Final-year undergraduate nursing and medical students’ knowledge,perception,orientation and perceived self-efficacy to provide palliative and end-of-life care: Qualitative findings from a parallel mixed-methods study

Sub theme 1: Students’ conceptualization of palliative, end-of-life, and hospice care

Participants demonstrated diverse views and cognition of the reality of the three terminologies. A few reasoned palliative care as a broad concept within which end-of-life and hospice care are sandwiched. Some, for example, those from school B had not heard of or had no prior knowledge about end-of-life care, which suggests some local biases exist in the curriculum:

Palliative care starts at the time of diagnosis regardless of whether the illness is going to get cured or is at end-of-life, while for end-of-life care, we have come to a conclusion that this person is not going to survive the illness. MS, MP1, FGD 8

I’m not so sure, I need to remind myself about hospice, but palliative care and hospice care are different. One is a subset of the other. Palliative care is a bigger version, and it is started at the time of diagnosis, at the breaking of the news of the disease. End-of-life care is that care that is given when you notice that you can no longer do anything to bring back this patient. End-of-life care should come in close to the demise of the patient. Before then, palliative care should have been instituted. It will be too late if the patient is dying and we say now, palliative care. . .. MS, MP2, FGD 7

Whilst very few participants described the terms palliative and end-of-life care in terms of duration before death, some hesitated to attach a duration to it, saying that duration is unpredictable. Participants showed varied understanding and views, with many arguing that palliative care has no role in acute illness and others arguing it has:

I don’t think I would attach a duration to end-of-life care. End-of-life care in itself would mean preparing someone who knows that they are going to die to come to peace with it. It might be in five months, a year. . .. MS, MP1, FGD 10

Palliative care has no role in acute illness. Some of these acute illnesses may bring certain fears, anxiety in a patient but still I think that should be addressed by the doctor explaining to the patient, addressing all their questions but not starting them on palliation. MS, FP2, FGD 10

Further probing of the participants was done to identify their understanding and views, specifically as to whether palliative care has a role in the management of early-stage cancer that has a likelihood of cure. Very few students reasoned that palliative care has a role in early-stage curable or treatable cancer:

I think palliative care is for anyone who you may really suspect they have a lifelong illness. If someone has stage 1 cancer, they can get palliative care as well, because even in stage 1, you still have cancer and it’s still deadly or a life-threatening disease. Giving these patients palliative care could also add to the process of healing [two agree]. BSN, FP2, FGD 5

I don’t think a person who has stage 1 cancer qualifies to get palliative care, because, in stage 1, early-stage cancer, surgery can be done on the patient or the patient can be managed on and the patient becomes okay. It [palliative care) is for patients who are in the last stages of their illness. ECN, FP9, FGD 9

Some narrated that even in early-stage curable cancer, aggressive treatment such as chemotherapy and surgery may result in adverse events that require palliative care. Few, especially medical students, demonstrated a better awareness and understanding of the multidimensional suffering (total pain) associated with cancer, regardless of stage, and reasoned palliative care could improve the quality of life of those patients:

Surgeries come with their consequences. A person who has got a road traffic accident and are in pain needs Palliative Care. BSN, MP7, FGD 5

Holistically, what is attached around cancer; anxiety, spiritual concerns. . ., the holistic approach to care would help this patient even if biologically they are more likely to be healed. Even the biomedical aspect, we are not 100% certain that they will be healed, because diseases especially cancer have no fully predictable trend and prognosis. So, I think the patient would need palliative care. MS, MP1, FGD 7

Regarding ‘when’, few participants in each of the groups interviewed responded that palliative care is applicable and starts from the time of diagnosis through the illness continuum:

. . .Immediately, as soon as the person is diagnosed. ECN, FP2, FGD 1

It is an approach that improves the quality of life of a patient and their family members, and it is given to terminally ill patients, especially patients with chronic diseases like cancer and it is supposed to start immediately when the patient is diagnosed with cancer, not to start it when the patient is already bedridden. BSN, FP4, FGD 4

