Moral Distress in Terminal Care

Although I’ve transitioned to Bundang SNUBH, I am still in contact with the hospice palliative team at Hyehwa SNUH as I translate the Well-Dying Act and work through the Moral Distress manuscript.

Looking over the raw data and analysis so far of the Moral Distress study has been challenging because the interviews with the five doctors so far has been using advanced medical vocabulary that I’m still in the process of learning. However, we’ve received the support of 서민정 교수님 (Dr. Min-Jung Suh) from Yonsei Severance Hospital to supervise our data analysis before we begin writing the manuscript. Qualitative sociological

One example of a theme selected from the raw data collected from the interviews:

사회 문화적 문제: 죽음 회피 – Sociocultural Issues: Avoiding Death

  • 자기 결정권 존중 부재 – Absence of respect for self-determination
  • 가족 간 합의 안 됨 – Absence of family agreement

For purposes of the paper, I can’t disclose too much about the data but I’ve learned a lot about the different aspects of end-of-life care that still struggle here at the nation’s renown academic hospital. Despite the progress in legislation and health policy, there are so many sociocultural issues yet to be resolved and worked through in order to adapt and mirror Western progress in integrative palliative care…

I’ll be returning to Hyehwa this Thursday for the SNUH National Palliative Care Symposium so I’ll be seeing my old affiliate and mentors at SNUH for the first time in 3 months and see their progress on the manuscript and the implementation after the end of the pilot study!


Eastern vs Western Perspectives

Notes from throughout the weeks on how end-of-life (EOL) care currently differs in Eastern and Western healthcare (based on between what I’ve observed in the large tertiary cancer care in the United States and South Korea):

  • Families must be consulted first before telling patients their true diagnosis. Good physicians with good intentions who have told patients without the family’s permission have been scolded and even physically attacked as a consequence.
  • Korean hospitals don’t believe much time is needed per patient and as a consequence have incredible patient turnover. This is a huge benefit to South Korean healthcare which easily beats the U.S. healthcare system in terms of medical accessibility. However, this also means lower quality of care regarding time with physicians.
  • Compared to MD Anderson Cancer Center’s APCU employing over 20 physician, SNUBH’s APCU employs merely one physician. With the incredible patient workload, Korean hospitals severely overwork their physicians if they want to provide the kind of quality palliative care patients need.
  • Korean families definitely do not trust hospice centers as they are often portrayed with scandals of mistreatment. However, with new funding from the government in-patient hospice centers are beginning to improve.
  • The U.S. government supports and funds hospice palliative care much more deeply compared to the Korean government. Only beginning in July 2015 did Korean government begin partially reimbursing palliative and hospice care for patients. Korean hospitals are only given 삼천만원 for palliative care teams which
  • The Well-Dying Act aimed to establish PCT across hospitals, establish the 궁립암센터 (NCC) as the national palliative care center, and shift toward home hospice rather than in-hospital hospice.
  • The need for the palliative care medical subspeciality is picking up momentum in South Korea but not yet established.

So many more but just a few from my notes when I first arrived in Bundang!

APCUs to the Rescue

I love this hospital…

I’m finishing up my manuscript on the symptom burden and characteristics of advanced cancer patients at a Korean tertiary care center (although I’ve published, this will be my 1st first-author paper ㅎㅎㅎ), and I can’t believe how much this hospital and this country has accomplished in the past few years…

In July 2015, Korean Health Ministry officially established hospice and palliative care.

In August 2017, hospice and palliative care was centralized so that terminal decision-making could be standardized across the top 10 hospitals in South Korea.

Now, Seoul National University Hospital of Bundang has developed an Acute Palliative Care Unit (APCU) in the model of Western in-patient palliative units spreading across Canada and the United States. Palliative care was formerly limited to hospice centers post-discharge from treatment facilities. Now that the idea of enhancing quality of life and symptom management has grown, Korea has begun to incorporate this idea into SNUBH’s own comprehensive cancer center.

Without giving too much away from the paper, only 17.5% of advanced cancer patients were transferred to government-certified hospice centers in South Korea. While all other hospitals in South Korea discharge terminally patients to convalescent hospitals, SNUBH is the first in the nation to use the APCU to integrate earlier palliative care and assist transition in EOL care. Since the APCU was established, the referral rate to hospice has increased to 46% of advanced cancer patients discharged from the APCU and increases to 88% if excluding patients who have died in the APCU. (This data is currently unpublished)

South Korean hospitals and those around me working so hard to incorporate the Well-Dying Act comment constantly on how behind South Korea is… But this alone in a matter of a few years in my eyes is so incredibly efficient.

*When the paper publishes, I can link the publication here*

Is Korea alone in this battle?

Upon reconnecting with a fellow Fulbright grantee who studied the Nigerian healthcare years back, I asked him about his experience observing trends in tertiary care centers–particularly regarding perception of death and dying in the hospital.

