Family Surrogate Decision Making in Chronic Critical Illness: A Qualitative Analysis

Abstract

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 highly skilled and well positioned to impact this process.

Objective:

The purpose of this qualitative study was to understand family surrogate decision making for the chronically critically ill.

Methods:

Interviews (n=7) were conducted with family surrogates as part of a larger descriptive longitudinal study (N=264). Content analyses were guided by Miles and Huberman’s methods of data analyses.

Results:

Family surrogates serving as decision makers for a spouse or other adult loved one were mostly female. Though 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, healthcare providers (such as nurses), as well as faith/spirituality were significant resources for coping with decision-making challenges.

Conclusions:

Results support the 2014 National Academies recommendations that endorsed shared decision making. Data also support designs of more effective team communication and decision support strategies, particularly addressing consistency and continuity. Critical care nurses can use their expertise to positively influence these outcomes.

Momentum to recognize the increasing number of family members caring for a loved one with chronic illness has grown in recent years.^1,2 Over 39 million persons 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, and reflects extended periods of mechanical ventilation and predisposition to high readmission, mortality, and morbidity rates following discharge from hospital.^4,5 During these stressful experiences, family members often carry out the role of surrogate decision maker on behalf of their loved ones. These stays in the critical care environment present unique, extended and repeated decision-making challenges for patients, families, and healthcare providers alike.⁶

Complexity science was used in the design of the original study. 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 healthcare providers) constantly interact while exchanging information and adjusting behavior.^7,8 The original study was designed to reflect a complexity framework,⁷ Adaptation of complexity science requires us to examine the integrated system as a whole that is constantly changing.⁷ Application of this theory is expected to reveal a deeper understanding of how family surrogates make decisions for the chronically critically ill while existing within a complex healthcare system.

Family-centered care has been defined as an approach to healthcare that is responsive and respectful of an individual family’s values and needs.⁹ Because of the level of family involvement, care of the chronically critically ill; it has been proposed that family-centered care should be included as part of high-quality care in the intensive care environment, and that high-quality family-centered care should be considered a basic skill for all ICU clinicians,⁹ including critical care nurses in particular. Prolonged critical illness of a loved one has an enormous psychological effect on family members, including Post Intensive Care Syndrome.^9,10 This cluster of symptoms is inclusive, but not limited to symptoms of anxiety, acute stress disorder, posttraumatic stress, depression, and complicated grief.¹⁰ Diversity in patient and family characteristics, including age, gender, ethnicity, and religion, add to the complexity of providing adequate communication and support for surrogate decision making, particularly near the end of life (EOL). While there have been a number of investigations documenting 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 report 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 they were discharged to another unit within the medical center. Family surrogates completed an informed consent process prior to being interviewed. They represented a subset of participants from a larger longitudinal descriptive study which examined predictions of transitions to EOL care by physician, patient, and family characteristics, as related to outcome expectations, and treatment effectiveness. Description of the design and methods of the original study, including participant recruitment are fully described in a previous paper.⁷ Family surrogate decision makers were conveniently selected from the larger study sample based on their willingness to participate.

Table 1 contains the questions used to ask participants about their experiences as surrogate decision makers. This Interview Guide (see Table 1) was developed by the research team based on the premise of complexity science and the researchers’ experiences with the surrogates while collecting data for the larger quantitative study. To maintain 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 permission. Duration for each interview averaged 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 colleagues, recommends at least six interviews to be conducted for an exploratory, descriptive study such as this.¹¹ At seven interviews new themes no longer emerged. This study was approved by the Institutional Review Board (IRB) of the study site.

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 ICU)?  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?
If responses to question 2 are positive or mixed:	If responses to question 2 are negative:
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?	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. 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?	If surrogate wanted more input:
	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?
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 influence your decision making in this case (refer to example)?  d) What about what you thought your loved one’s wishes might be?	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?
	If surrogate did not want decision making input:
	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? (Pt.’s own wishes, information about potential outcomes? Prognosis? Your loved one’s return to their previous state of health? Their quality 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?

