FINAL THINGS: Difficult Conversations

It can be challenging to communicate with terminally ill patients and their families. Dr. Ed Rylander emphasizes the importance of open and honest communication, even when discussing difficult topics like death. He also discusses the role of faith in patients' understanding of their condition, stating that faith and medical facts are not mutually exclusive.

Transcript

FINAL THINGS: Difficult Conversations
GUEST: Ed Rylander, M.D.
Season 3, Episode 25

Ric Shields (00:00):

Welcome to the DoorWays® Ministry Network podcast.

(00:11):

Thanks so much for joining us on this episode. My name is Ric Shields. I'm your host and the director of the DoorWays® Ministry Network.

(00:18):

We're currently in a series of episodes I've called “Final Things.” In a couple of earlier episodes, I interviewed Mike Shipman, he's an advisor, and we spoke about advanced planning. We covered things like wills and trust and property interests. And then we had a follow-up episode where we spoke about pre-planning and the importance of having discussions with family about our final wishes.

(00:40):

In the days ahead, I'll interview a hospice chaplain, a grief counselor, and a pastor who will share with us about a theology of death and dying. I think it's something we really need to hear about. We're also going to interview Jack Hayhurst, the owner and director of Hayhurst Funeral Home in Broken Arrow, Oklahoma. He's going to share with us about how we can provide a meaningful memorial service to honor our loved one.

(01:02):

But today I'm happy to introduce you to my dear friend, Dr. Ed Rylander. My wife Sheila, and I have been friends with Dr. Ed, his wife Shelly, and their family for 40 years. He is board certified in both family medicine and hospice and palliative care. In addition to patient care, he also serves as the vice president of the Board of Trustees of DoorWays®, our parent organization.

(01:27):

Dr. Rylander, thank you for taking the time to share this episode and this important conversation with me today.

Dr. Rylander (01:33):

I'm very, very happy to be here with you to talk and to share a little bit, and I hope we'll be able to get some people, some information that'll be helpful to them in the long run.

Ric Shields (01:45):

Dr. Rylander, I'd like for us to focus today on the topic of difficult conversations, especially as it relates to speaking to patients with a terminal illness. I'm very confident you've had many of these conversations, likely more than you can even remember in your 40 years of practice as a family medicine physician. But is there a particular conversation you've had with a patient over the years that seems to have impacted you the most?

Dr. Rylander (02:10):

Basically, to set the stage, I was a young physician, had been in practice about eight or 10 years, and there was a young man in his teens, and he was a victim of a neurodegenerative disease, and he got worse and worse. It gradually got to the point where he wasn't able to continue to breathe for himself, came into the hospital with a bad pneumonia, and we had to put him on a ventilator and give him antibiotics and take care of him for about 10 days as he recovered from the antibiotics.

(02:47):

But he never was able to start to breathe for himself again. And I just remember having to talk to his mother and father and the young man himself about the difficulties that lay ahead for him, being on a, a ventilator for the rest of his life, and as he would decline and, and continue to, to deteriorate and get worse.

(03:10):

And we spoke for quite a while over a series of days and came back to the point where he finally decided that what he really wanted to do was to have the ventilator turned off and to be allowed to pass away. And that was probably one of the most difficult things that I've had to go through in my life. And a lot of the things that I dealt with, talking to his parents and talking with him over that time, really formed my professional life, made me think that there might be a better way for me to be able to talk to people and, and help people and work with people, because I really, after medical school and residency and even in practice, wasn't prepared for that kind of a discussion, that kind of an interaction.

(04:02):

And,  then when we went ahead and,  after a couple of days of making sure that that was the right decision for him and his family then turned the ventilator off and saw that he wasn't going to be able to breathe and keep himself alive, having a teenager pass away that way probably,  affected me more profoundly than any of the other interactions up to that point in my life.

Ric Shields (04:28):

Does it ever get easier to have a difficult conversation with a patient?

Dr. Rylander (04:33):

I think there's a baseline difficulty. I feel like it's always a challenging thing, but it's like anything else in life and it makes it a little bit easier, a little bit more smooth and a little bit better able to anticipate some of the hard questions that'll come up when you've done it year after year after year. I think that multiple events, multiple times at first, is just like anything else. The first time you do something, it's extremely difficult, but then it's almost like you get good at it or you get at least functional at it to where you can anticipate people's needs and help people move through, a very hard time, a very challenging time.

