Palliative Care Research

When people ask me what I do, my new answer is: I'm a research assistant for the Lien Centre for Palliative Care, which is part of the Graduate Medical School run by the partnership of Duke and the National University of Singapore.

Totally self-explanatory, right?

Ok, if you're not complete up with the lingo, rest assured you're not alone. I admit I wasn't completely clear on what Palliative Care entailed when I took the job either. BUT I've learned a lot in the last 4 months and it is really interesting to be  gaining experience in this field and to be working with some really distinguished colleagues. Palliative care it is a very important area of growth in the medicine, both in Asia and worldwide. The Lien Centre is focused on education and research, using study findings to inform policy regarding end of life care in Singapore. So this job fits in nicely with my goal of being involved in research that can affect policy to improve the lives of vulnerable populations. In this respect, it is not very different than my former position at CGR.

SO, what is Palliative Care? While generally associated with hospice care, often for cancer patients, that's only part of it. It's a squares and rectangles thing - Hospice Care is generally Palliative, but not all Palliative Care is Hospice Care. And it isn't just for cancer patients (anymore).

Straight from the WHO's mouth:
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

In a Singaporean context, palliative care is of growing importance due to several factors. First of all, Singapore has a 'rapidly aging' population. No, individual citizens are aging at an increased rate. But because of a low birthrate along side increasing life-expectancy, the population over the age of 65 is a growing proportion of the total population. In other words, more and more people are going to be dealing with life-limiting illnesses such as cancer, heart failure, organ failure, and COPD. Which also means families will be dealing with this as well.

Palliative care is also an important concept in Singapore in light of the many different cultures and family structures. The attributes that make up a good life - and a good death - may differ widely from culture to culture, and person to person. Recent research done by the Lien Centre has focused on examining people's preferences for care and lifestyle at the end of life (EOL). Currently, I am helping input data from a survey being conducted with Stage 4 cancer patients and their caregivers - ascertaining not only the patients' preferences, but also the caregivers' preferences for the patient. It should be really interesting to see to what degree patients and caregivers agree on the course of care for the patient! Some of the questions deal with whether or not a patient would be willing to undergo difficult, costly, or painful procedures in order to live longer.

At the heart of this issue is the balancing of length of life versus quality of life. Is it better to undergo painful surgery and miserable side effects in order to live an additional 8 months, or to forego the surgery and only have 4 months that may be less panful? What if the surgery could extend your life by a year? Or 2? At what point do the scales tip? Well, that completely depends on the patient - and their family.

My supervisor and I are currently developing 2 surveys - one to be fielded among cancer patients of all stages, and one to be fielded among physicians. The cancer patient survey examines patients' attitudes towards various situations in which they would forego life-extending treatment in exchange for less pain or lower costs. If this sounds somewhat abrasive, I'd like to assure you that we carefully consider how best to approach these questions in a way that is as sensitive as possible. We are also trying to understand the patients' own understanding of their prognosis, treatment, and risk of recurrence, as well as their information needs and how their cancer diagnosis relates to their participation in the labor force. Right now we are working on getting the survey into IRB for the ethics review, but I am very excited to start fielding it and seeing how people react and respond to the survey.

The physician survey will be looking at physicians' practices in recommending various forms of life-extending treatment. We will also be asking about which aspects of their job they view as most important when treating patients at the end of life - is their most important role to treat pain? Prolong life? Address psychological concerns? Assure the highest quality of life possible? Pretty interesting questions.

As I spend time reviewing literature and discussing issues with my coworkers, I have been running into the question, 'what is a good death,' which is a really daunting question. But when I can start to put aside the gut-level reaction of fear, it becomes an interesting question to consider. I won't say it is necessarily pleasant to contemplate, but I also think that it can lead to a clearer sense of what you would want for yourself and how that might influence choices in the future.

Of course, preferences expressed at one time - say while you're in good health - could drastically alter if you are put in the position of actually making such decisions. Which is why studying the persistence of preferences over time will also be important to palliative care in the future.

Thanks for reading! The next blog will hopefully be a bit more light-hearted.