Participants’ perceptions of futile care varies depending on the patient’s condition and the personal perspective of patient’s condition. The perceptions of the participants in our study on medical futility are related to moral values to respect patient wishes, ease suffering, maintain truthfulness and distribute scare healthcare resources appropriately.
1. The concept “futile medical care”
While participants might each have a familiar sense of what we would mean by invoking the term “futile medical care”, the term was not explicitly defined. Several participants in this study have shown cautious attitude towards labelling a medical treatment as futile. Our data analysis suggests that this is because participants not only realized the difficulty of providing a clear definition of the entity “futile treatment”, but also were hesitant as to whether they could view a life sustaining medical treatment as futile. However, participants view the concept “futile treatment” as familiar. They appeared to have a sense of the term “futile medical care”. Some participants viewed the concept “futile medical care” as quantitative futility, sone other participants viewed it as qualitative futility, with some participants attempting a mixed approach.
More precisely, 7 out of the 16 participants in this study (P4, P7, P9, P11, P13, P15 και P16) felt that providing medical care to patients with no life expectancy is providing futile care. However, they did not attempt further to define the term “life expectancy”. Please note that most important things can be said or experienced in the last hours of the patient. Two out of the 16 participants (P8 and P12) felt that a medical care that cannot improve patient’s quality of life is futile, without however attempting further to define the term “quality of life” in the context of end-of-life care. Three participants (P3, P5 and P6) said that futile care is an ineffective care without attempting further to define what is meant by the term “ineffective”. Participant P14 viewed as futile the treatment that proves harmful to the patient in the sense that it imposes extra pain or suffering.
Interestingly, several participants (P1, P2, P10 and P14) expressed explicitly their concerns about labelling a medical care as futile. Participant P2 said that had difficulties in defining the concept “futile medical care”. More precisely, participant P2 said, “it is difficult for someone to determine situations that could cause health professionals to consider a medical intervention as futile”. She said that she learned from her professional experience that many elderly people are discharged alive from the intensive care units. Furthermore, she attempted to provide a definition based on survival rates and quality of life. In a similar vein was participant P1. In addition, the following interview quotes are indicative of the difficulty of providing (or reluctance to provide) a clear definition of the concept “futile medical care”. Participant P1 suggests that “the concept ‘futile medical care’ needs to be discussed by an international scientific community”. Participant P6 suggests that “the determination of medical futility can only be made within the context of clinical situations, which however, should be clearly outlined”. Participant P13 said, “there is[the concept] “futile medical care” but…I don’t know [if it is morally right to accept it] …”. Participant P10 said, “…a medical intervention…perhaps…must never be labelled as futile…”. Participants P1 and P14 declared, “I do not like the term futile medical care” and “the concept futile medical care is a hard concept”, respectively.
2. Patient’s reliance on machines – Technological dependency
Participants P5 and P6 believed that mechanical support should only be provided in patients who have chance of recovery from being dependent on them. Interestingly, however, some participants expressed strong reservations on this view. Participant P10 emphasized that “technology by itself cannot make it futile to further provide medical treatment”. She said that a medical treatment can by no means be considered as futile if there is verbal or non-verbal communication (i.e., through eye contact) of the patient. Participant P11 clearly declared that providing further medical care to a brain-dead patient should be considered as futile. “However”, she said, “I do not know if the provision of a life-sustaining treatment to a patient in persistent vegetative situation might be thought of as futile”.
3. Reasons behind providing futile medical care
Fear of legal action, lack of regulatory framework, physicians pressured from (mostly uninformed) family members and physicians’ personal motives were reported as important reasons behind providing futile medical care.
Fear of legal action was a factor that emerged from our data analysis as significant reason behind providing futile medical care. This was a recurrent finding throughout the narratives of the vast majority of participants (14 out of the 16 participants in our study). Only two participants (P2 and P7) believed (even though not wholeheartedly, using the expression “rather not”) that the fear of legal action was not a significant reason behind providing futile medical care. Furthermore, physicians pressured from family members into providing futile medical care (P3, P4, P14, P15, P16) and the lack of a clear regulatory framework for futile medical care in the country (P1, P4, P14) were reported as driving forces for the provision of futile medical care through intensifying the health professionals’ feeling of fear of legal action. Participants (P5 and P8) reported that in some hospitals where there have been developed documents (according to protocols, regarding the provision of futile medical care) which are to be signed by the patients or their representatives (i.e., family members), the fears of lawsuits are limited.
