Study Design, Data Collection, and Data Analysis

Three studies used a descriptive qualitative design,^8–10 and 2 studies did not report the type of study design used.^11,12 One study each used the following: focused ethnography,¹³ grounded theory,¹⁴ and interpretive phenomonology.¹⁵ One study used a mixed-method convergent parallel design.¹⁶

Six studies collected data using semi-structured or in-depth interviews.^{8–10,12,14,16} One study collected data using observations and interviews,¹³ and another used interviews and documents.¹¹ One study collected data using focus groups.¹⁵

Four studies analyzed their data using thematic analysis.^8–10,15 One study each used the following: descriptive abductive,¹³ content analysis,¹¹ qualitative descriptive,¹⁶ Miles and Huberman’s 3-phased analysis,¹² and grounded theory.¹⁴

Country of Origin

Of the 9 included studies, 3 were conducted in Australia,^9,10,15 2 were conducted in the US,^11,13 and 1 each in the State of Kuwait,⁸ Turkey,¹⁶ Taiwan,¹² and UK.¹⁴

Study Participants

Three studies included health care providers who care for adult patients using ECMO.^8,11,15 Three studies included adult participants who had themselves received ECMO.^9,12,16 Two studies included family members who had supported an adult who had received ECMO.^10,14 One study included clinicians and family members of patients receiving ECMO.¹³

Interventions

Four studies were focused on ECMO broadly (VV and VA).^9–11,13 Two studies did not specify which type of ECMO was involved,^12,16 whereas 2 studies focused on VV only.^8,14 One study included both ECMO (not specified) and ventricular assist devices.¹⁵

ECMO Initiated by and During Crisis

Family members and patients reported that a dramatic and sudden decline in the patient’s condition precipitated being offered ECMO.^9,10,14 It was in this context of an urgent crisis that family members were asked to be surrogate decision-makers for the patient.^9,13,14 This was typically because the patient was unable to provide consent due to being sedated or otherwise non-responsive.¹³

Family members described agreeing to ECMO, seeing it as buying time for recovery and as a lifesaver.¹³ In this way, family members saw ECMO as offering hope.^9,13,14 Several family members described ECMO not as a choice, but as necessary, as the alternative was “near-certain death (p. e5).”¹³ As 1 family member described it, “[i]t was clear it was her only chance so it wasn’t a case where you’ve got a choice (p.13).”¹⁴

Physicians also described seeing ECMO as buying time and as offering hope, but their perspective on individual cases was more uncertain or tentative: “For attending surgeons and intensivists this uncertainty was exacerbated by a feeling of being pressured to use ECMO frequently by other clinicians and by high family expectations despite the difficulty of obtaining a full picture of patient status pre-intervention (p. e5).”¹³ Physicians reported pressure to initiate ECMO to prevent death even as they lacked a comprehensive picture of the patients’ clinical condition.¹¹ As with family members, physicians and providers had to make quick decisions and act to save patients, often working with competing pressures and limited prognostic information.^11,13

ECMO as Escalating Intervention

Time stopped for patients who were on ECMO as they were generally sedated and could not recall their ICU stay.^9,10 Yet it carried on for their family members, who described it as a period of great stress, fear, and worry. As a partner of a patient who received ECMO described it: “… really, in a way it’s a good thing that he wasn’t awake to experience all of that trauma and stress. I mean, it was really up to me and [patient’s] sisters to bear that, but, yeah… (p. 1160).”⁹

Watching their loved ones on ECMO and changes in their condition or complications was emotionally and psychologically difficult for family members. ECMO treatment unfolded in front of patients’ family members without them knowing what to expect with each passing day: “…coming in every day and seeing him hooked up to all those machines, it was so traumatic for me…ECMO machine is lifesaving, it can also be damaging to the brain, and I had no idea that was the case. And when they told me that, that was then the next trauma… (p. 1660).”⁹

When physical changes or complications were taking place (e.g., mottling, overt bleeding), family members described being disturbed and anxious and worried.^9,13,14 Throughout the intervention period, family members struggled with anxiety and the feeling that death was close at hand.^9,16 During the stay in the ICU, there were moments of proximity to death “… because there were three separate occasions that I was told, ‘Bring family in if you want them to say goodbye to him’ (p. 1160).”⁹

If family members raised worries about the limits of treatment, it was reported that clinicians “attributed family skepticism about continued escalation to inexperience; these surrogates, they explained, lacked the prognostic and interventional expertise to know whether the care ceiling had truly been reached (p. e5).”¹³ Relatedly, some clinicians described that they saw initial consent to ECMO as consent to aggressive care: “Once you sign that paper and once you make that decision to go on ECMO, it kind of comes with a commitment. So, it’s not [as if] you go on ECMO and if in two days things are not working out we’re going to take it off and let you pass peacefully… You’re signing and giving your loved one over to us — and let us take this on and let us see what we can do (p. e5).”¹³

