End of life care is a topic rarely discussed in healthcare. In a sensitive and candid conversation, critical care nurse Seung Eli Oh, RN, MSN, CCRN, explores what it means to die well, with Jim Cagliostro.

Episode Introduction

Seung explores the need for more medical training on end of life care, and why quality of life should be considered in patient treatment decisions. He also encourages all families and patients to have timely conversations about their wishes, discusses the importance of dignity in death, and welcomes the return of spiritual care for terminally ill patients.

Show Topics

• The current state of end of life care in America

• A gap in understanding between doctors and patients

• Enabling meaningful conversations around quality of life

• Dignity in death and dying well

• Spiritual care and the end of life journey

• Serving as a model of leadership

4:04 The current state of end of life care in America

Seung said doctors require more training on end of life care conversations.

‘’….there are some interesting books out there that really talk about how health care in the modern age has become more and more secular. So it’s gone away from kind of the clergymen who used to have this conversation of end of life. Sure. You know, your primary doctor was probably the only doctor in your village who came and came to your home. So these conversations we’re having in your house. But now it’s all happening in the hospital. And it’s happening away from faith communities. So it’s much more secular now. And it’s all done by doctors, which there really isn’t that much training, to be honest. Most doctors that I talk to tell me pretty honestly that there really is no training in med school, if at all. You might get 1 class, you know, at most about palliative care, goals of care conversation. And I see that pretty realistically on the floor when we do have the situation when patients are dying and there are goals of care conversations about changing code status. A lot of these residents have no idea how to handle these conversations, and they kind of freeze up, and they’re not giving the patients really enough data. I’ve seen, like, the shifts towards palliative care. I think that’s really good. I think there’s more of that happening. But I don’t think it’s happening fast enough, and those conversations are still way behind. And I think the doctors are still very undertrained in terms of having goals of care conversation because it really is an art more than the science.’’

06:38 A gap in understanding between doctors and patients

Seung said doctors must have honest conversations with families around patient survival.

‘’But I think we also have a cultural issue here in America….. American medicine is reluctant to be paternalistic. They really don’t want to tell patients and their family how things should be done. They try to just give them data, and then the family gets to decide. But sometimes that doesn't always work. We live in the age of Google, and every patient and their families think they can Google everything and find out the information. But I find that even with patients who are highly educated, that when it comes to medical decisions, it's very difficult. And when it comes to their family, it's even more difficult. There are many more emotions that come into play. And I think a typical example might be a family member who's an engineer. If the doctor were to tell them you have 10% chance of survival, he sees the 10% much differently than the medical personnel who sees 10% as well. That's basically an impossibility. But as someone who works with computers, he might actually think 10% is not so bad, so we should keep trying.’’

08:00 Enabling meaningful conversations around quality of life

Seung explained the difficulty of discussing quality of life with families and patients.

‘’… I think a lot of conversations are happening in less than probably 5 minutes, and there's not enough time. And sometimes there's a really good family meeting, and we do have good conversations, and there is a full discussion. But a lot of times in emergency, sometimes it's a 5 minute conversation, and patients just want everything done. The family just wants everything done because they feel guilty. They want everything for their family. Without a full understanding of what does this mean for quality of life? What does it mean how this patient will die? And I think I've had one really good conversation where I try to tell the patient, you know, if you were to be intubated and go to ICU, this might mean that you never wake up. This might be a final time with your family. Versus if you were to go comfort care, you might have the last few hours with your family. You might be able to converse with them and tell them what's on your mind. I think those things are really meaningful in life that are not always talked about during, goals and care conversations.’’

11:10 Dignity in death and dying well

Seung explained the difficulties in having timely conversations around death.

‘’…Ideally, a patient would be surrounded by their loved ones, their family members, their grandchildren, just all around the bed and just holding their hands, Sometimes singing together, I've seen that. And I think that's such a meaningful way to spend your last breath and having your loved ones hold your hand. Now in the code blue situation when you're really sick, that's not always going happen. We try to get family in the room, but it's often a traumatic experience. I think that's not always the way we want to go. We really have to be realistic and say, if our chance of survival isn't that high, how is it that I want to go? Do I envision me going in the ICU bed with a nurse putting lines at me…..how much unnecessary suffering are we causing? You know, we promise to do no harm in medicine in nursing as well. ….There's a lot of futility, when these patients are so sick.’’

13:57 Spiritual care in the end of life journey

Seung said he has seen a rise in the need for spiritual support in terminally ill patients.

‘’I think spiritual care is a huge part of that. I think medicine and science has moved away from the spiritual aspect of things. And now we're starting to see a little bit of that come back. Even though it's not as religious now, there's still a movement towards people who want a spiritual atmosphere,…. when we took the spiritual out of the goals of care conversation, end of life conversations, I think that's made it very sterile or very secular. And now that some of the spiritual things are coming back into conversation, that makes it easier for families to talk about. …. How would they want to be remembered? How would they want to spend the last hour together with their family members? Those are really good things to think about and talk about it. ….that's really important and helpful.’’

18:18 Serving as a model of leadership

Seung said a focus on serving others helps to enhance patient care.

‘’… the best leaders I've seen in health care are the ones who really model servant leadership. I've had many managers who their description of their job was to really serve the team, serve other nurses, so that they can better provide care for their patients. I thought it was really empowering to say, you know, I'm going to serve the team rather than just be the boss. I think that's something I always think about as just being a leader and even outside of my job. How can I serve and do what is best for the other people? …that's such a great example of leadership.’’

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You’ll also hear:

Seung’s career history and experience as a rapid response nurse: ‘’… most of my nursing career has been critical care, rapid response. … you see a pattern of just the way we handle goals of care conversations and end of life care.’’

Healthcare providers must be capable of approaching end of life conversations more appropriately. ‘’… it’s almost like we've compartmentalized that to say, oh, well, that's .. an end of life issue. We're going to pass you on to the palliative care team…but death is something that every family has to deal with at some point.’’

The need to be honest with patients and families: ‘’I think often doctors are too reluctant to tell (families) like it is and really paint an honest picture of what the chances are. …I do a lot of CPR with my job, but CPR is only effective 10% of the time.’’

Helping families prepare for end of life conversations at an early stage. ‘’…. that's a difficult conversation, but it's something I really encourage family members to have.’’

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