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Journal of Family Nursing

Volume 12 Number 2
May 2006 165-184
© 2006 Sage Publications
10.1177/1074840706287686
Families and Withdrawal http://jfn.sagepub.com
hosted at
of Life-Sustaining Therapy http://online.sagepub.com

State of the Science

Debra Lynn-McHale Wiegand,
RN, MBE, PhD, CCRN, FAAN
University of Maryland School of Nursing

As the science progresses related to families participating in the process of

withdrawal of life-sustaining therapy (LST), it is important to assess research
accomplishments, identify gaps in the knowledge and ways to build on the
science, and suggest new directions for future research. Research-based arti-
cles related to families participating in the process of withdrawal of LST
were obtained by conducting computer-assisted searches and analyzing ref-
erences lists. A grid was developed that included key variables from each of
the studies. A second grid was developed and included the subthemes that
evolved from the analysis. Eleven studies were reviewed and analyzed.
Themes that evolved include illness context, family context, and family and
health care provider interactions. Important information has been discovered
about the family decision-making process and helpful health care provider
interactions. Additional research focused on withdrawal of LST is needed to
understand important concepts, develop instruments, and test interventions.

Keywords: family; withdrawal of life-sustaining therapy and/or life support;

end of life; death and dying

F amilies are intricately involved in decisions related to withdrawal of

life-sustaining therapy (LST). End-of-life decisions on behalf of loved
ones take families down a road they are ill prepared to travel. As one
patient’s son described,

We’re [he and his sister] going to make a decision together no matter what.
Where we differ a little is that I think it’s important to me the process, even

Author’s Note: I would like to thank Karen Schumacher RN, PhD, associate professor at the
University of Nebraska Medical Center College of Nursing for her guidance and critique
throughout the development of this article.

165

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166 Journal of Family Nursing

if my Mother is there at the end of the day. I don’t know how to value that
against the time it’s going to take her to get back, and what she’s going to get
back to. (Wiegand, 2003)

His sister added,

So here you are you’re trying to make this horrific decision, it’s tremendously
difficult, yeah you need some information, yeah our situation is you know
complicated beyond, probably, you know, than even I can appreciate. So you
just sort of stagger around. (Wiegand, 2003)

When aggressive LST does not restore health, decisions to withdraw

therapy can be excruciating for families.
The purpose of this article is to describe the state of the science related
to families participating in the process of withdrawal of LST. As the science
progresses it is important to assess research accomplishments, identify gaps
in the knowledge and ways to build on the science, and suggest new direc-
tion for future research.

Nature and Scope of the Problem

Continuing advances in medical technologies have significantly aided the

ability of health care providers to care for those who are seriously ill. Scientific
advancements have saved and improved the lives of many. The advancements
have also challenged the complexity of care to those whose lives technology
has not been able to improve. A century ago virtually everyone died at home,
whereas today more than three fourths of Americans spend their final days in
acute care hospitals (McCue, 1995).
Approximately 43% to 90% of patients who die in an intensive care unit
(ICU) have LST withheld or withdrawn prior to their death (Faber-
Langendoen, 1996; Keenan et al., 1997; Keenan et al., 1998; Kolleff, 1996;
Mayer & Kossoff, 1999; Prendergast, 2000; Prendergast, Claessens, & Luce,
1998; Prendergast & Luce, 1997). The incidence of withdrawal of LST has
increased significantly during recent years (McLean, Tarshis, Mazer, &
Szalai, 2000; Prendergast & Luce, 1997).
Every day patients in hospitals receive LST, and daily discussions occur
regarding withdrawal of LST. Families are instrumental in the process of
LST withdrawal, as patients are rarely able to participate. Even though
withdrawal of LST commonly occurs, little is known about the experience
from a family perspective.

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Wiegand / Life-Sustaining Therapy 167

