Nursing

Feature

Family Surrogate
Decision-making in
Chronic Critical Illness:
A Qualitative Analysis
Karen O. Moss, PhD, RN, CNL
Sara L. Douglas, PhD, RN
Eric Baum, DNP, NP-C
Barbara Daly, PhD, RN

Background Caring for an adult with chronic critical illness is a difficult undertaking. Family surrogates are
tasked with decision-making on behalf of their loved one, particularly during acute-on-chronic illness episodes.
Critical care nurses are well positioned and well qualified to facilitate this process.
Objective To explore family surrogate decision-making for people with chronic critical illness.
Methods In this qualitative study, interviews were conducted with family surrogates (n = 7) as part of a
larger descriptive, longitudinal study (N = 264). Content analyses were guided by Miles and colleagues’
methods of data analysis.
Results Family surrogates serving as decision makers for a spouse or another adult loved one were mostly
female. Although decision-making was often described as “frustrating,” most surrogates reported that
they were “comfortable” with this role. Major decision-making themes were “communication as key in
decision-making,” “impact of past experiences,” and “difficulties and coping.” Advice from family and
friends, health care providers (such as nurses), and faith or spirituality were significant resources for cop-
ing with decision-making challenges.
Conclusions Results support recent recommendations of the National Academy of Medicine that endorsed
shared decision-making. Data also support development of more effective team communication and deci-
sion support strategies, particularly addressing consistency and continuity. Critical care nurses can use their
expertise to positively influence these outcomes. (Critical Care Nurse. 2019;39[3]:e18-e26)

©2019 American Association of Critical-Care Nurses doi:https://doi.org/10.4037/ccn2019176

Momentum to recognize the increasing number of family members caring for a loved one with chronic illness has grown in recent years.1,2 More than 39 million people in the United States are informal caregivers for an adult, 59% of whom provide care for an individual with a
long-term physical condition.3 These family caregivers are sometimes required to make decisions with, or
on behalf of, their loved one experiencing acute-on-chronic illnesses leading to extended hospitalization
and intensive care unit (ICU) admissions. “Chronically critically ill” describes these patients, reflecting
extended periods of mechanical ventilation and predisposition to high readmission, morbidity, and mor-
tality rates after discharge from the hospital.4,5 During these stressful experiences, family members often
take on the role of surrogate decision maker for their loved ones. These stays in the critical care environment

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www.ccnonline.org CriticalCareNurse Vol 39, No. 3, JUNE 2019 e19

Authors

Karen O. Moss is an assistant professor in the College of Nursing at
The Ohio State University, Columbus, Ohio.

Sara Douglas is Arline H. & Curtis F. Garvin Professor of Nursing
Excellence and Assistant Dean of Research, Frances Payne Bolton
School of Nursing, Case Western Reserve University, Cleveland, Ohio.

Eric Baum is a certified nurse practitioner, University Hospitals Cleve-
land Medical Center, Cleveland, and a doctoral candidate, Frances
Payne Bolton School of Nursing, Case Western Reserve University.

Barbara Daly is Gertrude Perkins Oliva Professor in Oncology
Nursing, Frances Payne Bolton School of Nursing, Case Western
Reserve University, and a clinical ethics consultant, University
Hospitals Cleveland Medical Center.

Corresponding author: Karen O. Moss, PhD, RN, CNL, College of Nursing, The Ohio State
University, 1585 Neil Avenue, Columbus, OH 43210 (email: [email protected]).

