1. Time management.

One of the most prominent themes emerging from the interviews as a strategy and barrier, was time management. HCPs considered more time for their consultations as a necessity to resolve all existing communication barriers. In general, consultations of around 30 minutes were considered appropriate by HCPs, instead of the 10 minutes that are currently standard practice in hospitals. Despite HCPs’ ability to, for instance, book double-time consultations as a strategy, or manually expand visiting times in their schedule, some also mentioned experiencing a tension between adding time and the organizational and financial constraints of hospital management (Quote 2).

Quote 2. Physician pain and palliative medicine.

Respondent: … Look, as an example, on my outpatient clinic consultations, every twenty minutes, I see another patient. If I see a patient with high health literacy, who, prior to our consultation, has read everything on Google, and we agree on treatment and are able to engage in good SDM, then a consultation will take up ten minutes. However, if I have a patient who does not prepare for the consultation and does not understand the information, and brought three significant others with him who don’t understand the information either, in that situation, twenty minutes is too short. The system won’t allow me to say, “well guys, let’s pull the emergency brake, stop my train and start working with these people”. I could offer these people an additional appointment in two weeks, in which we have more time for more explanation. However, if I do this too often, if I do this with more than ten percent of my patients—scheduling additional appointments, this will displease my director. He will tell me, “you do not reach the potential of your production”. So, there is a field of tension in this situation…

Limited time results in practical or organizational barriers in communication. Related to patients with LHL, and according to the HCPs, explaining medical information takes up more time, and therefore forces them to select the information they perceive as relevant. Because of limited time, a thorough execution of the teach-back method is not considered realistic with LHL-patients. Furthermore, limited time withholds HCPs to engage in in-depth interactions with their patients, causing a more substantive barrier in communication. According to HCPs, effective communication and SDM is only achievable if there is a level of understanding or ‘bond’ with the patient and their significant others. Also, HCPs stated that bonding takes time and, in most cases, multiple encounters are required. According to HCPs, limited time causes inabilities to assess or talk about health literacy and about the psychological, social and/or spiritual/existential aspects of care. It also withholds them from profoundly assessing and discussing palliative care related to the quality-of-life preferences most important for patients. Limited time also causes barriers in executing SDM. If time is limited, SDM around difficult and life-changing decisions is not always feasible. According to one HCP, an example of this is when the start of treatment cannot be delayed. For instance, in small cell lung carcinoma, delaying treatment could negatively alter survival rates.

Additional time provides HCPs with the opportunity to provide information. It would allow them to inform the patient about their disease and to effectively engage him or her in SDM. Additional time also offers HCPs the opportunity of forming a relationship (bonding) with the patient. HCPs suggest that time allows for important informal conversations, for instance, to engage in small talk and to get to know the person behind the patient. According to HCPs, this allows for longer and more elaborate conversations about quality of life, and in general, facilitates the possibility of finding a moment of serenity and see patients holistically (Quote 3).

Quote 3. Specialized nurse in oncology.

Interviewer: … And what would help to make that [‘that’ means room for bonding] clear to patients?

Respondent: Clarity and honesty, I think, from the very beginning. And for the caregiver, I think that if you can, you must give yourself time and peace of mind to see the patient as a whole. Use something like a time-out, which in the Netherlands of course happens during a lot of different treatment processes. If you provide information to a patient, you schedule a time-out and offer patients time for reflection, in order for the patient to come up with questions, or have discussions with their significant others, so that you only make the decision in a second conversation with the patient, after the time-out.

Furthermore, some HCPs suggest lengthening the SDM-process. According to some HCPs, the process should start at the beginning of the care trajectory, and not just when patients have to decide. Preferably, patients should be allowed plenty of time and space to make decisions, for instance, by scheduling a separate consultation for discussing options or confirming decisions.

2. HCPs’ communication skills.

HCPs recognized limited literacy as a concept. And although they had never heard of limited health literacy, they did describe communication strategies that helped them to recognize LHL. HCPs closely observe and assess the appearance, non-verbal communication and language of patients and significant others. HCPs suspect LHL when patients enter the consulting room seemingly unmotivated and uninterested, look at handed-out leaflets or medical forms with a dazed look or dress sloppily, having an unkept appearance. Furthermore, an overly simplified description of their medication, the choice of words when asking and responding to questions, the capacity and coherence of questions asked by the patients and the quality of the responses by patients on teach-back questions are seen as indications of LHL. However, despite these indications, some HCPs do encounter patients who are capable to conceal their limited skills and pretend to understand information. As a more direct approach, some HCPs reported to ask for the occupation of the patient. HCPs are reluctant to ask for the level of education, since patients don’t automatically understand the legitimacy for this question (Quote 4).