Methods

Research-based articles related to families participating in the process of

withdrawal of LST were obtained by conducting computer-assisted searches
and analyzing references lists. The computer-assisted searches were con-
ducted from CINAHL (1982-2005), Medline (1966-2005), and Bioethics
Line (1973-2005). Keywords used to search the literature included family,
withdrawal and withholding of life-sustaining therapy/life support, end of
life, and death and dying. Articles were selected for review if (a) the article
was research based, (b) if the family was the primary focus of the investi-
gation, (c) if the focus of the investigation was withdrawal of LST, and
(d) if the patient who was ill or injured was an adult. Articles were selected,
obtained, reviewed, and critiqued based on these criteria. The author was as
thorough as possible in an effort to achieve generalizability.
The author intended to focus on research related to families participat-
ing in the process of withdrawal of LST without including the research
related to families participating in the process of withholding LST. Based
on clinical observations, it is evident that withdrawal of LST is a much
more difficult process for families. However, many studies combined the
processes of withholding and withdrawing LST, and this review describes
the research related to families withdrawing LST when possible but
includes studies related to the process of withholding and withdrawing LST
when the processes were merged.
All of the articles were carefully reviewed. A grid was developed that
included key variables from each of the studies. The grid included variables
such as the study design, method, procedure, sample, advance directive,
decision made, and findings. Table 1 includes a summary of the first grid.
A second grid was developed and included the subthemes that evolved from
the analysis. The initial subthemes that emerged included acute illness,
chronic illness, family dynamics, the family decision-making process, effect
on the family, trust, family and health care provider communication regard-
ing LST, and health care provider behaviors.

Results

Eleven studies were reviewed and analyzed. Key themes evolved from
the analysis of the research related to families participating in the process
of withdrawal of LST. The themes include illness context, family context,
and the family and health care provider interactions.

(text continued on p. 174)

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 168
Withdrawal of Life-Sustaining Therapy—Family Studies
Authors Design/Method/Procedure
Roberts, Descriptive/survey
Snyder, & Questionnaires were sent
Kjellstrand, retrospectively to the closest
1988 family member of patients
who died when renal
dialysis was discontinued
O’Callahan, Descriptive/survey
Fink, Pitts, & Family members were
Lucel, 1995 interviewed prospectively
during the LST decision-
making process and
retrospectively 6 months
after the death of the patient
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Table 1
Sample
54 family members of 54 patients
receiving chronic renal dialysis
Family relationship: not reported
Family gender: not reported
Family culture: not reported
47 family members of 47 patients
with life-threatening head injuries received mechanical
mainly from acute injuries; family
data for 23/24 patients who
had LST withheld or withdrawn
(1 patient had no family)
Family relationship: parents: 11/23
(48%), spouses: 5/23 (22%),
adult children: 4/23 (17%), adult
siblings: 3/23 (13%)
Family gender: not reported
Family culture: not reported
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Decision Made Key Findings
Withdrawal of renal Health care providers usually
3/29/2006
dialysis initiated the discussion that led
Deaths: all patients to withdrawal of LST, yet family
died members and patients were the
final decision makers
11:16 AM
50% of family members were
disappointed that physicians did
not talk enough with the family
about withdrawal of LST
All 47 patients initially Reasons family reported for
Page 168
agreeing to withhold or
ventilation and withdraw LST include poor
vasopressor therapies; prognosis, futility, quality of life
of the 47 patients, unacceptable if survived, patient
24 (51%) had LST suffering, and patient’s previous
withheld or request
withdrawn; all 24 Families valued physician’s
patients died after frequent and clear communication
LST was withheld or and joint decision making
withdrawn 2/24 patients had LST reinitiated
at the family’s request as patient
prognosis changed from likely
death to vegetative state