Analysis

Audio recordings of interviews were transcribed verbatim using an IRB-approved vendor. Transcriptions were uploaded into Dedoose software version 7.0.23, a web-based application for managing, analyzing, and presenting qualitative and mixed method research data.¹² Data were analyzed using conventional content analysis,^13,14 guided by Miles and Huberman’s methods of qualitative analysis.¹⁵ Codes were derived both deductively from responses provided by the family surrogates, as well as inductively based on experiences the researchers brought to the study, then grouped by categories, and organized into larger themes.¹⁵ Two investigators (K.M. & B.D.) independently coded the transcripts, then met to discuss coding definitions and assignments. Disagreements with coding were resolved through discussion. The first round of coding was conducted using the software. Memos were made in the software to indicate researcher thoughts during analysis. A second round of coding was conducted using a hardcopy 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 surrogates for a third round of coding.

Results

Patient Characteristics

More than half of the patient sample was male (57%) and Caucasian (57%). Ages ranged from 23–69 years (mean=58 years) at the time of hospital admission (see Table 2). As noted in Table 2, most (71.4%) did not have medical interventions limited by a “Do Not Attempt Resuscitation” order and the goal of care remained focused on survival. One patient did not survive post-ICU hospitalization. Of the 6 patients alive at discharge, one died within the first month post-discharge, and 4 had died by the third month post-discharge.

Table 2.

Patient and Surrogate Characteristics

Patient Demographics (n=7)	n (%)
Gender
male	4 (57.1)
female	3 (42.9)
Race
Caucasian	4 (57.1)
African American	3 (42.9)
Intensive Care Unit
Medical ICU	3 (42.9)
Surgical ICU	1 (14.3)
Neuroscience ICU	3 (42.9)
Admission diagnosis
cardiac/thoracic/vascular	1 (14.3)
neurologic	3 (42.9)
respiratory	1 (14.3)
infectious disease	2 (28.6)
Living will: yes	5 (71.4)
Do Not Attempt Resuscitation: yes	2 (28.6)
Durable Power of Attorney: yes	6 (85.7)
Place of discharge*
rehabilitation	4 (57.1)
home	1 (14.3)
death (did not survive post-ICU hospitalization)	1 (14.3)
Goal of care at discharge or death**
maintain cure or survival	6 (85.7)
transition to end-of-life plan	1 (14.3)
	Mean (Range)
Age (years)	58 (23–69)
Length of ICU stay (days)	9.6 (4–14)
Length of hospital stay (days)	24.7 (11–37)
Family Surrogate Demographics (n=7)	n (%)
Gender
male	1 (14.3)
female	6 (85.7)
Race
Caucasian	4 (57.1)
African American	3 (42.9)
Marital status
married	4 (57.1)
not married	3 (42.9)
Spouse
spouse	4 (57.1)
other	3 (42.9)
Religious affiliation
Catholic	1 (14.3)
Protestant	5 (71.4)
No preference	1 (14.3)
Employment status
employed	2 (28.6)
retired	5 (71.4)
Income*
$21,000–$49,999	4 (57.1)
$50,000 or greater	1 (14.3)
	Mean (Range)
Age (years)	67.7 (43–86)

^*Missing data

^**Goal as assessed by research team on the basis of treatment level documented in the medical record

Family Surrogate Characteristics

Family surrogates were mostly female (85.7%) caring for a spouse (57.1%) or other adult individual (42.9%) such as an adult child. Family surrogates’ ethnicity paralleled the patients. Most family surrogates were retired (71.4%), with 4 of them earning less than $50,000 annually. The majority of family surrogates resided with their loved one (85.7%) prior to the current hospitalization. Most identified themselves as caregivers (71.4%) for their loved one with chronic critical illness prior to hospitalization. Family surrogates reported their health as either good (n=4), very good (n=2), or fair (n=1).

Major decision-making themes derived were: “Communication as key in decision making”, the “Impact of past experiences”, and “Difficulties and coping.” Most family surrogates were “comfortable” with their role as surrogate decision maker. However, this responsibility involved challenges, some of which were alleviated by health care providers. Other resources such as family support, and faith/spirituality also provided decision-making support for family surrogates.