Moreover, some participants were of the view that the physicians were drivers of futile medical care. Participant P2 said that the physicians were drivers of futile medical care because of their emotions or their personal motives such as the egoistic motive for “carrying it off”, namely, coming out on top. She said that physicians are not afraid of lawsuits. Participant P7 said that “psychological and emotional factors are more significant reasons behind providing futile medical care than the fear over encountering legal problems”. At any rate, it should be highlighted that many participants were of the opinion that physicians often provide futile medical care to their patients.
Participant P3, who had long previous work experience in intensive care units, wonders why many futile treatments are provided in ICUs where the probability of taking any legal action against the health professionals is very low. ICUs are closed facilities.
Interestingly, three participants argued in favor of providing futile medical care, at least under particular circumstances. They reported their lived experiences during their long career history (more than twenty years) as nursing professionals. Participant P2 reported a case of a patient in a critical situation. There were pressures from nursing personnel on physicians to consider the medical care as futile and “let him leave”. However, the physician’s persistence in providing futile medical care resulted in the patient being discharged from the intensive care unit in a “good level of conscience”. The experienced nursing professional P1 said that “while a patient was expected to live for a very short period of time, finally, he lived much longer”. Participant P5 reported that had witnessed the case of a child in end-of-life phase. The medical team had decided to consider the provided care as futile and to interrupt it. The child died during seizures. Participant who witnessed that scene was emotionally charged for the rest of her life.
Interestingly, participant P2 emphasized the lack of facilities providing end-of-life care. She said that while many patients who have been treated in intensive care units are ranked as severely disable at discharge, further treatment of these patients may be erroneously labelled as futile despite the fact that it might be beneficial and valuable to them (might improve their quality of life) if provided in a palliative facility or at patients’ own home. Patients in such situations cannot be treated sufficiently in an understaffed classic open hospital ward.
3.1. Consumption of considerable resources
Furthermore, wastage of money and consumption of considerable resources is a reason behind labelling a medical care as futile. The vast majority of participants declared that spending money and consumption of resources should be factored in when considering the provision of a medical treatment that can be labelled as futile, especially in the time of the Greek financial crisis, namely, over the last decade, when the available resources were limited (P9 and P14). Note, however, that most participants appeared to not wholeheartedly support this consideration. The expression “even though it seems unfair” was recurrent in the interview data (P3, P4, P8, P14), especially because the patients had paid their health insurance contributions (P6 and P11). Participants P2 and P3 said that we are obliged to take into account the costs, especially when it comes to providing medical care in intensive care units where the consumption of resources is considerable. Two participants (P11 and P12) expressed some clear reluctance to accept the role of costs in end-of-life decision making. Participant P1 expressed his clear negative attitude towards the suggestion that costs should be taken into account when making end-of-life decisions. In contrary, participants P2 and P16 provided wholehearted support to this consideration, without reservations.
The high costs of futile medical care delays accessibility to healthcare resources for patients who have life expectancy (P9, P10, P12 and P14). Participant P15 clearly determined the term “life expectancy” when considering the role of costs in labelling a medical care as futile. She said, “if a patient has a chance to survive the costs should not be taken into account” implying that even a very low survival rate may be important. Participant P7 said that we should not take into account the costs when it comes to facilitating a dignified death. She said, “ensuring a dignified death is the only meaningful thing we can offer to these people [patients nearing the end of life]”. Indicative of the participants’ half-hearted attitudes towards accepting the role of costs in deciding about a futile medical care was the speech of participant P10 who was of the opinion that the money saved by avoiding or stopping futile medical care could be better spent on creating for him the most advantageous conditions possible, such as “providing better psychological support or palliative care…improving the atmosphere in the patient room, i.e., by painting the walls…making the patient laugh…” However, the participant found this suggestion impracticable.
Participants P13 and P15 declared that physicians often do not consider the costs. This is true, despite (healthcare administrator’s) recommendations on the contrary (P13).
4. Who is the decider? - The nursing professionals’ role in deciding on the futility of a certain treatment
In this study, it is highlighted the nursing professional’s role as participant in decisions on futile care and as mediator between physicians and patients (and family members). Furthermore, it is prioritized the patient’s role in decisions on futile care.
Almost half of the participants suggested that end-of-life medical decision process should incorporate the patient (prioritizing their preferences) and the attending physician (P2, P4, P5, P7, P8, P9, P14). Participant P3 was of the view that physicians should make unilateral end-of-life decisions, after having listened to the nursing personnel. However, almost half of the participants suggested that end-of-life medical decision process should always incorporate all key stakeholders, including nursing professionals and family members (P6, P7, P10, P12, P15, P16). Participant P4 was right in saying that a person who is in long-term proximity relationship with the patient (“the closest person to the patient”) should be considered as close family member.
