The Helix Centre is an innovation lab working at the heart of healthcare. In a series of articles we’re sharing our recent findings, prototypes and headline conclusions from our latest end-of-life care work.
This first article looks at our work to provide better holistic care for patients living with a life-limiting illness, as well as professionals experiencing burnout, by integrating mindfulness practice into end-of-life care.
Meeting people where they were
In September 2018, we began a new project to address people’s psychosocial (emotional, psychological and spiritual) care needs at end of life. We wanted to investigate therapeutic approaches that may benefit people living with life-limiting conditions. A clinical nurse specialist in palliative care in London, Imogen Eastwood, joined the team to help develop the project.
Through our initial desk research, we identified mindfulness as a well-regarded but underdeveloped practice. Mindfulness meditation — which fosters the nonjudgmental, in-the-moment awareness and acceptance of our thoughts and feelings — has been shown to reduce distress, improve psychological wellbeing and improve quality of life.
As part of our design research, we wanted to learn about practitioners’ experience of delivering mindfulness to patients living with life-limiting conditions, so that we could understand the opportunities, barriers and unexpected outcomes that offering the therapy could bring. To design something that’s safe, appropriate and desirable to patients, we also needed to understand how mindfulness directly affects those approaching the end of their lives.
We met practitioners in places that already offered mindfulness so that we could draw on their lived experience. These ranged from hospitals (including Intensive Care Units), hospices, day units and people’s homes.
After synthesising the information collated from the interviews, we identified 24 themes. We then prioritised five of these as key focus areas. One theme was focused on the need for staff to have better self-awareness and resilience:
Due to the complexity and depth of emotion required in caring for patients at and around the end of life, professionals recognised the importance of having self-awareness and the ability to cope with the responsibility and content of what they are exposed to. The ability to separate their own emotions from the relationship with a patient is necessary, combined with the ability to sit with someone who may well find it uncomfortable to notice and focus on what is going on around them. Practitioners talked of the need to be aware of their own emotions so as not to transfer these to their patients (countertransference) or to allow the opposite to occur (transference). Experience in mindfulness practice was recommended to help patients cope.
At the Helix Centre, our research benefits from direct access to the clinical and healthcare environment and the professionals who work in it. So we also wanted to hear from the other side and understand the lived experience of people receiving mindfulness therapies, and that of their carers. We interviewed ten people with life-limiting conditions and synthesised 18 themes, covering a wide range of topics. These included using mindfulness to cope with the physical and emotional symptoms that arise at the end of life:
Patients spoke of mindfulness not ridding them of uncomfortable physical and emotional symptoms, but that mindfulness helped to ease them, by supporting how they related and coped. These are sometimes known as primary and secondary symptoms. The primary being the original sensation and the secondary being how someone relates to that symptom. One patient described how it helped her when thinking about her future, “I know when I’m next poorly, when it raises its ugly head again, I’ve got this to fall back on.”
A carer we spoke to was awaiting the imminent death of her husband when we met and described how different she felt since practising mindfulness: “Whereas before I felt I’d be knocked off my perch, now I feel like there’s some sort of safety net beneath me.”
A review of the existing literature gave us an overview of mindfulness in the current climate of end-of-life care. We found that there was already a need for more comprehensive digital tools for patients, which also needed thorough evaluation. The review also highlighted the need to remove the apparent mysticism of the practice to promote better engagement with it. We also showed that healthcare professionals could benefit from being better engaged in this practice, too.
Identifying the need for an inter-relational approach
Mindfulness has recently become a bit of a buzzword, found in fashion magazines and health websites alike. It’s being taught everywhere: from community halls to schools and workplaces. And there is no shortage of mindfulness apps on the market. Many are for general wellbeing, some for mental health and a few are targeted at those with chronic pain. But we didn’t find any that exist specifically for those facing the end of their lives.
Our observations have shown us that compassion-based, therapeutic practices like mindfulness can be excellent in supporting psychosocial care needs to those living with a life-limiting condition.
But it also became evident to us that compassionate care of patients must start with the healthcare professionals themselves. Practitioners we spoke to in the UK and US agreed that to improve compassionate psychosocial care, those looking after patients must first demonstrate self-compassion and greater awareness. We feel the two are closely interlinked.
At a fundamental level, if healthcare professionals are to advocate mindfulness to their patients, they need to understand what they’re recommending. This notion led us to look at the barriers that professionals might experience towards mindfulness. Specifically, whether there’s a viable opportunity for mindfulness to be incorporated into the extremely busy days of healthcare professionals working in palliative care. So we contacted a community palliative care nurse, an inpatient palliative nurse and an inpatient palliative care doctor, and captured their working day through user journey mapping.
This activity turned out to be significant because in one case, the doctor we recruited had to be signed off work with emotional burnout and anxiety and couldn’t complete the task. It is telling in itself that they had had to stop work due to unmanageable work pressures, and highlights the serious need for self-care in the palliative workplace.