Communication as Key in Decision Making

Family surrogates expressed the importance of communication that supported their decision making. An example of this was when a family surrogate was asked if there was a time in which he was more involved or informed regarding decision-making for his loved one. To this, 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 healthcare providers guided her through it. Support received from the healthcare teams (staff, nurses, and physicians) was described as positive. Regarding openness in communicating, a family surrogate said, “It didn’t seem like they [healthcare providers] 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, hospital staff, nurses, and physicians were all described as “wonderful” and “kind” by the family surrogates.

Importantly, family surrogates appreciated being involved in the decision-making process and the way in which healthcare 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 anything,” as described by the surrogates. Nurses were trusted to provide “helpful information” based on their expert advice regarding decisions at hand. Home health and critical care nurses, in particular, were highlighted in reference to circumstances where professional bonds were established 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 participant 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 a surrogate tasked with the major decision-making responsibility. Another example of this was a family surrogate who stated that she would also seek out perspectives of a friend who knows her loved one well and what he would have preferred. She went on to provide an example, such as a friend who “…can see him from a different angle that I wouldn’t see him [from].” Another went on to say, “[I] had to involve family. She has two kids” in reference to decision making for an adult child. The patient’s spouse was deceased, and as the patient’s mother, she was involved in the decision-making process. This was another example of the important emphasis placed on communication with family members and the inclusion of preferences of multiple adult loved ones.

Whenever possible, input from the patient was integral to communication and was considered an important part of the decision-making process. An example of this was shared by a family surrogate who said, “I would always consider what he would have wanted,” in order to do what’s best for her loved one. Another participant said that she would always ask herself, “‘What would he have wanted?’ and then “‘What would be the best [decision]?’” before consulting with another individual who knew her loved one well before making a decision. Instances where family surrogates relied on previous conversations with their loved one regarding their healthcare wishes seemed to also provide a sense of comfort. In another example, a family surrogate described the process as, “…. I asked [my sisters] what their opinion was and we pretty much did what my mother wanted….” In this instance, both the perspectives from other family members as well as the patient were considered as part of the decision-making process.

In three instances, two surrogates shared advice for improvements in communication with healthcare providers. Common to all three conversations was a need for delivery of updates via consistent lines of communication. Using this strategy, the family surrogate wanted physicians to communicate to the same family members consistently. Another area for improvement 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 referenced their current role as decision maker. They referenced experiences with 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 was a reflection on 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 ‘[Family Surrogate], thank God you had her this long.’ Since then, my two husbands have expired, two brothers have died, and I have buried three people in my family and I’ve just made a decision.

This reflection was an example of meaning making as well as reliance on faith/spirituality for this family surrogate.

There were instances when past decision-making experiences were not pleasant, but none-the-less surrogates felt that they contributed meaningfully to the decisions at hand. In one instance, a past experience of the patient was described as follows:

[Patient’s father] had emphysema and he was part of the family that decided to turn off his ventilator, and he died. He 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 [him].

Family surrogates drew on professional experiences as they made decisions. This was the case particularly when the surrogate or another family member was a health or allied health professional. One surrogate relied on advice from her daughter, who is 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 rehabilitation 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 another. The challenges that come along with the decision process can be iterative, demanding constant assessment and reevaluation. An example of this was when a family surrogate said,

They want to do a feeding tube again, and I’m struggling with that decision and I’m [going to] wait a couple of days because he is more awake now than he was last time, and maybe he will be able to eat again.

Similarly, surrogates struggled with decisions such as nursing home care versus care at home. For one surrogate, it was also a reminder of “the uncertainty of not knowing what tomorrow is [going to] bring.”

Difficulties of being a surrogate decision maker can bring along seemingly minor challenges that, once removed, might make a significant difference in the quality of life of the family surrogate. One surrogate described air travel and having to sleep on a couch while their loved one is hospitalized. For those surrogates who are reluctant to leave their loved ones’ bedside or who may lack access to resources to enable them to rest in a comfortable bed, prolonged inability to obtain a good night’s rest 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 of which included a surrogates’ 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, particularly when an increase in the level of medical care is needed, this can become a source of inner conflict, as was the case for one family in this study. Being asked to give permission for or to make decisions 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 an overall 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 come to assist her with her needs. Another described “taking her burdens to the Lord” as a source of hope in a higher power and support during difficult times. Table 3 depicts examples of the themes and categories derived from this analysis.

