Imagine that you’re sitting in a hospital bed, the same one you’ve been living in for the past three days. You’ve been poked and prodded by doctors as they have tried to figure out what’s wrong with you. You’ve gone through more CT scans and blood tests than you can count. You’re exhausted and feel even worse than when you first came in.
Imagine that the doctor comes in to tell you that they’ve figured it out. You feel momentary relief because your condition is no longer a mystery. Then, she tells you that it’s cancer. She continues to explain your diagnosis, prognosis, and that you’ll be referred to palliative care. Eventually she leaves you to process this information and you’re alone in your hospital bed again.
You weren’t listening, were you? Of course not. You just found out that you have cancer and your thoughts went awry. Yet the doctor assumed you were fine and would understand terms like “prognosis” and “palliative care.” In reality, you probably have no idea what’s going on anymore. You’re scared, confused, and maybe even a little angry.
You might be wondering why a post like this is on a blog about studying abroad. Months ago, I probably would have been shocked to see a post about it, myself. After having lived in the realm of death for the past five weeks, however, I think this post could never be more appropriate.
As you may already know, I’ve been interning at the King Chulalongkorn Memorial Hospital in Bangkok, Thailand. I honestly had no idea what to expect when I found out I’d be working with the palliative care team. I had a vague understanding that palliative care was like hospice — they are indeed two different things — but I knew nothing beyond that.
After I began my internship, I quickly learned what palliative care is. In a nutshell, it’s physical, mental, social and spiritual care for those who have a terminal illness. The patient may still be receiving treatment with the hope to cure, or they may be receiving treatment to make the end of life more comfortable. The goal of palliative care is to help the patient and their family understand and manage the projected course of their disease. As a social worker on the palliative care team, we focus on the social and emotional effects of death.
One busy morning, I found myself standing next to the bed of a woman who had been diagnosed with cancer. She was in the process of being discharged to go home to Northeastern Thailand and live out the rest of her days. Making it possible for a patient to die at home is one of our many jobs though this can often be difficult to arrange. The family may not have room to take care of their relative or they may not have the money to pay for a caretaker. It is more expensive, after all, to take care of a terminally ill relative at home than to leave them in the hospital.
It had taken some work and some time for this particular patient, but she was going home at last. Her smile was broad and beautiful. Her eyes were bright and friendly. Joy was flowing through the room as she excitedly spoke to everyone that came close enough to listen. Although she hadn’t known the palliative care team for long, she treated them like family and they treated her the same.
My fellow intern and I hadn’t had the chance to meet this client before, but that didn’t seem to bother her. The moment she saw us she began to chat at us. We were fortunate that the other social worker there could translate some of what she said to us. In return, we practiced some of the Thai we knew, which absolutely delighted the patient. We told her that it was nice to meet her and in turn she wished us luck in our studies. Such simple words have never held so much weight in my heart.
Just as we were about to leave the patient’s room, she excitedly asked if she could take a picture with us. My heart stopped. Of all the things I expected her to say, that wasn’t one. You see, it’s been very hard for me to accept that the patients we are forming relationships with are within their last months of life. In this moment, as we held her hand and smiled at a camera, I realized that these relationships are a million times more important than any other relationship we could form. In a time where our patient may see nothing but darkness, we are their light. We become their rock in the storm, their support system and their extended family. Upon this realization, I felt honored not only to meet her, but to have the chance to lift her spirits simply by taking a picture with her.
Unfortunately, not all of my patients could smile like this one. Many experienced obstacles and sorrow because they had never been prepared for making the difficult decisions that come with the end of life. This brings me to the biggest lesson I learned in my internship. We need to talk about death.
Remember the scenario in the beginning of this post? Imagine if palliative care and the decisions that came with death was a conversation we had before we were looking death in the eye. Imagine that we weren’t shot down for being pessimistic whenever we tried to talk to our loved ones about what we want for end of life care.
In palliative care, our goal is to give our patients a “good” death. I firmly believe that if we just talked about death and dying more openly, the tools to obtain a “good” death would be laid in the people’s lap. Palliative care will forever be here to support those who need it, but it’s time to empower the people. Let’s talk about death.
Ashley Purugganan is a current graduate student in the school of social work. She is spending the summer interning at Chulalongkorn Hospital in Bangkok, Thailand.
Absolutely wonderful post, Ashley. I love the story about the photo. You really made a difference in that woman’s life!