Hospital wards –the setting
Upon starting the project, a hectic ward environment was immediately noticed. Food carts, medication carts, hospital beds, wheel chairs moved quickly back and forth creating noise. Team members hurried between different rooms and patients, often avoiding eye contact with visitors, as if they had no time, or did not wish to be disturbed in their duties. All staff were hurried and busy. A curative culture was in focus, where a fast “turn over” was the goal of care. Treat patients fast and effectively and then send them back home. Physicians were the decision-makers, with the power to judge a patient’s treatment needs and period on the ward. Younger physicians were often silent at the rounds, and listened to the senior consultants, who had knowledge and experience in the field. Nurses and assistant nurses were the deliverers of important information, but were not in position to make decisions although they could influence a physician’s decision. A hierarchy was visible during coffee breaks, where nurses and assistant nurses sat together, and physicians kept to themselves. Different systems regarding rounds were used in the wards. In one ward, patients arrived in a large room to speak with the whole team, while on other wards; the team has a sitting round before going out to patients’ rooms. During rounds, all primary team members focused on a large screen to see patients’ records. The round room was messy, with different occupations coming and going, physicians’ pagers beeping, phones ringing, and whispered conversations creating background noise during round discussion.
Values, illusions and wording
Primary team members had different opinions about PCCT. Some wanted to learn more about PC, especially symptom management. Some physicians believed that only nurses and assistant nurses would handle PC, or else specialist PC units, and did not see it as their own responsibility, since they had other important tasks to carry out. Others team members claimed that they already knew how to take care of dying patients, while a few just wanted the PCCT to transfer their patients to the specialized PC unit, so they could focus on the patients that they could “really” help and cure.
Primary consultant SW 1 (F = female): This patient should be transferred to the specialised PC unit (looks at PCCT)!
PCCT, nurse X (F): But that is not our task here.
Primary consultant SW 1(F): Then, why are you here?
PCCT nurse X (F): To implement PC thinking here, in this ward.
Primary consultant SW 1(F): We are already very good at PC (sighs, disappointed). Observation from a round.
Primary team members defined PC as a short time in a patient’s life, a few hours before he/she dies. Then the patient is given pain-relief and eventually other drugs to ease symptoms. The primary team members wanted to be clear about ensuring the PCCT that they could not practice specialised PC, i.e., giving the “little extra support” to dying patients, since they did not have time to do so when their focus was on curing patients. Primary nurses and assistant nurses showed an understanding of the PC values. They claimed that the major problems were the physicians’ lack of knowledge or skills in PC, and inability to listen to them as nurses, of which, unfortunately, physicians remained unaware. Consequently, patients were not relieved of pain, no decisions about resuscitation were made, and no communication to patients and family members about the transition from curative to PC at end- of life was provided, which in turn lead to patients dying alone. Nurses expected that PCCT should give them support in their thinking about PC, especially in telling physicians how and when to decide about PC. Still, nurses missed seeing their own part in the curative culture, how they influenced the care of the dying patient.
A woman with generalised cancer, over 80, who lost her appetite. The two nurses reported that they should make a cost registration. I asked why. Then it all started! They said of course, we have to make a registration, as we do not know how much she eats. That was a good thought to make things clear, but what will they do with the results? Then the physician became irritated: we cannot starve her to death! He became fiery. In addition, I commented: but that is what her disease will do with her anyway. However, he replied we could not starve her to death, can we? Diary, PCCT, nurse X (F).
Primary team members also expected severely ill and dying patients to tell them if there were any problems, without actively asking patients. No one used tools/scales to identify symptoms, and instead used their clinical view, i.e., if patients grimaced when being touched or moved.
PCCT, nurse X (F): Have you tried to measure this patient’s symptom?
(It becomes silent. The question is unpleasant. Both the nurse and the assistant nurse wince. It becomes obvious that they have not asked the patient)
Primary nurse SW 4(F): No, but he does not have any symptoms… (The answer is hesitant and uncertain. She turns to the assistant nurse for confirmation.)