Tilden, Tolle, Qualitative/design not
Garland, & reported
Nelson, 1995 Family members interviewed
retrospectively 2 to 6 months
after the death of their
family member who had
LST withdrawn
Swigart, Lidz, Grounded theory
Butterworth, Family members interviewed
& Arnold, prospectively during the
1996 process of family decision
making about LST; family
observations and family
conferences with the health
care providers were
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observed
169
32 family members of 12 patients
with life-threatening acute and
chronic illnesses (medical and
surgical)
Family relationship: adult children
(> 50%), spouses (25%),
additional (50%)
Family gender: not reported
Family culture: all family
members were White
30 family members of 16 patients Withhold or withdraw
with life-threatening acute and
chronic medical illnesses
Family relationship: adult
children: 10/30 (33%), spouses:
10/33 (33%), parents: 2/30
(7%), adult siblings: 5/30 (17%), died
additional: 3/30 (10%)
Family gender: women: 16/30
(53%), men: 14/30 (47%)
Family culture: not reported
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LST withdrawn: Families identified helpful health
ventilator (11), IV care provider behaviors: timely,
fluid and medication honest, coordinated
(3), renal dialysis (1)communication; facilitation of
Deaths: all 12 patients family consensus; preparing and
died supporting the family in grief
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Families identified burdensome
health care provider behaviors:
postponing discussions about
treatment withdrawal, delaying
11:16 AM
withdrawal once scheduled,
placing decision-making
responsibility on one person,
withdrawing from the family,
defining death as a failure
Page 169
Families attempted to understand
LST, LST withheld the life-threatening illness, tell
(CPR), LST the patient’s life story and search
withdrawn (ventilation for the meaning of his or her
and medications) life, and maintain family roles
Deaths: 10 patients and relationships
Families need consistent
information from health care
providers they can trust
Decisions related to LST take time
and necessitate family consensus
(continued)
 Table 1 (continued)
170
Authors Design/Method/Procedure Sample
Reckling, 1997 Multiple case design 16 family members of 10 patients
Family members were with life-threatening acute and
observed and interviewed chronic illnesses (medical and
prospectively during the surgical)
decision-making process Family relationship: adult
of withholding or children: 8/16 (50%), parents:
withdrawing LST 3/16 (19%), spouses: 2/16
(13%), adult sibling: 1/16 (6%),
additional: 2/16 (13%)
Family gender: not reported
Family culture: not reported
Jacob, 1998 Grounded theory 17 family members of 15 patients
Family members interviewed with life-threatening acute and
retrospectively 1 week to chronic illnesses (medical and
5 years after a decision surgical)
related to LST Family relationship: adult
children: 6/17 (35%), spouses:
4/17 (23%), parents: 3/17
(18%), adult siblings: 2/17
(12%), additional: 2/17 (12%)
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Family gender: women: 16/17
(94%), men: 1/17 (6%)
Family culture: White: 14/17
(82%), Black: 3/17 (18%)
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Decision Made Key Findings
Withhold or withdraw Family roles were identified and
LST, LST withheld: were labeled as strong advocate,
3 patients, LST moderate advocate, neutral
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withdrawn: 7 patients participant, moderate resister,
Deaths: 8 patients died and strong resister
9/16 (56%) family members
adopted one of the more active
roles and 7/16 (44%) family
11:16 AM
members adopted one of the
more passive roles
Withhold or withdraw Family decisions were made based
LST, LST withheld: on patient condition and
Page 170
DNR: 4, ventilator: patients’ likely wishes
3, central line: 1; Family sought information from
LST withdrawal: health care providers regarding
ventilator: 7 patient responses to treatment
Deaths: not reported and outside resources
Families found it was helpful to
work in harmony with clinicians
as the family arrived at a
judgment about the patient’s
condition and treatment goals

Mayer & Descriptive/survey
Kossoff, Family members were
1999 interviewed retrospectively
(2 months to 2 years after
the patient’s death)
Tilden, Tolle, Qualitative/design not
Nelson, reported
Thompson, Family members interviewed
& Eggman, retrospectively 1 and
1999 6 months after the death of
their family member who
had LST withdrawn
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171
24 family members of 24 patients
with life threatening illnesses
Family relationship: not reported
for this subset of families
Family gender: not reported for
this subset of families
Family culture: not reported for
this subset of families
30 family members of 18 patients
with life-threatening acute and
chronic illnesses (medical and
surgical)
Family relationship: not reported
Family gender: not reported
Family culture: family data not
reported
Families who moved in concert
with clinicians during decision
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making were able to look back
and go on in a positive way
LST withdrawn: Family reported that important
ventilator factors in making the decision to
Deaths: All patients withdraw LST included poor
3/29/2006
died expected quality of life, poor
prognosis, the patient’s known
wishes, and patient suffering
The majority of family members
(80%) were comfortable with
11:16 AM
their decision to withdraw LST,
whereas 18% of family members
were uncomfortable, and 8%
reported that they felt very guilty
Page 171
LST withdrawn: Families went through four phases
ventilator, renal as they arrived at a decision
dialysis to withdraw LST: recognition
of futility, coming to terms
Deaths: all patients shouldering the surrogate role,
died and facing the question
Families need as much information
as possible to help them
understand the patient’s condition;
families need health care
providers to be direct and open
(continued)
 172
Authors Design/Method/Procedure
Tilden, Tolle, Design not reported
Nelson, & Family members interviewed
Fields, 2001 retrospectively 1 to 2 months
and again 6 months after the
death of their family
member; family members
completed the Horowitz
Impact of Events Scale, and
the mental/emotional scale
of the Rand 36-Item Health Family gender: women: 51/74
Survey
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Table 1 (continued)
Sample
74 family members of 51 patients LST withdrawn:
with life-threatening acute and
chronic illnesses (medical and
surgical)
Family relationship: adult
children: 30/74 (41%), spouses:
24/74 (32%), adult siblings: 8/74
(11%), parents: 7/74 (9%),
additional: 5/74 (7%)
(69%), men: 23/74 (31%)
Family culture: White: 60/74 (81%),
African American: 8/74 (11%),
Asian American: 5/74 (7%),
Native American: 1/74 (1%)
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Decision Made Key Findings
Family stress levels were very high
ventilator, IV fluids, at 1 to 2 months and
nutrition, medications, 6 months after the patient’s death
11:16 AM
renal dialysis Family stress was highest in the
Deaths: all patients absence of the patient having an
died advance directive and lowest if the
patient had an advance directive
Withdrawal of LST decisions were
Page 172
most influenced by previously
communicated patient
preferences
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Norton, Secondary analysis of the data 20 family members of 12 patients Original sample as Families described unmet
Tilden, Tolle, from Tilden et al., 2001 with life-threatening acute and described above communication needs including
Nelson, & Purposeful sampling from the chronic illnesses (medical and (Tilden et al., 2001) the need for timely information,
3/29/2006

