Background

As more life-sustaining treatments become available, the need to provide patients and families clarity about what these treatments are and what they do is increasing. Little is known about how patients and families conceptualize life support.

Objective

To explore the discourse that patients and families used to describe major medical treatments in their accounts of treatment decision-making.

Methods

This study is a secondary data analysis of a survey sent to random addresses in Wisconsin regarding experiences with major medical treatment decision-making. This analysis includes the subsample of 366 respondents who specified the type of decision made in the survey’s open-ended questions. Inductive content analysis was used to qualitatively analyze the responses to the open-ended questions, with particular attention to how respondents described the treatment in their responses.

Results

Respondents’ descriptions showed a conceptualization of engaging in major medical treatments as keeping patients alive, whereas discontinuing or choosing not to engage in such treatments would bring about the patient’s death. However, respondents recognized the potential adverse consequences of engaging in major medical treatments, such as their capacity to cause pain or result in an undesirable neurologic state. Additionally, respondents described the limitations of such treatment regarding the uncertainty of the treatments providing the desired outcome or their uselessness in situations in which the patient’s death would be inevitable.

Conclusion

Understanding how patients and families make sense of major medical treatments can help clinicians during decision-making conversations.

The term life support originally appeared in the scientific literature in the 1960s, often in the context of supporting life during space flights.1  In the 1970s, Phillips reviewed clinical life support systems—including cardiopulmonary resuscitation, artificial ventilation, cardiac pacing, and dialysis—stating, “Life support systems can be regarded as technological aids to interrupting the death process in a patient who may have a reversible illness.”2 

In 2018, the Canadian Critical Care Society provided this definition: “Life-sustaining treatments (LSTs) are medications or medical devices (also known as life support) using mechanical or other artificial means to support or replace vital organ function on either a temporary or permanent basis.”3  Noted in this contemporary description, the term for life support has evolved, along with its forms and functions.

As the terms and definitions for life support become more complicated, the treatments that are regarded as life support can also be inconsistent. In guidelines for forgoing treatment in the pediatric population, the term life-sustaining medical treatment includes “interventions such as assisted ventilation, medically administered nutrition and hydration, renal replacement therapy, vasoactive infusions, or implanted electronic instruments, such as cardiac defibrillators or ventricular assist devices. In some instances, [life-sustaining medical treatment] also refers to treatments such as transfusions, supplemental oxygen, and medications such as antibiotics, insulin, and others.”4  Although the authors of these guidelines most likely did not intend to provide a comprehensive list of every treatment that could support or sustain life, the variation in “instances” or different contexts of their use reveals the complexity of what counts as life support.

As the terms and definitions for life support become more complicated, the treatments that are regarded as life support can also be inconsistent.

The need for clear discourse related to the use of life support, including withdrawal, has been discussed. Use of the phrase withdrawing treatment instead of withdrawing care,5,6 allowing to die instead of killing,5  and artificial nutrition instead of feeding tubes has social implications.6  Another implication is patient or family understanding of the treatments and their use. A qualitative study showed that patients were confused about the distinctions between resuscitation, life support, and the potential for a vegetative state.7  As more treatments that sustain life become available, the need to provide patients and families clarity about what these treatments are and what they do is increasing.

Little is known about how patients and families conceptualize life support. We conducted a survey study that asked participants about their experiences making decisions about major medical treatments. The purpose of this analysis, as a subaim of the original study, was to explore the discourse that patients and families used to describe major medical treatments in their accounts of treatment decision-making.

Design

This is a secondary data analysis of a survey that explored the prevalence of major medical treatment decision-making and factors associated with decisional conflict in making those decisions.8  The survey provided opportunities for respondents to describe their decision-making experiences—including the different options for treatment—making these data rich in depictions of how individuals conceptualized such treatments. The survey used the term major medical treatment.

Participants and Data Collection

The study involved 2 phases that spanned from January to August 2019. In the first phase, we sent a brief screener survey to 4000 randomly selected addresses in Wisconsin drawn from the US Postal Service database. The purpose of the first phase was to identify respondents who had made a major medical treatment decision for themselves or someone else and were at least 18 years old, making them eligible to participate in the second phase. A total of 1072 people responded to the first-phase survey. In the second phase, 464 people responded to the survey, which included both closed- and open-ended questions about their experiences making major medical treatment decisions. Closed-ended questions of the survey asked respondents to indicate yes or no if they had experience making decisions about each of the following: dialysis, feeding tubes or artificial nutrition or hydration, ventilators, resuscitation, hospitalization, palliative care, hospice care, major surgery, or organ transplant. The survey also included a write-in option for respondents to name other major medical treatment decisions. Open-ended questions asked respondents the following: “What was the most difficult decision that you had to make?” “What were the different options and which one did you choose?” “What do you remember most about making the decision?” “Is there anything else you want to share or think we should know about making the decision?”