Primary assistant nurse SW 5(F): Nooo (hesitates)… he has never said anything about that.
(There is a silent agreement between the nurse and assistant nurse that this patient do not have any symptoms. The round continues.) Observation from a round.
After this round, PCCT measures this particular patient’s symptom, and he estimates his symptoms to 8–10 on a VAS-scale, pain, nausea, anxiety and so on. Following notice.
PCCT identified a values problem among all primary team members, and felt overwhelmed, especially as regards patient participation, patient autonomy, and the lack of ethical reasoning and interest in patients’ and their families’ needs. Decisions were taken without patients’ presence, and then delivered to them during rounds. The curative values were strong, diagnosing and treatments was the first priority, even when this clearly did not serve the patient. The direction of thinking was on doing as much as possible regarding medical interventions rather than reflecting on the benefits for each patient, giving each patient “a chance”. On rounds, discussions and planning focused about scrutinising each patient’s record, test results, treatments as well as which patients could be discharged.
I think they are missing a palliative philosophy and values. It is some kind of general attempt to be holistic. Interview with PCCT, consultant B (F).
Previously, there had been discussions and conflicts between primary team members whether to provide PC when a patient was dying. Patients’ status deteriorated death neared, and they became unconscious before any discussion about PC arises. Unpleasant decisions were postponed or avoided, sometimes within one hour of the patient’s death,, as the team did not have time for reflection around the patient’s whole situation and wanted to do as much as possible before “giving up”. There was a fear of being criticised by family members, team members, colleagues, and the head of clinic for making the wrong decision. Primary team members were surprised when patients became unconscious. This made planning of the last care phase incomplete, as no one spoke with the patient and his/her family, and knew nothing about preferences regarding death and dying. Instead of using the term “PC”, they had their own definition of care circumscribed as “restricted or modest care”, not as definitely as PC and easily changed if someone should complain that they did not do “enough”.
PCCT, consultant B (F): What you say now is very important; how you see, what PC is will influence your decisions.
Primary consultant IMW 10 (M = male): Well, that is the dilemma here.
PCCT, consultant B (F): This man cannot be healthy again, he is incurably ill, but you still have not reach the breaking point.
Primary consultant IMW 10 (M): No (firm).
PCCT, consultant B (F): Still you want to relieve his symptoms and improve quality of life.
Primary consultant IMW 10 (M): Yes, we use restricted, limited care, which is what it is (hesitates).
PCCT consultant B (F): Then it is obvious (annoyed).
Primary consultant IMW 10 (M): Many patients is not in the terminal stage and do not get PC.
PCCT, consultant B (F): But they ought to (determine). Observation from an intense discussion between physicians on a sitting round.
Didactic challenges and strategies
Initially, the PCCT remained cautious and observed how team members work and discuss during the rounds and when meeting with patients. They tried to establish relations by chatting during coffee breaks, and politely asking questions about routines, as well as by showing their own competence and skills. They were smooth, supple, and attentive to what was said by the primary team members.
Soon, PCCT realized that they must confront the problems and values of the unit, because patients suffered severely. They began to ask more questions of both physicians and nurses at the rounds. At the beginning, primary team members were polite, kindly answered questions, and listened to suggestions, but did not follow PCCT advice. This made PCCT change strategy. At the same time as they confronted difficult questions, they tried to understand the primary team members’ perspective. By repeating their questions “What is the goal of this treatment/test and what’s in it for the patient?”, they clearly showed that they wanted to discuss PC. Ethical issues were raised, and they continually lift patient’s needs, symptom management and family member’s needs. They also used body language, bending their upper body forward to show their interest in the round discussions, repeating, and summarising their advice at the end of each discussion. They started to use the word “we” and “we, together” and spoke of how “we can solve” certain problems, in order to further develop relationships.