To purchase electronic or print reprints, contact the American Association of Critical-
Care Nurses, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 899-1712 or
(949) 362-2050 (ext 532); fax, (949) 362-2049; email, [email protected].

present unique, extended, and repeated decision-making
challenges for patients, families, and health care provid-
ers alike.6

Complexity science was used in the design of the
original study of which the current project was a part.
It offers a framework for understanding phenomena
such as family surrogate decision-making occurring
within systems such as the ICU.7 It views the system
as a forceful, living social system bound by a common
purpose (caring for the critically ill), in which human
agents (patients, family surrogates, and health care pro-
viders) constantly interact while exchanging informa-
tion and adjusting behavior.7,8 The original study was
designed to reflect a complexity framework,7 whereas
this qualitative project was not designed to reveal
antecedents or process elements. Adaptation of com-
plexity science requires examination of the integrated
system as a whole that is constantly changing.7 Applica-
tion of this theory is expected to reveal a deeper under-
standing of how family surrogates make decisions for
the chronically critically ill within a complex health
care system.

Family-centered care has been defined as an approach
to health care that is respectful of and responsive to an
individual family’s values and needs.9 Because of the
level of family involvement in care of the chronically crit-
ically ill, it has been proposed that family-centered care
be included as part of high-quality care in the intensive
care environment, and that high-quality family-centered
care be considered a basic skill for all ICU clinicians,9
especially critical care nurses. Prolonged critical illness

of a loved one has an enormous psychological effect on
family members, possibly including post–intensive care
syndrome.9,10 This syndrome includes symptoms of anxi-
ety, acute stress disorder, posttraumatic stress, depres-
sion, and complicated grief.10 Diversity in patient and
family characteristics—including age, gender, ethnicity,
and religion—adds to the complexity of providing ade-
quate com-
munication
and support
for surrogate
decision-making, particularly near the end of life.
Although several investigations have documented the
importance of communication with ICU families, little is
known about the experience of family members of long-
stay ICU patients facing important decisions. The purpose
of this article is to describe the experience of surrogate
decision-making for chronically critically ill adults.

Methods
Design

Face-to-face interviews were conducted with family
surrogate decision makers (n = 7) of chronically critically
ill adult patients who lacked decision-making capacity.
Interviews took place either while the patient was in the
ICU or after he or she was discharged to another unit
within the medical center. Family surrogates underwent
an informed consent process before being interviewed.
They represented a subset of participants in a larger lon-
gitudinal, descriptive study that examined predictions
of transitions to end-of-life care by physician, patient,
and family characteristics as related to outcome expec-
tations and evaluation of treatment effectiveness. The
design and methods of the original study, including par-
ticipant recruitment, are fully described in a previous
article.7 Family surrogate decision makers were selected
as a convenience sample from the larger study sample
on the basis of their willingness to participate.

The interview guide shown in Table 1 contains the
questions asked of participants about their experiences as
surrogate decision makers. The research team developed
this guide on the basis of the premise of complexity science
and the researchers’ experiences with the surrogates while
collecting data for the larger quantitative study. To main-
tain consistency, interviews were uniformly conducted
by a research team member (E.B.) who was trained in the
conduct of interviews via formal coursework and research
experience. Interviews were audio-recorded with the

Family surrogates have an integral role
in the care of the chronically critically ill.

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interviewees’ permission. The average duration of the
interviews was 49 minutes (range: 45-105 minutes). The
number of interviews conducted was based on our goal
of determining high-level, overarching themes through
data saturation. Guest and colleagues11 recommended
that at least 6 interviews be conducted for an explor-
atory, descriptive study such as this one. At 7 interviews,
new themes no longer emerged. This study was approved
by the institutional review board of the study site.

Analysis
Audio-recordings of the interviews were transcribed

verbatim using an institutional review board–approved

vendor. Transcriptions were uploaded into Dedoose
software, version 8.0.35 (SocioCultural Research Consul-
tants, LLC), a web-based application for managing, ana-
lyzing, and presenting qualitative and mixed-methods
research data. Data were analyzed using conventional
content analysis,12,13 guided by Miles and colleagues’
methods of qualitative analysis.14 Codes were derived
both deductively from responses provided by the family
surrogates and inductively on the basis of the researchers’
experiences, and then grouped by categories and orga-
nized into larger themes.14 Two investigators (K.O.M.
and B.D.) independently coded the transcripts and then
met to discuss coding definitions and assignments.