“I think the most apparent thing I’ve observed, at least in Nigeria, is there’s a tension between the fact that tertiary care centers are treated as places of death more than places of healing, yet also there is a reluctance to die anywhere except the home, with family, a religious leader, etc. Coupled, I think this is what in large part leads to biomedicine in terminal cases being only pursued as a last-resort, especially for those who cannot easily afford it. Why spend money only to die– and die in such an ‘impersonal’ place? The perception of hospitals as sites of death is beginning to erode, but in the wake of its erosion there is left a question of best practices to ‘ease’ patients into death if necessary– and additionally, how much of the motivation behind this new-ish impetus to increase the quality of death is due to a desire to change the stigma of hospitals and how much is due to the belief in the importance of the dignity of the patient is also left unclear.”

I was amazed. A country so far and so different from East Asia (in history, in government structure, in sociocultural values, in economy and so much more) was struggling with death and dying in such a similar yet polar path as South Korea. The following is only a tidbit of my response:

“Thank you for the thoughtful note on Nigeria’s take on the role of biomedicine… I have so much to say but I’ll briefly note some things. You’ve described the ethical tensions within EOL care so elegantly in just a simple email. It is actually so interesting to hear how this perception of tertiary care centers and overall path to the final phases of disease and death (임종) can contrast this heavily between the economic powerhouses in East Asia and growing nations in West Africa. This “reluctance to die anywhere except at home” reminds me of what Dr. Atul Gawande states in his book “Being Mortal” was a previously common perception of death and dying. In Gawande’s words, it’s “how things used to be” and “how things should go back to” before the obsession with modern medicine and research advancements pulled families in the West toward treating medicine as undefeatable weaponry and infallible miracles rather than as a final resort. Have you ever read about BJ Miller’s anecdotes on transforming the experience of death? He mirrors your thoughts on dying in the hospital as a a sterile, unimaginative, inhumane and impersonal experience that has taken over Western healthcare perceptions.

These cultural tensions surrounding patient preference, quality of life assessment, and survival outcome to determine appropriate and adequate EOL care culminates the core of my own research in Korea. I would love more than anything to visit a country and patient population where the opposite is true–where the discomfort (or distrust?) with hospitals overpowers the growing bias toward using medicine as weaponry.  This is what makes terminal decision-making and EOL care so complex. The balance between trusting and obsessing the power of science in survival outcome. I actually admire (to an extent) Nigeria’s current way of thinking that you’ve described…

In both Korea and America, hospice homes and enrolling in palliative care overall is treated as a cold death sentence whereas tertiary care centers (especially in Seoul) are seen as places of healing and hope. I wonder what factors led to this perception of hospitals as places of death and lack of hope in Nigeria… The long history of war and premature death?  A lack of specialists or physicians to treat the verity of illnesses that come into Nigerian hospitals? 

The dual motivators to begin “easing” patients into death are most likely both true! Changing the stigma of hospitals and the importance of a patient’s dignity to increase the quality of death are both motivators actually for the Korean Ministry to pass the Well-Dying Act (among many other political factors…). Again, so strange how these growing trends in bioethical thinking are shifting such different cultures toward one another in the same direction for healthcare.

I could talk for days about this… But one last thing: I recently attended a symposium at Yonsei where MD Anderson EOL specialist Dr. Sriram Yennu presented on the financial and logistical benefits of integrating greater and earlier palliative care into tertiary care centers… How discussing and incorporating symptom relief and pain management earlier in the stages of illness could save health centers so much money. From what I’ve seen and read (though still not enough), I firmly believe this.”

I hope I can have more conversations like this after leaving Korea…

Something You Said

In memory of my mother’s anniversary this past week

“Remind me again, Sora. What do I call these?” she asked in her perfect Korean. Her gentle, fragile hands suddenly tickled the bottoms of my bare feet, giggling as I begged her to stop. I roared in defiance.

“I don’t remember!”

These were the days you sat with me on our patio under the white blossoms, bribing me with hoddeok to speak with you in our native tongue. I remember collapsing in frustration letting my arms fall into your lap, my face embezzled into your neck.

Umma, we are in America, and I am American. Korean is hard and I don’t need it at school.”

Sora, listen carefully.” Her voice grew grave.

“This is who I am, and this is who you are. Hard things will come but when you remember this, you will remember me and know that we are with you.”

I sigh heavily and my attention quickly fades in the direction of our trampoline where Petey scampers away with pieces of my hoddeok (호떡). Who is we? Words that fluttered through my nine-year old ears, words of a mother who worried too much, words that meant nothing to me at the time—barely hinting the gravity it would soon carry for me.

Now I am here, standing where you once stood. So many years ago, where your own mother bathed and fed and tickled you. Before you met Appa (아빠) at the barbershop in Brooklyn, before Obba (오빠) and I came into your life, before the tumor stealthily nestled into its hiding place.