This study was approved by the University of Wisconsin–Madison Minimal Risk Institutional Review Board. Respondents were provided written information about the study, and returning the surveys implied their consent to participate. All surveys in the first phase included a $1 incentive; all surveys in the second phase included a $5 incentive. Approximately 1072 out of 4000 (27%) completed the first-phase survey, and 464 out of 603 (77%) completed the second-phase survey.

Data Analysis

This analysis included the subsample of 366 respondents in the second phase who specified the type of decision made in the open-ended questions, in which respondents used their own words to describe their experience making major medical treatment decisions, including their options and choice for the most difficult decision they had to make. We qualitatively analyzed the responses using inductive content analysis. With an inductive approach, the codes and categories are derived from the data during data analysis.9  Although we did not have a predetermined framework guiding our analysis, we focused only on how respondents described the major medical treatments, not other aspects of the decision-making experience. We read through the data and discussed all coding together, achieving consensus as a team of 3. We developed codes that represented the description in the survey response and grouped similar codes into higher-level categories. We refined the coding structure as needed to adequately represent the data and further abstract how the codes related to each other. For example, we originally coded discourse about “uncertainty of success” of a major medical treatment as part of the category “death is inevitable.” However, as we found more examples in which respondents expressed uncertainty, it became clear that this was a distinct category because those who described “death is inevitable” seemed to indicate strong certainty in that outcome. We did not use software to manage the data, nor did we use participant checking for feedback on our findings.

A total of 366 respondents specified the type of decision made in the open-ended questions in the survey (mean age, 58.9 years; 269 [73.5%] women and 97 [26.5%] men). Demographic characteristics are presented in Table 1. We found that how respondents named major medical treatments, explained what major medical treatments were doing, and described the patient’s physiologic state demonstrated how they conceptualized the major medical treatment’s influence on the patient’s life. We identified 3 additional categories that revealed their understanding of the major medical treatment in their decision-making: the inevitability of death, the uncertainty of major medical treatment success, and the major medical treatment choice (Table 2).

How Major Medical Treatments Are Named

How respondents named the major medical treatments can provide insight into how they think about what the treatments are. Table 2 includes a list of all the medical terms that respondents named in describing major medical treatment, including pieces of equipment as well as procedures. In addition to specific medical terms, respondents used more general terms, such as describing a singular “machine” to sustain life. Life support was commonly used and could also be conceptualized as a singular machine or entity used to support life. However, related terms that respondents used—such as life-saving measures—were written as encompassing more than just 1 thing that is being used to sustain life but rather multiple interventions or components of care that were intended to sustain life. Major medical treatments were also described in a way that demonstrated the magnitude of their use, including terms such as controversial that imply the perception that such magnitude may not always be desirable.

The survey provided opportunities for respondents to describe their decision-making experiences, making these data rich in depictions of how individuals conceptualized such treatments.

What Major Medical Treatments Are Doing

Respondents often described what they felt the major medical treatments were doing when in use. These included physiological descriptions, such as “keep blood circulating.” The descriptions were often associated with living, such as “sustain life.” However, many descriptions included the term prolong, which has a more negative association about keeping someone alive. Additional negative associations with what major medical treatments were doing included bringing about pain—“live a life of pain and bedridden”—or inducing other types of trauma—“defibrillator constantly convulse[s] her body.”

A few descriptions provided some insight into how treating someone is conceptualized by decision makers. One respondent described the option to “continue treating incurable cancer.” Despite using the term incurable, the respondent still described treating the cancer. Another respondent made a decision not to engage in a more aggressive treatment but to continue treating the infection: “We chose not to take the risk but keep treating the infection.” These examples demonstrate that respondents conceptualize different levels of treatment with different purposes and different risks.

Physiological State

Respondents often described the patient’s physiological situation as a rationale for engaging in or not engaging in major medical treatment. Many described the state of the patient’s organs altogether, such as “organs shut down,” or of particular organs, such as the heart: “Heart had given out.” One respondent described the relationship between the major medical treatments and multiple organs: “Could not treat both congestive heart failure and kidneys shutting down due to conflicting treatments.” These examples show an understanding of how major medical treatment may be useful in organ dysfunction but not when such dysfunction is insurmountable.