Eggman, original sample for families surgical) honesty, clinicians to be clear,

2003 who had conflict with health Family relationship: adult clinicians to be informed,
care providers children: 8/20 (40%), spouses: clinicians to listen
3/20 (15%), adult siblings: 3/20
(15%), parents: 2/20 (10%),
11:16 AM

additional: 4/20 (20%)

Family gender: women: 14/20
(70%), men: 6/20 (30%),
Family culture: White: 16/20 (80%),
African American: 3/20 (15%),
Page 173

Asian American: 1/20 (5%)

Hansen, Exploratory descriptive 17 family members of 16 patients Withhold or withdraw Identified role strain and ease in
Archbold, & Family members were Family relationship: not reported LST, LST withheld: decision making as two
Stewart, interviewed retrospectively Family gender: women: 10/17 8, LST withdrawal: important concepts for families
2004 2 to 8 months after the (59%), men: 7/17 (41%) 7, LST withheld and participating in withholding and
patient’s death Family culture: White: 15/17 (88%), withdrawn: 1 withdrawing LST
African American: 2/17 (12%) Deaths: all patients

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died

Note: LST = life-sustaining therapy; DNR = do not resuscitate; wording related to culture varies as the wording used in the original report is used.

173
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174 Journal of Family Nursing

The Illness Context

Researchers have reported that LST decisions are different for families of
patients with acute versus chronic illnesses (Swigart, Lidz, Butterworth, &
Robert, 1996; Tilden, Tolle, Nelson, Thompson, & Eggman, 1999). Patients
with chronic illnesses often exhibit a progressive, decline in well-being.
Swigart et al. (1996) reported that the problem of obtaining a clear sense of
the deteriorating course was less difficult for families of patients with chronic
illnesses. However, family members of patients with acute illnesses or injuries
respond differently. As noted by Tilden et al. (1999), “the family’s recogni-
tion of futility was abrupt and often followed a period of denial, cognitive
dissonance, and difficulty hearing” (p. 433). A family member of a patient
injured in a motor vehicle accident stated,

I was just in such a stupor that (the doctor) kept answering my questions and
then I would just turn around and really ask him the same question and he
would answer it in different words but I kept thinking, is it really as bad as
he is implying? (Tilden et al., 1999, p. 432).

The Family Context

Research has demonstrated that the withdrawal of LST process is influ-
enced by family dynamics, occurs within a family decision-making frame-
work, and has significant lasting effects on the family.

Family dynamics. Intertwined in end-of-life discussions are family

dynamics. Decisions to withdraw LST commonly include multiple family
members (Jacob, 1998; Tilden, Tolle, Garland, & Nelson, 1995; Tilden, Tolle,
Nelson, & Fields, 2001; Tilden et al., 1999). Swigart et al. (1996) found that
families often had one family member who facilitated the family decision
about LST by disseminating information, gathering opinions from other
family members, trying to understand and synthesize the opinions, and bring-
ing the family to consensus.
Although a family facilitator may exist, Tilden et al. (1995) found that
most families pulled together and decided as a group, thus avoiding having
a single individual within the family designated as the decision maker. Even
though a core group of family was involved in the process, extended family
were commonly asked for input (Tilden et al., 1999).
Conflict intensifies the entire process for the family. Families may be too
distressed or embarrassed to discuss dissension and hostility that exists within
their family unit (Tilden et al., 1995). Tilden et al. (1995) described a situation
in which a patient’s parents were upset as they felt that the patient’s girlfriend

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Wiegand / Life-Sustaining Therapy 175

was given a great deal of authority. Tilden et al. reported that prolonged
family conflict occurred in situations where a final decision about with-
drawal of LST was made by a single family member who acted as a family
spokesperson before family consensus had been reached.