Now I am tripping and stumbling through a country you once called your home. A place you left to escape the painful past and burden of a broken family and broken times, but a place you longed for everyday since. I’m here barely standing but held in place by something you said to me once. I am barely aware of what strangers murmur around me in the streets, how the ajumma (아줌마) in the pyeonijeom (편의점) instructs me to find and use the sejeongje (세정제), why the girls in the park are laughing so heartily with their friends, where the men are heading to with soju (소주) bottles in hand.

Now I am just beginning to understand the place we come from. I feel the weight of its history as I pass the towering monuments and reconstructed temples of important men and legendary leaders you told me stories of. I recognize the jeong (정) you disciplined into my consideration for others, through my mannerisms. I observe the fragility of appearance and reputation, why it was so imperative to look and do our best in an advancing country. I whiff the aromas of fermented spicy cabbage (김치), red bean rice cakes (호빵), garlic marinated beef (불고기) you cooked into the walls of our kitchen back in Pennsylvania.

Now I am struggling to speak with the patients I came here to help and understand. I want so badly for you to be here beside me, repeating back the words I desperately grasp for as I try to communicate with the grandparents before me who have just learned that the chemotherapy is no longer working. My lips search for the right words that I can only think of in English—useless to this family who has never stepped foot in America, in Pennsylvania where I once thought my whole world was. I tell myself in secret this is what I deserve, suffering from the ignorance I stubbornly used to remove this part of myself in childhood embarrassment and laziness.

Now I am using the time I have, walking with these shadowfeet toward home, a land that I’d never seen or known. I’m shifting, less and less asleep from the dream I’d fallen into. I’m changing, more and more into the woman I want you to smile down on and confidently say is your daughter. I’m ashamed and proud (of how I lived / who I come from). I’m regretful and grateful (for how I treated your wish to pass on this part of yourself to me / the opportunity to finally start). I feel the pain you chuckled through when I slowly forgot how to pronounce the name halmunee (할머니) gave me. I regret the way I brushed away your words as if your greatest desire was nothing when contesting my own comfort and convenience.

I’m now made of different things than when I began, and I’ve sensed it all along. It is the land here that made me and is making me. We is the people who cooked and struggled and laughed and fought for the land that raised my mother. We is the country that shows me every morning here who she was, why she was, where she was when becoming the most important person in my life.

These feet you gave me, the prayers you whispered over me, the heart you molded so carefully after your own… They all brought me here. You are with me, reminding me this is where you come from. Where I come from.

Jeju Fulbright Research Conference

The Fulbright researchers were sent to Jejudo (제주도) in April to present our work to the Korean American Education Commission and Fulbright Korea community. It was my first time publicly sharing my journey to enter end-of-life care since my time in Boston, and it was an honor to meet and share with all of the ETA’s working throughout the mainland. After meeting some of the ETA’s, I learned about their own backgrounds in architecture, international relations, poetry, public policy, etc. and how they were using their Fulbright grant to grow their cultural backgrounds in their lines of work. I reconnected with old friends and mentors, gave advice to those heading to medical school, and met incredible young people with so many stories converging and leading us together at this point in time in South Korea.

Director Jai-Ok Shim shared with us on the closing day how important it would be keep ties with the people sitting around us in the conference room. We were a part of something great, creating cultural ties between two countries that could not be more different. I am grateful for this community and the chance to have something in common with all of the people in those short 3 days. I hope I can see more of you in the days to come.

Proving Palliative Care in Korea

I’ve learned that there are 3 clinical studies being headed by Dr. Yu-Jung Kim here at SNUBH overseeing palliative care through the new APCU at SNUBH.

  1. Prognostic Markers in Palliative Care in Advanced Cancer Patients
    1. Out of the goal 목표 of 200 patients, over two years 151 patients have been recruited for the study.
    2. Projected to end Feb 1st, 2019
  2. Standard Oncology Care VS Early Intensive Palliative Care
    1. Randomized Control Trial (RCT)
    2. Multi-center study across 10 university hospitals
    3. Started at SNUH under Dr. Young-Ho Yoon as a prospective cohort study, but hospitals pulled out because early palliative care requires palliative care specialists which most hospitals in South Korea cannot provide and thus cannot offer the “experimental group” for the study*
    4. Patient enrolled this morning into the control group with routine oncology care without intensive palliative care
    5. Projected to end June 30th, 2018
  3. Prospective Cohort Study
    1. Amongst 10-14 hospitals

*The medical subspecialty of palliative care has not been officially certified by the South Korean government yet. Korean physicians are following the American model of beginning the first national exam in 2019 to be certified by the Korean Association of Hospice Palliative Care (KAHPC) before it is officially certified by the government. This model occurred in America in 2006 by the U.S. hospice palliative association before the government.

Patients and their families are hesitant to enroll for several reasons apparently. These patients are spending hours on end in the hospital and know their time is limited. They don’t want to spend any more seconds in the hospital they feel trapped in any longer than they have to for mere survival. I completely understand… But I wish these studies would move forward faster. This work is definitely the kind of research I had hoped would begin when I first arrived…