Quote 4. Oncologist.

Interviewer: And during conversations with patients, how do you recognize LHL?

Respondent: I always try to let patients explain in their own words what [disease] they have, what they already know and what they have heard so far. Then you have at least some insight into the words someone uses and what information someone has received. For instance, the questions I ask when someone is forwarded by the surgeon, "What is it that the surgeon already discussed with you?”, “What was the main reason for coming here?”, “Is it clear to you what the purpose of this conversation is?” This is a point at which some patients already lose their head. Then I start by explaining who I am, what an oncologist does and what they can expect from me during the conversation. I’m not going to start with, “gosh, what is your level of education?” That doesn’t have to be related to health literacy at all.

Lastly, HCPs base their assessment on the medical and lifestyle-adherence of patients and, after consoling with a colleague, on the opinion of other HCPs.

As a strategy using tools and aides, HCPs reported to use materials for patients to take home (e.g., handing out leaflets or writing checklists for patients) and materials that support their explanations (e.g., using or drawing pictures, videos and anatomical models) or use the internet to search for information regarding the living environment of the patient (Quote 5).

Quote 5. Specialized nurse palliative care.

Interviewer: So, by ‘playfully’, you mean that you loosely sense it during the conversation?

Respondent: Yes. That’s right. Often, my start of the conversation, when I know I’m seeing people, I obviously look at what they have [their disease], but also, look at where people live. If I know their address from our system, then I visit Google Maps and look up their address. Using Street View, I observe their general environment, their street, their garden, is there a park nearby, is there a lake nearby? … I really use that [during conversation]. For instance, if people say, “gosh, I really like walking”, then I say, “then you probably will visit the lake that lies there and there”. Then they feel understood and they don’t feel like a number or a patient anymore. Instead, they think, “hey, this guy knows what my surroundings look like” … I always try to ‘level’ with the patient. In my experience, it is an entrance to […] reaching a very nice level, where people can talk to you easily.

HCPs indicated that they only use visual tools after recognizing LHL. Furthermore, some of the HCPs reported to use the teach-back methodology as a tool to check if patients understand the information, however, they do experience that some patients feel ‘tested’ or ‘dumb’ when asked this question. Therefore, HCPs indicated to be reluctant to engage in teach-back. According to the HCPs, a solution for this is to summarize the information and ask the patient for a confirmation. Some HCPs also use the patients’ significant others as aides to confirm the information the patient is telling and ask them to help the patient with understanding the information and making decisions. They argue that if a significant other understands the information and options, they can help the patient at home. However, not every HCP is pleased with the presence of significant others. A few HCPs reported that families can become dominant, making it difficult for them to elicit the actual preferences of the patient. Furthermore, HCPs indicated to use other professionals as aides, to use interpreters during consultations, or their own secretaries providing additional information to LHL-patients over the phone. Fellow HCPs are used for exchanging experiences in communication or for referring patients. In addition, HCPs use their own computer systems as a tool, discussing topics using ‘smart phrases’ in order to add structure to their consultations. After the consultation, and if HCPs identify LHL or potential misunderstandings, they schedule a call-back, an additional appointment, or reschedule their subsequent appointment to the end of the day.

Important barriers in communication are the limited communication skills of HCPs themselves, and their inability to adjust to LHL-patients. For instance, HCPs find it hard to make complicated medication-information understandable to patients, information they need to participate in decision-making. Although HCPs actively try not to use medical jargon and complicated words, they still feel that they are unable to solve the imbalance that exists between their own knowledge and the knowledge of the patient. Furthermore, some HCPs reported they (or their colleagues) can have a unilateral outlook on treatment, meaning that HCPs have a strong tendency towards treating patients. As a consequence, treatment-options are framed—e.g., barely mentioning the option of withholding treatment or waiting. According to these HCPs, this could create unrealistic expectations and a sense of unnecessary urgency for patients having to undergo treatment. In addition to a unilateral outlook on treatment, some HCPs reported to have a unilateral outlook on healthcare in general, and only discuss the physical aspect of care with the patient. According to these HCPs (Quote 6), they sometimes hide behind medical technicalities, inhalers and pills to avoid a ‘real talk’.