The problem today was the young nurse’s values. “This patient should not even be in this kind of ward. We do not have time”. My reply to that was, yes, but the patient is here and we have to work with her symptoms and help her together. You have dying patients here, don’t you? Let’s do this together. Diary, PCCT, nurse X (F).
I gave the physician support in clearing out medications in two palliative patients. We discussed pros and cons and that felt good. Otherwise, they would not have done it at all. We really felt like a team. Diary, PCCT, consultant B (F).
PCCT thought it was important to be humble about the lack of time, and to confirm primary team members’ fears regarding PC decisions. They claimed it was necessary for many professionals to discuss together so that everyone could feel “safe” in these situations. They walked a fine line, at the same time as they confronted difficult questions; they tried to be diplomatic and flexible in their conversations.
After a couple of weeks, the discussion time for dying patients during the rounds increased. Not all primary team members appreciated this, since it was a barrier to a fast turn over, as well as it resulted in inner conflicts.
Researcher: I wonder what you thought about the round today?
Primary nurse IMW 5 (F): What I was thinking about was that I had so many other things to do as well as a meeting for care planning... It takes too much time … at the same time, there are questions that should be discussed… but at the same time, you are torn since you want to listen, but you do not have time. Interview with primary nurse after the round.
Gradually, primary physicians and nurses started actively asking PCCT for advice. This gave PCCT a feeling of success, and they became more confident and forward.
PCCT, nurse X (F): Why should we take these tests? If the tests are bad, what will we do about it?
(It becomes silent. No one seems to find an explanation.)
Primary consultant SW 8 (M), (appealing to PCCT nurse): It will not cost that much…
The primary nurse (SW9) feels that she has to save the situation and say: I do not think you get a good answer to that question (turns to PCCT), but I definitely think that we have to start thinking about it. Observation from a round.
PCCT taught primary team members a new vocabulary, with words like break point, breakpoint dialogue, terminal care, the real meaning of PC and structured symptom management as an active care since they felt they lacked basic knowledge about this. They carefully built up trust in relationships by using confirmation and compliments when primary teams performed good PC, while not wanting to step on anyone’s toes. PCCT had patience, and considered it important not to find faults or judge, as this could harm relationships.
I want to be careful that they do not feel that we observe them, or judge them... I try to be a little diplomatic. So that they do not feel like, “they are out to get me, watch what I’m doing wrong, and say what I should do better”. I do not think that it should be that way. Reflection among PCCT, consultant A (F).
At certain times, PCCT could not visit the wards. They discovered that nothing happened regarding PC when they were not there themselves, and everything went back to the way it was. This made PCCT feel disappointed and sometimes hopeless, as they saw that patients suffered, and that it was hard to influence team members’ own motivation and interest in this area. Primary team members did not have the strength to do it themselves, “they forgot it”, since it was easier to continue with the old routines.
Today was a day of hopelessness! Last week we solved many of a patient’s symptom, but now after the weekend many new symptoms appeared. In addition, no one understands why these appeared and did not manage it! Symptom management does not work by itself, I feel discouraged… Diary, PCCT, nurse X (F).
The nurses appreciated PCCT, but they felt caught between PCCT and their own physicians. Now they felt that they had to fight for their patients to get the best care, which took a lot of the nurses’ energy. They also had other things to do than these discussions, but did not always take these discussions with PCCT.
In the morning, PCCT arrives to the ward. The head nurse meets them immediately.
Head nurse SW 22 (F) (in hurry): You have to know that the nurses are not able to talk about PC issues when our physicians start to question their ideas, as the nurses do not have enough knowledge. It is different when you (PCCT) start these discussions, then the doctors listen. Observation from a ward.
Some physicians question PCCT’s right to be on their ward, the increased time for rounds, their real medical competence and their right to get involved in “their patients” tests, treatment, and diagnosis. “There is too much of the palliative stuff here. The curative values do not have enough space anymore.” Some physicians complained about having to take medical advice from a PCCT- nurse.
