Perceptions of COVID-19 patients in the use of bioethical principles and the physician-patient relationship: a qualitative approach | BMC Medical Ethics
From the sixteen interviews, 5 to women and 11 to men, all with a COVID-19 diagnostics but none intubated, seven data categories were distinguished. The first and broadest refers to the participants’ experiences on the principles of bioethics, which include dignity, beneficence, vulnerability, and autonomy. The second level includes a category associated with the doctor-patient relationship. The third level refers to the patients’ experience of their disease and the role of family.
Dignity
Patients perceive the concept of dignity from two perspectives, involving both the intrinsic value of individuals and respect towards others. Regarding intrinsic value, participants emphasized that “[…] each person is important and valuable”. They linked dignity to self-respect and holistic self-care, emphasizing the need to uphold personal values. Patient 11 mentions that “dignity is […] not to lose values, respect above all for oneself, to take care of the person in an integral way”.
Furthermore, patients associated dignity with respect for others, influenced by the upbringing and education they received. They viewed dignity as having education, being respectful, avoiding envy, and refraining from comparing oneself to others. They acknowledged the role of parental guidance and values in shaping their understanding of dignity: “[…] the education that our parents gave us, the values”. Additionally, gratitude was connected to dignity, with patients considering humility, kindness, and gratitude as integral aspects of it.
Participants also shared instances they perceived as undignified treatment, which involved a lack of respect. Patient 6 expressed that disregarding someone’s dignity equates to “ignoring him, belittling him […] not having values towards our fellow men”.
Charity
Beneficence, as a positive interaction between doctors and patients, is characterized by trust, empathy, and effective communication. Within the category of beneficence, we named four subcategories: justice, solidarity, diligence, and gratitude.
Patients expressed their feeling of receiving help from the care provided by healthcare professionals and receiving fair treatment across all subcategories. They acknowledged the comprehensive support received from doctors, stating that “[…] nothing was missing, and all the doctors helped a lot”. Establishing a positive relationship with healthcare personnel was emphasized by many patients, who valued the doctors’ attentive listening and considered it instrumental in their rapid recovery and the restoration of hope. The care received was described as good, extensive, sufficient, fast, prompt, and even the best for their COVID-19 recovery journey. Patients appreciated the continuous availability of friendly healthcare providers, showing an important level of attention and diligence: “everyone was very friendly: morning, afternoon and night, yes, without any carelessness”.
In terms of justice, patients reported receiving all necessary services and medications for their treatment. One patient described their experience of being admitted: “I spent about four hours downstairs to be given access to be admitted […] After, I had very good care, they gave me serum, antibiotics, medications”.
In addition to justice, gratitude was constantly reported; possibly, the most frequently mentioned. Some reported feeling grateful during hospitalization: “I had everything at hand, I even felt sorry for the nurses, so much inconvenience and I even said: I think I’m going to stay here for life, hotel and food on order”. While others spoke of feeling grateful for having left the hospital: “when I left there, I was very grateful to everyone, with all the nurses, even the cleaner… oh, you can’t imagine how grateful I was to them”.
Diligence was also present in the perception of the interviewed patients, finding answers such as: “this… Am I not bothering you too much? [asking the nurse] ―No, no, no Sir, that’s my job and we have to be on the lookout― and if at any time I said: I’m going to pee, ―Do you want me to help you down, Don?”; In general, the patients reported feeling always cared for by the staff since they not only covered the medical needs, but also felt accompanied: “yes, there is a nurse who was the first one who helped me walk to the bathroom and waited until I was ready and helped me to bathe and to go to bed”. The patients also recognized the health personnel’s professionalism: “[…] they were always err, well, vigilant, they checked the studies or the X-rays continuously and all that. They also checked everyone, and they did it on time”.
The patients acknowledged the solidarity shown by the healthcare personnel, highlighting their attitudes and actions that made them feel accompanied during their hospitalization. One patient expressed a sense of closeness and kindness from the staff: “Look, I felt very close to them, very kind; morning, afternoon and night, without no oversight”. Patient 12 stated: “He talked with us, and it was a talk about his own experience, life, what he did, and he was very kind to us. He even tried to be very aware of us. He was very, very kind.”. Patient 6 mentioned a significant detail that the staff implemented, which involved providing tablets for patients’ relatives to upload videos. Then “a doctor would come up with a tablet and from there he would focus on us, and the person was talking to us about the videos, so I want to think that [it was] a great stimulus for us, patients”.