Quote 6. Pulmonologist.

Interviewer: To what extent are these different aspects covered during conversations with patients?

Respondent: Very few. Much too little. Yes.

Interviewer: Oh, very few. Meaning all aspects, except the physical?

Respondent: Yes, we do talk about the technical aspects, the puffs and the pills and the oxygen levels and the physical therapist, and maybe even the lung function numbers or blood results. But just the question, “what do you actually expect from me”, or, “what do you think about how things will go in the coming year”, or, “will you still be here in a year”, or “do you expect to be there in a year”? … The eight-minute consultations we now have—my consultations last eight minutes on average—are not suitable for this. … The moment you ask such a question, you already know that it will take a while. However, you should actually do that. In fact, you should say [to the patient], “I think your condition is deteriorating, you notice this as well, we should think about the near future”. Sometimes you do that [ask such a question], and sometimes it works. Occasionally, on their own initiative, a patient comes up with questions like this, but there aren’t many people who are wondering, “how am I actually doing?” One of the problems is that the patient does not come to the consultation prepared at all.

In addition, some HCPs indicated that they don’t talk about spiritual matters or existential questions, because they lack the know-how or the life-experience, or they don’t believe that it is their role to talk about these subjects with patients. In contrast, some HCPs point out that talking about spiritual care or existential questions is an important part of being an HCP in palliative care (Quote 7).

Quote 7. Specialized nurse palliative care.

Respondent: ‘Philosophy of life’ and ‘cultural background’ are now placed all the way down at the bottom [the interviewer had asked the respondent to sort out cards with palliative care topics]. However, with this [placing these cards last], I’m not saying that it isn’t our job to talk about these subjects, because I think it actually is. It is our job. Although we sometimes, but not enough, raise these subjects in conversation, I also think it is our task, but this applies to all of the care providers involved. So, not only for a doctor, but also for a nurse, and a social worker, and a dietician.

Furthermore, some HCPs indicated that discussing the more profound aspects of care (e.g., talking about spiritual care or existential questions) is easier with patients with a low level of education, because they dare to be more vulnerable and ‘open-up’ more easily (Quote 8).

Quote 8. Internist and consultant palliative care.

Interviewer: … And is bringing up aspects of care by yourself [physical, psychological, social and existential/spiritual] the same when people have a low level of education? Is that the same?

Respondent: Yes, that’s the same thing. Then it might be even easier.

Interviewer: Okay. Why?

Respondent: Because they [low educated people] often talk easier. That obviously doesn’t apply to everyone. However, I do think that people with a higher education keep more to themselves. And with lower educated people it is easier to talk, “gosh, what makes it all worth to you?” “What do you do all day?” Yes, that is easier.

More collaboration between HCPs in the hospital and other disciplines involved in health care was mentioned as a suggestion for better communication, especially around the organization of care. According to HCPs, all information must be accessible for patients and their significant others, between HCPs in the hospital and other disciplines (e.g., primary care). HCPs suggested that improving collaboration with general practitioners (GP) could improve communication, since, in the Netherlands, the GP is the first point of contact for many patients, and in general has a lot of contact with palliative patients. A few HCPs suggested to ask patients about their relationship with their GP before transferring information. If this relation is compromised, this could increase miscommunication and, according to these HCPs, possibly even risk unnecessary hospital admission. According to some HCPs, the ideal way of transferring patients—from the hospital to a home situation—is in a consultation with both the GP and patient present in the same room. However, these HCPs do admit that this is practically and financially unrealistic. Lastly, increasing collaboration between colleagues in the hospital could improve communication. In addition to their strategies, some HCPs suggest that they, as a team or department, also should have a communication-strategy meeting for specific LHL-patients, aligning the way they talk to them, what they say and when they say it (Quote 9).

Quote 9. Specialized nurse palliative care.

Interviewer: Do you also experience barriers in providing care for patients with LHL?