Table 1 Interview guide
Interview questions and prompts
1. Can you tell me a little about this experience (of having a loved one in the intensive care unit)?

a. How has it been for you? Is this your first experience? Are others helping you with this?
b. Have there been any good/rewarding experiences?
c. Some negative/stressful experiences?

2. Are you being asked to make/Have you made decisions on your loved one’s behalf?
a. How much have you been involved in specific decisions for your loved one’s care?
b. How has this been for you/How do you feel about this?

3. How much do you think your input/opinions affected your
loved one’s care here?

a) Tell me about some specific decisions you were
involved in making (“decision points”)

b) Were you given alternatives in these situations?
What were they?

c) Is this something you were comfortable with? Why
or why not?

5. Decision process:
a) How did you come to a decision in these situations?
b) Did you decide alone or did you discuss with other

people?
c) Did you feel that the choices you were offered were

equally good? Or was one obviously better?

6. Information:
a) Did you feel you had enough information to make

this choice well? What else would you have wanted
to know?

b) What information was most useful to you in making
decisions for your loved one? (Information about
potential outcomes? Prognosis? Your loved one’s
return to their previous state of health? Their quality
of life?)

c) How much did information from the doctors influ-
ence your decision-making in this case (refer to
example)?

d) What about what you thought your loved one’s
wishes might be?

4. Is that a correct understanding on my part? What do you
mean by that?

a) Were you offered decisions/alternatives you were
reluctant to make? Did you feel you were not involved
at all, or have there merely been no choices to make?

b) Would you have wanted to be more involved with
decision-making? Why? In what way?

5. What do you think prevented this from happening?
a) What would you have changed about the whole process

of making decisions for your loved one?
b) How could this process be made easier for other

people in your situation?

If surrogate wanted more input:

If surrogate did not want decision-making input:

If responses to question 2 are negative:If responses to question 2 are positive or mixed:

6. Do you think your loved one’s care/outcomes would
have been different if you had had more say in his/her
care? How?

7. Why do you think that is?

8. Is there more information you could have had that would
have made you more comfortable with making decisions?
What would it have been? (Patient’s own wishes, informa-
tion about potential outcomes? Prognosis? Your loved
one’s return to their previous state of health? Their qual-
ity of life?)

a) Would talking it over with someone have helped
you be more comfortable with making decisions?
Whom? Why or why not?

b) What do you think your loved one would think
about you making choices for him/her?

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Disagreements about coding were resolved through dis-
cussion. The first round of coding was conducted using
the software. The researchers made notes in the soft-
ware to indicate their thoughts during analysis. A sec-
ond round of coding was conducted using a hard copy
of grouped codes exported from Dedoose. Codes were
then highlighted and reorganized as necessary to make
meaning of words and phrases shared by the family sur-
rogates for a third round of coding.

Results
Patient Characteristics

More than half of the patient sample was male (57%)
and white (57%). Ages ranged from 23 to 69 years (mean
58 years) at the time of hospital admission (Table 2).
As noted in Table 2, most (71%) did not have medical
interventions limited by a “Do Not Attempt Resuscita-
tion” order, and for most (86%) the goal of care remained
focused on survival. One patient did not survive after
ICU hospitalization. Of the 6 patients alive at discharge,
1 died within the first month after discharge and 4 had
died by the third month after discharge.

Family Surrogate Characteristics
Family surrogates were mostly female (86%) caring

for a spouse (57%) or another adult individual (43%),
such as an adult child. Family surrogates’ ethnicity paral-
leled that of the patients. Most family surrogates were
retired (71%), with 4 of them having an income of less
than $50 000 annually. The majority of family surrogates
resided with their loved one (86%) before the current
hospitalization. Most identified themselves as caregivers
(71%) for their loved one with chronic critical illness before
hospitalization. Family surrogates reported their health
as either good (n = 4), very good (n = 2), or fair (n = 1).