The family decision-making process. Family decision making about LST

is a complex process that occurs in phases (Jacob, 1998; Swigart et al.,
1996; Tilden et al., 1999). As one family member described,

I didn’t know whether I should (withdraw treatment) or not because I didn’t

know if she was actually there or not. There were times when she did open
her eyes, and it just seemed like she was there, but they were telling us she
wasn’t. (Jacob, 1998, p. 33)

Tilden et al. (1999) found that families participating in withdrawal of LST

decisions moved through four phases: recognition of futility, coming to
terms, shouldering the surrogate role, and facing the question.
Important factors that influence family members’ decisions to withdraw
LST include a poor expected quality of life (Mayer & Kossoff, 1999;
O’Callahan, Fink, Pitts, & Luce, 1995; Tilden et al., 1995; Tilden et al.,
1999), poor overall prognosis (Mayer & Kossoff, 1999; O’Callahan et al.,
1995; Tilden et al., 1995), and the patient’s current level of suffering
(Mayer & Kossoff, 1999; O’Callahan et al., 1995; Roberts, Snyder, &
Kjellstrand, 1988; Tilden et al., 1995; Tilden et al., 1999).
Previously discussed advance directives are helpful for families making
decisions related to LST (Jacob, 1998; Mayer & Kossoff, 1999; O’Callahan
et al., 1995; Swigart et al., 1996; Tilden et al., 2001; Tilden et al., 1999).
Swigart et al. (1996) found that knowledge of what the patient wanted (pro-
vided formally in a written advance directive or informally in conversation)
was used by family members and that, when it was consistent with with-
drawal of LST, it provided a sense of clarity and resolution for them. Tilden
et al. (2001) also reported that the majority of families stated that patient
preference was the most important reasoning factor related to their deci-
sions to withdraw LST.
Family members function in various roles that can result in role strain.
Reckling (1997) found that family members adopted a range of roles during
the discussion and implementation process related to the decision to withhold
or withdraw LST. The roles were on a continuum and ranged from strong
advocate to strong resister. Hansen, Archbold, and Stewart (2004) reported
that family members experienced role strain before, during, and after making
LST decisions. The amount of role strain varied from minimal to very great.

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176 Journal of Family Nursing

Effect on the family. Participating in decisions related to withholding and

withdrawing LST is quite a burden for families (Oliverio & Fraulo, 1998;
Tilden et al., 1995; Tilden et al., 1999). Family members expressed profound
emotional and ethical anguish as they participated in the process of with-
drawal of LST. Family members have described the process of withdrawal of
LST as difficult, intense, painful, overwhelming, devastating, and traumatic
(Tilden et al., 1999). Families described the decision to withdraw LST as the
hardest thing they had ever had to do, and many family members felt guilty
about participating in the decision-making process related to withholding and
withdrawing LST (Hansen et al., 2004; Jacob, 1998; Mayer & Kossoff, 1999;
Roberts et al., 1988; Tilden et al., 2001; Tilden et al., 1999).
Mayer and Kossoff (1999) reported that 80% of family members were
comfortable with their decision to withdraw LST, 13% were uncomfort-
able, and 8% felt very guilty. Despite the variation in levels of comfort with
their decision, all but one family member (96%) said that they would make
the same decision to withdraw LST if they had to make the decision again.
In another study, a patient’s wife stated,

Just reading the questions (on the questionnaire) seemed to open up the old
wounds that have never healed. I have suffered tremendously, both mentally
and physically, from the guilt and agony of stopping kidney dialysis for my
husband. I even refrained from ever thinking of him in my past memories
during our 35-year marriage. It would just lead back to the pain and regret of
what I did to him. (Roberts et al., 1988, p. 147)

This woman described the intense guilt she experienced as she participated
in the decision-making process to withdraw renal dialysis from her
husband. She was so ashamed of her involvement in the process she kept it
a secret from her family and friends (Roberts et al., 1988).
Tilden et al. (2001) found that families who participated in the process
of withdrawal of LST still had high levels of stress 6 months after their
family member died. The stress levels for family members in this study
were extraordinarily high and comparable to stress experienced by families
experiencing disasters (Tilden et al., 2001).

Family and Health Care Provider Interactions

Families and health care providers are intimately involved in the with-
drawal of LST process. Trust and communication are important compo-
nents of the family and health care provider relationship, and health care
provider behaviors influence the withdrawal-of-LST process.

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Wiegand / Life-Sustaining Therapy 177

Trust. Trust is an integral component of the family and health care

provider relationship (Lynn-McHale & Deatrick, 2000). In the context of
LST, mutual trust is important between family and health care providers.
Families often do not know the health care providers caring for their family
members, thus a trusting relationship may need time to build. The trust that
family had with health care providers eroded when family members
received misinformed or mixed messages about their family member who
was critically ill (Norton, Tilden, Tolle, Nelson, & Eggman, 2003). Swigart
et al. (1996) reported that families were unwilling to forgo LST when they
were unable to develop a trusting relationship with the patient’s physician.