Respondent: Yes. Sure. I think that if these patients have multiple HCPs, it is difficult to align the way all of these HCPS communicate with these patients.

Interviewer: Do you mean, for example, that the doctor should communicate in the same way as you do?

Respondent: Yes. Yes. That we, before talking to the patient, should discuss the things we are going to explain to the patient, and how. And that you, only after discussing this, should approach the patient. However, this does not happen, of course not. The bustle and crowdedness of the hospital makes that … First, the doctor visits the patient and tells this … Then I come in and tell the patient that … I think that if you first have a multidisciplinary gathering and agree about how to approach such a patient, that could result in a patient who better understands the information, and therefore could be more loyal to his therapy. Yes.

Additionally, HCPs should not hesitate to transfer patients to other HCPs within the department if communicating is difficult. According to some of the HCPs, without having an explanation or reason for this, sometimes, communication just does not work between an HCP and patient (i.e., there is no ‘click’ or ‘connection’). These HCPs suggested that a transfer to another HCP could offer the patient a fresh perspective and could potentially improve communication.

Furthermore, HCPs suggested education for increasing their own communication skills, the sharing of experiences between colleagues, and the availability of additional tools supporting HCPs during and patients prior to the consultation. Some HCPs suggested to have peer-meetings solely dedicated to exchanging real experiences between colleagues regarding communication with LHL-patients. Also, in these meetings, video-recordings of real consultations might be helpful to reflect on their own skills. According to these HCPs, to increase awareness for LHL in these meetings, emphasis should be on the limited amount of information LHL-patients are able to process. Although most HCPs reported to use all kinds of tools or aides as a strategy to support their explanations (e.g., drawing pictures) or provide information for patients to take home (e.g., handing out leaflets or checklists), they indicated needing additional tools. To support their explanations during the consultation, some HCPs mentioned requiring templates of the human body and/or organs for them to write on as a tool for explaining the disease, and suggested to develop educational videos that explain to patients how treatment is administered to them. To support patients, some of the HCPs suggested to use tools to prepare patients for their consultations and ask them questions using surveys prior to the consultation. However, these HCPs do understand the difficulty of filling in these questions for LHL-patients. Furthermore, HCPs would like to receive tools for recognizing LHL, and receive information and training on how to use these skills during communication and SDM (Quote 10).

Quote 10. Specialized nurse in oncology.

Interviewer: What would you need to be able to align healthcare to patients with LHL?

Respondent: Well, a nice thing is that we sometimes have additional training, also in that area. That makes everything livelier again. You can exchange tips, asking, “how do you deal with that?” For example, drawing for people, drawing a schedule indicating this week you must do this, and this week you must do that. … Or drawing wounds for people, showing them how it will look. Or for people with gynecological cancer, drawing what it looks like from underneath, because that will look very strange.

Interviewer: Because then you learn to use tools that help to explain better?

Respondent: Yes. […] I don’t mean the drawing in itself obviously, but for example a tip, if you notice that people do not understand your explanation, visualizing is useful. I have learned that from lessons about people with incapacities in “health issues”. Continue to share [experiences and tips] with each other in lessons. [The trainer should be] someone who has devoted himself to this, who is an expert in it, a psychologist or a nurse or a doctor. Every nurse, every doctor, has to deal with this. It’s nice to share things with each other. Then it remains fresh and you think, “oh yes, those people [patients with LHL] sometimes need different methods, let’s try them out. Yes. That is always nice to do, additional training.

3. Tailoring.

Based on their assessment of LHL, HCPs report to tailor their communication. Yet, despite using strategies, some patients are just not ready to deal or talk about palliative care or dying (Quote 11).

Quote 11. Specialized nurse palliative care.

Interviewer: … Are there patients with whom you find communication difficult?

Respondent: Yes. Some people just don’t like talking about death or about illness. […] For example, […] someone who says, “well, talking about death, that is no fun, so instead we are going to have a coffee”. That’s difficult. Seemingly, some people don’t want to talk about it and need their own approach. Well, you have to accept that people don’t want to talk about it, at least at that moment, and that they need their own strategy. Sometimes you haven’t found that strategy yet.

