What really matters at the end of life

BJ Miller’s TED Talk from September 30th, 2015

“Those who enter healthcare truly mean well. But we who work in it are also unwitting agents for a system that too often does not serve. Healthcare was designed with diseases, not people, at its center. Badly designed. Nowhere are the effects of bad design more heartbreaking – or the opportunity for good design more compelling – than at the end of life. Where things are so distilled and concentrated. There are no do-overs.”

This is a universal issue: To rethink and redesign how it is we die. To be a patient means “one who suffers” but there is suffering that harms and suffering that is necessary. The latter of which is where healing happens, where care giver and care receiver unite in compassion–suffering together. On the systems side, a different suffering is invented and unnecessary. A caregiver is one who cares and one who should relieve suffering–not add to the pile.

Palliative care is fundamental but poorly understood. It is not limited to end-of-life or hospice care. It is simply about comfort and living well at any stage. A palliative physician acts as a reflective advocate as much as a prescribing physician. Loss is one thing, but regret, quite another. Patients with life-threatening diseases need not only protection but the support to figure out what is best for ourselves over time. It’s a shift in perspective. Perspective, that kind of alchemy we humans get to play with–turning anguish into a flower. Hospice centers welcome death with warmth rather than repugnance. Hospitals are filled with blinking lights that don’t stop even when the patient’s life has, body is whisked away as if they never existed. In the name of sterility, hospitals assault our senses with numbness, with anesthetic–literally the opposite of aesthetic.

I revere hospitals for what they do–my cousin formerly living with a calcified tumor is alive because of them. But we ask for too much of them. They are places for acute trauma and treatable illness. They are not a place to live and die. We need to feel just a part of this planet in this universe which may matter more to some than whether they live or die.

In critical and chronic care, there are many people who are ready to die. Not because they had found some final peace or transcendence, but because they are so repulsed by what their lives had become. There are already record numbers of people living with chronic and terminal illness. We need infrastructure dynamic enough to handle seismic shifts in our population. The key ingredients are policy, infrastructure, training, systems.

  1. Tease out unnecessary suffering
  2. Tend to dignity by way of the senses “the aesthetic realm”
  3. Lift our sights on well-being, beneficience

Research has found what is most important to those close to death: comfort–feeling unburdened and unburdening to those they love; existential peace; and a sense of wonderment and spirituality. Sensuous, aesthetic gratification, where in a moment, in an instant, we are rewarded for just being. So much of it comes down to loving our time by way of the senses, by way of the body–the very thing doing the living and the dying. As long as we have our senses–at least one–we have the possibility of accessing what makes us feel human, connected. Primal, sensorial delights that say the things we don’t have words for, impulses that make us stay present, no need for a past or future.

We must make healthcare about living, making life more wonderful rather than just less horrible. This is the distinction between a disease-centered an a human-centered model of care. Caring can become a creative, generative, even playful act. This does not mean taking light death or mandate a way of dying. There are mountains of sorrow that cannot move, and one way or another, we will all kneel there. We must only make space–physical, psychic–to allow life to play itself all the way out. So that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end.

We cannot solve for death, but we can design towards it. Parts of our lives die early on, and that’s something we can all say one way or another. I’ve designed my life around this fact, and it has been a liberation to find you can always find a shock of beauty or meaning in what life you have left. Like that snowball lasting for a perfect moment, all the while melting away. If we love such moments ferociously, then maybe we can learn to live well, not in spite of death but because of it. Let death be what takes us, not lack of imagination.


Moral Distress in Terminal Care

These days, after volunteering I’ve been working on the qualitative study investigating moral distress among physicians and research nurses who interact with terminal and critically ill patients. I’ve been translating publications regarding legal barriers in end-of-life care as well as communication barriers regarding prognosis and end-of-life issues with adults in the advanced stages of life-limiting illnesses. While reading these papers, I wish more attention was also given to the caregivers and family members. Due to time constraints, the interviews we are coding and pulling themes together have limited analysis to the professors, physicians and research nurses as opposed to including the patient and family interviews as well.

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

A main theme that has come up is failure in communication and misunderstanding within patient care and autonomy. 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 hospital. Yonsei, Asan, and Sungmo Hospital may be more advanced in their hospice and palliative care, but the SNUH team is admirable in their endeavor to apply Western clinical ethics concepts to improve the consult and communicative services available to critical and terminal patients. There’s holes in the perspective of both families and doctors, but this paper is not the first to admit this and I hope I can continue learning about the themes that still arise since the passage of the 2017 Well-Dying Act…

Clinical Ethics Workshop

Taking note from models found in Norway, United States, Great Britain on how to proceed with creating a clinical ethics committee (위원희) to carry forward case deliberation (사례 숙의) rather than rely on a single expert (전문가). In order to improve patient diagnosis quality (환자 진료의 질 개선), Professor Yoo cites the UNESCO Guide to Establishing a Bioethics Committee (2005) to frame and educate a clinical ethics committee for life-sustaining treatment. These are the first steps needed to establish a systematic process to handling moral case deliberation at the end of life. Thew case review approach he appreciates most is from Norway published in 2012 in a paper titled, “Manual for working in a clinical ethics committee”.