Many reasoned that it is only appropriate in advanced stages of the disease; at the end-of-life, and further explained that by the time palliative care is initiated, death is inevitable:

Palliative care is for only dying patients. ECN, FP6, FGD 1

Palliative care is care given to people diagnosed with end stage or chronic diseases; and mainly manage pain and other symptoms. MS, FP8, FGD 7

The theme “when other treatments have failed” was common as some narrated that is the time when palliative care should begin. They saw palliative care as a safety net:

Palliative care is given to people who have reached advanced stage of cancer or HIV or those who have gone to severe pain and have suffered for a long period of time with a chronic condition . . . Palliative care is given when all other attempts have failed [all agree]. ECN, MP4, FGD 2

Subtheme 2: Palliative care as a holistic, patient-centred concept

Very few demonstrated awareness of key principles of palliative care service provision. Notably, their knowledge of the principles varied widely. Medical students demonstrated a better understanding of ‘total/holistic care’ concept followed by bachelors nursing students, then certificate nursing and final diploma nursing participants:

Palliative care does not only treat physical problems but also looks at the patient in totality; the physical, psychological, spiritual, social aspects. BSN, FP1, FGD 4

I liked the fact that the family is always involved. The patient is able to share their feelings and fears, they have someone to listen to them, not being left alone and they become an accidental death and die with dignity. In our usual medical practice, we just focus on the disease, but in palliative care, we focus on the patient and family. BSN, FP2, FGD 4

Only very few certificate-level nursing participants demonstrated an awareness that palliative care extends into the bereavement period:

We saw that in palliative care, immediately someone is diagnosed with a chronic illness, palliative care is started, then you go beyond, even when that person rests [dies] you continue to comfort the family members. ECN, FP4, FGD 1

After the terminally patient has passed on, the care continues to their families in order to help them cope with the loss. ECN, MP6, FGD 9

Individualizing care and respect for patients’ autonomy, values and beliefs, for example, use of traditional and complementary medicine, and healthcare workers’ ethical duty to respect patients’ choices and beliefs were mentioned by a few of the medical students who further explained that respect for patient’s autonomy is key in avoiding or solving some clinical dilemmas, for example, patients requests for aggressive/futile and very expensive treatment/medicines, for example, at the end-of-life:

Palliative care brings about cooperation in caring for the patient; they [patient’s family] are brought on board so that they know what is taking place. In case of any financial, spiritual, social needs. . .If you involve them [patient’s family], you’re building the confidence within them, to comfort them to relieve anxiety, stress, giving them psychological treatment. ECN, FP8, FGD 3

First of all, patient’s autonomy is key; they have a right to accept or refuse it [medical advice], but before you let them refuse or accept what you are telling them, it is about you to give them all the available information; the benefits, the risks. . .. So that if they say they want to continue even after you’ve told them everything, you let them continue. MS, MP2, FGD 7

Spirituality and spiritual care as well as multidisciplinary team approach aspects were mentioned by very few certificate and bachelor’s degree nursing students as being key concepts of holistic palliative care, who demonstrated limited understanding of the timing for initiation of spiritual care, for example, some narrated that spiritual care is given only at the end-of-life. They then discussed the ‘where’ aspect in palliative care delivery and almost all cited hospice, hospital, homes, etc., as places where palliative care can be provided:

If you know that the patient is going to die, that is when you start spiritual care so that the patient will be having that hope of life according to how the scripture tells us. . … ECN, FP3, FGD 3

. . .in hospitals, from their homes, day care; for example, I heard from a patient who was from daycare in Mbarara [Mobile Hospice Mbarara]. ECN, MP5, FGD 2

Subtheme 3: Pain as what the patient says it is – subjective experience, treated by algorithm

Participants discussed the concept of pain in relation to their understanding of what pain is, its assessment, classification and management. All had some basic understanding of what pain is. Medical students demonstrated a better understanding of pain concepts than nursing students. Some referenced their own pain experiences to relate how bad pain is:

We defined pain as unpleasant sensory and motor feeling which can be due to tissue damage. . .. BSN, FP3, FGD 4

Pain is what the patient says it hurts. MS, MP6, FGD 7

Pain is pain. I’ve had severe pain, intolerable pain. It was not a good experience. MS, MP6, FGD 10

They then discussed physical pain assessment, covering aspects of history taking, use of pain measurements like visual analogue scales, numerical rating scales, smiley faces, jerrycan, etc., and pain classification citing nociceptive and neuropathic pain. However, very few participants were willing and able to correctly demonstrate how to apply some of these measurements. To almost all, pain measurement was a concept but not a practice reality. Nursing students, especially if they were certificate level, demonstrated possession of the least theoretical knowledge of pain assessment:

We have tools which we use, e.g. facial expression, finger scoring [demonstrates correctly how to rate pain on the fingers]. We can use jerrycan tools. . .. ECN, FP3, FGD 3

We use a rating scale of 1-10 where a patient tells you how he relates his pain out of 10; may be 10 for severe and 1,2,3,4 for mild pain. We also use the PQRST where we see the precipitating factors or what relieves it, the quality, radiation, then severity. . … BSN, FP1, FGD 4

Some of the nursing and medical students across all levels demonstrated an awareness of ‘total pain’ and emphasized the need to undertake a holistic assessment of the patient:

Their pain is not only physical, it is also emotional and psychological. These people’s life is tending towards the end; they no longer perform their daily activities as they are supposed to. That kind of emotional pain can even be much worse than the physical pain. MS, MP1, FGD 10

Subtheme 1: Lecture room experiences

They critiqued different elements of the palliative care course unit, including course design, duration, content, and its impact on their understanding and view of palliative care. Their critique and experiences emerged in three themes: theoretical experiences, field/clinical experiences, including the benefits and challenges (dilemmas) they encounter in translating the theory into practice, and finally their training needs. Some narrated how they feel that even the theory they received was thin and inadequate, and the training did not prepare them adequately to provide palliative care. Very few stated otherwise:

We studied it [palliative care course] for a whole semester, and we did one exam, it was theory. We did not do a practical. . . ‘When they are teaching us, someone passes on the surface bit, they will not go into the details about how you are going to handle this patient’s condition. ECN, FP3, FGD 3

I was disappointed that we did not get a chance to get the clinical exposure. MS, FP2, FGD 8

Sub theme 2: Hands-on/field/clinical experiences

They then discussed their experiences in the clinical setting, particularly their level of interaction with palliative care patients, and with qualified colleagues, seniors. Notably, all the participants in the study reported limited-to-no exposure and interactions with patients with life-threatening or life-limiting illnesses, including those whose schools are within or near cancer treatment centers or hospices. They reported this created a dilemma in how to translate what they learnt in theory into practice:

I have managed cancer patients at the village level’ [Only one has interacted with terminally ill patients]. ECN, MP7, FGD 2

We learnt palliative care once a week for one semester and we had a few days on the cancer, oncology ward to be taught what we learnt in the lectures. Every group went about three times. That time was good. Actually, we studied a lot, but we didn’t get time to practice all of it. The three times on ward of just one hour each day may not really be enough. MS, MP1, FGD 10

Sub theme 3: Benefits from the palliative care course module

All the participants mentioned they experienced some gains from the course, mainly improved knowledge of the reality of the need for palliative care. Very few shared about the very limited situations where they had to apply the theory they learnt:

Before the course, I thought that these people die in a lot of pain, always miserable, they are neglected, but when I was in the class of palliative care, I saw that there’s some hope for them, quality of life, they don’t die so miserably in that hard pain which is so unbearable pain. . .. ECN, FP6, FGD 9

