Nineteen interviews with 12 patients and 9 family caregivers were conducted and analysed until theoretical saturation was reached. The mean duration of the interviews was 36 (22–54) minutes. The mean age of participants (n = 21) was 68 (range: 50–87) years. Most participants were female (14/7; 66%). Detailed characteristics of study participants are shown in Table 1.
Table 1
Detailed characteristics of study participants
ID | Age | Sex | in palliative care since (in months) | Setting | Patient/ family caregiver |
Interview 1 | 56 | female | 5 | outpatient | Family caregiver (daughter) |
Interview 2 | 55 | female | 4 | inpatient | Family caregiver (daughter) |
Interview 3 | 61 | female | 1 | outpatient | Family caregiver (daughter) |
Interview 4 | 76 | female | 6 | outpatient | Family caregiver (wife) |
Interview 4 | 76 | male | 6 | outpatient | Patient |
Interview 5 | 62 | female | 11 | outpatient | Family caregiver (wife) |
Interview 6 | 62 | female | 1 | outpatient | Patient |
Interview 7 | 50 | female | 4 | outpatient | Family caregiver (daughter) |
Interview 8 | 87 | male | 6 | outpatient | Patient |
Interview 9 | 58 | male | 4 | outpatient | Patient |
Interview 10 | 55 | female | 4 | outpatient | Family caregiver (wife) |
Interview 11 | 82 | female | 1 | outpatient | Patient |
Interview 12 | 57 | male | 18 | outpatient | Patient |
Interview 13 | 80 | male | 6 | outpatient | Family caregiver (husband) |
Interview 14 | 84 | female | 18 | outpatient | Patient |
Interview 15 | 67 | female | n/a | outpatient | Patient |
Interview 16 | 80 | female | 20 | outpatient | Patient |
Interview 17 | 64 | female | 6 | hospice | Patient |
Interview 18 | 83 | male | 11 | outpatient | Patient |
Interview 18 | 84 | female | 11 | outpatient | Family caregiver (wife) |
Interview 19 | 62 | male | 7 | outpatient | Patient |
The analysis generated three themes: 1 Areas of application of DTs in palliative care; 2 Potential of DTs; 3 Barriers to the use of DTs.
Areas of application of digital technologies in palliative: Use cases and technology applications.
Patients and family caregivers reported that interaction with physicians and nurses is primarily on an in person level, due to the pre-scheduling of consultations with physicians and nurses. Technology is used when something unexpected happens, an acute event occurs or to re-confirm information.
“So, as I said, if there's something unexpected is happening here [participants’ home], I make a phone call, but if I need a consultation with a doctor, I prefer to do it in person, because I want to see him while he is talking to me.” (Interview 3, FC, Pos. 23)
Most participants preferred synchronous means of communication, such as landline telephones or smartphones. These were characterised by their direct and immediate functionality, which enables rapid feedback and promotes a speedy, straightforward means of contact. The telephone is therefore mainly used to quickly clarify questions or to reschedule or cancel appointments. It is not commonly used for discussing health-related problems in detail.
“If you have any questions, you can also clarify them over the phone. Nurse Marion is a bit of the team lead. And if an appointment is postponed by us or, as you said, by the caregivers, so to speak, we do that by phone, right.” (Interview 4, P&FC, Pos. 42)
The landline telephone was preferred by participants as it represents a familiar, routinely used device, and was reported to have high connection quality, especially compared to potential connectivity issues that were experienced when using smartphones.
"Yeah, that's why the landline is better, but I mean, she doesn't have a landline in the car. But usually we always try to call from the office [landline].” (Interview 9, P, Pos. 239)
Furthermore, functions on landline phones including speed dial keys (in which the numbers of those providing care can be stored and dialled directly) and an answering machine function were valued by participants. Often smartphones were used by patients without access to a landline phone, when participants were on the move, and primarily used in emergencies. The risk of inadequate network coverage and the need to recharge phones were seen as burdensome by participants.
A further synchronous communication technology experienced by a few participants was video consultations, often due to limits in mobility. Where experienced it was rated positively and had often been offered by HCPs, in particular by physicians, and participants had been instructed on the procedure for a video consultation.