The role and purpose (목적), attitude and outlook (태도), and the system (방식) needed for this committee requires:

  • support and advocacy (지지, 옹호)
  • professionalism (전문가적 입장)
  • neutral attitude (중립적 태도)
  • participative attitude (참여적 태도)

임상윤리위원회 Clinical Ethics Committee
임상윤리 지원 Clinical ethics support (CES)
전문가 Clinical ethics consultant (EC)
상담 Clinical ethics consultation (CEC)
사례 숙의 Moral case deliberation (MCD)

Ultimately, Professor Yoo evaluates the characteristics differing between MCD and having a committee/expert. He also evaluated utilization of the Socratic Dialogue (‘moral case deliberation) using the dilemma method. This begins with a guiding question (‘what is good care?’ or ‘what are the values and norms?’):

  1. Personal introduction, intro to MCD, determine goals and expectations of MCD
  2. Case presented briefly
  3. Presenter forumlates core dilemma (‘should I do A or B?’) considering the moral loss of each option
  4. Participants ask for clarification to answer dilemma question
  5. Table present perspectives, values, rules to connect back to original dilemma
  6. List possible alternatives
  7. Participants write explicitly their opiniona nd justification
  8. Feflect upon group consensus/decision
  9. Make practical appointments to evaluate closure of MCD
  10. Evaluate MCD and whether goals were met

Core Competencies for Healthcare Ethics Consultation, ASBH, 1998, 2011

Core Competencies for Clinical Ethics Committees, UK Clinical Ethics Network, 2007

Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants, ASBH, 2014

유상호, Professor at Hanyang University (karmaboy@hanyang.ac.kr)

Principles of Medical Ethics and Ethical Decision-Making (의료윤리의 원칙과 윤리적 의사결정)
김옥주 Professor Kim Ok-Joo
Seoul National University Hospital

“Killing VS letting die” (죽이는 것과 죽게 방치하는 것) emphasizes the different between inaction and omission when it comes to withdrawal VS withholding (치료의 유보 와 중단) of life-sustaining treatment, for example, intubation upon inability to breathe on their own.

Paternalism VS Patient Autonomy (온정적 간섭주의)
“On behalf of my patient or on behalf of my family member, I know what is best for them”
But the new law is advocating for greater autonomy on behalf of the patient themselves.

Reflective Equilibrium (반성적 평형)
American model for considering case deliberation was explained. The concept of egalitarianism over paternalism by philosopher John Rawls was discussed. Comparison of the top-down model (하항식 모델) using the deductive approach (연역적 방법) or the bottom-up model (상향식 모델) to consider ethical theories, principles, rules, judgments and actions during deliberation ethics (심의 윤리). Professor Ko also discussed the “Four Boxes” approach in clinical ethics by A. Johnsen to consider medical indications, patient preference, quality of life, and contextual features.



고윤석 Professor Koh Youn-Suk
Professor, Asan Medical Center, University of Ulsan

“First of all, do no harm” — Socrates
Professor Ko emphasized the need for medicine to never kill, cause pain or suffering, incapacitate, cause offense, or deprive others of the goodness in life. He reminded the physicians attending the workshop of our priority to improve the quality of life, not only extend the survival outcome for our research papers.

Criteria during ethical decision-making (대리 결정 기준):

  • Pure autonomy standard (순수 자율성 표준)
  • Substituted judgment standard (대리판단 표준)
  • Patient’s best interest (환자의 최선의 이익 표준)

Ethic consultation to ICU nurses
Life-sustaining treatment presented the second highest issue secondary to behavior-related issues (communication gap, inappropriate behavior of professional, inappropriate family behavior) as opposed to informed consent, resource allocation, etc.

Professor Koh published a paper titled, “Role of Hospital Ethics Committee on the Consultation of Near the End-of-Life Care in a Korean University Hospital” with Dr. John D. Armstrong from University of Colorado Health Sciences Center. In this paper, he discusses the ethical tension present when a patient and family members depend heavily upon their own personal values to determine the meaning of therapy for a critically ill patient. Discrepancy over the value of life-sustaining treatment in the view of a family or caregiver as opposed to a patient or the physician can be difficult to resolve in terms of medical ethical principles, especially when financial difficulties further widen the expense of therapy. These garner a need for a well-functioning hospital ethics committee (HEC) to resolve ethical dilemmas and conflicts in prolonged non-beneficial or unwanted treatments in the ICU. This need was heightened following the 1997 incident at Boramae Hospital when a physician was charged with murder for failing to persuade a wife to keep required therapies and discharging a postoperative patient after discontinuing life-sustained therapy. Prior to this case, physicians were to withdraw life-sustaining treatment with consent of the patient but are now understandably reluctant to withdraw life-sustaining treatment from a critically ill patient.