During that time in class, I realised that palliative care is something we need a lot. But when I was practicing in the holiday, there is this lady who had oesophageal cancer, I think it was in stage 4, and whenever we would do ward rounds, we would move from one patient to another and whenever we would reach her bed, people would say, ah, that one is on palliation, there is nothing to do. We would skip her. Then I was wondering, based on what we studied in class, what is palliative care? Then I asked, now for this patient we also need to give morphine? Then the doctor asked me, has she told you that she’s in pain? I don’t know if she was really assessed, whether at that time surgery wasn’t necessary? Then also, she looked a bit disturbed by being skipped on every ward round. She was on ward for six months. I was really disturbed. . .Coz, based on the palliative care we studied in class and then the palliative care we have in practice or on ward, I think we have different palliative care. MS, MP 4, FGD 10

Most participants referenced pain as one of the topics they understood and liked most. Particularly, they mentioned that from the course, they became aware of the subjective nature of pain and pain being inadequately or poorly managed in clinical settings:

I liked pain management, I appreciated that most, we were in surgery rotation and there was this child who had fallen down the stairs and everyone cared about the cerebral. . . pathophysiology, what’s going to happen next, and then the surgeon was like, but have you managed the patient’s pain? Why are we caring about this thing when she’s in pain? At least now, we have appreciated that pain is very subjective. . .. MS, MP1, FGD 8

Participants, especially medical students, further quoted that the course addressed other crucial, exciting topics they never knew before, for example, handling bad news and how to deliver it, managing other symptoms, and knowledge of which they found relevant and applicable in all fields of medicine:

I don’t remember disliking any particular topic. I think palliative care generally as course is a good one. The ones I liked most; we learnt about breaking bad news and the four stages of grief. I enjoyed learning about that psychology. MS, FP6, FGD 8

We studied some of the symptoms that people with conditions that affect various systems present with and how we can manage those symptoms. That was a good thing coz some of these life-limiting illnesses and the symptoms they bring are based on the systems they are affecting. It equipped us with some good knowledge on how to handle these symptoms e.g. in cardiovascular. . .. Then also, we learnt about pain management; the pain ladder. That was something good. I enjoyed it. Yes, we had done communication in communication skills but revisiting it in palliative care was nice, actually I was very happy coz palliation is all about communication, that is how you can be able to understand someone’s pain. . ., social, faith. MS, MP1, FGD 10

Subtheme 4: Students’ training needs

Students discussed their training needs and what they feel needs to be done to improve palliative care education. They critiqued the nature of instruction or delivery of the palliative care course, which they said is merely theoretical. Further, they mentioned that many facilities lack palliative care and requested that it would be good if they were rotated through settings, centers or wards that deal with patients with palliative care needs so that they are able to apply the theoretical knowledge they have learnt:

Can we bring palliative care into these systems? I think the curriculum needs to be revised, because, like he [his colleague] has said, we were on that ward for three days, once in a week for three weeks. And in those three days, I don’t know about others, but for us we were just standing in a certain corner. We didn’t see patients, talk to them or what, we were just there for courtesy. The course looked more like a formality than giving us chance to do something. MS, MP3, FGD 10

The little palliation that we have learnt theoretically we can’t actually apply it because, when we meet those patients with life-threatening conditions on ward, from the way the doctors treat them, they say that one we are discharging through hospice. MS, MP1, FGD 10

Sub theme 1: Influences on practice: Paternalistic cultures-seniors’ views and behaviours, prohibitive laws

Participants gave multiple examples of when seniors of their own profession or another impact the ways in which care is offered and delivered. There is no challenge to this because it is not their place to do so. Things are done not on an evidence-base but rather because “they”, the seniors or doctors, do or say so. In this respect, there is a norm that palliative care is not for doctors, that pain relief is dangerous and addictive, and as a result, we believe we can do nothing, so therefore we do nothing. The influence on the students was such that in some cases it coloured their view of palliative care entirely, while others recognised the tension and sought to cognitise it or to blame the seniors:

Morphine, they [doctors/seniors] say that it is for elderly people not children, that it is addictive. They don’t give it and they always tell us not to give it because they are fearing those patients to get addicted. That these strong opioids are given to the dying patients, those at end-of-life. BSN, FP5, FGD 2