Participants recognize that nursing professionals are frequently not involved in the end-of-life decision making process (P7), and therefore, they feel abandoned and powerless (P14). Participants wanted to be more involved in end-of-life decisions (P3, P10, P11, P13) for the very reason that nursing professionals spend much more time with the patient than physicians. Participant P13 said: “ nursing professionals and patients are rubbing together” and considered that nursing professionals should play a leading role in end-of-life decision-making. Importantly, P14 said that nursing professionals understand the patients’ values and preferences, and hence, they are ideally positioned to act as mediators between physicians and patients (and family members). Participant P7 said, “nursing professionals are included in end-of-life decisions, though to a limited extent” and emphasized the need for good communication between health professionals in order for nursing professionals to be consistently included in end-of-life decision making processes. Some participants considered inappropriate for family members to be included in end-of-life decision making processes due to the fact that pressures from them is often a driving force for the provision of medically futile care (P2, P8, P14).
4.1. Provision of information to family members
From our data analysis it has emerged that patient family members often keep (false) hopes alive due to a lack of information and knowledge. It is so difficult for them to accept that the death of a loved one is inevitable, and they believe in a miracle. For instance, participant P4 (who had 22 years of previous work experience) said, “Nobody is wired to accept that death happens…”. Family members may become quarrelsome and imply that in case of negative development they might take legal recourse against the attending physicians (P4). It was emphasized that the bonds between family members are particularly strong in Greece (P7). Participants highlight that in the Greek clinical context patients and family members lack information about end-of-life issues (P1, P4, P7 and P14). It has been stated that well-informed family members (especially when the information provided is accompanied by psychological support) are expected to put less pressure on physicians trying to cause them to provide futile medical care (P10). Participant P8 suggested that public education should focus on the specific and limited role of the intensive care units as well as the option of palliative care to prevent the general public from having unrealistic expectations. Interestingly, two participants (P1 and P10) highlighted the psychological benefits of providing a futile medical care mainly due to offering (false) hopes. Participant P1 (who had 20 years of previous work experience) said, “Let’s see it in a holistic way…providing a futile medical care may be psychologically beneficial, even if it may not be biologically beneficial…Nobody knows how much grief and death cost in our inner world.”
5. Participants’ personal responses to situations where futile care is provided
It was emerged from our data analysis that providing futile care is a major factor that negatively affects the nursing professionals’ inner attitude towards performing their duties. While participants developed resilience promoting strategies to deal with providing futile medical care, they emphasized the negative impact of providing futile care on their inner world. A tension between their inner world and outer world was emerged from our data analysis.
Interestingly, participants normalized their negative experiences of providing futile care, stating that they were performing their duties to the best of their ability and with respect for their professional standards. However, in apparent contradiction to these assertions, they expressed concerns about their inner attitude towards caring for patients receiving futile medical treatment and emphasized the emotional nature of their duties. The open-ended questions permitted nurses to specify situations of futile care, which they regarded as morally distressing.
Six out of the 16 participants in this study (P2, P5, P6, P7, P11, P12) declared that providing futile medical care does not affect their behavior towards their patients and family members. Interestingly, participant P6 said that he takes care not to change his behavior towards his patients because “patients nearing the end of life understand”. Participant P7 said that he takes care not to change his behavior towards his patients (nearing the end of life), because she “must ensure good quality of life for her patients right to the end”.
Notwithstanding, ten participants declared that the negative emotions they experienced because of providing futile medical care affected negatively their attitude and behavior towards their patients. Participant P13 said: “when you know that a medical care is futile, you are not in the mood to ‘run’, to communicate with the patient…when you feel that your efforts are not ‘paid off’ [on an emotional level], you feel that you are doing drudgery”. Participant P3 declared, “I may not be on-task… I may omit to provide the complete treatment to the patient”. Participant P10 said, “if there is a sense of vanity in the air, nursing professional may not be in a good mood and become less communicative”. However, Participant P10 said, “if the patient does not express (by any means) a strong desire for struggling to save his or her own life, nursing professionals work in a dominant atmosphere of futility.” In the same vein was participant P14. Participant P8 declared that nursing professionals distance themselves from their patients.
Participants P2, P5, P6, P7 and P11 said that they are able to get their emotional reactions under control, i.e., participant P2 said, “I am often emotionally affected but…I turn off the switch…”.
As regards the emotional experiences of caring for patients who receive futile medical care, many participants declared that they often experience sadness and grief (P4, P7, P9 and P14). Interestingly, some participants reported that they often feel anger or become stubborn for various reasons. Importantly, it has been reported that they feel that providing futile care saps their energy.