Family and health care provider communication regarding LST. Tilden

et al. (1999) noted that eventually a turning point occurred in the condition
of the patient or family readiness arrived and was followed by either the
family or a health care provider asking the question: Should LST be con-
tinued? Health care providers asked the question 61% (11/18) of the time,
family members asked the question 28% (5/18) of the time, and 11% (2/18)
of the time families perceived that they and health care providers mutually
asked the question (Tilden et al., 1999). Reckling (1997) reported that
physicians initiated family discussions related to withholding or withdraw-
ing LST 100% of the time. In another study, families reported that acknowl-
edgement of withdrawal of LST as an option came from either the nurses
or the physicians, or both more or less simultaneously (Tilden et al., 1995).
Even though the majority of families realized that a time for decision
making of some kind was approaching, they felt it was up to the health care
providers to lead the way (Tilden et al., 1995).
Little is known about the timing of withdrawal of LST discussions. One
study reported that the majority of family members (79%) felt that the
timing of the first discussion was just right; however, 17% of family members
thought the first discussion was premature (Mayer & Kossoff, 1999).
The majority of family members in the same study felt that the family and
physician should make decisions about withholding and withdrawing LST
together, whereas 25% felt only the family should decide (Mayer & Kossoff,
1999). Swigart et al. (1996) observed that decisions to withhold or withdraw
LST were made by physicians based on the physiologic data; families were
then approached, more for assent than consent. Family members of patients
who died when chronic dialysis was discontinued reported that physicians
and nurses were more often the initiators of the discussion that led to with-
drawal of LST, whereas patients and families tended to be the final decision
makers (Roberts et al., 1988).

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178 Journal of Family Nursing

Health care provider behaviors. Family members have shed light on

health care provider behaviors that were helpful and not helpful during the
process of withdrawing LST. Health care provider behaviors that increased
their burden or made family feel excluded included postponing discussions
about treatment withdrawal, delaying withdrawal once scheduled, placing the
full burden of decision making on one person, withdrawing from the family,
and defining death as a failure (Tilden et al., 1995). Families have also
described frustration when they have not received adequate information from
health care providers (Norton et al., 2003; O’Callahan et al., 1995).
Some physicians were said to have distanced themselves from the with-
drawal of LST process (Tilden et al., 1995). Roberts et al. (1988) reported
that one half of the family members in their study were disappointed that
their family members’ physicians did not spend enough time talking with
them during the withdrawal-of-LST process. Other family members have
described significant difficulties they encountered as they tried to get in
touch with physicians to have discussions about their family members who
were seriously ill (Norton et al., 2003).
Jacob (1998) reported family members “who felt they were working
with clinicians in a harmonious way (moving in concert) had the easiest
time with decision making overall” (p. 34). Tilden et al. (1995) also
reported “a sense of collaboration and inclusion was the single most impor-
tant difference between a positive and a negative experience for most
families” (p. 638). Families identified helpful nursing and physician behav-
iors as frequent and clear communication, clarification of family roles,
collaborative decision making, facilitating family consensus, accommodat-
ing family grief, and consultation with clergy (Mayer & Kossoff, 1999;
Norton et al., 2003; O’Callahan et al., 1995; Tilden et al., 1995; Tilden
et al., 1999). Families found it beneficial if health care providers were
direct, honest, and realistic as they guided and facilitated the family through
the withdrawal-of-LST process (Norton et al., 2003; Tilden et al., 1999).

Analysis of the State of the Science

Researchers have provided essential information about families as they

participate in the withdrawal of LST process. Most of the work to date is
descriptive and has resulted in a better understanding of the nature of
families’ experiences. An analysis of this work identifies important accom-
plishments, identifies opportunities to build on the science, and offers ideas
for taking future research in new directions.

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Accomplishments
The research conducted related to withdrawal of LST has been ground-
breaking and provides an important foundation for future work.
Researchers have aided in understanding the complexities families face
during the process of withdrawal of LST.
Researchers have provided a good understanding of the decision-making
process families engage in when faced with the possibility of withdrawal of
LST. Evidence exists that families go through phases as they participate in the
decision-making process related to LST (Jacob, 1998; Swigart et al., 1996;
Tilden et al., 1999). Researchers have also revealed a beginning understand-
ing of factors that influence family decisions related to LST, the importance
of advance directives, and family dynamics that affect family decisions.
Another important accomplishment is the awareness of the range of
emotions that family members experience as they participate in the LST
decision-making process. For family members, the LST decision-making
process produces anguish and results in a variety of emotions including
stress and guilt. The emotions are intense and can be long lasting.
Family members have provided useful information about health care
provider behaviors that should be avoided and those that are helpful to
families participating in the process of withdrawal of LST. Families were
helped with this difficult process if they were able to work collaboratively
with health care providers who were direct, honest, facilitated the family
decision-making process, and accommodated family grief.