Interestingly, solidarity among the patients themselves was also observed. They learned to support and care for each other, understanding that they were not the only ones requiring attention. Patient 3 mentioned the importance of recognizing that there were other patients and being understanding when their temperature checks or treatments were delayed due to attending to other individuals. Patient 6 further explained that, later on, they were informed that the video-sharing service was restricted to patients who were unlikely to be discharged, “so they are giving priority to those who were no longer going to be discharge and see their relatives, so they gave them the video to say goodbye to them”.
Vulnerability
The vulnerability category encompasses three dimensions: fear, dependency, and sadness. Patients expressed fear due to past experiences of losing loved ones to COVID-19, creating concerns about their own fate: “They were in confinement, or they were cremated and thus delivered with their coffin. Not one of them said goodbye. But no, it can’t be that this is going to happen to me”. They also felt pressure and anxiety when surrounded by other patients who were in more critical conditions, uncertain of their own prognosis. Additionally, they feared the impact their health status would have on their family life, particularly regarding their ability to support and be present for their loved ones. A patient said “I have a little girl. I mean, finally my wife knows how to work and well, I could have supported her [,] but there is no way to be at home with them […]”.
The dependency dimension highlighted patients’ feelings of relying on others and experiencing a partial loss of autonomy during hospitalization. They described a sense of disorientation, not being able to differentiate between day and night, potentially due to medication or the care received: “when the nurses arrived at 10:00 p.m. at night, I always thought it was dawn”. The third dimension, sadness, was expressed in relation to the emotions associated with hospitalization and isolation. Patients described feeling scared, sad, and desperate. However, despite their sadness, they also acknowledged moments of joy and gratitude toward the healthcare personnel for their medical attention. The patients’ improvement conditions gave rise to relaxation and humor: “I joked with the doctors, I told them that after the liposuction they did to me, I no longer have buttocks or boobs”.
Autonomy
Autonomy forces health personnel to explore the patient’s will and enhance their decision-making [6]. In this study it is presented in two dimensions. The first refers to the commitment and responsibility that the participants experience when contributing to their treatment, both inside and outside the hospital, as well as the desire to move forward. The second refers to informed consent as a “tangible expression of respect for people’s autonomy, which includes the right to information and freedom of choice” [14].
Participant commitment
Autonomy appeared as a prominent motivational factor among the participants, emphasizing their commitment to their treatment and the importance of following healthcare professionals’ instructions for their recovery. This commitment was clear during their hospitalization and after leaving the hospital.
Patients recognized the significance of their active participation in the recovery process and expressed their willingness to follow medical instructions. For example, “I think I understood that I had to help them to help me, and then I had to obey, [that’s why] I was there… if they tell me to stand upside down, I would do it.”. Another patient emphasized the importance of patient involvement, “since it also depended on the encouragement degree, consuming food, maintaining the position that improved in terms of oxygenation”.
Some patients described the challenges they faced in adhering to the treatment but expressed their determination to carry it out, nonetheless. Patient 1 recounted an instance where they didn’t feel like eating but recognized the necessity of doing so. They acknowledged the struggle to maintain their usual strength while being sick and expressed the importance of pushing oneself to overcome such challenges.
Furthermore, autonomy served as a source of motivation and strength for the participants when they left the hospital. Another patient shared their sense of empowerment: “from the moment I left the hospital, I was on my own. I was the one who cleaned myself… thanks God. I left the hospital still a little tired, but not to the degree that I had someone moving me… thank God I was able to fend for myself”. This self-reliance after leaving the hospital was seen as a positive outcome and a testament to their autonomy.