Palliative care is still foreign. I experienced it in my last placement, we had two patients; the doctor recommended they were supposed to be on palliative care, but nurses were not even bothered. They could read the files but do nothing. The nurses who are supposed to help the patients get that special care are not caring; they neglect palliative care. ECN, MP1, FGD 3

There is still a bias towards palliative care. Knowing that palliative care is for hospice and people who have specialized in that part, not for doctors themselves to have the skills to provide the service to patients. We want to cure diseases and move on with life. BSN, MP5, FGD 10

Power imbalance, mostly nurses feel they are not given the opportunity to practice palliative care, in particular, making decisions was a striking theme. They (nurses) questioned and decried the unfairness in the law and professional codes of conduct, as these give decision-making powers to the doctors only:

The negative side I saw, strong opioids are used which are not recommended to be prescribed by a nurse. Yet, when the doctor prescribes, the nurse gives and any negative outcomes that arise it is the nurse to be attacked first. ECN, FP2, FGD 1

Most of the laws do not allow health workers at our level to give drugs commonly used in palliative care. You assess, you do everything, but you will not be in a position to give the drug which is not prescribed by the doctor. ECN, FP3, FGD 2

Sub theme 1: Palliative care as how the students feel about and perceive it

Many participants did not think palliative care is for them, because the emotional impact is too great. This fear of the emotional effort has an effect on the ways in which they view palliative care, pain management and end-of-life care. Most notably, they referenced that they are not ready and/or not willing to take a career in palliative care and witness and manage the multiple overwhelming emotions from patients. Their perception of and orientation towards palliative and end-of-life seemed to be influenced by multiple factors, summarised in Figure 3.

OPEN IN VIEWER

Figure 3.

Promoters and restrainers diagram.

There was a recurrent theme of a gross lack of preparedness and unwillingness to provide palliative care that affected the majority of the participants. Medical students showed more negative attitudes and less willingness; however, nursing students demonstrated lower perceived self-efficacy to provide palliative care than medical students:

Unfortunately, I cannot manage seeing those people suffering, emotionally I cannot manage it. . . ‘I see it as a difficult specialty. So, me to join that specialty, no, I cannot. ECN, FP2, FGD 1

That thing [palliative care] is irritating. One time I dealt with one lady [patient with diabetic wound], I hated it [palliative care] in my life. I was almost leaving this nursing course. The thing is bad. It [patient’s wound] was kinda fuming. There are conditions in palliative care that are such bad to handle. You can even reach a time when you dislike them [patients]. ECN, MP2, FGD 3

I find that medicine itself, being a primary physician is already emotionally draining and I think calliative care even requires more than emotional commitment. MS, FP5, FGD 8

I don’t find it [working with dying patients] easy, but am confident because I am someone who can look at a condition and a person and I feel what someone is going through. BSN, FP2, FGD 5

Very few participants narrated how the course shaped their view and understanding of palliative care and its importance, especially relief of suffering and promotion of comfort. As a result, they are now more willing to deliver it, with some mentioning that they would be willing to make a career in palliative care in the future:

I feel I should specialise in palliative care. Those patients are like us. Even at one point, no one knows, I can also be a victim at one point. I don’t see any reason why I can’t help those people. They are like me.. . .. ECN, FP 2, FGD 1

My view of palliative care is that it is very pertinent in our healthcare system. It’s not been well absorbed, imbibed throughout our country but one thing I learnt from doctor [. . .] who was teaching us, it improves at least the quality of life and it also promotes the dignity of the patient towards their end-of-life. MS, MP3, FGD 8

I liked palliative coz, before, I thought palliative care is all about someone going to die. We had a neighbour; he had liver cancer. Hospice started caring for him and people kept saying he is going to die but he lived longer. I am so passionate about medicine and I love to meet people with terminal illness. So, when I saw palliative care, I don’t think I disliked any topic. Yes, breaking bad news is there, but I’ll see when I get to practice. MS, MP1, FGD 10

