patient vul-
nerabilities.
2. Decision Making and Information Preferences: Patient desire for
information about the future can be a significant unmet need in
serious illness.
95
Understanding the patient’s preferences for in-
formation and for involvement in decision making allows the phy-
sician to provide desired information, helps the patient retain con-
trol, and gives the physician confidence in proceeding further into
a difficult discussion.
3. Prognostic Disclosure:The physician has a responsibility to pro-
vide patients with information about prognosis to the degree de-
sired by the patient (and within the limits knowable to the phy-
sician) to enable patients to factor this information into their
decisions.
96
Information about what to expect about their ill-
ness, is considered “very important” by nearly all patients.
29,33
4. Patient Goals: A focus on the broad array of goals that persons have
for their health and well-being aids the physician in tailoring ad-
vice to address key patient life priorities and creating a personal-
ized care plan. Furthermore, a focus on key goals allows the pa-
tient to retain a sense of purpose and control, which are antidotes
to the hopelessness and despair that can arise in serious illness.
Figure. Serious Illness Conversation Guide
Reprinted with permission from
Ariadne Labs.
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jamainternalmedicine.com JAMA Internal Medicine Published online October 20, 2014 E7
5. Fears: Fearsabout future suffering are a major component of pa-
tient distress.
97
Understanding the source and nature of these
fears allows the patient to feel understood and supported and
can allow the clinician to provide appropriate reassurance and to
focus therapies to address patient concerns.
6. Acceptable Function: Patients view impairments in function dif-
ferently and make different choices based on these perspec-
tives. For some patients, maintenance of cognitive function is a
sine qua non for existence to feel worthwhile; other patients may
believe that not being able to eat or provide self-care are intol-
erable deficits that would make them ready to stop or reduce
medical treatments. An opportunity to express views of critical
abilities and tolerable and intolerable states helps guide these
complex decisions.
7. Trade-offs: Patients may view time in the hospital, invasive pro-
cedures, or treatments differently, particularly when weighing
these against the value of time at home or quality of life. Allow-
ing patients to reflect on the trade-offs that might be necessary
to achieve different outcomes promotes informed decision
making.
8. Family Involvement:Patients vary in how involved they want fam-
ily members to be and how much they want their own values, as
opposed to those of family members, to determine care at the
end of life.
98
Family understanding of patient goals and prefer-
ences is associated with better outcomes for family members.
74
By exploring these issues with the patient, the clinician can help
the patient develop a plan for engaging family members in these
critical discussions.
Basic Principles of End-of-Life Communication
Patients want the truth about prognosis.
99
Youwill not harm your patient by talking about end-of-life issues.
1
Anxiety is normal for both patient and clinician during these
discussions.
100
Patients have goals and priorities besides living longer.
33
Learning about patient goals and priorities empowers you to pro-
vide better care.
For communication tips, see the Table.
Conclusions
Although care of patients with serious illness has improved over the
past 15 years, with the growth of hospice use and access to hospital
and clinic-based palliative care services, many opportunities for im-
proving serious illness care still exist. Nonpalliative care specialists
will continue to be responsible for much of this care. Evidence is ac-
cumulating of the value of early discussions with patients about se-
rious illness care goals as a key process for improving end-of-lifeout-
comes. Conversations about serious illness care goals should be
routinely integrated into clinical care processes by all physicians who
care for this population of patients. Quality improvement prin-
ciples teach us that identification of patients at high risk of death,
clinician education, and instituting a systematic approach offer the
best prospects of improving care.
ARTICLE INFORMATION
Author Contributions: Drs Bernacki and Block had
full access to all of the data in the study and take
responsibility for the integrity of the data and the
accuracy of the data analysis.
Study concept and design: Bernacki, Block.
Acquisition, analysis, or interpretation of data:
Bernacki, Block.
Drafting of the manuscript: Bernacki, Block.
Critical revision of the manuscript for important
intellectual content: Bernacki, Block.
Obtained funding: Bernacki, Block.
Administrative, technical, or material support:
Bernacki.
Study supervision: Block.