Instances of asynchronous communication technologies including messenger services and e-mail were reported, often dependent on individual HCPs. Primarily, these technologies are used if they are explicitly offered by HCPs and a joint agreement is reached on these means of communication. For example, participants reported communication by e-mail is often selected to avoid disrupting daily routines or to send documents, for example medical records. Communication via messenger services is selected when HCPs cannot be reached by phone and concerns do not require direct feedback. The participants often stated that they use messenger services, such as WhatsApp. Communication via messenger services mainly occurs with professionals in specialised outpatient palliative care setting, primarily with nursing staff and volunteers, but in some cases also with physicians. Notably, they are used when the health care institution providing palliative care has no regular opening hours. Figure 1 illustrates the systematic use of DTs in its situational context.
Routine use of digital technologies
Patients and family caregivers reported that straightforward and low-burden technologies should be used in palliative care, which are already familiar to and used by the users. In addition, the technologies must be efficient in terms of facilitating efficient and rapid communication with HCPs. Above all, patients and family caregivers tend to prefer and feel more comfortable using familiar modes of technology for communication. Reluctance to try out new modes of communication was evident, with a sense that adapting to new modes could be inefficient.
"I use the landline because I'm quicker and more experienced there. So it's always a precarious situation when he's unwell and you're a bit overzealous. I find it quicker then. Otherwise I use my smartphone." (Interview 5, FC, pos. 19)
Proxy function
Interviewees reported that in the outpatient setting, family members act as a proxy and often take over communication when the patient's health does not allow them to communicate with HCPs themselves.
“If I need anything, I ask my children and ask them to help me, to get me something or to get me information and so on. So that's what I try to do through my children.” (Interview 8, P, Pos. 149)
Proxy support with communication was also apparent in the hospice sector: here, too, family caregivers support and communicate on behalf of patients. The role of the caregiver in providing a proxy function in communication is an important mechanism to ensure that palliative patients can express their needs and wishes for their care.
Digitalisation - a generational thread
Family caregivers have often raised the issue that older people tend to have a negative attitude towards digital communication tools and are not open to them:
"As I said, an old person doesn't look at a cell phone or a laptop like that anymore. For this generation, it's just no good. Maybe it's something else for adolescents. But now, for old people like my mom, it's nothing at all. She doesn't touch a cell phone, that's a double Dutch for her.” (Interview 3, FC, Pos. 117)
Participants reported that older people sometimes have difficulties in dealing with DTs, as they grew up in a time when such innovations did not exist and the rapid change in technology is often a challenge for them. They often lack experience and confidence in DTs, which can lead to a certain scepticism and uncertainty when using digital devices and applications. However, the interviews revealed a predominantly positive attitude on the part of all patient age groups. Irrespective of disease status and health, patient participants had an interest in and openness to the use of DTs in their everyday lives.
“Yes, it's just that you can't get along without it. So why should I close my mind to it?” (Interview 11, P, Pos. 67)
Some palliative care patients value access to telemedicine services that allow them to receive medical advice remotely, which increases the convenience and flexibility of their care. Overall, palliative patients' positive attitudes toward DTs demonstrate the potential of eHealth to enrich and improve the lives of people living with challenging health conditions.
“I think digitalisation in general is helpful and supportive. Nothing works today without it.” (Interview 11, P, Pos. 187)
Nevertheless, the participants note that humanness must be prioritised when implementing DTs.
“Digitalisation, yes, I think it's good, but the human element must not be forgotten.” (Interview 4, P&FC, Pos. 73)
The participants were asked about how different DTs could be used to support the different types of communication in palliative care. The responses of all participants were then systematised. Communication with nursing staff, physicians and other palliative care institutions is usually direct and synchronous via landline telephones or smartphones. In some cases, messenger services are used or emails are written - but these tend to be the exceptions. With regard to communication between patients and relatives, it is not possible to identify any regularity, as all possible devices are used to varying degrees depending on the individual case.
Potentials of Digital Technologies
The following three key themes of the potential of DTs were attributed to their preferred use by patients and their family caregivers (Supplemental Material 3).
Support in work processes
Participants reported that DTs can support the work processes of their HCP. On the one hand, DTs were seen as a means of enabling HCPs to communicate with each other so that information can be exchanged quickly.
“Physicians and nurses in particular communicate with each other even more quickly by using technology.” (Interview 9, P, Pos. 195)
This also was seen as ensuring that patient-relevant information is not lost. Participants acknowledged that DT may reduce the documentation workload for HCPs; for instance, when they use technology for documentation instead of paper-based documentation.
"So, yes, they don't have to write long reports anymore by paper, in hard copy, but reports are written right on the spot, which is stored right away with all the other nurses that come in, and doctors and stuff." (Interview 1, FC, Pos. 51)
In addition, the participants recognised that time savings may be achieved with DTs. For example, travel distances for patients and physicians can be reduced if communication takes place using DTs. As a result, HCPs have more time for treating patients.