PCCT tries to influence the prevailing culture to get critical primary team members “on board”, and they therefore actively confront their critics. Through discussion and argumentation, but without complaining, they succeeded in getting some critics to “their side”, or at least neutralising their opinions about PCCT. In some cases, they also needed to engage the head nurse or head of clinic, in order to remind the team members that they are there to help. Sometimes, team members did not give PCCT access to their patients, as they thought they were not in need of PC. They also had to fight for some patients’ rights to die, as primary team members wanted to help patients as much as possible.
“There was a dying woman on the round whom they decided to give blood. Although they had been visiting her, and seen her, they still prescribed this. She was in the terminal phase her breathing was irregular. Therefore, I asked if they realised that she was dying, and the goal of the treatment. The goal was “to make her a little more alert”. I talked about the dying process, the thinking around it, and her needs right now! Diary, PCCT, nurse X (F).
The palliative illusion becomes a fusion
One year after the intervention, primary team members in the acute wards felt that the new PC skills had come to stay, and were partly integrated. They realised that their dying patients did not receive as good PC as they previously believed. Formerly, they were living in an illusion, and believed that they provided good PC so long as the patient got opiates in the last hour of life. This was a kind of self-delusion necessary to survive in the fast acute care culture.
One of the nurses told me that she felt ashamed yesterday, when I came out from a patient room and showed her how much pain the patient really had and she was not even aware of it. I tried to give her support and told her how many patients she had. I told her that this was my job, to be a support regarding symptom management. Diary, PCCT, nurse X (F).
Primary team members appreciated the competence provided by the PCCT, and thought that they had learned a lot about symptom control, break point dialogues, and planning end-of-life care for patients and families. They felt they had better and more useful tools and vocabulary, and now realized they needed even more knowledge.
It is so good that PCCT are here. They remind you. Otherwise, I think we forget it. Every patient should leave our ward “healthy” (laughing). Interview with primary nurse SW33 (F).
Most primary team members were satisfied with the intervention, and the quality of PC among their patients had increased, but they did not believe that it was possible to handle the PC issues by themselves. They felt that they still needed support, as they did not have the knowledge, energy or interest themselves. Some nurses described ethical distress after the intervention, as they knew that patients suffered if they were not more active themselves. The planning for both patients and families was difficult, as they could not be certain that the patient really was dying.
It is important to get another set of eyes, with another specialist competence than one’s own. There are so many other things here, so you have to think a bit longer. No one has a total picture of the patient, and sometimes we do things that are not of help. Interview with primary nurse SW27 (F).
Assistant nurses felt that the intervention had focused only on physicians and nurses, and wanted more knowledge to provide better care, but confirmed that patients and family members got enhanced care. Physicians valued the bedside education and the thinking and reasoning behind each decision as well as tools to manage a break point dialogue. They felt strengthened in communication, PC reasoning and symptom management.
Before the round, the primary consultant IMW2 tell the others (PCCT consultant, one primary nurse, and two junior physicians) about a break point dialogue with a critical husband. “He looked at me, said: is it cancer? I confirmed that it was cancer in her abdomen. He started to tremble, what are we going to do? I said that we absolutely would treat her pain. He understood that she was deteriorating”.
PCCT, consultant A (F): What did he say about not having any treatment?
Primary consultant IMW2 (M): He understood.
PCCT, consultant A (F): How did you feel? Are you still a good doctor?
Primary consultant IMW2 (M): Well, yes. She (the patient) will not have a good life with treatment (chemotherapy). It feels okay. We cannot examine and treat her just because we should have good statistics. Observation from a round, discussion between consultants.
Head of ward, nurse IMW 27(F): Doctor G (consultant) noticed a big (positive) difference when we started to use ESAS (symptom score). However, the staff were so upset when they realised how many symptoms they missed, that patients felt very ill without them noticing it. Observation from a meeting between PCCT, management of the clinic and the ward.