Ric Shields (05:18):

Do you really think it's necessary to tell a patient that they're dying? I mean, don't they already really know it?

Dr. Rylander (05:24):

It is something that a lot of people realize, a lot of people know, a lot of families realize. However, there's a, a process I think that you go through that is when I teach the residents, it's kind of an unmasking of a situation where, um, mom and dad are older, the family is adult, but younger, and everybody knows that dad is in the process of passing away, but, but nobody wants to talk about that. Dad's the strong guy that's always kept the family together, and nobody wants to really kind of move through the process. That's important for them to start to deal with some of the issues and, and the tragedy that's going to happen in their lives. And I think that by having that conversation, by opening that topic, it's almost that you give people permission to start to deal with it in a diff deeper level, a different way.

(06:29):

I think the other reason for telling someone they're dying is that people tend to live their life differently if they know that it's at a limited time, it's a time of healing for some relationships, it can bring a time of closure for some issues that are going on. It allows people to deal differently than they would have without that information.

(06:56):

And I think it's important as medicine has advanced and doctors have gotten better at predicting terminality, we're by no means an exact science. So, it's not that we're telling people on June the 27th they're going to pass away. It's that we're telling people that more likely than not, if their illness runs the normal course, they're within six months of dying or they're within three months of dying, or something along those lines, so that it's not a, a particular date, but it's a, an idea that they are certainly going to do what we all do, which is die, but there's a much more immediate of an effect.

(07:40):

And it is time that if there are things that they need to say, if there are duties that they need to accomplish, if there are things that they've left to this part of their life that, that, now it's time to take those steps to do those things, to close those issues out to, to be ready to go with a clean slate. And I think we all deserve that. If, if the doctor knows it, I think that it's his duty to, to make sure that the patient realizes it and sometimes they think they're dying and they're not dying, and it's also important to deal with that. So, they don't live their life as if they're on the way out when they really aren't. And they're going to have to pay off those credit card bills they've run up.

Ric Shields (08:24):

And their student loans.

(08:26):

You're a faculty member for the In His Image residency program. It's a family medicine program here in Tulsa. You just indicated that you have to speak with residents about this often. When you talk with them, what do you tell them? How do you start the conversation? What kind of things do you say?

Dr. Rylander (08:43):

When I teach the residents, I kind of give them patterns, things to go by checklists, things they can remember. And what I tell them about end-of-life activities and, and difficult decisions is first off, just getting permission.  It’s important to ask the patient, “Is it okay that I talk to you about some of these things and, and about some of my observations and the things that are going on?” And then once you've got permission to open the topic, I teach the residents to ask the patient what their impression of the circumstances and situation is. So that rather than starting out by saying, “I'm the doctor and I'm going to tell you this,” you start out by getting permission and then asking them what do they understand that the situation is? What do they understand their circumstances are?

(09:37):

And a lot of times, as we talked about earlier, they kind of have already realized that, that that's the problem. That whether it's they're passing away, whether it's they've got an incurable cancer, they've got a, an infection or a fungus that we can't take care of, that they, they've kind of gotten the idea because they've seen the scans getting worse or they've taken the medicines and realized that the medicines aren't working. So most of the time, your job is to open the, the topic and then to correct any misunderstandings or misapprehensions that they have and to, to move them through the process of realizing if they haven't or of putting into application, you know, what, what does this mean for me as a person?

Ric Shields (10:24):

I can imagine patients having a conversation with a young resident and saying, "Okay, thank you, but I want to talk to a real doctor now." I suppose that happens a lot.

Dr. Rylander (10:34):

It’s less than you would imagine, but depending on their level of residency and what the situation is, we do get that and we're certainly willing to respect that. And you know, sometimes they'll even get the old gray-haired guy coming in to talk to them about it and settle them down and help them to understand that, yeah, it's really everybody on the team has come to this same conclusion. But the other thing is people, that denial process is, is one of the very strong defense mechanisms we have.

Ric Shields (11:06):

That's a powerful thing.

(11:07):

You're listening to the DoorWays® Ministry Network podcast. My name is Ric Shields, and for the next few episodes we'll be addressing the topic of “Final Things.” I'm joined on this episode with my friend Dr. Ed Rylander, who has served as a family medicine physician in Tulsa, Oklahoma for the past 40 years. Today we're talking about those difficult conversations that physicians have with their terminally ill patients. Dr. Ed, you've had many end-of-life conversations with patients over the years. What kind of things do you typically cover in those?