Published Online: October 20, 2014.
doi:10.1001/jamainternmed.2014.5271.
Author Affiliations: Division of Adult Palliative
Care, Department of Psychosocial Oncology and
Palliative Care, Dana-Farber Cancer Institute,
Boston, Massachusetts (Bernacki, Block); Ariadne
Labs, Brigham and Women's Hospital & Harvard
School of Public Health, Boston, Massachusetts
(Bernacki, Block); Division of Aging, Department of
Medicine, Brigham and Women's Hospital, Boston,
Massachusetts (Bernacki); Center for Palliative
Care, Harvard Medical School, Boston,
Massachusetts (Bernacki, Block); Departments of
Psychiatry and Medicine, Brigham and Women's
Hospital, Boston, Massachusetts (Block).
Conflict of Interest Disclosures: None reported.
Funding/Support: Financial support for the
development of this guideline comes exclusively
from the American College of Physicians (ACP)
operating budget. This work was supported by
Partners Healthcare and the Charina Foundation.
Role of the Funder/Sponsor:The ACP provided
input into the design and conduct of this review,
including the analysis and interpretation of the data
and approval of the manuscript. The funding
organizations had no role in the collection and
management of the data; preparation and review of
the manuscript; and decision to submit the
manuscript for publication.
Additional Contributions: Atul Gawande, MD,
Brigham and Women's Hospital, contributed in the
development of the Serious Illness Conversation
Guide (Figure).
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Clinical Review & Education Special Communication Communication About Serious Illness Care Goals
E10 JAMA Internal Medicine Published online October 20, 2014 jamainternalmedicine.com
... Indeed, earlier pediatric palliative care consultation is a predictor of earlier discussion of advance directives [32]. In addition, there exist guides for such conversations in adults, for example, the Serious Illness Conversation Guide [33], and efforts are currently underway to adapt this guide for use in the adolescent and young adult population [34]. ...
Article
Full-text available
Background: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. Methods: The aim of this project was to enhance the healthcare teams' understanding of bereaved parents' end-of-life care preferences through narratives. Bereaved parents were recruited from our institution's Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child's end-of-life care. Narratives were analyzed using standard qualitative methods. Results: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child's voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. Conclusion: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child's end of life and to remain in contact with them after death.
... advancecareplanning.ca/resource/just-ask/), and the Plan Well Guide™ website (https://planwellguide.com/) are tools that can both remind and facilitate family physicians in their efforts to initiate these conversations with their patients. Validated communication tools, such as the Serious Illness Conversation guide, can help family physicians prepare for ACP discussions while training sessions using this guide can help to build confidence in these skills [40,41]. ...
Article
Full-text available
Background: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. Results: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP. Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.
... Validated communication tools, such as the Serious Illness Conversation guide, can help family physicians prepare for ACP discussions while training sessions using this guide can help to build confidence in these skills. [40,41] Family physicians also care for their patients within the context of their families, sometimes caring for several family members in one family, and attend to patients' physical and emotional needs. Helping a patient to navigate through the fears and worries identified in our study regarding discussing ACP, either by working with the patient in the context of their family or by engaging other members of the health care team is a meaningful contribution that most family physicians could fulfill. ...
Preprint
Full-text available
Background: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients’ wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients’ knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. Results: 102 participants provided an analyzable response to the survey when asked why they haven’t talked to someone about ACP. 254 answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The MD should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It’s not a priority; and 8. A lack of knowledge about ACP. Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients’ knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.
... 52 Widespread use of well-designed, comprehensive, and retrievable templates would facilitate documentation of advance care planning and goals-of-care conversations, and could also provide a guide for these discussions. 54 Natural language processing (NLP) and machine learning also hold promise for facilitating quality metrics related to advance care planning and goals-of-care discussions. Recent studies have shown that NLP approaches can effectively extract meaningful information, such as adverse drug reactions, cancer staging, and disease progression from clinical notes. ...
Preprint
Full-text available
Background Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients’ wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients’ knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. Results 102 participants provided an analyzable response to the survey when asked why they haven’t talked to someone about ACP. 254 answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The MD should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It’s not a priority; and 8. A lack of knowledge about ACP. Conclusions Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients’ knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.
