While taking a GRAB ride, my conversation with the driver eventually turned to work. Upon discovering that I am a research assistant at HCA Hospice , the driver asked, in an indignant tone, “You mean you do research on dying people?”
I answered with a simple “yes”. However, the reality of research in palliative care is much more than that.
When the word “research” is mentioned, people may immediately conjure up images of scientists wearing white lab coats and surgical masks, scribbling notes on a clipboard while conducting experiments on hapless victims. Thus, it is little wonder that some continue to view research with suspicion, especially for studies that involve vulnerable populations.
It also does not help the situation, when they hear both “research” and “palliative care” together in the same sentence. Some people believe that studies are done on the dying, simply because it would not matter, if they pass on, as an adverse result of the studies. Therefore, it comes as no surprise that sometimes people question the role of research in palliative care. Why must you conduct research on them? Aren’t their lives hard enough at this point in time? Why can’t you do these studies with the young and healthy?
Firstly, palliative care is not only for the dying, but also for those struggling with life-limiting illnesses. There is much that we can and must learn from our patients with regards to the disease experience and how we can best support them in their journey.
Secondly, some may be concerned that patients may be pressured or coerced into participating in research. In modern-day research, participants are protected and researchers are supervised by committees that ensure high ethical standards. No matter the type of research work that we embark on, the well-being of our patients and their significant others, are always at the forefront of our consideration.
Moreover, participation in research studies is on a voluntary basis – participants can choose to withdraw at any point during the study. They will receive the same standard of care, regardless of their interest in research.
In clinical practice, counselling frameworks, treatment models, drugs of choice and even the important factors to look out for when it comes to managing each case, are supported and designed with the knowledge gleaned from various research studies. Data and evidence found through these studies help to generate discussions within the palliative care field, guiding clinicians to make better clinical decisions. Through research, we can develop better and more accurate assessment tools, allowing palliative care services to better allocate resources and meet the needs of the dying and their caregivers.
It is important that we are able to understand the current thoughts of the ill and dying. At different stages of our lives, our needs, wants and hopes evolve and change, depending on our life situations and experiences. To ask someone who is still in the prime of their life, to contemplate what they would want at the end, is possibly quite hard.
It is through research, that we can better understand the needs and challenges of people at this important stage of life. With limited life expectancy, sometimes patients struggle to communicate their needs and wishes. In some cases, they may have turned non-communicative, due to disease progression. Family members and caregivers may experience distress in trying to make end-of-life decisions for them and this is where knowledge from research studies, can help to guide the family to make plans that are most likely to align with the patient’s wishes.
Research with the dying and their caregivers is much more than just gathering data to publish papers. The process is not as crass or cold as some may imagine. Sometimes, it can also be warm, engaging or even reflective for the participants, especially when they share about their own experiences and feelings with the researchers. The process can help to illuminate the deep desires and hopes for the future, that these patients cradle within themselves. Such moments call for compassion from the researchers to approach these topics with sensitivity and kindness, which can help the participants to feel safe in sharing more.
All in all, research plays an important role in palliative care. Just because we are working with the dying or with someone who may not have long to live, does not mean that research takes a callous approach to them. Research is not about trying to pry information but rather to learn from the information gained, in order to better guide palliative care services. What we learn from our patients today, will go a long way in supporting other patients and their families.