Major Decision-making Themes
Major decision-making themes derived were “com-

munication as key in decision-making,” “impact of past
experiences,” and “difficulties and coping.” Most family
surrogates were “comfortable” with their role as surro-
gate decision maker. However, this responsibility involved
challenges, some of which were alleviated by health care
providers. Other resources such as family support and
faith or spirituality also provided decision-making sup-
port for family surrogates.

Table 2 Patient and family surrogate
characteristics

Patients (n = 7)
Age, mean (range), y

Sex
Male
Female

Race
White
Black

Intensive care unit (ICU)
Medical
Surgical
Neuroscience

Admission diagnosis
Cardiac/thoracic/vascular
Neurologic
Respiratory
Infectious disease

Living will: yes

Do not attempt resuscitation: yes

Durable power of attorney: yes

Length of ICU stay, mean (range), d

Length of hospital stay, mean (range), d

Place of dischargeb
Rehabilitation
Home
Death (did not survive after ICU hospitalization)

Goal of care at discharge or deathc
Maintain cure or survival
Transition to end-of-life plan

Family surrogates (n = 7)
Age, mean (range), y

Sex
Male
Female

Race
White
Black

Marital status
Married
Not married

Relationship to patient
Spouse
Other

Religious affiliation
Catholic
Protestant
No preference

Employment status
Employed
Retired

Incomeb
$21 000-$49 999
$50 000 or greater

Valuea

58 (23-69)

4 (57)
3 (43)

4 (57)
3 (43)

3 (43)
1 (14)
3 (43)

1 (14)
3 (43)
1 (14)
2 (29)

5 (71)

2 (29)

6 (86)

9.6 (4-14)

24.7 (11-37)

4 (57)
1 (14)
1 (14)

6 (86)
1 (14)

67.7 (43-86)

1 (14)
6 (86)

4 (57)
3 (43)

4 (57)
3 (43)

4 (57)
3 (43)

1 (14)
5 (71)
1 (14)

2 (29)
5 (71)

4 (57)
1 (14)

a Values are expressed as No. (%) unless otherwise indicated.
b Missing data.
c Goal as assessed by research team on the basis of treatment level

documented in the medical record.

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Consistent, open communication among
patients, family surrogates, and health
care providers is key to ensuring optimal
care for the chronically critically ill.

Communication as Key in Decision-making.
Family surrogates expressed the importance of communi-
cation that supported their decision-making. An example
was when a family surrogate was asked if there was a time
at which he was more involved or informed regarding
decision-making for his loved one. He responded, “No,
because I was [always] involved. [For] every decision,
they would come and explain to me what they were
[going to] do, and how it was [going to] work. . . .”

Another family surrogate referenced the uncertainty
involved in medical decision-making and how the health
care providers guided her through it. In general, family
surrogates described the support they received from the
health care teams (staff, nurses, and physicians) posi-
tively. Regarding openness in communicating, a family
surrogate said, “It didn’t seem like they [health care pro-
viders] hid anything, you know, and they told me [to]
the best of their ability.” Another family surrogate stated
that she felt that the providers had “his [the patient’s]
best interest at heart,” just as she did. In several instances,
the family surrogates described hospital staff, nurses,
and physicians as “wonderful” and “kind.”

Importantly, family surrogates appreciated being
involved in the decision-making process and the way in
which health care providers took the time to explain the
situation to them. This approach provided a sense of
“feeling pretty involved in the process” and not being

“kept in
the blind
about any-
thing,” as
described
by the sur-

rogates. Nurses were trusted to provide “helpful infor-
mation” and expert advice regarding decisions at hand.
Home health and critical care nurses, in particular, were
credited with establishing professional bonds over time.
Words such as “trust” and “caring” were used to describe
the physicians. Hospital staff were also described as
“supportive.” Other services such as physical therapy
and social work were described as influential and were
appreciated by the family surrogates.