HCPs reported to often intentionally simplify their language, use short sentences and easy language, avoid jargon, talk slowly, et cetera. They also limit the information they share with their patients and alter the ways in which they ask questions. They withhold overly detailed or complicated information, use only examples that are relevant for the patient or only ask the patient closed-ended questions. HCPs do recognize that simplification bears risks, because it may lead to incomplete and less specific information, and could implicitly be directive towards a decision (Quote 12).

Quote 12. Pulmonologist.

Interviewer: How do you try to take this group of patients [patients with LHL] into account when communicating in general?

Respondent: Yes, by outlining it more simple, or by using more simple language … However, I often think that despite this, we still talk too complicated. Even for patients without LHL … Sometimes it doesn’t even have to do with jargon. Every doctor knows that in theory, you obviously should use layman’s terms, that sort of thing… If you, as a medical professional, year after year, connect separate thoughts or concepts in medical practice with each other [e.g., connecting symptoms with types of medication], or find certain things logical, that are, on a certain level, not that logical for patients, I think that we easily lose sight of that as doctors, and that is, obviously, extra difficult for patients with LHL. But I’ll try to watch out for this. I sometimes notice this when supervising others, such as doctors’ assistants, for example, who are at the beginning of their career. When they explain to the patient what their condition is and why we prescribe treatment, I sometimes notice they are telling something a patient really cannot understand. That’s when you hear that it is really still too complicated.

Some HCPs assess the appropriate moment to discuss palliative care by carefully introducing this topic to the patient, if the patient refuses to engage, HCPs state that it is important to underline the possibility of discussing this topic later on (Quote 13).

Quote 13. Specialized nurse palliative care.

Respondent: If you already mention ‘the end’ a couple of times, later on, you can say, “I mentioned ‘the end’ earlier on, and by that, I mean ‘death’”. “Have you ever thought about that, about dying?” This is how I actually start the conversation. That’s how you open up the conversation. Sometimes you’ll notice that people, significant others, find it very difficult to talk about death, but it is oh so important, because if they don’t do that, they are going to miss out on something. As soon as the conversation is opened-up, they are ready to take the next step. I think that this is actually one of the most important tasks I have during conversations with people who are moving towards the end of life. I can have them take the next step, so that the lump in their throats is gone, and they are ready to enter the last part of life with peace of mind, enabling them to find the things they think are important and pay attention to them, without being afraid of death.

Furthermore, some HCPs sensitize their communication by empathizing with the patient. They ask patients about their feelings and emotions and actively describe the emotions patients express during consultations. According to these HCPs, by describing and acknowledging the emotions patients express, they make them part of the consultation and therefore more negotiable. Additionally, some HCPs create ‘openness’ by showing a genuine interest in the social lives of patients or ask questions related to their feelings. In addition, HCPs offer space for patients by allowing moments of silence during the consultation to stimulate patient participation and leave the initiative to talk with the patient. Some HCPs indicated that if rapport building with a patient is difficult, focusing on the experiences and feelings of significant others could indirectly create the desired level of understanding. Additionally, according to HCPs, being honest and straightforward is valued by patients. Regarding SDM, treatment options should be communicated within the context and preferences of the patient and significant others.

Additionally, HCPs recommend a comprehensive and supportive interaction with their patients. This means that HCPs recommend to openly discuss difficult subjects with patients and share the responsibilities of SDM when difficult choices are needed. They also state that refraining from treatment should be an option to discuss openly with their patients. HCPs should additionally support patients in considering this option, just as much as they support patients with other options—sharing responsibilities -, and that ‘not treating’ does not mean ‘not doing anything’ (Quote 14).

Quote 14. Internist and consultant palliative care.

Respondent: … Your own opinion is in there, no matter how you look at it. You can try not to have an opinion, but you can’t. Not everyone wants to have a choice. “Do whatever you like doctor”. Sometimes I don’t think it’s fair to people to position them with an option. As an example, from my own personal life, my mother had to decide for her severely mentally and physically handicapped brother whether to continue his life with tube feeding, yes, or no. And she did call me. And I said, “stop [i.e., no tube feeding], because this doesn’t contribute to the quality of his life”. But my mother was the one who had to make that decision. She still feels that, well, not that she killed her brother… Of course, people have to make their own decisions. But at some point, they are not supposed to feel that they are solely responsible for making life or death decisions. So, yes, SDM, however, without withdrawing from your responsibilities as a doctor.

