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Palliative care: Cautious digitisation of a technologically disconnected working world

Palliative care looks after seriously ill people and relies on social participation as a therapeutic tool. Actually, any technology here distracts from the important human interaction. But could innovative digital systems support the demanding, multi-professional collaboration of professionals in this medical field?

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Low tech, high touch – little technology, a lot of contact. This attitude characterises palliative care in contrast to classical medicine. The latter aims to cure diseases. Palliative care accompanies incurable patients in their last phase of life. It does this in a holistic and caring way. To achieve this, different professions work closely together on a palliative care ward: Doctors, nurses, case management and social services, art and music therapy, pastoral care, psychology and physiotherapy.

The work in the multi-professional teams is complex. All professionals take intensive care of each individual patient, as well as their relatives. A palliative care team is also confronted with a lot of information every day, which has to be processed factually and emotionally and carefully documented. In the weekly team meeting, the central place for treatment planning, the doctor, for example, reports on a patient’s severe pain. The pastoral worker says that this patient is very afraid of death. The psychologist knows about the patient’s concern for his family.

Existing technological systems? Not optimal

“Existing technological systems in the health sector are not designed for the fluid exchange of information in palliative care teams. This applies to both the software and the hardware,” describes the business informatics expert Professor Dr. Henner Gimpel from the Fraunhofer Institute for Applied Information Technology. He is part of the interdisciplinary research group of the bidt-funded project “Palliative Care as a Digital Working World: Perspectives and Design Options for the Digital Transformation of Communication and Collaboration Processes in Multiprofessional Care in the Final Phase of Life” (PALLADiUM).

The project combines perspectives from business informatics, sociology and medicine. The interdisciplinary approach generates valuable impulses for improving the working world, which is considered “remote from technology”. Dr Sarah Peuten from the University of Augsburg takes the sociological perspective. “Specifically, we want to find out how to maintain the relevant information and knowledge situation for all employees of a palliative care team with the help of a digital assistance system – independently of the joint meetings and taking into account multiprofessional cooperation.” The different professions should have a shared understanding of the case at all times and thus be able to act in the best interests of the patient.

Because of their profession, palliative care professionals each have a different view of the patients.

Dr. Sarah Peuten To the profile

The right dosage of technique

Dr. Tobias Steigleder is senior physician at the palliative care unit of the University Hospital Erlangen. “In the last phase of life, it is primarily about symptom relief. For this, social participation is our most important therapeutic instrument, supported by drug therapy. Our challenge is: all social participation is disrupted by the presence of technology. This can be a trivial infusion stand. When you sit together – with the psychologist, the therapist, the relatives – your eyes will always wander to the infusion to see if it is still dripping. The togetherness is distracted. That’s why our field of work is designed with little technology.”

The researchers of the bidt project accompanied the work of the palliative care team in Erlangen for several weeks in order to

  • to get to know the processes in the multiprofessional cooperation,
  • To draw up requirements for a digital system to support the communication and collaboration processes, and
  • to develop initial implementation concepts.

The work of palliative care is oriented towards the subjectively perceived complaints of the patients. Tobias Steigleder says: “We have to constantly assess: Which patient needs whom or what right now? The palliative team makes this assessment repeatedly during the day and from this an overall picture emerges.” Although the staff document all relevant data and information digitally, the possibilities for use are limited. “We use a digital information system, for example to query laboratory values. But patient care itself is hardly supported digitally so far.”

This is where there is potential for innovation, the physician believes. “Our data collection is enormous, but we can’t use it optimally with our technological systems.” In the palliative care department at Erlangen University Hospital, 15 people work together per shift. “If we could partially hand over their exchange among each other to a digital assistance system, that would make the work considerably easier, which would ultimately benefit the patients.”

It is important that any technology only supports in the background what the multiprofessional palliative teams do every day in direct patient care.

Dr. Tobias Steigleder To the profile

Digitalisation opportunities in palliative care

The project team was able to identify significant opportunities and challenges of digitisation in palliative care based on participant observations, focus groups and interviews with the staff of the palliative care unit:

Avoiding information and knowledge discontinuities

Important information gets lost in the flood of documentation. By using sensible technology, data could be better processed and made usable, for example by merging them and avoiding redundancies. In addition, the professions have different information and knowledge needs. Information could be digitally processed in a profession-specific way so that everyone in the team receives exactly the information they need for optimal treatment planning and patient care.

Preventing up-to-dateness distortions in meetings

When multi-professional staff meet in meetings, current events come to the fore. They can distort the overall picture of a case, simply because not all information of the last days and weeks is always “on the screen” of all staff members. What was important for the patient or the team in the days before is pushed into the background. A digital assistance system could help to ensure that even less current information is always present in team meetings.