Korea’s Barriers to Preparing an Advanced Directive (AD):

  • Society (74%) …as opposed to 29% in Japan
  • Medical Culture (48%) …as opposed to 19% in Japan
  • Lack of Knowledge (71%) …as opposed to 9% in Japan
  • Dislike (50%) …as opposed to 30% in Japan
  • Family Resistance (71%) …as opposed to 21% in Japan
  • Px (44%)

Withholding 89%
Withdrawing 11%

Physiologic futility VS benefit-based futility
(무의미 — futile)

This workshop brought up memories of my mother’s treatment. The insistence to keep trying was noble and hopeful but when it came time to withdraw life-sustaining treatment it was more painful because we had held on for so long. No one could comfortably say any of this at the moment, but I hope one day these conversations can become integral in terminal decision-making as we increase understanding of the ethical principles at play when a doctor suggests or biases end-of-life treatment. The pain that remains would have been saved.

Pilot Study

In our hospital, we are conducting a pilot study (저희 병원에서는 시범사업을 통해요). I hope we will have meaningful results through our Life-Sustaining Treatment Pilot Study (연명의료 시범사업을 통해서 의미있는 결과가 만들어지길 소망합니다).

(Blurbs from my hospital journal from our team meeting last Friday… Slowly getting better at spelling)

As the data is being collected for the LST study from October until January, I’m currently working on 4 cases involving moral distress in terminal patients. I’m also reviewing surveys that will be conducted the first week of December (next week so soon… o___0) to determine obstacles during terminal decision-making for physicians, nurses, patients and families in conjunction with Dr. Kazyoshi Senda who lectured on “Advance Care Planning Promotion and End-of-Life Discussion around Health and Long-Term Care Community” at the ASCO Palliative and Supportive Care Symposium my first week here at SNUH.

The survey is called “Medical Decision Behavior and Recognition Survey for Physicians” (연명의료결정법 시행방안 마련을 위한 의사의 연명의료결정 행태와 인식에 관한 설문조사). There’s a lot of words I still don’t understand in the survey, but I’m helping the research nurses distribute them as I volunteer and hope to go through the quantitative data analysis with the research nurses soon.

Yonsei Cancer Center

Among the hospitals in South Korea, only a handful made early initiatives to establish hospice and palliative care before the passing of the Well-Dying Act. In addition to Catholic hospitals who started the hospice movement early in the 1970s is the Yonsei Severance Hospital’s Cancer Center (연세암병원) which held its first Advanced Palliative and Quality of EOL Care Symposium on November 18th, 2017. Dr. Sririam Yennu from MD Anderson Cancer Center who wrote sections of the hospice guidelines was invited as a keynote speaker and Dr. Yu-Jung Kim, the country’s expert on pain and symptom management and my personal mentor at SNUBH, closed the symposium.

The effects of an integrated palliative perspective and future directions of the country’s movement in palliative and comprehensive care for advanced cancer patients was addressed during the symposium. Due to direct translation throughout the symposium and more English-speaking lecturers, I was able to understand the majority of the seminars and learned about the current progress of the palliative movement outside of SNUH and throughout the country! The heated discussion about how to incorporate a non-lucrative movement into Korea’s healthcare system based on models such as Australia, Japan, UK and USA reminded me how difficult a movement must be which requires millions if not billions.

Bringing hospice care from the hospital back to the home was also discussed. Due to the lack of nurses in Korea and current restrictions on opioid administration outside of the clinical setting, following America’s model may be difficult to imitate in the future.

Another last emphasis of the symposium was how to convince the general public as well as administration leaders focused on a money-making hospital business model that integrated palliative care is necessary. Not only does palliative care increase quality of life, there have been several studies on the effectiveness of increasing lifespan, managing psychological symptoms, and saving hospitals money. By avoiding unnecessary and costly life-sustaining treatments (연명의료) and visits to the ICU (중환자실), a focus on creating advanced directives (사전의료의향서) upon hospitalization with critical, chronic and terminal patients (말기 환자) can be beneficial and even cost-effective for the Korean healthcare system.

This symposium was awesome.

Korean Charities

Korea’s branch of the Salvation Army raised money to donate goods to patients and their families staying in the cancer ward. Since the inception of the Well-Dying Act, more charities and non-profit organizations dedicated to the well-being of terminal patients have sprung up. Debates on physician-assisted suicide and active euthanasia are still heated throughout Korea, but attention toward the need for greater hospice and palliative care has increased in the media as a result.

The bags included traditional rice cakes, tangerines and persimmons, chocolate pastries and brochures on the resources available to family members of terminal patients.IMG_0553 2.JPG

Pepero Day

November 11th is deemed “Pepero Day” (빼빼로 대이) because of the date’s numerical resemblance to the country’s famous chocolate stick snacks. The day is dedicated to couples but people often homemake the snacks from scratch and share them with friends and family as a gift. Patients can become lonely in the cancer ward and family members are often isolated from the outside world while thinking about and discussing treatment options all day. The volunteer team raised money to buy pepero snacks for family members to celebrate the holiday together. Again, photos with patients are not allowed.