Article
Goals of care (GOC) conversations and resulting goal-concordant treatment are the heart of palliative medicine. Despite repeated evidence that GOC conversations offer significant benefit and minimal harm, barriers to widespread and high-quality implementation persist in human medicine. One strategy to overcoming these barriers has been utilization of a structured checklist format for serious illness conversations. The Serious Illness Conversation Guide was developed for human patients and has been modified for use in the veterinary profession. The guide promotes individualized, goal-concordant care planning even when conflict and emotional demands are high.
Chapter
Emergency medicine carries with it great reward, as well as unpredictability. Emergency clinicians' focus on serious illness and injury means that they will deal with a significant amount of death ‐ occurring from progression of disease or injury, as well as euthanasia. Severe presenting signs, uncertain outcomes, emotional and financial stress, and legal availability of euthanasia for animals all contribute to the reality of euthanasia as a common procedure in emergency practice. Euthanasia is known to significantly impact veterinarians and clients. Great care must be taken to ensure that the impact of euthanasia does not overwhelm veterinarians' ability to perform well in an emergency setting. Many opportunities exist to minimize emotional distress, maximize goal‐concordant care, and ensure sufficient thoughtfulness in euthanasia considerations. Familiarity with newer concepts in veterinary end‐of‐life care, such as hospice, palliative care, veterinary‐social work partnerships, and goals of care conversations, is essential for expanding resources for veterinarians, patients, and clients.
Article
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Background: This is the third update of a review that was originally published in the Cochrane Library in 2002, Issue 2. People with cancer, their families and carers have a high prevalence of psychological stress, which may be minimised by effective communication and support from their attending healthcare professionals (HCPs). Research suggests communication skills do not reliably improve with experience, therefore, considerable effort is dedicated to courses that may improve communication skills for HCPs involved in cancer care. A variety of communication skills training (CST) courses are in practice. We conducted this review to determine whether CST works and which types of CST, if any, are the most effective. Objectives: To assess whether communication skills training is effective in changing behaviour of HCPs working in cancer care and in improving HCP well-being, patient health status and satisfaction. Search methods: For this update, we searched the following electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 4), MEDLINE via Ovid, Embase via Ovid, PsycInfo and CINAHL up to May 2018. In addition, we searched the US National Library of Medicine Clinical Trial Registry and handsearched the reference lists of relevant articles and conference proceedings for additional studies. Selection criteria: The original review was a narrative review that included randomised controlled trials (RCTs) and controlled before-and-after studies. In updated versions, we limited our criteria to RCTs evaluating CST compared with no CST or other CST in HCPs working in cancer care. Primary outcomes were changes in HCP communication skills measured in interactions with real or simulated people with cancer or both, using objective scales. We excluded studies whose focus was communication skills in encounters related to informed consent for research. Data collection and analysis: Two review authors independently assessed trials and extracted data to a pre-designed data collection form. We pooled data using the random-effects method. For continuous data, we used standardised mean differences (SMDs). Main results: We included 17 RCTs conducted mainly in outpatient settings. Eleven trials compared CST with no CST intervention; three trials compared the effect of a follow-up CST intervention after initial CST training; two trials compared the effect of CST and patient coaching; and one trial compared two types of CST. The types of CST courses evaluated in these trials were diverse. Study participants included oncologists, residents, other doctors, nurses and a mixed team of HCPs. Overall, 1240 HCPs participated (612 doctors including 151 residents, 532 nurses, and 96 mixed HCPs).Ten trials contributed data to the meta-analyses. HCPs in the intervention groups were more likely to use open questions in the post-intervention interviews than the control group (SMD 0.25, 95% CI 0.02 to 0.48; P = 0.03, I² = 62%; 5 studies, 796 participant interviews; very low-certainty evidence); more likely to show empathy towards their patients (SMD 0.18, 95% CI 0.05 to 0.32; P = 0.008, I² = 0%; 6 studies, 844 participant interviews; moderate-certainty evidence), and less likely to give facts only (SMD -0.26, 95% CI -0.51 to -0.01; P = 0.05, I² = 68%; 5 studies, 780 participant interviews; low-certainty evidence). Evidence suggesting no difference between CST and no CST on eliciting patient concerns and providing appropriate information was of a moderate-certainty. There was no evidence of differences in the other HCP communication skills, including clarifying and/or summarising information, and negotiation. Doctors and nurses did not perform differently for any HCP outcomes.There were no differences between the groups with regard to HCP 'burnout' (low-certainty evidence) nor with regard to patient satisfaction or patient perception of the HCPs communication skills (very low-certainty evidence). Out of the 17 included RCTs 15 were considered to be at a low risk of overall bias. Authors' conclusions: Various CST courses appear to be effective in improving HCP communication skills related to supportive skills and to help HCPs to be less likely to give facts only without individualising their responses to the patient's emotions or offering support. We were unable to determine whether the effects of CST are sustained over time, whether consolidation sessions are necessary, and which types of CST programs are most likely to work. We found no evidence to support a beneficial effect of CST on HCP 'burnout', the mental or physical health and satisfaction of people with cancer.