There was a striking theme where students’ dislike and fear of building a career in palliative care was perpetuated by the perceived lack of the government’s recognition and support for palliative care. Again, this was punctuated with some elements of misinformation and perhaps inadequate teaching:

I heard that palliative care has just been brought into the system. But we don’t see like the government people concentrating and supporting it, e.g. like a day to celebrate it. You may find they don’t even budget for it. . . It worries me, coz if at all the government is not supporting it, is not promoting it, now what about us nurses? Because, for us we depend on the government. ECN, MP1, FGD 2

They then suggested remedies for some of the gaps they see in the health care system. Particularly, they referenced gaps in pain assessment and management by health workers and the need for all health workers to have knowledge of pain management:

Palliative care is important and I am glad that we learnt about it, and I feel it should be included in curriculum for health workers. . .. No patient should be left to live in pain. MS, MP3, FGD 8

I wish that palliative care would be put into every single chronic illness, DM, HIV, that whole good system that HIV has. . .. MS, MP1, FGD 8

Sub theme 2: Students’ perceptions and attitudes towards death and dying

In addition to delivering bad news, discussing death and dying was the second most common challenge and topic disliked by most participants. They referenced how, based on cultural connotations, discussions about death are taboo, how they’re not comfortable and ready to discuss death and dying with patients, and how caring for the dying causes them psychological and emotional disturbances:

It is emotionally discouraging because even when you care for these patients you already know that they are going to die. . .. It becomes emotionally disturbing, and you feel discouraged. ECN, MP1, FGD 1

You have people with you, but within you, death is near, you know that any time soon, you are actually going down the grave, and you don’t know where you’re going. . . ‘I got anxiety studying about death and dying and as a young girl, I don’t know, sometimes I find death abnormal. ECN, FP1, FGD 9

However, few showed a positive attitude towards death and dying, with only two mentioning how they like end-of-life discussions. They had an understanding and cognition of the reality of death and finality of life and the need for health workers to accept this reality and provide better end-of-life care for patients and their caregivers:

. . .end-of -life, all of us understand that we believe that health workers we care but God heals. It’s our responsibility to explain to the patient so that he or she can understand that for every care we will give, there is a possibility of death. We can prepare the patient until he dies; find out the plans of the patient and see how you can help the patient and also the family. ECN, FP2, FGD 1

I would not like to be a palliative care specialist. He [the lecturer] talked about his work, how you really you put in a lot and it does not stop at the point of death, you go into the bereavement stage and beyond to see that the family is coping and they’re comfortable and can now move forward, and putting in all that for very many patients, I don’t think I can be able to do that. MS, FP6, FGD 8

Sub theme 3: Palliative care as a specialty/profession that is not profitable, not worthy of medical effort

Some mentioned that they’re not ready to work with patients with life-limiting and life-threatening illnesses because the main purpose they came to nursing or medical school is to treat and cure people and make money. Interestingly, on the other hand, they, especially medical students, recognised that they will inevitably be faced with situations that will require them to provide some form of palliative care in practice and appreciated those who have taken a career in palliative care.

We are training to offer a service that can cure people from their illnesses. But for the case of palliative care, we are sure that the disease is going to progress until the person’s life ends. When you treat and the person is not improving, you feel discouraged and as if you have failed. It is better when you treat someone who came critically ill, after two days you see them laughing, you feel motivated. But today you treat this person, within two, three days the person dies. You treat another person, one month, three months, the person dies. Mentally, as a health worker, you get disturbed. BSN, MP5, FGD 1

I don’t see myself going into palliative care. Most of us came into medical school to help people, to relieve patients of their suffering. Making money is there, but we also want to see that patients are improving. But in Palliative Care, you are dealing with people who are really not going to improve. . .. MS, MP11, FGD 7

I don’t see myself working in palliative care. I don’t think I am called to do that, and I don’t think I’ll be strong enough to do that, but the ones that do it, the ones who are called like you, thank you very much coz it’s necessary. MS, FP 6, FGD 8