Yet this was not universally held by all clinician participants. One clinician observed that: “[e] verything we did just caused more complications…like losing your limbs or having a stroke or coding. I question, what are we actually doing? Are we actually treating this person like a human being or is (the patient) becoming a lab experiment (p. 3-4).”¹¹ In this same study (evaluating the ethics consultation protocol), particular cases were evoked by clinicians during interviews. Clinicians referred to “extreme procedures, amputation of limbs, and dyspnea and anxiety for those awake and alert patients stranded on ECMO (p. 3).”¹¹ It was clear in clinicians’ descriptions that they saw ECMO as involving suffering for their patients.¹¹

Coping and Waiting During ECMO

In this context of escalating care and waiting, nurses who provided intensive one-on-one care to ECMO patients sought to build a connection with their patients.^8,15 This was particularly because of how critically ill they were and that their prognosis was uncertain: “…do the best to improve their life while they’re waiting — because they could have a stroke the next day and die (p. e12).”¹⁵ Empathy, for nurses, was seen as enabling the provision of more tailored care in the context of ECMO, and that forming a connection was a key part of providing support and comfort, and was experienced as rewarding. Nurses described that “backing off emotionally is sometimes hard, particularly if you actually really like them (p. e13).”¹⁵ The intensity of the care and depth of the connections to their patients were pointed to as playing a role in compassion fatigue and burnout. Also contributing to burnout was a full caseload of high-need patients^8,15 “…but also full on families; dealing with the emotional side of ECMO or VAD [ventricular assist devices] in someone acutely ill with families…who don’t get along or who don’t understand what’s happening (p. e13).”¹⁵ Thus, while family members played an important role in supporting patients, they could at times complicate the role of those providing nursing care.

Family members were involved in patients’ daily care when they could. This involved supporting patients and communicating with clinicians. Family members varied in their level of engagement with medical information,^9,13 but in all cases saw communication with the clinical team as an essential source of support and coping:

The most important thing is communication to the family… Even if there’s nothing happening, just let the family know that nothing’s happening… Honestly is the best because when you get in there and you see your family member hooked up to machines, and things beeping, and stuff going on, and nurses running around like headless chooks, they just need to know that’s nothing’s happening… (p. 1664).⁹

Many family members took photos, wrote in a diary, or otherwise documented their time in the ICU as a way of coping and to have something to show their loved one, other family members, or relatives.^9,10

Distance from the ECMO centre and their home was particularly hard for family members to cope with, forcing them to either temporarily relocate close to the hospital or spend time away from their critically ill loved one.⁹ Adult family members with young children or other caregiving responsibilities often felt torn between tending to those responsibilities and their critically ill relative,⁹ and they had to juggle multiple roles and manage their life around their critically ill family member:

Yeah, it was kind of a juggle. So, I was still working 3 days a week and I was just trying to organize people to look after my kids… I was there every day that I wasn’t at work… I sort of shared myself around between my two brothers that live down there and just at hotels and stuff…financial responsibility was a lot of pressure, but I’ve never got into a situation where things went really bad… (p. 1661).⁹

Some family members described drawing on other ECMO families for support. However, these experiences were not equivocally positive because sometimes seeing another family cope with the death of a loved one or other changes in condition led to distress and worry. They do suggest that peer support can be a way that family members of patients receiving ECMO can get support, but that they can also cause distress and worry.^10,14

Reaching the Limits of Treatment and Withdrawing ECMO

In cases where the patient failed to recover, views on who has the authority and/or the responsibility to make the call to continue or discontinue ECMO differed across providers, and between providers and family members.^11,13

In a study focused on evaluating the use of an ethics consultation protocol, providers reported how the protocol helped resolve conflicts between treatment teams.¹¹ In other cases, providers described coming to an agreement among themselves when limits of treatment had been reached.¹³ Here, they communicated their decision to family members 1 to 2 days after they reached an agreement.¹³ This points to the way that the clinical teams supporting ECMO patients required time to negotiate and decide the limits of treatment among themselves before involving family members.

Providers in a study evaluating an ethics consultation protocol felt it was helpful because it made the failure of treatment transparent and the decision to stop ECMO non-negotiable to the family.¹¹ One provider described this need for transparency and non-negotiability further: “[f]or this family…they will not be able to make the decision [to stop ECMO] on their own accord unless clearly told the patient/medical team has reached the point we talked about when the fight is lost and it is ethically wrong to keep supporting [the patient’s] body with devices intended for short-term use (p. 3).”¹¹ In other cases, however, clinicians deferred to families to withdraw life support “attributing this shift in authority [to decide to withdraw ECMO] to families’ familiarity with their ‘loved one’s wishes’(p. 6).”¹³ This suggests clinicians may, in some cases, anticipate resistance from or differing opinions with family members (likely depending on the family/patient). Different justifications for the decision to withdraw life support, whether the patients’ clinical status or the patient’s wishes or what is best for them, may help clinicians and families alike justify the decision.