Article
Background: As our population ages and the burden of chronic illness rises, there is increasing need to implement quality metrics that measure and benchmark care of the seriously ill, including the delivery of both primary care and specialty palliative care. Such metrics can be used to drive quality improvement, value-based payment, and accountability for population-based outcomes. Methods: In this article, we examine use of the electronic health record (EHR) as a tool to assess quality of serious illness care through narrative review and description of a palliative care quality metrics program in a large healthcare system. Results: In the search for feasible, reliable, and valid palliative care quality metrics, the EHR is an attractive option for collecting quality data on large numbers of seriously ill patients. However, important challenges to using EHR data for quality improvement and accountability exist, including understanding the validity, reliability, and completeness of the data, as well as acknowledging the difference between care documented and care delivered. Challenges also include developing achievable metrics that are clearly linked to patient and family outcomes and addressing data interoperability across sites as well as EHR platforms and vendors. This article summarizes the strengths and weakness of the EHR as a data source for accountability of community- and population-based programs for serious illness, describes the implementation of EHR data in the palliative care quality metrics program at the University of Washington, and, based on that experience, discusses opportunities and challenges. Our palliative care metrics program was designed to serve as a resource for other healthcare systems. Discussion: Although the EHR offers great promise for enhancing quality of care provided for the seriously ill, significant challenges remain to operationalizing this promise on a national scale and using EHR data for population-based quality and accountability.
Article
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Doctors' communication with patients is commonly hampered by lack of training in this core skill. This study aimed to assess the efficacy of an intensive 3-day training course on communication skills in a randomised controlled trial with a two-by-two factorial design and several outcomes. METHODS: 160 oncologists from 34 UK cancer centres were randomly allocated to four groups: written feedback followed by course; course alone; written feedback alone; and control. At each of two assessment periods, consultations with six to ten consecutive, consenting patients per doctor were videotaped. 2407 patients participated. Outcome measures included objective and subjective ratings made by researchers, doctors, and patients. The primary outcomes were objective improvements after the intervention in key communication skills. Course content included structured feedback, videotape review of consultations, role-play with simulated patients, interactive group demonstrations, and discussion led by a trained facilitator. FINDINGS: In Poisson regression analysis of counts of communication behaviours, course attendance significantly improved key outcomes. The estimated effect sizes corresponded to higher rates of use of focused questions (difference between course attenders [n=80] and non-attenders [n=80] 34%, p=0.003), focused and open questions (27%, p=0.005), expressions of empathy (69%, p=0.003), and appropriate responses to patients' cues (38%, p=0.026), and a 24% lower rate of use of leading questions (p=0.11). There was little evidence for the effectiveness of written feedback. INTERPRETATION: The communication problems of senior doctors working in cancer medicine are not resolved by time and clinical experience. This trial shows that training courses significantly improve key communication skills. More resources should be allocated to address doctors' training needs in this vital area.