Table 3:

Themes, Categories, and Excerpts

Theme	Category	Sub-Category	Excerpt
Communication as key in decision making	Difficulties	decision making	“It is frustrating and it is kind of mind-boggling to make decisions for other people...”
		healthcare providers	“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”
	Satisfaction	family involvement	“.…. 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 two 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.”
		healthcare provider role	“They [healthcare providers] ask me everything, and my opinion first.”
			“I felt that everything was always explained very carefully and thoroughly, and [I] really didn’t have too many questions about any of the procedures.”
		including the patient perspective	“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.
Impact of past experiences	Meaning making	reflection on lessons learned	“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 consideration the same [aspects] that I’m doing here, ‘What would he have wanted?’ and then ‘What would be the best [decision]?’”
		influencers	“Once they said “dialysis…” I’m a [allied health professional] and I know people on dialysis go to dialysis every day, so I think I didn’t have [any] trouble with that…”
			“When we did our living will, I made a promise that I would not let him stay alive on machines, and after he had his last surgery for an abscess, this is what you see, and you know I didn’t want to see him like this, so I requested to stop the treatment.”
Difficulties and coping	Comfort	faith/spirituality	“It’s always in God’s hands.”
			“Whatever happens, I’ll just thank God I had [the patient] this long. So since [then], I have that in my mind, and feel and think like that - nothing’s [going to] be as hard as it was for my mother to die.”
	Challenges	healthcare providers	“It’s an ongoing complication that they’re just having a lot of trouble resolving, because these doctors have not seen anyone like him before. They have not seen someone who has such [blood] pressures. They can’t find a happy medium. They can’t find the correct thing, so it’s frustrating.”

Discussion

Decision making is rarely simple. Though this sample size was small, data provided by these interviews support recommendations regarding improvements in communication for the critically ill.⁹ It was important to the family surrogates in this study that they were involved in the decision-making process. This study adds to the literature on understanding surrogate decision making for the chronically critically ill in particular and highlights the importance family surrogates place on the perspectives of other family members, friends, and healthcare providers. This theme suggests a need to assure family surrogates that they can include other support persons such as other family members in the family meetings. Critical care nurses should advocate for including additional family members/loved ones in these meetings and also encourage them to get sufficient rest in order to be better physically and psychologically prepared to advocate on behalf of their loved one; promoting good caregiver quality of life.

Results of this study support the design of more effective communication processes and decision support strategies for healthcare teams, with a goal of reduced stress and conflict while facilitating optimal care, including care near the EOL.^6,16 Nurses’ almost continuous presence at the bedside provides opportunities for them to engage with families in ways that are less feasible for other members of the healthcare team.¹⁷ Critical care nurses are particularly influential in helping ameliorate psychological symptoms.¹⁸ Input from these nurses during the acute phase of illness is essential as they possess the knowledge and skills needed to serve as patient and family advocates while helping them to navigate the intricacies of healthcare decision making. Their unique role at such a crucial time in the illness trajectory makes them well suited to spearhead interventions to improve communication between family surrogates and members of the healthcare team.¹⁶ Specifically, critical care nurses are well-positioned to facilitate high-quality surrogate decision making by: educating the family on the role of the surrogate, organizing regular family and multidisciplinary team meetings, preparation of the family before each meeting, providing emotional support and prompts during the meetings, and being present for “the meeting after the meeting.”¹⁷ Whether or not the surrogates in this study had a healthcare background, attempts were made to keep up with understanding the terminology included in the conversations they shared with health care providers. It was important to them to be able to speak the language of health care. This is a challenge for some individuals faced with such difficult tasks, and perhaps more so for those without a medical background. Critical care nurses can provide interpretation and explanation of overly technical language serving as a bridge to improved communication with members of the health care team.