It is difficult for professionals to advocate for something that’s perceived as non-essential
End-of-life care organisations are acutely aware of the pressures on their staff. Several hospices we spoke with were already running eight-week, mindfulness-based stress relief courses and drop-ins. But attendance was reported to be unreliable. In the presence of other colleagues, staff sometimes felt exposed during sessions which required them to open up emotionally. Despite interest, staff (and carers) frequently said they just didn’t have time to attend sessions and professionals weren’t given protected time to attend within working hours. It is difficult for professionals to advocate for something that’s perceived as non-essential, despite the evidence that mindfulness can benefit both staff and patients.
This work led us to seek out potential opportunities in the busy, stressful working lives of healthcare professionals to engage with mindfulness, especially those with little or no understanding of it.
We engaged with a small group of doctors, nurses and social workers from inpatient hospital, community and hospice settings, and created a mindfulness service prototype. Our objective was to gauge their attitudes towards mindfulness in their professional practice, beginning with a low-commitment engagement.
We worked with an experienced palliative care nurse and mindfulness practitioner to create an audio recording. This began with an introduction that spoke directly to users about the potential impact that working in end-of-life care can have on them. The session asked users to contemplate the long-term effects of their work and consider what coping strategies they might already have. It also included a breathing exercise.
What we learned
Our prototype validated many assumptions. As expected, the most common barrier to fully engaging with the exercise was a lack of distraction-free time. Participants are immersed in a busy and changing work environment. Many were parents, so it was little surprise that finding the time was particularly difficult for those with children.
…by engaging in mindfulness practice with patients, something could be shared rather than just provided.
However, there was also a very positive realisation that by engaging in mindfulness practice with patients, something could be shared rather than just provided. One nurse felt that they had lost touch with the importance of one-to-one connection with their patients, due to the ‘task-orientated’ care that many feel is expected of them. Most participants felt that mindfulness provided an opportunity to encourage more meaningful professional/patient interaction.
To be viable in the long-term, we feel that any solution to this problem must cater to both the patient and the professional/carer.
Finally, we feel our investigations revealed a problem in the human-centred design methodology. If we place the patient at the centre, and design explicitly for their needs, then we will come up against issues we observed in our prototyping. The professionals and carers who support them will be ignored, and their needs placed secondary. We saw how palliative healthcare professionals were experiencing burnout and debilitating stress by having their own psychosocial needs put behind the needs of the system, in effect representing the patient. A great deal is demanded of doctors and nurses in this specialty that can leave little time for self-care. To be viable in the long-term, we feel that any solution to this problem must cater to both the patient and the professional/carer. A more systemic-approach to developing design solutions is needed, to better identify, acknowledge and respect the inter-relationships between people. We see this project as an opportunity to test this approach out. We are keen to think through these ideas with the wider design community.
We also saw how compassion-based practices like mindfulness can help participants become aware of the inter-relational aspect of their work and life, which they perceived as a source of empowerment rather than deferment. We want to explore further how our design methodologies can better capture these inter-relational qualities and challenge the assumption that a singular focus on one user is the best approach to designing for people.
Where this takes us
End-of-life care often forces patients, families and professionals alike to confront their own existential issues, which can sometimes be expressed as pain. Great care and sensitivity are therefore required to openly discuss death and dying. And our work has taught us that a mindfulness service in palliative care would need to be adaptable for the changing needs of patients, and for a variety of healthcare professionals.
With that in mind, we believe there are two opportunities for development:
Firstly, a tool for both patients and professionals that identifies the common themes experienced in end-of-life care. This could take shape in a number of ways, but the focus would be on important inter-relational aspects of mindfulness that our research has highlighted, such as being able to sit with pain and discomfort and building resilience.
Secondly, a toolkit specifically for healthcare professionals (and indirectly for management teams) aimed at everyday use. This toolkit would support those who want to be able to deliver a form of mindfulness to patients, but don’t know how, and who currently have to refer patients to such a service.
Both the tool and the toolkit would be for people who may only have very limited time — both patients and professionals. We acknowledge that a digital product or service-based approach is not for everyone, but it would be a model that could be used in conjunction with face-to-face support, which remains immensely valuable for many.
We have since developed collaborative opportunities with select organisations that can provide input and partnership with a mindfulness practitioner, who would bring a great deal of experience and insight into palliative care.
There are inherent pain points and delays in recruiting staff on the frontline and, for patients living with chronic long-term or terminal illness, time is limited and energy is often in short supply. This means we need to develop a flexible way of testing our prototypes. We feel these issues could be better mitigated by testing in controlled environments, such as an in-patient hospice. We’ve seen a strong enthusiasm and commitment to test prototypes in these places, with a population of residents who may be more open to testing.
We want to build the most representative and diverse testing population for our future prototypes and ideas. We welcome any thoughts and feedback on this as we develop the tools, so please get in touch using the contact details below and help shape our future work.
In the next edition of the series, we’ll be discussing our work in around carers administration of end-of-life medications. So make sure to keep an eye out.