Avoiding decision bias

In hospitals, also in palliative care, there is a clearly hierarchical structure, which means that different people and professional groups have “something to say” in different places. This creates a weighting of information that does not objectively reflect the actual situation of an individual case. A positive effect of a digital assistance system would be democratisation: all staff members would have the opportunity to make their case knowledge equally visible to their colleagues.

Respecting non-interference spaces

There are situations in which the limits of the digitalisation of this working world become very clear. After all, some conversations or information cannot and would not be communicated or documented via a technical system. In addition, care and closeness for the patients – as well as in the team among each other – cannot be replaced by technology.

In the test: A digital assistance system for palliative care

For the researchers of the bidt project it is clear: If the staff on the palliative care ward perceive a new, digital assistance system as additional effort, it will not be used. Sarah Peuten describes: “Especially from a medical and nursing perspective, this is a big issue. They say: We are already drowning in documentation requirements. We lose time with the patient or for the so important team exchange. The added value of a system must come to the fore in such a way that it is not perceived as a burden.”

In designing the assistance system, the project team therefore orientates itself on familiar, modern app designs. Henner Gimpel describes: “With mobile devices, one could simplify the work processes and increase the quality of the information entered. But the handling of the new digital system has to be very easy and intuitive.” The result should be an app that runs on normal smartphones and tablets. “Staff in the palliative care unit can see there, for example, that the patient’s pain has increased over the last four days. Then they can click in depth in the app: Has anyone documented what the pain is? How have the medications changed? However, as part of the project, we are not releasing mature software, but are first testing our technical prototype extensively in practice.” The prototype is currently under development.

The interface of the digital system must work for many staff members who are not primarily concerned with technology but want to take care of patients and relatives.

Prof. Dr. Henner Gimpel To the profile

Planned functions of the digital assistance system:

  • All staff members of a palliative care team use an app on their professionally used mobile devices as a reflection surface for personal case knowledge.
  • The digital system creates a common basis for discussion, for example for team meetings.
  • Employees can decide whether a new piece of information should be saved or sent directly to someone at the same time: a mixture of a shared notebook and instant messaging system.
  • Pop-up notifications are used to send important information to individual employees, for example when someone needs help or regarding the current work schedule.
  • With the help of artificial intelligence, information is processed in a profession-specific manner and displayed in the app (perhaps even person-specific in the future).

Digitisation of palliative care – or digital transformation?

If new digital systems are to be successfully introduced in palliative care, this must be done with respect for this traditionally technology-remote working world. Is “digital transformation” – as the project title suggests – then not too much to ask? “Palliative care developed in the 1950s and 1960s as an antithesis to increasingly mechanised intensive care. Of course we use technical aids, for example for documentation. But because of the history of our field of work, almost every digitalisation is a digital transformation,” explains Tobias Steigleder.

Sarah Peuten adds: “Acceptance is still relatively low today – due to the development of the field. It is all the more important to develop the right technology and to make it clear that it is always about a support system. Human work as well as commitment cannot and should not be replaced.” Of course, a palliative care team remains dependent on verbal exchange with each other: Processing and coping with sometimes stressful situations cannot happen digitally. “Often, staff members need to discuss something very acutely with someone because they need a decision or feedback.” A digital assistance system cannot map that either. “But it can create more freedom for precisely such situations because it reduces the workload elsewhere.”

What role does data protection play?

For the technical prototype of the bidt project, the University Hospital Erlangen provides anonymised data that can be used in research. “When we later use it in palliative care, we are legally operating within a professional environment in which there are clear data protection and confidentiality rules,” notes Henner Gimpel, a business informatics specialist. At the same time, the research team is looking at possible stakeholder concerns about data protection. “There is a strong gate-keeping effect: potential users asked us right at the beginning what this means for patient privacy. Privacy should be protected, because we are talking about sensitive patient data,” Sarah Peuten reports.

Senior physician Tobias Steigleder adds: “We have a Patient Public Involvement Initiative in Erlangen that also helps shape research. Their perspective is interesting: there are few sensitivities among patients and relatives, but a trust that data will be used and shared responsibly. They see the need for every actor to know the data in order to improve personal healthcare. And it is clear that digitalisation primarily concerns the cooperation of medical and nursing staff – so that they can concentrate fully on the patients.”

The bidt project lays important foundations

Thanks to the project’s knowledge-based, hands-on approach, the findings can be translated into other contexts where similar challenges arise due to multi-professional collaboration, such as geriatrics, inpatient and home care for the elderly and outpatient palliative care. For the project team, palliative care is an enormously exciting field, emphasises Sarah Peuten. “There is little digitality here and no great enthusiasm for using technology. We can lay a lot of groundwork there and do valuable groundwork with our prototype.”