After being hospitalized, patients described how they continued to take responsibility for their own health. Patient 2, for instance, expressed the understanding that the treatment needed to be continued even after leaving the hospital, “aware that we still had to continue the treatment [did Dany follow it?] Of course… as they told me, we did it”. The hospitalization experience had a lasting impact on their commitment to self-care. Patient 6 reflected on their changed perspective on life, recognizing the value of the air they breathe and expressing a strong desire to avoid returning to the hospital: “If I don’t take care of myself, I’m going to go back to the hospital. I, how do you say? Touch on wood. To tell the truth, I don’t want to return there. They treated me very well, they treated me very well, but no thanks”.
In addition to autonomy, patients highlighted the importance of having a cheerful outlook and a will to live as contributing factors to their improvement. A patient recalled telling their family “I’m not going to die. Save those tears for me when you know I’m going to die, but I’m not going to die! I’m going to get out of here” (1-b,12). Patient 3 also emphasized the significance of inner strength, “I think it was very important to have the strength not to let oneself fall”.
Furthermore, patient 14 shared their initial confidence upon arriving at the hospital, “I told her not to worry, that I was happy, and she asked me why I was happy and I told her that because if I had COVID I was already in the hospital to be treated”. Their positive outlook proved their trust in receiving treatment and their willingness to confront the situation head-on. Overall, the patients showed a sense of personal responsibility for their own well-being. They acknowledged the need to continue their treatment outside the hospital, embraced a positive attitude, and displayed determination to overcome their illness and avoid readmission.
Informed consent
Within the dimension of autonomy, the patients discussed the concept of informed consent, highlighting two key factors: the right to information and freedom of choice. However, it is important to note that not all patients were able to personally sign the consent forms, and in some cases, a relative signed on their behalf.
Some patients expressed their understanding of the treatment and the details of their care, acknowledging that their doubts were clarified by the medical staff. Patient 7, for example, stated that all their doubts were addressed by doctors and nurses, “I was very restless and if I had doubts, I asked, and my doctors and nurses answered me, I did not have any doubts”. On the other hand, there were patients who did not have a clear recollection of the informed consent process. Patient 4 mentioned that their niece may have signed the consent form on their behalf, but they were not aware of the specifics: “they just admitted me, I don’t know if she, my niece, signed any paper”. Patient 6 expressed uncertainty about whether the possibility of intubation was explained to them or their sister: “no they never told me, they didn’t […] I don’t know if they told her [sister] that she was going to be intubated, please a second,… not, they didn’t tell her either”.
On the other hand, patients who were physically able had the opportunity to sign the informed consent themselves. Patient 5, for instance, mentioned signing the consent form but explicitly declined the option of being intubated. They expressed gratitude for being respected and supported in their decision by the medical staff. Patient 7 stated, “I was the one who gave my authorization to do whatever they wanted to me. Well of course if I wanted to be cured… I have small children, I think they also told my family what they did to me, but I was the one who said yes to everything”. In these cases, the patients felt empowered to make decisions about their treatment and appreciated the respect given to their choices.
Some patients reported feeling pressured by doctors to sign a consent form allowing them to be intubated, even when they initially refused the procedure. Patient 12 mentioned “Er, the doctors behaved very well except for one who was very insistent that I should sign a form to be intubated and I told him no”. Patient 13 also experienced similar pressure and felt uncomfortable with the insistence: “They kind of insisted that they wanted to intubate me. Maybe they were doing their job too, right? But I felt pretty bad about their insisting so much when I had already refused.” Both patients recognized the importance of having the freedom to make their own choices and were aware of their preferences.
These accounts show the importance of respecting patients’ autonomy and freedom of choice in the informed consent process. While some patients met pressure to consent to certain procedures, others appreciated the opportunity to actively take part in the decision-making of their treatment.
Health staff-patient relationship
Most of the patients expressed positive experiences about the care they received from doctors and nurses. Patient 1 mentioned having been treated diligently: “when I had to have a check-up, I don’t know what they did to me, I took the stretcher bearer, it looked like I was going to receive an inheritance!”. Patient 5 expressed satisfaction with the treatment and recalled a staff member using endearing language while administering medicine. Patient 2 mentioned the kind and attentive behavior of the doctors: “normally 2 or 3 doctors went, and they were very kind to us, they went and asked how we felt, and I did see how I was evolving…”. Patient 14 also highlighted the overall good treatment received from both doctors and nurses.