Article
Full-text available
National guidelines recommend that physicians discuss end-of-life (EOL) care planning with patients with cancer whose life expectancy is less than 1 year. To evaluate the incidence of EOL care discussions for patients with stage IV lung or colorectal cancer and where, when, and with whom these discussions take place. Prospective cohort study of patients diagnosed with lung or colorectal cancer from 2003 to 2005. Participants lived in Northern California, Los Angeles County, North Carolina, Iowa, or Alabama or received care in 1 of 5 large HMOs or 1 of 15 Veterans Health Administration sites. 2155 patients with stage IV lung or colorectal cancer. End-of-life care discussions reported in patient and surrogate interviews or documented in medical records through 15 months after diagnosis. 73% of patients had EOL care discussions identified by at least 1 source. Among the 1470 patients who died during follow-up, 87% had EOL care discussions, compared with 41% of the 685 patients who were alive at the end of follow-up. Of the 1081 first EOL care discussions documented in records, 55% occurred in the hospital. Oncologists documented EOL care discussions with only 27% of their patients. Among 959 patients with documented EOL care discussions who died during follow-up, discussions took place a median of 33 days before death. The depth and quality of EOL care discussions was not evaluated. Much of the information about discussions came from surrogates of patients who died before baseline interviews could be obtained. Although most patients with stage IV lung or colorectal cancer discuss EOL care planning with physicians before death, many discussions occur during acute hospital care, with providers other than oncologists, and late in the course of illness. National Cancer Institute and Department of Veterans Affairs.
Article
The recent uproar about Medicare “death panels” draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally-incapacitated patient when choices about life-sustaining treatments are encountered. Unfortunately, patients often do not understand their decisions or may change their mind without changing their advance care directives. Likewise, concordance between patients' wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but the bulk of studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may undermine autonomy by leading to choices that do not reflect patient wishes. Safeguards for advance care planning should be put in place, such as requiring clinicians familiar with the patient's prognosis and treatment options to participate in the formulation of directives, assuring regular review of decisions, allowing physicians to err on the side of preserving life when uncertain about the application of an advance care directive, specifying the role of the health care proxy in interpreting or even overriding directives, requiring specialised counselling for non-emergent choices to limit life-sustaining treatment, training and certification of clinicians for conducting such conversations, and use of structured formats, clinical guidelines, and system support aides that promote quality and safety. Finally, associated research needs are outlined.
Article
Author Affiliations: National Center for Patient Safety, Department of Veterans Affairs (Mss Neily and West and Drs Mills, Young-Xu, Carney, Mazzia, Paull, and Bagian) and Department of Psychiatry, Dartmouth Medical School (Drs Mills and Young-Xu), Hanover, New ...
Article
The story of the patient-safety movement is one of slow progress punctuated by episodes of inspiring successes that are slow to be replicated. So it is not surprising that when promising innovations are not universally adopted, the public and policymakers are outraged and sometimes turn to regulation to ensure compliance. The surgical safety checklist is such an innovation.(1) The use of such checklists has been mandated or strongly encouraged by several governments, including those of the United Kingdom, the Netherlands, and Ontario, Canada. A study reported in this issue of the Journal by Urbach and colleagues(2) shows the limitations of ...
Article
Background: Physicians consistently overestimate survival for patients with cancer. The ''surprise'' question— ''Would I be surprised if this patient died in the next year?''—improves end-of-life care by identifying patients with a poor prognosis. It has not been previously studied in patients with cancer. Objective: To determine the efficacy of the surprise question in patients with cancer.