The brain and neurologic status were frequently mentioned. Respondents often described “vegetable” or “vegetative state” with negative discourse that showed these states were unwanted: “End up with a vegetable.” Respondents also shared their fear of certain neurologic states: “I was scared that if I coded and they revived me that I would end up with major deficits and would be a burden for my family.” In addition to “deficits,” respondents described concerns with being in a state in which “they are no longer living, just existing.”

Respondents also used negative discourse to describe the consequences of the patient’s physiological state after not providing major medical treatment. For example, 1 respondent described aversion to the choice to “let deterioration continue resulting in death.” In addition, a few described their experience in forgoing artificial nutrition and hydration: “Just letting him starve to death” and “starved to death while we waited and watched.” These descriptions show how respondents’ mental models of the patient’s physiological state influenced their experience with the decision.

Death Is Inevitable

Many respondents described an understanding that death was inevitable, regardless of major medical treatment: “Death was imminent no matter my decision.” These descriptions often were centered on what outcome was no longer possible, such as “no possibility for recovery.” These descriptions also imply that there were no major medical treatments that would be able to provide those outcomes. Other descriptions were more explicit about the lack of useful major medical treatment, such as “nothing else could be done.” This discourse demonstrates that major medical treatment at times has the capability to do something but is still limited by the inevitability of death.

Uncertainty of Success

An additional limitation of major medical treatment was the uncertainty of whether the major medical treatment would work. Respondents in those situations described “no guarantee” in the outcome, including survival, if they engaged in the major medical treatment. Uncertainty of success of the major medical treatment was especially apparent for respondents making decisions about surgery. One respondent also mentioned that a risk of surgery is “not being able to get him off [the] ventilator.” This example demonstrates that respondents consider how engaging in the risks of certain major medical treatments (such as surgery) can lead to engaging in the risks of others (ventilators).

Major Medical Treatment Choice

Major Medical Treatment or Death

Just as respondents described major medical treatments as maintaining life in some way, respondent descriptions also acknowledged that a decision to not engage in major medical treatment or to discontinue major medical treatment would be an “end-of-life decision.” Without major medical treatment, that “meant death within days to [a] week or 2.” Therefore, decisions were often seen as binary major medical treatment or death decisions: “Dialysis or death.” Even if death was not mentioned, it was at times implied: “She understood that with hospice agreement, she would not go into the hospital again.” In this example, there is an implied association between not going to the hospital and not receiving potentially life-saving measures.

Respondents’ descriptions showed a conceptualization of engaging in major medical treatments as keeping patients alive, whereas discontinuing or choosing not to engage in such major medical treatments would bring about the patient’s death.

Choosing Life

Respondents who described choosing major medical treatment equated engaging in major medical treatment with “choose[ing] life.” These respondents often described wanting to “fight” or use any major medical treatment available to keep someone alive. One respondent asked, “Can we fix what’s wrong?” demonstrating an orientation for major medical treatments having the potential to fix potentially life-threatening circumstances.

Active and Passive Discourse to End Major Medical Treatment

Some respondents described active engagement with their choice to end major medical treatment, using active verbs that suggest they would do something to end the major medical treatment, such as “pull the plug.” Even the discourse “go home to die” seems active in that the respondent was suggesting removing oneself from the environment where further major medical treatment was possible. However, most used a passive description of choosing to end major medical treatment by “letting” the patient die, which suggests giving permission for a natural progression. Spiritual beings were also described as part of a passive process, such as “released to be with the Lord.”

Respondents’ descriptions showed a conceptualization of engaging in major medical treatments as keeping patients alive, whereas discontinuing or choosing not to engage in such major medical treatments would bring about the patient’s death. However, respondents recognized the potential adverse consequences of engaging in major medical treatments, such as their capacity to cause pain or result in an undesirable neurologic state. Additionally, respondents described the limitations of such major medical treatments by describing the uncertainty of providing the desired outcome or their uselessness in situations in which the patient’s death would be inevitable.

There was evidence that some respondents understood life support as encompassing multiple major medical treatments that are simultaneously sustaining life. Concurrent use of different life-supporting treatments is fairly common, with 1 study showing that 68% to 76% of patients who had 1 type of life-supporting treatment (invasive mechanical ventilation, intravenous vasoactive drugs, or renal replacement therapy) received another 1 of the 3 types of life-supporting treatments during their hospitalization.10  Respondents also recognized the magnitude of using major medical treatments for organ dysfunction. Therefore, it may be helpful in situations of concurrent use of different major medical treatments for health care practitioners to use terms such as “life-sustaining treatments” and describe the reason each is in use to communicate the gravity of the situation.