Participant P12 said that in such situations she often becomes stubborn about ensuring patients and families experience a ‘good’ and dignified death. She said, “when providing a futile care, you have to show greater respect for the patient’s body.” Participant P9 felt that providing futile care sapped her energy. She said, it “wastes my energy which is something needed by other patients.” In a similar vein was participant P14 who declared that providing futile care is “soul-sucking.” The participant said, “I feel so angry with myself when I am forced to give false hopes to a sick person who looks at my eyes and say things that she would never say to her family.” Participant 4 had said almost exactly the same thing. Participant P16 said, “We get angry because of the failure of our efforts to succeed…we are emotionally charged.” Importantly, participant P1 said, “There are negative emotions in the inner world of nursing professionals, which will never be externalized…”. Interestingly, participant P9 said, “…I feel anger, because providing futile care wastes my energy…which is something other patients need…”
6. The concept of “good or dignified death”
All participants took a clear position on “good and dignified death”. Interestingly, from our interview data analysis emerged a list of criteria for assessing the patients’ quality of life and labelling the dying process as undignified, which, when identified in clinical situations involving medical treatment, the treatment might be perceived as futile.
A range of various and distinct features of “good and dignified death” were emerged from our data analysis. Some of them appeared as recurrent findings. These features can be roughly categorized into four categories. There was emerged features revolving around a) pain and suffering, b) treating patients with respect, c) the appearance and image of the patient body, and d) the interaction and interrelation between patients and their relatives.
Among the features of a good and dignified death have been cited 1) pain and suffering (P5, P6, P7, P10, P13, P14 and P16), 2) enforced continuation of patient’s (full of suffering) (P13 and P15), 3) treating the patient not as a person but as a medical event, (P14), 4) patient going to death without being prepared for his or her own death (P1), 5) the lack of respect for patient’s person and personality (P2, P3 and P14), 6) the patient’s inability to determine how he or she will die (P8), 7) the lack of cleanliness (P4, P7 and P14), 8) patient incapable of self-serving and completely dependent on others (P8, and P9), 8) patient’s feelings of humiliation and powerlessness (P14), 9) patient’s unmet actual (P14) or presumed preferences, i.e., not ensuring religious patients have the opportunity to take Holy Communion (P2), 10) patient feeling incapable of keeping pace with what is meant by the term “human being” or “human condition” (P3), and 11) patient feelings of imposing on others (P8).
Furthermore, many participants have recurrently placed considerable emphasis on two main aspects of “bad or undignified death” that deserve particular attention: the appearance and image of the patient body, and the interaction and interrelation between patients and their relatives. A number of situations have been reported by several participants (experienced nursing professionals) to be features of what is meant by the term “bad or undignified death”.
The appearance and image of the patient body regarding the patient’s appearance a) taken as it really is, b) as it is perceived to be by the patient, or c) as it is seen through others’ eyes. The patient dies an undignified death if a) his or her body is “melting” (P11), b) are getting bed sore (especially if the bed sores are neglected) (P7 and P13), c) the patient body changed and lost its shape (P11), the patient image degenerated into a decomposition image (P3), d) “150 sachets” are attached to the patient’s body (P4), e) a Levin feeding tube is inserted into the patient’s body (P4), f) the patient undergoes many painful venipunctures daily, while nearing his or her inevitable end of life (P12), g) the patient is not capable of self-serving (especially defecating or urinating) (P8), h) the patient arouses pity for him/ herself (P5 and P9), the patient begs to die (P5), i) the patient is not capable of speaking or communicating with others (P8), j) the patient is getting naked often (P4), h) if the patient could look at him/ herself in the mirror, he/she would feel sad (P5).
The interaction and interrelation between patients and their relatives is a factor which has been reported to be an important aspect of the “bad and undignified death”. It was said that dying a death in isolation, in a “cold” hospital environment, is not dying a “good and dignified death”. Dying at home environment facilitates the patient to die a “good death” (P4 and P9). Dying a dignified death means dying surrounded by family and loved ones, communicating and being in contact with them, i.e., clutching the patient’s hand tightly or caressing the patient’s head (P2 and P4), giving to the patient their love (P14), thus making patient not feel alone (P2, P4 and P7), “patient and family (or other loved ones) get through hard times together” (P7), the patient has people around him or her to share his or her fears (P4). Family members must create an optimistic environment (P10) where there is no mourning (P14). Participant P2 who had a lot of experience in the specific field of intensive care medicine said, “patients in sedation need human contact” and “you never know what a patient in sedation can understand”. Importantly, participant added, “I had a habit of caressing the head of a child who was in sedation…when she waked up, she told me that she kept seeing me in her dreams caressing her head.”