Dr. Rylander (11:39):

You know, I think the most difficult conversations are around advanced directives and do not resuscitate orders, patients that are at the end of their life that are needing to decide on what they want done or not done, how they are going to spend the final part of their life.

(12:02):

I think the other areas that we talk about a lot are infections and problems, issues that don't have a good answer in medical science today. We think clearly, it's 2024 and we must be able to fix this, or I can go to the Mayo Clinic or MD Anderson or someplace and get an answer. And it's just not true. Sometimes it's an incurable situation that we're dealing with. It's very challenging oftentimes for patients to accept that and understand that.

(12:36):

The other things that we come up with that are, are difficult decisions are within a relationship when there's been infidelity and there's, infection or something that must have come from someone else or there's a problem with genetics and either your situation of, of who you think your family was, needs to be modified a little bit or the, the way that your inheritance genetically has happened has caused you to have a, a significant problem where you'll need to have therapy for the rest of your life.

(13:10):

So, it's a, a wide variety of things and they share the emotions and the difficult acceptance factor across the board.

Ric Shields (13:22):

Have you worked with people who think that engaging in the difficult conversation about the end of their life may somehow show a lack of faith that would prevent God from healing them?

Dr. Rylander (13:33):

That's a situation that I've dealt with extensively over the last 30 or 40 years. There's a lot of people that have a very strong belief pattern that is easily misunderstood to be exactly that. They have a very, very strong belief system in place, and it's difficult for a doctor to tell whether that is denial or whether that is understanding and putting faith into practice for them. But it is something that as many as five or 10% of the people that I work with will have some level of that involved in their life and in their belief system.

Ric Shields (14:23):

I'd venture to say the number is higher than that, but there may be people that just don't express that when they're talking with you, because that means you already are one of those people who aren't speaking in faith with them. You can't agree with them, and so they really can't converse with you about it.

Dr. Rylander (14:39):

Could very, very well be the case,

Ric Shields (14:42):

And that's one of the reasons why we will also speak here in the next few weeks with Pastor Phil Taylor. He's the Pastor Emeritus at Carbondale Assembly of God, and we're going to speak about a theology of death and dying. What does that look like? That will be a, a good conversation.

(14:58):

You graduated from Oral Roberts University with a major in pre-med biology. I believe you also attended medical school at Oral Roberts University and completed your residency at the former City of Faith. I also understand that you knew Oral Roberts personally, and you are aware of his thoughts on the idea we've just discussed - this idea of the positive confession. Can you share his thoughts with us?

Dr. Rylander (15:21):

I was very blessed, I guess you would say, to be able to meet with him several times. And I offered my understanding of his thoughts, and I hope that I paraphrase it, but since he's passed away, it'll be hard for us to be, be sure I'm completely...

Ric Shields (15:37):

That's right. Our understanding of his thoughts. There you go. It's called hearsay, a court of law.

Dr. Rylander (15:42):

Exactly. When he was sharing with me about e exactly what we were talking about, about the positive confession, it was important for him and his positive confession was always based on an understanding of the reality of a situation. And, and often he would tell me when I was taking care of him, "I hear you're saying this and I hear you're saying this,” and that “the natural world would look at that this way" and would let me know that he had heard what I was telling him. He understood and acknowledged the facts of the situation, and, and then he would ask me to agree with him in prayer that the faith statement would be this in spite of what the natural world was looking at, was saying and was doing. So, it wasn't that he was not hearing or accepting or understanding the facts of the situation. It was that he was interpreting them based on the promises of God to him and his life.

(16:50):

So, I, I think that's the best way that I could portray his presentation of a positive faith statement about a situation. It wasn't blindness to it. It was realization of a higher reality realization of a more important truth that he would stand on and believe.

Ric Shields (17:11):

Are there things that we as relatives or friends should not say to a terminally ill patient?

Dr. Rylander (17:18):

Well, I, so I think the most important thing is that you say things to them, that you interact with them, that you talk with them, and that you do it more and, and resist the temptation to avoid them because of a difficult situation. I think telling them about other people that had similar illnesses, or problems and had different outcomes, or telling them that you know what it's like to go through the situation unless you have truly gone through that situation. I don't know that it helps them to have you tell them that you think that you know what it's like.