Identifying Gaps and Building on the Science

Most of the research conducted to date has been qualitative studies.
Information has not been reported consistently related to sampling strate-
gies and the rationale for sample sizes. Studies that have reported response
rates have found that almost one half of family members asked to partici-
pate in studies related to the LST process refuse. This may represent a sample
bias as families not participating may have had different experiences or have
different characteristics.
An important critique of this body of work is the paucity of withdrawal of
LST research. As found in the current analysis, six studies specifically studied
families participating in the process of withdrawal of LST (Mayer & Kossoff,
1999; Norton et al., 2003; Roberts et al., 1988; Tilden et al., 1995; Tilden et al.,
2001; Tilden et al., 1999) while five of the studies included families participat-
ing in the process of withholding and withdrawing LST (Hansen et al., 2004;

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180 Journal of Family Nursing

Jacob, 1998; O’Callahan et al., 1995; Reckling, 1997; Swigart et al., 1996).
In the clinical setting, some families are involved in the process of withhold-
ing LST, some families are involved in the process of withdrawing LST, and
some families are involved in withholding and withdrawing LST. As noted
earlier, clinical observation has shown that it is more difficult for families as
they participate in decisions to withdraw a treatment or therapy than for
families to participate in decisions not to start a new treatment or therapy.
Opportunities to discover unique nuances can only be discovered when the
processes are studied separately.
Researchers are beginning to understand how the nature of the illness influ-
ences the decision-making process with acute illness or injury apparently cre-
ating a more difficult decision-making situation than advanced-stage chronic
illnesses. This is a very important finding as it directs researchers to separately
study families who participate in the process of withdrawal of LST from
family members with acute illness or injury from families participating in the
process of withholding LST from family members with chronic, progressive
illnesses. Most of the research has been conducted with families of patients
with acute and chronic conditions (Jacob, 1998; Norton et al., 2003; Reckling,
1997; Swigart et al., 1996; Tilden et al., 1995; Tilden et al., 2001; Tilden et al.,
1999). Prior experiences of patient losses because of chronic illness aided
some families with the final withdrawal of LST (Swigart et al., 1996; Tilden
et al., 1999). The experiences of family members participating in the process
of withdrawal of LST from a patient with an unexpected illness or injury may
be uniquely different from the experiences of family members participating in
the process of withdrawal of LST from a patient with a chronic illness.
Studies conducted to date have not reported consistently family demo-
graphic data, specifically gender, ethnicity, and relationship of the family
member to the patient. The majority of studies have been conducted with
White family members. Family samples have included an average of double
the number of female family members as compared to male family members.
Family samples have mainly included data from adult children of the patient
who was critically ill followed by spouses, parents, and siblings. Little infor-
mation is available to link family demographic data with the family experi-
ence. Future studies need to be designed to include samples with diversity in
gender, culture, and family relationships. Interesting relationships may exist
between family demographic data and family experiences. For example, the
decision-making process may be much more lengthy and complex for large
families versus small families, or for families with key family members
living great distances from the hospital versus when all family members are
in close proximity to the hospital. Important differences may exist based on
family culture and family beliefs. For example, a family of Asian decent who

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believes that elders deserve the utmost respect may not be willing to partici-
pate in discussions related to withdrawal of LST. Another variable to consider
in future research is religion. There may be important relationships between
family members’ religious beliefs and end-of-life decision making regarding
withdrawal of LST.
Little work has been conducted to identify concepts that are important to
the withdrawal of LST process. Hansen et al. (2004) explored two concepts,
role strain and ease in decision making in the context of withdrawal of and
withholding LST. Indicators from the categories related to each concept
will be used to develop scales to measure role strain and ease in making
LST decisions.
Exploration of additional concepts is needed. One concept of particular
interest is stress in relation to the withdrawal-of-LST process. Although
stress has been measured after, it has not been measured during the
withdrawal-of-LST process. Research by Tilden et al. (2001) identified that
family members continued to have high levels of stress 6 months after LST
was withdrawn. It is unclear what affect stress has on the family and the
process. The short- and long-term effects of stress on the individual and the
family are unknown. Understanding the concept of stress will then lead to
additional research to determine how it can be mediated.