Also, HCPs expressed the wish to discuss crisis situations and advanced care planning more comprehensively with patients. They believed that could avoid unnecessary hospital admissions. Furthermore, and in addition to empathizing with the patient, some HCPs would like to ask patients about their feelings and emotions. They suggested to discuss the lifeworld and goals of patients more empathically, and ask patients about their own future, for instance, “a year from now, how would you describe your own condition?”. According to these HCPs, this facilitates ‘real-talking’ and effective communication, however, in most cases, takes up too much time in a consultation.

Lastly, HCPs tailor their communication by repeating messages and summarizing information regarding medication and treatment options during and at the end of the consultation.

4. Characteristics of patients and significant others.

According to the HCPs, barriers to effective communication can occur as a result of characteristics of patients and significant others. According to HCPs, all patients in general have a responsibility to improve communication; they suggest that patients have to take more initiative, prepare the consultation beforehand, think about the questions that the HCP is going to ask during the consultation and ask questions if they do not understand the information. However, despite the responsibilities patients should have, HCPs additionally indicate that some of their patients are not able or ready to talk about palliative care (Quote 15).

Quote 15. Pulmonologist.

Respondent: With the vast majority of my patients, I cannot say “I don’t think you will be here in a year”, because then there will be no more conversation. […]. The conversation blocks. So sometimes, after a consultation, a significant other returns to the room when grandpa has already left for the counter, saying, “what do you think, doc, how is he?” And if I, at that moment, mention “I think he’s gone in a year’s time”, the significant other will respond “I know and I can see that, but how should we continue?” Well, that’s nice, because now you have an opening. However, if grandpa remains in the room and prefers to be left alone and wants to avoid confrontation … A lot of people don’t want to know that at all [whether they are still here in a year’s time].

More specifically, the knowledge of patients can be a barrier in communication. According to HCPs, many patients with LHL lack knowledge about anatomy or how the human body functions, are unable to understand treatment options, or do not recognize an emergency situation. In addition, according to some HCPs, patients in general in palliative care—but especially patients with LHL in palliative care—have a hard time of deciding when to stop undergoing treatment (Quote 16).

Quote 16: Specialized nurse in oncology.

Respondent: Well, the thing I often notice, and I don’t know if that’s because of LHL, but I do think so, is that people in the palliative phase with LHL often want to continue treatment for a very long time. They only want to treat, treat, treat. And at some point, they are incapable of saying, well, that’s enough. My chances are slim to none, so now we have to stop. And that is an important problem.

Interviewer: Okay. And why do you think that is? Why is that the case for people with LHL in particular?

Respondent: I think they are unable to understand those decisions. Look, it all comes down to probability calculations, right? If we give chemotherapy, there is a 2% chance that you’ll be alive in five years, compared to not giving chemotherapy. And even for us [people not having LHL] this is complicated. If you don’t even understand what a percent is and these probabilities are depicted on yourself, obviously, then it is impossible to form an opinion about that. And that creates a mode of survival for people, meaning treatment must go on. At all cost.

Furthermore, HCPs indicated that the attitude, mood or condition of the patient with respect to palliative care can be a barrier. Some patients can be very closed, stiff, distant, or only use very short sentences. Or they are upset, emotional or angry. According to a few HCPs, if patients feel anxious about receiving treatment, they tend to lie about the amount of pain they feel or the actual condition they are in.

Lastly, a divergent language and culture is perceived as a barrier in communication and SDM. For example, HCPs indicated that they are not able to check what a significant other or interpreter is communicating to the patient, which probably further decreases mutual understanding.

5. Content of medical information.

The complex nature of decisions that patients have to make in palliative care, for instance, deciding on permitting Intensive Care (IC) admissions or ‘do not resuscitate’ statements, are, according to HCPs, barriers for SDM. HCPs indicate that this is not only caused by the substantive complexity of the information, for instance, dealing with ‘chance of survival statistics’ that are too complex for patients to understand, but that the information is too complex for patients to imagine—i.e., matching experiences with expectancies. According to HCPs, patients are not able to imagine the options they are bound to choose from. Furthermore, according to some HCPs, discussing topics related to palliative care could provide patients with a sense of hopelessness that could impede communication.