(18:01):

I think there's other things, you know, that sometimes we talk to them and try to reassure them by telling them how it makes us feel that they're going through this and it's well intentioned and it, you know, it, it's like, "Well, it is really going to be hard to say goodbye to you," or "You don't look sick, you look well," or something that kind of puts the onus on them, and it, it's better to avoid those kinds of things and, and just tell them straight out, “You're very important to me. I love you. I want you to be well. I don't want you to have this kind of thing,” than to have them feel like there's a little bit of a burden or a little bit of a difficulty that their death is going to cause in your life.

(18:50):

I'd preface that by saying it's important that you talk to them, and I don't want people to think, oh, there's things that I'm going to say wrong, so I'm just going to avoid the situation completely. It, it's not worth that. But, while you're talking to them, focus on them and good things and pleasant memories from the past, things that you've done together in the past that were enjoyable for both of you, or at least that you thought were enjoyable for both of you. And, and try to spend more time with them if you can, in the latter part of their life, because a lot of people, as they approach the end of their life, will feel more and more alienated and, and isolate themselves.

(19:30):

And you have to push against that a little bit and say, "I know you don't want to have a bunch of people around you while you're looking sick and feeling bad, but I think it's important that we get together and, and we can just, you know, read the Bible and pray, or we can share, or I'll come over and we'll just watch a series or binge on Netflix" or whatever it is that they enjoy doing. But that human companionship, while we're going through a difficult time like that, is not replaceable. It's not something that a zoom meeting like this or a phone call or a text message can take the place of touching your hand or holding your hand or praying with you, or you know, sharing scripture with you or sharing good memories with you. So, fight that natural human tendency that we all have to, to avoid that situation.

Ric Shields (20:20):

What about if I bring my laptop over and we, you know, Google things and we find out all the answers? Because in this great information age, we're so fortunate the internet has made so many of us experts, especially in medicine, we can diagnose things and maybe, maybe it's a good idea to not bring your laptop with you and have that kind of a conversation.

Dr. Rylander (20:39):

Everybody's different and I understand what you're saying and, and part of me just because it would be simpler for me if they didn't, would say, yeah, that's the right answer. But it is better to go and do that than not to go. It's better to be careful when you're doing that and make sure that you know what you're reading about is actually coming from Mayo or Johns Hopkins, or you know, someplace other than some guy's mother's basement, that all he does is write those things on the internet and, you know, says what he thinks there. So being very selective, if you're going to do it, try to do other things, but if you are going to go forward with that, then check your sources and verify it and make sure before you get unrealistic expectations stirred up in somebody that's dealing with a, a, a situation like that.

Ric Shields (21:34):

I hope you'll join me next week as we continue our series on final things. Dr. Ed Rylander will join me again as we discuss hospice. It's a topic I think can be misunderstood. Some are suspicious of it; others prefer not to think about it. I understand, and that's why we want you to have good information about hospice before you need to make a decision about it.

(21:57):

End of life conversations can be difficult in my experience. They can be made easier when we know we are prepared for what happens next. I really like what David wrote in Psalm 139:16. It reads like this in the New International Version. "All the days ordained for me were written in your book before one of them came to be." Did you catch that? "All the days ordained for me." What does that mean? Well, it means every day you live is filled with purpose.

(22:29):

I assure you; you'll not die a day earlier than God has ordained and neither we die a day later. He knows that number of your days, and you will live each of them for a reason. And what happens when those days come to an end? When David also wrote about that in the 23rd Psalm, verse six, I won't be surprised if you know this verse. "Surely goodness and mercy will follow me all the days of my life, and I will dwell in the house of the Lord forever." The days of your life will end one day, but the end of our days here is just the beginning of our eternal life as we dwell in the house of the Lord.

(23:08):

We can prepare our hearts to meet the Savior with a simple prayer. You may have prayed something like this before, but it won't hurt you to say it again and reconfirm your commitment to following Jesus. By the way, you can look it up on the internet. It's called the Salvation Poem, written by my friend Matthew McPherson, and it goes like this,

(23:28):

"Jesus, you died upon a cross 

and rose again to save the lost. 

Forgive me now of all my sin, 

come be my Savior, Lord and friend. 

Change my life and make it new 

and help me Lord, to live for you."

(23:45):

 It really is that simple. If you'd like more information about what it means to follow after Jesus, go online to salvation poem.com for free resources. You can also drop me an email if you have questions or suggestions about this topic of final things. My address is info@DoorWays.cc.

(24:05):

Until the next time, this is Ric Shields. Thanks for listening.