Communication with other family members was also
an important aspect of decision-making. One participant
said, “I would consult with my daughter, who knows his
concern and knows him very well, and then we would
decide what would be the best for him.” The same par-
ticipant went on to say, “So, I just try not to make a

decision on my own. I try to consult with someone else
before I make a decision.” This importance of the shared
duty of decision-making was highlighted by this surro-
gate who was tasked with the major decision-making
responsibility. Another example was provided by a fam-
ily surrogate who stated that she would also seek out
the perspective of a friend who knew her loved one
well and what he would have preferred, who “can see
him from a different angle that I wouldn’t see him [from].”
Another surrogate, in reference to decision-making for
an adult child, said, “[I] had to involve family. She has 2
kids.” The patient’s spouse had died, and as the patient’s
mother, she was involved in the decision-making pro-
cess. This was another example of the emphasis placed
on communication with family members and the inclu-
sion of multiple perspectives on the patient.

Whenever possible, input from the patient was inte-
gral to communication and was considered an import-
ant element in the decision-making process. For example,
one family surrogate said, “I would always consider what
he would have wanted” in order to do what was best for
her loved one. Another participant said that she would
always ask herself, “‘What would he have wanted?’ and
‘What would be the best [decision]?’” and then consult
with another person who knew her loved one well before
making a decision. Reliance on previous conversations
with their loved one regarding his or her health care
wishes also provided a sense of comfort to family surro-
gates. One of them described the process as follows: “I
asked [my sisters] what their opinion was and we pretty
much did what my mother wanted.” In this instance, the
perspectives of other family members as well as the
patient were considered in the decision-making process.

Two surrogates offered advice for improvement in
communication between family members and health
care providers. Common to these conversations was a
need for delivery of updates via consistent lines of com-
munication. The family surrogate suggested that physi-
cians communicate with the same family members
consistently. Another area for improvement identified
was communication between the various levels of
physicians on the medical team. One family surrogate
described it as the need for accurate information to be
shared among the team(s) of physicians.

Impact of Past Experiences. Family surrogates
often reflected on previous end-of-life or decision-
making experiences as they discussed their current role

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as decision maker. They referenced experiences with
the death of loved ones, what these experiences meant
to them, and the ways these experiences shaped their
perspectives on their current decision-making roles.
One family surrogate stated,

My mother just passed away. I made decisions
[related] to what to do with her—hospice and
whether to put her on life support or not, and
[now] that my wife’s in here, pretty much I’ll
have to make the decisions for her right now.

This comment reflected the surrogate’s previous role
as decision maker. Another family surrogate stated,

When my mother died, she and my father were
both [occupation] from [college], and I thought
when my mother died I was [going to] die . . . and
a little angel came on my shoulder and said ‘[Fam-
ily Surrogate], thank God you had her this long.’
Since then, my 2 husbands have expired, 2 broth-
ers have died, and I have buried 3 people in my
family and I’ve just made a decision.

For this family surrogate, this reflection was an
example of meaning making as well as reliance on faith
or spirituality.

Some instances were described in which past
decision-making experiences were not pleasant, but
nonetheless the surrogates felt that they contributed
meaningfully to the decisions at hand. Another surro-
gate who was caring for her father described a past
experience as follows:

[Patient’s father] had emphysema and [the patient]
was part of the family that decided to turn off his
ventilator, and he died. [The patient] told me a
couple of years ago he still feels guilty about that
decision. I guess that’s why I wanted to make sure
it was my decision and not put that on [the patient].

Family surrogates drew on professional experiences
as they made decisions. This was especially true when
the surrogate or another family member was a health
professional. One surrogate relied on advice from her
daughter, a physician, to assist with decision-making.
This physician family member had the professional
knowledge and experience to assess the various options

such as the one at hand regarding discharge to reha-
bilitation versus discharge to home.