Though discussions of shared decision making largely focus on the patient and clinician, when surrogate decision making is required, family preferences become an important part of the conversation. Avenues for reaching out for decision-making support from family and friends seemingly created a sense of comfort and peace for family surrogates. These results support recommendations from the 2014 National Academies discussion paper that endorses shared decision making as a key aspect of patient-centered care.¹⁹ Research demonstrates that prognoses and likely clinical outcomes are poorly understood by family surrogates of chronically critically ill patients. This may stem from inadequate communication during chronic critical illness and often exists between patients, clinicians, and families.¹ Family surrogates expect to receive current and intelligible information devoid of inconsistencies from an organized healthcare team.²⁰ This provides an entree for the critical care nurse to help facilitate this conversation, particularly, when discussions involve goals of care. Treatment decision making can have a negative emotional effect on family surrogates, which is often substantial and typically lasts from months to years in duration.²¹ Critical care nurses can provide emotional support and coping strategies through referrals, additional discussions, and reassurance which can reduce or remove the potential for anxiety, depression, and even post-traumatic stress disorder among family surrogates.¹⁸

There are inherent limitations of this study. Participants were selected as a convenience sample from the larger study and were willing to participate in the interviews. Therefore, the views of surrogates presented are likely biased.²² In particular, these interviews do not represent surrogate decision makers whose loved one died in the ICU following decisions to limit life-sustaining interventions. A strength of this study, however, is that it was able to capture the experiences of the family surrogates of chronically critically ill adults in their own words in the midst of them carrying out their roles as surrogate decision makers, thus providing real-time data as they reflected on their unique perspectives. Family surrogates were able to openly share their experiences in a nonthreatening environment. However, the fact that these interviews were conducted in the healthcare setting perhaps also somewhat limited the caregivers’ freedom to divulge their sincerest thoughts in other ways. Future research in this area can be conducted in the caregivers’ natural environment (such as their home settings) and might lead to more open responses regarding their role as surrogates with less of a focus on health care providers.

While “in the moment” it appeared that family caregivers had an overall positive experience with decision making, though the long-term impact of this process is unknown. According to Adams et al., even while family members’ symptoms of post-traumatic stress disorder (depression and anxiety) significantly decreased three months after the intensive care experience regardless of the patients’ final disposition; many still had a significant risk for anxiety, depression, and post-traumatic stress disorder at three months following the intensive care experience.¹⁸ This places these family members at risk for long-term negative psychological health outcomes. The use of mixed methods analyses to study this population of surrogate decision makers to determine the impacts of family caregiving both “in the moment” and longitudinally may provide more in-depth understanding of their perspectives. It would also be important to determine if there are differences in these results among family caregivers who are involved in the decision-making process, versus those who are not; and in those who may be distance caregivers versus those who are not.”

This study provides further evidence to support the need for enhanced communication strategies related to decision making for the chronically critically ill. It adds to the growing body of literature in this area with qualitative perspectives from the family surrogates. Armed with this information, nurses, along with their healthcare teams, can gain enhanced understanding of the family surrogates’ perspective and inform intervention studies that are translated into clinical practice. These interventions may enhance the family surrogates’ ability to participate fully in care and treatment decisions related to their loved one.²³ This knowledge will assist in meeting the needs of the chronically critically ill more efficiently. Enhancements to the outcome of family surrogate decision making can help to reduce the burden experienced by family surrogates, enabling them to better care for themselves as well as their loved ones.

Biography

Dr. Moss is a post-doctoral fellow in the Frances Payne Bolton School of Nursing at Case Western Reserve University and Jonas Nurse Scholar Alumni.

Dr. Douglas is the Arline H. & Curtis F. Garvin Professor of Nursing Excellence and Assistant Dean of Research in the Frances Payne Bolton School of Nursing at Case Western Reserve University.

Dr. Baum is a certified nurse practitioner at University Hospitals Cleveland Medical Center and PhD candidate in the Frances Payne Bolton School of Nursing at Case Western Reserve University.

Dr. Daly is the Gertrude Perkins Oliva Professor in Oncology Nursing in the Frances Payne Bolton School of Nursing at Case Western Reserve University and Clinical Ethics Consultant at University Hospitals Cleveland Medical Center.