Respondents’ descriptions of forgoing artificial nutrition and hydration as the patient “starving to death” is consistent with prior work.1113  Palecek and colleagues14  have suggested using “comfort feeding only” to emphasize feeding in the most satisfying and least invasive way, in contrast to emphasizing not providing tube feedings or withdrawing artificial nutrition. This reframing of clinician language can shape how patients or families conceptualize the major medical treatment decision. For example, most respondents used passive language to describe discontinuing major medical treatment, particularly variants of letting the patient die, which is consistent with the “allow to die” narrative of withholding or withdrawing major medical treatment. Future research should explore how clinicians’ language affects the conceptual model and subsequent decision-making of patients and families regarding major medical treatment.

The framing that respondents used to describe “being a vegetable” or in a vegetative state communicated that these states were objectionable. Fins15  noted that 3 landmark cases (Quinlan, Cruzan, Schiavo) generated cultural awareness of the vegetative state, notably the presumed futility of major medical treatments and, as a result, the legal right to die. However, evolving understanding about disorders of consciousness and the potential for recovery have prompted changes in practice guidelines—notably, changing language of permanent vegetative states to chronic vegetative states and urging clinicians to avoid suggestions of a universally poor prognosis for patients with disorders of consciousness.16  In addition, the recent ability to detect covert consciousness has raised questions about how surrogates would interpret such information in their decision-making.17,18  Future research should explore the evolving perception of disorders of consciousness among patients and families and how it may influence their decision-making regarding major medical treatment.

These findings provide insight into the words that are familiar to decision makers of major medical treatment. Not all decision makers know what constitutes “life-saving measures,” but many recognize the term life support. Similarly, not all decision makers know what a vegetative state is, but many are familiar with what it means to be a “vegetable.” Given that life support is not as precise as alternative terms and vegetable is highly offensive, clinicians may not use these terms, which may hinder decision makers’ understanding. Prior work on surrogate decision-making about major medical treatment in particular has shown clinicians’ focus on determining the patient’s wishes and what the patient would want in the current scenario.19  Some scholars have argued to instead ask about what the patient would say about being in a particular scenario, which encourages a discussion about the patient’s values.20  In addition, it may be prudent to ask what kind of life the patient would not want, which would allow decision makers to use their own terms in describing physiological states and use of machines they would find intolerable.

This study has several limitations. First, we did not directly ask respondents to describe life support. However, we argue that by not asking this question, it alleviated the concern that respondents would refer to resources to get their answer correct, and instead, respondents described their understanding of major medical treatments in the decision-making context. Second, the majority of the sample made the decision to not engage in major medical treatment or discontinue major medical treatment, which may have led to bias of how the major medical treatments were described. Third, this study was conducted in a single Midwestern state with a sample that included mostly female, White, and highly educated respondents; the findings may not be generalizable.

Allowing decision makers the opportunity to use their own words and descriptions of major medical treatments may help clinicians understand how they are conceptualizing the major medical treatments and how that might be informing their decisions.

Despite being different, the context of how major medical treatments were described was fairly consistent across circumstances: an orientation toward major medical treatment as providing (or prolonging) life and discontinuing major medical treatment as precipitating death. Clarity about what major medical treatments are and what they are doing may help patients and families as they make their decisions. In addition, allowing decision makers the opportunity to use their own words and descriptions of major medical treatments may help clinicians understand how they are conceptualizing the major medical treatments and how that might be informing their decisions.

The University of Wisconsin Survey Center provided assistance in survey development and data collection coordination. The results of this study were presented in part at the virtual Academy of Communication in Health-care Research Forum; June 26, 2020.

This work was performed at the University of Wisconsin–Madison School of Nursing, Madison.