However, it is important to note that there were some patients who had negative experiences during their hospital stay. Patient 4 mentioned not receiving clear communication about their assigned healthcare professionals: “A doctor never came to tell me I’m your doctor […]”. They also recall “a very grumpy doctor who told [him he] had been seriously ill, that [he] was not going to leave and that [he] had to spend 20 days in the hospital”. Patient 6 shared a concerning encounter with a nurse who displayed a lack of empathy: “if you don’t allow me to do my job, I’m going to intubate you”. Another patient mentioned the importance of kindness and good manners from healthcare professionals, noting that while not everything was bad during their hospitalization, they observed a lack of kindness, wishing for “maybe just a smile or the fact of treating you with kindness, as a sick person it makes you feel good […]”. These negative experiences highlight areas where improvements can be made in terms of communication, empathy, and patient-centered care.
Illness
The patients shared their understanding of the disease, its development, and the treatment they received. Patient 2 mentioned: “[…] well, they did explain to us, they did the test and they told me that it was COVID and that this implied that it affects the lungs, that it can also affect the kidneys, the heart and this, obviously, the saturation that was very low”. Patient 6 talked about their initial misdiagnosis of pneumonia, which was later corrected to COVID-19. Others spoke of the sequelae of the disease, such as patient 4 who attests: “[…] I have been taking medication until today, right now a bit of shortness of breath and fatigue, just don’t disappear”.
Regarding the treatment, patient 9 mentioned that “some medications were good, ceftriaxone and the one that was put in the shoulder and stomach for anticoagulant. But let’s talk about pectin… what was it called? Ivermectin? something like that. Those were extraordinarily strong; All of this in the long run […] ended with my gut flora […]”. Patient 14 acknowledged being hospitalized early in the pandemic when knowledge about COVID-19 was limited. They expressed gratitude to the doctors for supplying the treatment they thought necessary and credited both the medical team and divine intervention for their recovery.
These patient experiences show varying levels of understanding of the disease, ranging from initial lack of knowledge to gaining insights during hospitalization. The patients also highlighted the impact of the disease on their health and the treatment efforts made by healthcare personnel, while also mentioning potential side effects or concerns associated with certain medications.
The role of the family in the hospitalization of patients
The participants emphasized the vital role of family support and beliefs in their recovery process. The family served as a source of motivation, encouragement, and strength for the patients. Patient 1 expressed how the thought of her father waiting for her and the knowledge that her family was worried about her gave her a sense of shelter and determination to recover, remembering her father’s words: “daughter, courage, we are waiting for you here”. The hospital eased communication between patients and their families through videos, which provided great encouragement and stimulation. Patient 6 mentioned how watching the videos made by family members, hearing their supportive messages, and feeling the presence of loved ones played a significant role in maintaining the will to live.
Even in the isolating moments of being away from their families, thoughts of them served as a source of motivation. Patient 14 described how they “looked through the windows at the hills that can be seen in the west and thought: over there is my house; my family is there, so if I don’t go out, I’m already close to them”. The patients also highlighted the importance of setting an example for their children and the impact it had on their recovery. Patient 1 mentioned staying strong and not breaking down for the sake of her daughters, while patient 5 mentioned that their family was responsible for obtaining the necessary medications and products as requested by the healthcare personnel.
Financial concerns and the burden of debts were also mentioned by patients as a source of worry for their families during their illness. Patient 12 expressed concern of how “all the debts increased, [he] hadn’t worked and now [they] owe money, right? What was spent and all, that was [his] concern”. On the other hand, beliefs, particularly faith in God, played a significant role in providing hope and strength to the patients. Patient 6 referred to their illness as a test from God and found solace in their faith. Patient 15 shared that the fear of leaving their family behind and the love they had for God were motivating factors in their recovery.
In general, the patients recognized the vital support provided by their families and the influence of their beliefs in their journey to recovery. Family encouragement, material support, and the belief in a higher power served as sources of motivation, resilience, and hope throughout their hospitalization and beyond.