Difficulties and Coping. The terms frustrating
and stressful were sometimes used by family surrogates
to describe the process of making decisions for their
loved one. The challenges that accompany the decision-
making process can be iterative, demanding constant
assessment and reevaluation. One family surrogate said,
“They want to do a feeding tube again, and I’m strug-
gling with that decision and I’m [going to] wait a cou-
ple of days because he is more awake now than he was
last time, and maybe he will be able to eat again.” Simi-
larly, surrogates struggled with decisions such as nurs-
ing home care versus care at home. For one surrogate,
having to make such decisions was also a reminder of
“the uncertainty of not knowing what tomorrow is
[going to] bring.”

Surrogate decision makers can be confronted with
seemingly minor challenges whose removal might make
a significant difference in the surrogate’s quality of life.
For example, one surrogate described the difficulties of
air travel and having to sleep on a couch while the patient
was hospitalized. For surrogates who are reluctant to
leave their loved one’s bedside or may lack access to
resources to enable them to rest in a comfortable bed,
prolonged inability to obtain a good night’s sleep can
impair their quality of life.

Despite support systems and other provisions to
assist with decision-making, family surrogates often
described decisional regret. An example was a surro-
gate’s decision to seek medical help that resulted in an
ICU stay versus treatment with medications already on
hand at home. When an incident occurs that shifts the
course of treatment and changes the plan of care, partic-
ularly when higher-level medical care is needed, the fam-
ily may struggle with inner conflict. For families in this
study, being asked to give permission for or to make deci-
sions about invasive testing procedures such as a spinal
tap or surgery often posed dilemmas.

Despite the many difficulties of caregiving, family
surrogates seemed to have a largely positive experience.
One family surrogate described caring for her daughter
as “a lovely experience.” She relied on her faith in God,
referring to herself as “a child of God” as she went on to
describe “little angels” that came to assist her with her
needs. Another described “taking her burdens to the
Lord” as a source of hope and support during difficult

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times. Table 3 provides examples of the themes and
categories derived from this analysis.

Discussion
Decision-making is rarely simple. Although the sample

size of this study was small, data provided by these

interviews support recommendations regarding
improvements in communication for critically ill
patients and their families.9 It was important to the fam-
ily surrogates in this study that they were involved in the
decision-making process. This study adds to the litera-
ture on understanding surrogate decision-making for the

Table 3 Themes, categories, and excerpts

Theme
Communication

as key in
decision-making

Impact of past
experiences

Difficulties and
coping

Category
Difficulties

Satisfaction

Meaning
making

Comfort

Challenges

Subcategory
Decision-making

Health care
providers

Family
involvement

Health care
provider role

Including the
patient

perspective

Reflection on
lessons learned

Influencers

Faith/spirituality

Health care
providers

Excerpt
“It is frustrating and it is kind of mind-boggling to make decisions for

other people . . .”

“My only issue is communication between interns, residents, doctors.
They may be writing stuff down, but they’re not talking to each other,
and a perfect example of that is when he was in [the] ICU.”

“I like discussions with the family, to hear everybody’s feelings and let
everybody know [that] you can’t be selfish. You know she’s been sick.
She’s tired. We love her, but we can’t just keep pushing stuff on her.”

“I converse with my children. We all make the decisions together. I have
2 sons and a daughter, and we also have discussed this with him many
times, as far as what he wants to do. So we know where he stands and
that’s what we’ll do.”

“Then I would consult with someone who knew him well and then I
would arrive at the decision that I would make.”

“They [health care providers] ask me everything, and my opinion first.”

“I felt that everything was always explained very carefully and thor-
oughly, and [I] really didn’t have too many questions about any of
the procedures.”

“You know we talked before this [happened] and I know what she wants.”

“I take into consideration what [the patient] would have wanted, and then
I consult with someone else before I make a decision, and have them
explain it to me from their point of view.”

“This is my first time making a decision for him. Now when my husband
was sick, I had to make decisions for him, but I took under …