New Direction for Future Research

In an effort to advance the science of families participating in the process of
withdrawal of LST research needs to be conducted to close the gaps identified
above. In addition, innovative and creative research needs to be conducted.
One area that is important for future knowledge development is prospective
research. Families need to be prospectively studied as they participate in the
process of withdrawal of LST. All of the studies that were specific to the study
of withdrawal of LST were conducted retrospectively (Mayer & Kossoff,
1999; Norton et al., 2003; Roberts et al., 1988; Tilden et al., 1995; Tilden et al.,
2001; Tilden et al., 1999). Although recall of the experience offers important
insight, additional research is needed to determine if family thoughts and feel-
ings during the experience exhibit unique nuances and perspectives.
Another important area for future knowledge development is family
level research. All of the research studies conducted thus far have studied
individual family members and their experiences withholding or withdraw-
ing LST. Family research focuses on the family unit as a whole (Feetham,
1991). Studying the entire family as they participate in the process of with-
drawal of LST will provide additional insight related to family processes.
A family focus opens an entire new branch for investigation that includes

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182 Journal of Family Nursing

processes unique to a family context such as family communication, family

conflict, family coping, family roles, and family grief.
Most of the research to date has focused on the withdrawal-of-LST
decision-making process. Future research needs to study the entire withdrawal-
of-LST process. Questions to consider investigating include the following:
What is the entire experience like for families? When LST is withdrawn, do
families leave the hospital or do they stay? How do families cope with the
process? What happens to the family after the death of their family member?
How, if at all, do family roles and relationships change after their family
member’s death? Is family grief different because of the withdrawal-of-LST
process? Do families utilize grief support services? Understanding the entire
process will guide future interventions.
No studies have explored relationships among the many variables inher-
ent in the experience of withdrawal of LST. Important relationships may
exist between family stress and family coping, family health care provider
conflict and family decision making, and between family readiness and
family perceptions of guilt.
As yet no models that would help health care providers have been pro-
posed. The family decision-making process may be a good starting point as
phases and influencing factors have already been identified. Understanding
this process further and what influences the family as they transition from one
phase to the next would be an important contribution to the science. Future
models that would help health care providers predict which families are at
risk for extreme conflict, distress, or long-term adverse outcomes would be
helpful. However, to do so would require defining what is extreme distress or
an adverse outcome in a situation that is inherently difficult and distressing.
No intervention studies have been conducted related to withdrawal of
LST. Determining what interventions would help families with this process
is important. Future intervention studies might test the best approach to use
when discussing the possibility of withdrawal of LST with a patient’s
family or the most effective strategies health care providers can use to facil-
itate the family decision-making process. Additional studies might include
testing interventions to reduce family stress levels, increase family coping,
and assist with the family grief process. Intervention studies may answer
important questions including, What is the effect of early grief counseling?
What is the effect of religious support? What are the most effective mech-
anisms to reduce family burden during and after withdrawal of LST? This
knowledge is essential, as it will guide future family interventions. Health
care providers can best meet the needs of families as more extensive knowl-
edge of the withdrawal-of-LST process is discovered.

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Conclusions

In summary, significant contributions have been made to our under-

standing of families participating in the process of withdrawal of LST.
Research to date has produced good qualitative descriptions of the decision-
making process that occurs when families confront the possibility of with-
drawal of LST. We have a beginning understanding of health care provider
interactions that are helpful to families as they go through this difficult
process. There are also beginning efforts to make distinctions among seem-
ingly related experiences, moving from a global focus on decision-making
about LST to a more-refined understanding about how this experience dif-
fers under varying circumstances.
Despite the accomplishments of the research to date, scientific knowledge
about families participating in the process of withdrawal of LST is in the
earliest stages of development. Future research needs to build the science
further by identifying and defining important concepts related to the process,
developing instruments, testing relationships between concepts, and testing
interventions to aid families. Future withdrawal-of-LST research will advance
scientific knowledge and contribute to improvements in end-of-life care.

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Debra Lynn-McHale Wiegand, RN, MBE, PhD, CCRN, FAAN, is an assistant professor at
the University of Maryland School of Nursing. She also is a staff nurse in the Surgical Cardiac
Care Unit at Thomas Jefferson University Hospital. Her special interests are withdrawal of
life-sustaining therapy, families of the critically ill, palliative care and end-of-life care in inten-
sive care, and bioethical issues related to end-of-life care. Recent publications appear in
Journal of Family Nursing (with J. Deatrick, 2000) and American Journal of Critical Care
(in press).

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