"These are short distances. And that is an opportunity. You can do all the more for people. If you can handle it in a short conversation then if you first get in the car and have to drive another ten kilometres and then maybe have to call the pharmacy and this and that. You could do all that in a short conversation or in a WhatsApp message or in an email.... you could save yourself the trip and save costs and save time." (Interview 6, P, Pos. 111)
Support in organisation
Participants stated that DTs could contribute to the organisation of appointments.
“Well, I see more opportunities in appointment management, because if appointments are made and everything goes right, then the person can say, the nurse or the doctor, I can come, there's something free. So for appointment management, that's to be welcomed.” (Interview 5, FC, Pos. 145)
In addition, DTs were recognised as having the potential to enhance and increase the efficiency of processes around organising appointments and medicines management.
“Yes, I think that some things could be done by e-mail or WhatsApp or something like that, if it would be a relief for the others. Like, for example, reordering medication or something like that.” (Interview 12, P, Pos. 20)
Patient-centred care
From the point of view of patients and their family caregivers, the use of DT was recognised as offering numerous advantages, especially for people with limited mobility. By using DT, people with physical limitations can gain access to healthcare services.
"Because, as I said, I'm not starting from myself now, because I'm still relatively mobile and active. But anyone who is really suffering from pain is given morphine, lies in bed, and perhaps has a gastric tube inside. They're just trapped in their body and can't do anything anymore. But if he still has the cell phone or tablet in front of his eyes and can even control a few things with it, whether it's the TV, whether it's the radio or maybe communicating with the neighbours or calling for help or whatever, that's a great thing." (Interview 19, P, Pos. 148)
Virtual care was recognised as a means of delivering psychosocial care, providing a safe space where severely ill patients and their family caregivers can open up about their challenges and receive support. Through social media, messaging platforms and online communities, they can maintain their social contacts and make new connections, which might reduce feelings of isolation.
“If someone is still standing by me a bit, that's quite good. But for the person who can no longer do that, who is stuck in bed, for example.... and also the doctor or the nurse can't scurry around him all the time. [...] That is not possible. Then the nursing service is something else again than this care. If you can reach this care through social media, I think that's a great thing.” (Interview 19, P, Pos. 108–110)
Patient monitoring was a further aspect identified by patients. People with long-term medical needs may require regular check-ups and treatments, which often involve travel. Through the use of DT, participants identified that HCPs could monitor the condition of their patients and intervene when necessary, without having to be physically present.
"In this respect, I see huge opportunities in the fact that [the use of digital technology] can be expanded to work with it. That it can bring advantages for both, the HCP and for you as a patient, that communication is expanded. It's not just a matter of a brief ten-minute consultation with the doctor followed by weeks of disconnection. In this scenario, both parties remain largely unaware of each other's post-consultation experiences. The doctor is left in the dark regarding the patient's well-being after prescribing medication. With digital technology, this knowledge gap can be bridged through feedback, greatly enhancing the overall healthcare experience. You can give feedback. Feedback. And that's much better there." (Interview 19, P, Pos. 202)
Lastly, DT was recognised as having the potential to enable rapid accessibility and availability of information and services.
“A: And why should digital technologies be used in palliative care or not?
B: Yes, they have to be used because of people... Time is money. And as I said, sometimes it goes with a small short answer to fix a problem. And it doesn't always have to be a huge effort. If I have access to a competent person, a trained person, at any time, and can exchange a few words with them, then that is important and valuable to me.” (Interview 6, P, Pos. 54–55)
Barriers to digital technology use
Barriers to the use of DTs can take various forms and occur at both the communicative, individual, and structural levels (Supplemental Material 3)
Communication restrictions
One of the most prominent barriers to the use of DTs reported by family caregivers was a risk of misunderstandings. Communication taking place via DT may occur without face-to-face physical communication. Emotions, tone of voice, and body language are harder to interpret, which can lead to misinterpretations and conflicts.
“Yes, there are many interpersonal problems because people write too much to each other and misunderstandings are inevitable.” (Interview 6, P, item 147).
DT enables communication over long distances but was recognised as often lacking direct feedback in real-time. In a face-to-face conversation, participants felt they could respond immediately to questions or concerns, but when using DTs, there can be delays, which can reduce the efficiency of and create stilted communication.