During this transitionary period, clinicians described making minor care adjustments “expressing the importance of families witnessing clinicians ‘doing something’ while they gradually came to terms with the inevitability of withdrawal (p. 6).”¹³ When faced with making decisions about withdrawing treatments, family members were described as putting the responsibility for decisions onto patients’ clinical status.¹³ Family members found reassurance in the idea that they had exhausted all options for saving their loved one.¹³

When a patient on ECMO died, clinicians saw it as due to the limitations of existing patient selection criteria; in other words, in looking back, they saw that patient to be a poor candidate for ECMO.¹³ This highlights again the ways that the lack of needed information for an accurate prognosis affected physicians’ ability to make evidence-based clinical decisions around continuing ECMO and its withdrawal.¹¹

Recovery From ECMO and Discharge to Home

With the successful withdrawal from ECMO, a whole set of new challenges awaited patients and their family members. Patients were often described as being delirious upon regaining consciousness, which was hard for both patients and their family members.¹⁴ When their loved one was first coming to, a family member described how “[h]e was dribbling and looked brain damaged…he said he had all these big red crabs all over him and wanted us to knock them off. That was funny yet frightening, well it’s funny now but it wasn’t funny at the time (p. 14).”¹⁴ As patients withdrew from sedation, they confronted their limited physical mobility due to muscle loss and weakness from prolonged bed stay¹⁶: “The only thing that I probably dreaded the most was the physio because my legs were really — I couldn’t even do a simple thing like lifting my arms above my head. And that was the hardest thing because my legs were like rocks. I couldn’t move my ankles or anything (p. 222).”⁹

Being transferred out of the ECMO unit was cited as a hard experience for family members.¹⁰ This was because they felt that the new unit and ward staff had no appreciation for how critically ill their relative had been and the seriousness of their condition,¹⁰ but also that they felt that no one knew the patient to coordinate their care.¹⁰ Patients described wanting more support for early discharge to help them return to being as active as possible.¹⁶ They also desired in some cases for more information to help support them once they returned home: “It would have been nice if they had told me what to eat and what kind of activities to do and had helped me get rid of my fears and worries about the wound site after I had been discharged (p. 596).”¹⁶ Some noted that travel to the multiple follow-up appointments post-discharge remained a challenge because of the required time, coordination, and expenses.¹⁰

Back at home, a host of physical challenges remained: patients described living with continuing pain and numbness and that they lacked the ability to do many basic activities of daily living (e.g., basic self-care, eating, toileting, bathing).⁹ This led to continued dependence on others, particularly their family members who continued to play a central role in their care. For some, limitations in their mobility meant that they could not return to work or live as they once did, including in their own home: “I cannot stay in my home anymore because I cannot climb up five floors, so I have to stay with my son (p. 596).”¹⁶ For others, these limitations meant that they could no longer engage in activities that gave them personal pleasure: “Yeah well that was the same old thing, she just sort of said ‘I got this up here, and I can’t do what we did before, I can’t play basketball, I can’t play tennis,’ and she was just going on. She put on a couple of kilos — Yeah she did get a little bit depressed that she just couldn’t do what she did before… (p. 1663).”⁹ Some people described socially withdrawing post-ECMO and struggling to connect with others because of their hoarseness or mobility limitations.¹² These experiences highlight the ways in which their critical illness continued to affect their lives in a multiplicity of ways even after discharge.

Family members talked about how stressful and traumatic it had been to watch their loved one almost die and receive ECMO. Many described how the experience still affected them, that they remained scared and, at times, had intrusive thoughts.¹⁴ Although this was described less often by people who had received ECMO, they too reported nightmares and the inability to forget their experience.⁹ Many used the diaries, photos, and documentation from their family members to understand what they had gone through and to fill in their memory gaps: “[s]o we had our own running timeline that I’ve gone back and read over. Even though I was unconscious, it’s still painful to read, evokes a lot of emotions (p. 224).”⁹

Family members described being unable to talk about the experience with their loved one who had undergone ECMO because they did not want to talk about it or remember it or, when they did listen, they were not able to relate to the supporting relatives and/or the experience.^10,14 This was corroborated by some patients themselves: “I do not recall and I do not want to. I don’t even like the idea of the fact that I had tubes down my throat. I had the gastric feeding tube into my nose, and I absolutely hated that… (p. 223).”⁹ Among study participants, there was no mention of the support that family members and people who had received ECMO were receiving for their psychological and emotional concerns. However, in the 2 studies in which family members shared these views, both found that they welcomed the opportunity to talk and saw the interview process itself as valuable for being able to tell their story.^9,14