Improving Communication About Serious Illness

Four decades of research on end-of-life care indicate that people who are dying often spend
their final days with a significant burden of pain and other symptoms and receive care they
would not choose. Patient-clinician communication about end-of-life care is an important
focus for improving care for three reasons: 1) when it occurs, it is associated with improved
quality of life, reduced anxiety, and fewer intensive life-sustaining therapies at the end of
life; 2) physicians frequently do not have discussions about end-of-life care with their
patients even though most patients desire these discussions; and 3) our preliminary studies
suggest that a simple intervention based on each patient's informational needs and
preferences can increase the occurrence and quality of patient-clinician communication about
end-of-life care. By tailoring patient-clinician discussions to the individual patient,
patients will be able to make care decisions that are best for them and clinicians will be
able to provide patients with the care patients' desire.

Our long-term goal is to ensure that patients receive the end-of-life care they desire
through improved patient-clinician communication. If effective, this health-system
intervention will improve: 1) the occurrence and quality of patient-centered communication
about end-of-life care for patients with chronic life-limiting illness and their families; 2)
the agreement between patients' wishes for care and care received; and 3) the burden of
symptoms of anxiety and depression experienced by patients and families.

We propose a randomized trial of a feedback form, called a "Jumpstart" form, provided to
patients, family members and clinicians, specifying the individual patient's communication
needs and preferences concerning end-of- life care. The trial will be tested with clinicians
(n=120) who provide primary or specialty care to eligible patients at clinics of two large
healthcare systems. Eligible patients (up to 6 per clinician, goal n=500) will include those
with chronic, life-limiting illness. Family members of patients and interdisciplinary team
members of primary clinicians may participate. Primary clinicians will be randomized to the
intervention or usual care. The intervention's effectiveness will be compared with usual care
using validated self-report questionnaires that will be collected longitudinally
(baseline/enrollment, within 2 weeks of the target visit, 3 months, 6 months) from patients
and families. Analyses include statistical approaches that take into account that there will
be more than one patient for each physician and that data are collected at multiple time
points.

Outcomes of this study include patient assessments of: 1) frequency and quality of
patient/clinician communication; 2) agreement between care patients desire and care patients
receive; and 3) symptoms of anxiety and depression.

We will also use qualitative data to accomplish the following goals: 1) to explore subjects'
experiences with the study's activities; 2) to understand barriers to participation; and 3)
to explore patient and family experiences with the intervention. To obtain these goals, we
will contact a total of 30-40 participants, selected from all subject groups, to participate
in one-on-one semi-structured interviews during which they will be asked to share their
experiences as a study participant and their perspectives on study activities.

Inclusion Criteria:

- Eligible primary clinicians will include all clinicians who provide ongoing primary or
specialty care to eligible patient populations. This will include primary care
physicians (family medicine and internal medicine), oncologists, pulmonologists,
cardiologists, gastroenterologists, nephrologists, neurologists, hepatologists, and
geriatricians. Primary clinicians may also include nurse practitioners and physician
assistants playing a "primary role" with eligible patients. A "primary role" denotes
any clinician for whom having a discussion about end-of-life care with eligible
patients would be indicated

- Eligible interprofessional team members will include nurses, social workers and other
clinicians who are part of an enrolled primary clinician's clinic team.

- Eligible patients will be those under the care of a participating clinician who are 18
years of age or older, have had 2 or more visits with the primary clinician in the
last 18 months, and meet diagnostic criteria. Diagnostic criteria include: 1)
metastatic cancer or inoperable lung cancer; 2) chronic obstructive pulmonary disease
with FEV1 values <35% predicted or oxygen dependence or restrictive lung disease with
a TLC < 50% predicted; 3) New York Heart Association Class III or IV heart failure; 4)
Child's Class C cirrhosis or MELD score of >17; 5) dialysis-dependent renal failure
and either diabetes or a serum albumin of < 2.5; or, 6) older than 75 years with at
least one life-limiting chronic illness or older than 90 years. Additional criteria
include: PAH w. 6MWD <250m, restrictive lung disease (IPF, ILD) w/ TLC <50%, and
cystic fibrosis with FEV1 < 30%. Eligible patients will also be English-speaking and
have no significant dementia or cognitive impairment that would limit his/her ability
to complete questionnaires.

- Eligible family members will be identified by the patient, with the criterion that the
patient would want the family member involved in medical decision-making for the
patient if he/she was not able. For the purpose of this study, "family member" is not
confined to legal next-of-kin or immediate family member. Any family member, friend,
or caregiver is eligible who is English-speaking and has no dementia or delirium
limiting his/her ability to complete questionnaires.

Exclusion Criteria:

- Reasons for exclusion for all subject groups include: legal or risk management
concerns; and physical or mental limitations preventing ability to complete research
activities.