Research in hospices: why it matters to patients

Clinical research is the process by which knowledge is generated to improve healthcare outcomes. There is now a wealth of evidence that healthcare institutions that are research active achieve better outcomes for their patients and that their patients are better informed and more satisfied with the care that they receive.

The crucial role of research was especially highlighted during the COVID19 pandemic, when rapidly developed trials in the UK were able to establish effective treatments for this new disease and to develop effective vaccines to allow us to emerge from the pandemic. 

Beyond the immediate benefit of proving the worth of a new treatment or novel ways of delivering care, there are many benefits to clinical research activity, including better adherence to best standard of care protocols, and better retention of motivated healthcare professionals.

There is no reason to believe that these benefits do not apply to care given within a hospice setting. Historically there may have been a ‘gatekeeper effect’ whereby healthcare professionals working in the hospice sector believed that their patients, approaching the end of their lives, needed to be protected from being bothered by the potential additional demands of participating in clinical research activities.

To counter this view, a recent rapid review of the literature around research participation in palliative medicine (1) has demonstrated that there is strong evidence to suggest that patients in these settings greatly value the opportunity to participate in research. Many patients are motivated by altruism, with a strong desire to improve care for future patients:

“I am happy to do whatever I can to help if it makes a difference to others. Unless the government knows the details of what we need they can’t make a difference”

“A psychological benefit in knowing that someone is thinking about these issues actually helped me. At least someone is doing research in this area and may make some changes to help others in our situation.” 

Others report feeling better informed about their care as a result of participating in research studies: 

“I remember thinking that it could probably only be a positive thing to maybe get some extra information or some extra help with getting information. So I couldn’t see any downside.”

There are clearly many unanswered clinical questions about how best to care for patients reaching the end of life, and how best to support their families and carers. How best to use drugs and non-pharmacological means to control symptoms, how best to co-ordinate care in the community, how to better meet the end of life care needs of underserved communities to name but a few. These questions are ripe for further research.

It is sometimes assumed that clinical research is restricted to trials of new drugs according to a traditional medical model. However, this could not be further from the truth.

Whilst there clearly is a place for research into new drugs to improve symptom control, the scope of clinical research far exceeds this, to include investigation of the role of non-pharmacological interventions, optimising health service design for patients reaching the end of life and how best to support carers and volunteers.

This activity should be seen as a core part of the role of any healthcare professional working in the hospice sector.

With increasing recognition of the vital role of research amongst all healthcare professionals protecting patients from the perceived burden of research participation is almost certainly less of an issue.

Nonetheless, it must be acknowledged that hospice patients may be very frail and unwell, and may not have capacity to give informed consent to clinical trial participation. This may limit opportunities, unless, in appropriate circumstances and with ethics committee oversight, alternative methodologies can be employed. 

It must also be acknowledged that research participation can require considerable resource in terms of staff time and expertise. At a time when both funding and staffing levels are over-stretched it can be challenging to devote time and resources to what may be perceived as additional non-essential activity. Significant infrastructure is required to undertake the necessary governance checks and ensure that patient safety is protected at all times and this may not be readily available in every hospice.

Furthermore, significant resource and expertise is required at a national level to determine what the most important research questions are in this setting, and to design appropriate studies to answer these questions.

In spite of these challenges there is undoubtedly a growing recognition that research is part of what we do in hospices, and that it is seen as a part of the solution to problems, rather than just being another problems to solve.

Board level recognition of this is vital to success, with a willingness to commit both time and funding to developing research capabilities. Collaboration with other research active units to develop new studies and to share resources (for example, research governance infrastructure) can be invaluable and has recently been encouraged via National Institute for Health and Care Research (NIHR) Palliative Care Research Networks. 

At a national level there is a recognition of the vital importance of research to improve end of life care, since all of us will require this. The NIHR is committed to supporting research in this area and currently has a particular focus on supporting clinical research in settings outside of the NHS. This is a moment of opportunity for the hospice sector.

And above all, our patients can help to drive this agenda. Careful listening to what the biggest problems are, and what is of most importance to our patients is vital to designing research that will be most impactful. This is critical to securing funding to undertake the research, designing studies that patients will be willing to participate in, and ultimately to answering those questions that are of greatest importance.

Reference

1. Chatland LE et al. Research participation in palliative medicine - benefits and barriers for patients and families: rapid review and thematic synthesis. BMJ Supportive & Palliative Care 2023; 13:35-44

Professor Jon Wadsley is a Consultant Clinical Oncologist at Weston Park Hospital, Sheffield. His clinical interests are in thyroid cancer, neuroendocrine tumours and other endocrine malignancies, with a particular interest in molecular radiotherapy.

He is Clinical Director of the Sheffield Cancer Clinical Trials Centre, Cancer Specialty Lead for the Yorkshire and Humber Clinical Research Network and one of the NIHR National Specialty Leads for Cancer. He is passionate about the role of research in improving patient care and outcomes.

Jon is a trustee at St Luke’s Hospice, Sheffield and chairs its research committee.