1
Armstrong
RC
.
Life support system for space flights of extended time periods
.
NASA Contract Rep
.
1966
;
614
:
1
567
.
2
Phillips
GD
.
Life support systems in intensive care: a review of history, ethics, cost, benefit and rational use
.
Anaesth Intens Care
.
1997
;
5
:
251
257
. doi:
3
Canadian Critical Care Society Ethics Committee
, 
Bandrauk
N
,
Downar
J
, et al
.
Withholding and withdrawing life-sustaining treatment: the Canadian Critical Care Society position paper
.
Can J Anesth
.
2018
;
65
:
105
122
. doi:
4
Weise
KL
,
Okun
AL
,
Carter
BS
, et al
.
Guidance on forgoing life-sustaining medical treatment
.
Pediatrics
.
2017
;
140
:
e20171905
. doi:
5
Truog
RD
,
Campbell
ML
,
Curtis
JR
, et al
.
Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College of Critical Care Medicine
.
Crit Care Med
.
2008
;
36
:
953
63
. doi:
6
Fine
RL
.
Language matters: “Sometimes we withdraw treatment but we never withdraw care”
.
J Palliat Med
.
2007
;
10
:
1239
40
. doi:
7
Deep
KS
,
Griffith
CH
,
Wilson
JF
.
Communication and decision-making about life-sustaining treatment: examining the experiences of resident physicians and seriously-ill hospitalized patients
.
J Gen Intern Med
.
2008
;
23
:
1877
1882
. doi:
8
Pecanac
KE
,
Brown
RL
,
Kremsreiter
HB
.
Decisional conflict during major medical treatment decision-making: a survey study
.
J Gen Intern Med
.
2021
;
36
:
55
61
. doi:
9
Elo
S
,
Kyngäs
H
.
The qualitative content analysis process
.
J Adv Nurs
.
2008
;
62
:
107
115
. doi:
10
Garland
A
,
Marrie
RA
,
Wunsch
H
, et al
.
Accuracy of administrative hospital data to identify use of life support modalities: a Canadian study
.
Ann Am Thorac Soc
.
2020
;
17
:
229
235
. doi:
11
Schwartz
DB
,
Barrocas
A
,
Wesley
JR
, et al
.
Gastrostomy tube placement in patients with advanced dementia or near end of life
.
Nutr Clin Pract
.
2014
;
29
:
829
40
. doi:
12
Rapoport
A
,
Shaheed
J
,
Newman
C
, et al
.
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
.
Pediatrics
.
2013
;
131
:
861
869
. doi:
13
Kitzinger
J
,
Kitzinger
C
.
Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: a qualitative study of family experience
.
Palliat Med
.
2018
;
32
:
1180
1188
. doi:
14
Palecek
EJ
,
Teno
JM
,
Casarett
DJ
, et al
.
Comfort feeding only: a proposal to bring clarity to decision making regarding difficulty with eating for persons with advanced dementia
.
J Am Geriatr Soc
.
2010
;
58
:
580
584
. doi:
15
Fins
JJ
.
Disorders of consciousness, past, present, and future
.
Camb Q Healthc Ethics
.
2019
;
28
:
603
615
. doi:
16
Giacino
JT
,
Katz
DI
,
Schiff
ND
, et al
.
Practice guideline update recommendations summary: disorders of consciousness
.
Neurology
.
2018
;
91
:
450
460
. doi:
17
Graham
M
,
Wallace
E
,
Doherty
C
, et al
.
From awareness to prognosis: ethical implications of uncovering hidden awareness in behaviorally nonresponsive patients
.
Camb Q Healthc Ethics
.
2019
;
28
:
616
631
. doi:
18
Young
MJ
,
Edlow
BL
.
The quest for covert consciousness: bringing neuroethics to the bedside
.
Neurology
.
2021
;
96
:
893
896
. doi:
19
Pecanac
KE
.
Communicating delicately: introducing the need to make a decision about the use of life-sustaining treatment
.
Health Commun
.
2017
;
32
:
1261
1271
. doi:
20
Schwarze
ML
,
Campbell
TC
,
Cunningham
TV
, et al
.
You can’t get what you want: innovation for end-of-life communication in the intensive care unit
.
Am J Respir Crit Care Med
.
2016
;
193
:
14
16
. doi:

Footnotes

Evidence-Based Review on pp 469-470

 

This article is followed by an AJCC Patient Care Page on page 471.

 

FINANCIAL DISCLOSURES

Dr Pecanac received funding from the Office of the Vice Chancellor for Research and Graduate Education at the University of Wisconsin–Madison and the Wisconsin Alumni Research Foundation and a 2018 Research Committee Award from the University of Wisconsin–Madison School of Nursing. No other disclosures were reported.

 

SEE ALSO

For more about family decision-making, visit the Critical Care Nurse website, www.ccnonline.org, and read the article by Moss et al, “Family Surrogate Decision-making in Chronic Critical Illness: A Qualitative Analysis” (June 2019).

 

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