Article
Background: The ambulatory care setting is a new frontier for advance care planning (ACP). While electronic health records (EHR) have been expected to make ACP documentation more retrievable, the literature is silent on the locations of ACP documentation in EHRs and how readily they can be found. Objective: The study's objective is to identify the locations of ACP documentation in EpicCare EHR and to determine which patient and primary care provider (PCP) characteristics are associated with having a scanned ACP document. A scanned document (SD) is the only documentation containing signatures (unsigned documents are not legally valid). Design: The study design is a retrospective review of EpicCare EHR records. The search of terms included advance directives, living will, Physician Orders for Life-Sustaining Treatments (POLST), power of attorney, and do-not-resuscitate. Setting/subjects: Subjects were patients in a multispecialty practice in California age 65 or older who had at least one ACP documentation in the EHR. Measurements: Measurements were types and locations of documentation, and characteristics of patients and physicians. Results: About 50.9% of patients age 65 or older had at least one ACP documentation in the EHR (n=60,105). About 33.5% of patients with ACP documentation (n=30,566) had an SD. Patients' age, gender, race, illnesses, and when their physician started at the medical group were statistically significantly associated with the probability of having a scanned ACP document. Conclusions: Only 33.5% of patients with ACP documentation somewhere in the EHR had an SD. Standardizing the location of these documents should become a priority to improve care. Actions are needed to eliminate disparities.
Article
BACKGROUND It is challenging for clinicians to foster coping and allow hope when discussing prognosis and end-of-life (EOL) issues with terminally ill cancer patients and their caregivers. To the authors' knowledge, little research evidence is currently available to guide clinical practice.METHODS The authors conducted focus groups and individual interviews with 19 patients with far advanced cancer and 24 caregivers from 3 palliative care (PC) services in Sydney, and 22 PC health professionals (HPs) from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Additional focus groups or individual interviews were conducted until no additional topics were raised. The participants' narratives were analyzed using qualitative methodology.RESULTSAll participant groups believed there were ways of fostering coping and nurturing hope when discussing prognosis and EOL issues. Themes identified from the transcripts regarding ways of helping patients with a limited life expectancy to cope were: 1) emphasize what can be done (namely: a) control of physical symptoms; b) emotional support, care, and dignity; and c) practical support), 2) explore realistic goals, and 3) discuss day-to-day living. Two additional themes were identified regarding ways of fostering hope: the balance between truth telling and nurturing hope, and the spectrum of hope. All these themes were raised by the patients, caregivers, and HPs. However, there were some differences of opinion within the three participant groups.CONCLUSIONS The results of the current study demonstrated that most participants believed there were ways of fostering coping and maintaining hope and that HPs have a role in facilitating this with terminally ill cancer patients and their caregivers. Cancer 2005. © 2005 American Cancer Society.
Article
Background: Improved educational and evaluation methods are needed in continuing professional development programs. Objective: To evaluate the long-term impact of a faculty development program in palliative care education and practice. Design: Longitudinal self-report surveys administered from April 2000 to April 2005. Participants: Physician and nurse educators from North America and Europe. All program graduates (n = 156) were invited to participate. Intervention: Two-week program offered annually (2000 to 2003) with 2 on-site sessions and 6-month distance-learning period. Learner-centered training addressed teaching methods, clinical skill development, and organizational and professional development. Measures: Self-administered survey items assessing behaviors and attitudes related to palliative care teaching, clinical care, and organizational and professional development at pre-, postprogram, and long-term (6, 12, or 18 months) follow-up. Results: Response rates: 96% (n = 149) preprogram, 73% (n = 114) follow-up. Participants reported increases in: time spent in palliative care practice (38% preprogram, 47% follow-up, P < .01); use of learner-centered teaching approaches (sum of 8 approaches used "a lot": preprogram 0.7 +/- 1.1, follow-up 3.1 +/- 2.0, P < .0001); and palliative care topics taught (sum of 11 topics taught "a lot": preprogram 1.6 +/- 2.0, follow-up 4.9 +/- 2.9, P < .0001). Reported clinical practices in psychosocial dimensions of care improved (e.g., assessed psychosocial needs of patient who most recently died: 68% preprogram, 85% follow-up, P = .01). Nearly all (90%) reported launching palliative care initiatives, and attributed their success to program participation. Respondents reported major improvements in confidence, commitment to palliative care, and enthusiasm for teaching. Eighty-two percent reported the experience as "transformative." Conclusions: This evidence of enduring change provides support for the potential of this educational model to have measurable impact on practices and professional development of physician and nurse educators.