“And difficulties, yes, if care were limited to e-mail contact, then I would not be so pleased, because I'm afraid that it would be delayed or lost or something. I always have to hear him [the doctor] say, yes, I will, don't worry, I'll pass it on or something. If I just write that, then I don't get feedback right away.” (Interview 5, FC, Pos. 139)
A further obstacle to the effective use of digital technologies (DTs) is the perception of them not as a means to improve care, but as an end in itself. If patients do not understand why certain technologies are being used and what their intended benefits are, they lack the motivation to engage with and use these technologies as part of their care. Additionally, habits and routines have been identified as influential factors, as they can lead to the perception that the use of technology is not an improvement. Patients are so accustomed to traditional communication channels (e.g., landline phones) that they are not open to using new technologies, even if these could increase efficiency.
“Yes, because the need has not yet arisen. So by smartphone phone, yes, but otherwise I haven't had to forward any doctor's reports yet. [...] There isn't much communication between different doctors, SOPC and so on is necessary.” (Interview 1, FC, Pos. 43)
DT-based communication was often perceived as impersonal. The humanness might be lost because there is no direct personal contact.
“But I think you also have to be careful not to lose focus on the person. Because you simply see certain things better in person when you have the patient in front of you. But in principle, it's certainly good because it saves the nurse work and time, but as I said, I think people are simply left out of the equation when it comes to intensive digitisation, and it's all about or should be about, people.” (Interview 1, FC, Pos. 17)
In a face-to-face conversation, the conversational partners are physically present and can connect directly with each other. Physical presence creates a human connection and fosters a sense of closeness and familiarity. Digital conversations lack this physical interaction, which can lead to them being perceived as more distant and impersonal.
“Exactly, that's the point, because these are also people who can no longer participate in life due to their serious illness, who are confined to their four walls. I would say that when someone comes and pats your arm a bit and says, well, how are you, it's always very different than when he sits at the screen and says, so now, tell me. I find it very impersonal and detrimental to the clinical picture when it's done that way.” (Interview 5, FC, Pos. 173)
Individual barriers
A common barrier to the effective use of DTs is patient disinterest. Some patients reported that they do not need the technology or that they can manage their tasks without DT.
“Because I'm not interested in technology at all. What I can do physically, I do; what I can do normally, I do. I am under medical supervision and that is enough for me. And if someone wants to reach me and wants to talk to me, he can reach me at any time via my landline phone. The answering machine is also on, so from there, I have no problems.” (Interview 18, P&FC, Pos. 59)
Lack of knowledge about available digital options and how to use them is another significant barrier. Participants reported that they are not sufficiently informed or do not have the necessary skills to use DTs effectively.
“And I see this risk that, in old age, people will no longer be able to do this themselves or to communicate via this channel that we are currently trying. And that is also necessary. And I see this risk.” (Interview 4, P&FC, Pos. 205)
It was evident that there was wider variation at the individual level in terms of affinity to technology from the patients' perspective, from enthusiastic to reluctant and uncertain.
Structural barriers
One of the fundamental structural barriers to the use of DTs is the availability and reliability of network coverage. Inadequate internet connectivity was reported by participants, noted to be particularly problematic in rural or remote areas in Germany. Slow Internet speeds and unstable connections were recognised as having the potential to affect the use of technology and effective communication.
“That's out here in the village, too, sometimes really with connection problems, with dead holes and so on.” (Interview 7, FC, Pos. 161)
The protection of personal data too was a concern for some participants. For example, some participants expressed concern that sensitive, health-related information could be accessed. However, other participants attributed data protection to a subordinate role:
“It's all a bit blown out of proportion with data protection. Sure, there are some things you know you can't talk about in public or whatever. But no, I don't worry about that so much. Data protection doesn't play a role.” (Interview 5, FC, Pos. 163)
Frugality towards healthcare
The non-use of DTs primarily arises from a lack of recognition of their necessity and frugality. Patients already feel well cared for and demonstrate an understanding of the limited resources and stress faced by HCPs. They consider the workload of HCPs by - if visible to the patients - communicating their concerns asynchronously rather than synchronously, allowing HCPs to respond more flexibly.
“Then I write an e-mail and either the doctor calls me back or he says I'll turn up then and there. Then we sort it out, depending on how urgent it is. But I usually write an email first before I intercept the person at work. After all, they have work to do.” (Interview 6, P, Pos. 63)
If good quality standard care can be accessed, there is little perceived need or value for digital approaches. There was little appetite for digital transformation to care as patients and families were content with the palliative and hospice care they were accessing.