End Of Life Conversations With Families

jeastridge, BSN, RN

Talking about the end of life is not for the faint of heart. There are many obstacles, including our individual sense of immortality. It's such a serious topic that I'd like to start with the story of a man who came to see his doctor.

He said, "Doc, I'm sick. My face stays red and my eyes are popping out." The careful doctor did a thorough exam and said, "Let's run some tests." At the next visit, the kind doctor looked at his patient and said, "I'm sorry to tell you this, but I can't find anything specific on your tests, but I think you are going to die. You had better get your affairs in order."

Discouraged, the man left the office and thought to himself, "Well, if I am going to die, I might as well do it in style. So he went downtown and ordered himself the finest suit of clothes money can buy. The salesman asked him what size shirt. He said, "15 1/2, and 34 sleeves." The salesman laughed and said, "There is no way you wear that size." The man said, "I oughta know what size shirt I wear. I've always worn that size. Ever since I was 15!" The salesman looked askance and said, "Well, I'll sell it to you but it'll make your face turn red and your eyes pop out."

Funny, but the truth is, there is a 100% chance that we are all going to die. My favorite doctor sometimes has people ask him, "Doc, am I going to die?" If the patient and the situation can absorb it, he will smile and say, "Why, yes, and so am I."

Despite the inescapable truth, we often get up each morning and the first thing we do after getting our creaky bones into a standing position, is to pull on our cloak of immortality-almost as if by not talking about it, we can delay the inevitable. Know that caring for our loved ones is a privilege and responsibility. It is the right thing to do.

In 1 Tim. 5:8 we read "If anyone does not provide for his relatives, and especially for his immediate family, he has denied the faith and is worse than an unbeliever." It is not an easy directive, but it is part of our walk. This directive could expand further to refer to the family of God-the Body of Christ. As we consider how and when to have this conversation, I'd like to offer a few tools and ideas about how to have this talk, either with your elderly loved ones or with your children. As Jesus says in Matthew 11:28, "Come to me, all you who are weary and burdened, and I will give you rest."

It is an established fact that we all want to have choices and dignity. We want to have control of our finances and our transportation as long as we can. We all want to have peaceful, loving relationships that sustain us to the end. We all want to live well as long as we can and make a graceful exit when the time comes. If our desires are so similar, then why is it so hard to talk about death and choices surrounding this inevitable transition?

In a word "fear." In Scripture, we see Jesus saying multiple times, "Do not fear" and the refrain is repeated throughout the Bible. He knows the dust we are made of. He understands and walks with us through the valleys of the shadow. But just knowing that the enemy is FEAR-naming it-can help us face it.

There is this joke I've heard about a time when a church was having a revival. On the last night of the revival the preacher was really getting into his sermon. The choir was humming in the background, saying amen and swaying to the cadence of the preacher's words. Finally, the preacher got to the pivotal moment in the sermon and said, "Who wants to go to heaven?" Everyone in that choir raised their hand up high. In fact, they all started standing up and waving their hands. Only one older gentleman sat there, arms firmly glued to his side. The preacher turned around, zeroed in on him and boomed through his mic, "And you, sir, don't you wanna go to heaven?" The old man answered calmly, "Why sure I do. I just thought you were getting up a bus load to go right now!"

Yes, we all want to go to heaven-tomorrow!

So let's get down to some nitty-gritty some practical stuff that can help us through having the tough talk:

Words matter. I have a friend who shared with me how hard it was for her to relate to the language the hospice team used to answer her questions about "how long" it would be. They said, "Your mother is fighting." Or "She's a fighter." For my friend, those were very difficult word choices. She would much have preferred, "We don't really know why it takes so long sometimes." We can all probably think of phrasing that is not our favorite. One that is hard for me is, "There is nothing more we can do." I disagree because there is always something we can do, even if it is holding the families' hand or offering comfort care.

Some people may respond to the language the doctor in the joke uses: "I don't know what's the matter with you, but I think you are going to die," but not many. Most of us appreciate a little more finesse in word choice.

Timing matters. Setting matters. Think about THE TALK ahead of time. Know yourself and your own motives and issues. Know the person you are talking with-their needs and their fears. Consider your past relationship and tailor your approach. If you are the engineer, analytical type, be aware that your list may offend or intimidate your artistic child or parent. If you are the artistic one who loves visions of the afterlife, consider that your analytical parent may call is all "hogwash." Neither is wrong, just different.

Start with prayer

(on your own or together, if the situation allows)

In James 1:5 we read, "If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him."

Ask questions

I tell people that we often have to bring up the topic of a move, a change in driving habits, or healthcare choices multiple times before a frank conversation is possible. The goal is for the person you are talking with to have time to consider the choices involved and to come to a point where they own it themselves. In scripture we see Jesus use this technique multiple times. "Who do you say that I am?" By asking the question, he invites the listener/reader to come to a decision point for themselves.

In Atul Gawande's book, Being Mortal he suggests using the phrase, "I am worried..." Other phrasing might be, "Have you considered..." or "What are your thoughts about making a change..."

Recently, I was talking with a mom and her daughter. The daughter did not appear to welcome me into the hospital room, so I entered cautiously and kept my voice soft and my comments generic, essentially putting a moistened finger up to test the direction of the wind. I asked about plans for going home and the woman, who was becoming very frail, set a hard line that indeed she was going back to her home. The daughter, with a look of helplessness, admitted that finances were an issue. So we carried the conversation toward ways to keep her safe at home. After we had established bridges amongst ourselves, I was able to introduce some ideas that help make assisted living more affordable. At the end, we all prayed together and there was a greater sense of hope in the room. The idea of exploring assisted living crept in and sat waiting in the corner.

Evaluate your resources and get help, if needed

Our God is a god of abundance and love. He does not leave us stranded, abandoned. He comes to our aid with armies of helpers. In the story of Elisha and the Arameans, (2 Kings 6) he tells his servant, "Don't be afraid. Those who are with us are more than those who are with them." And then he prayed, "Oh Lord, open his eyes so he may see. Then the Lord opened the servant's eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha." Remember, that when things look hopeless, we have the armies of God on our side-if we ask.

Invite your pastor, parish nurse, doctor, eldercare lawyer, social worker, counselor or respected friend into the conversation. Or maybe you have a sibling that is just better at dealing with these topics. Acknowledge that and circle up. If you need to have a difficult conversation, get an appointment with your family member's doctor to discuss it first, or write them a letter. It is often too hard to do this in front of the family member, and in a short office visit, it is hard for the physician to know what is really going on. Some attorneys can be very helpful in facilitating end of life conversations and in shining a light on the legal path ahead. Some even specialize in Elder Law or have a special interest in this part of law.

Covering the basics

When it comes to end of life discussion, remember that as long as you or your loved one is able to speak and make their own decisions, advance directives do not come into play. The difficult part of course, is when dementia creeps into the room and lies stealthily under the rug, ready to trip us all up, popping in and out of the conversation at will. Or when in the course of a hospital stay, medication and treatments make decisions impossible for the patient-that's when our loved ones and care providers look to us.

Studies show clearly and convincingly that medical professionals often don't want extensive interventional care at the end of life. Many of us have a strong preference for "AND" - or allow natural death. And I would stress that the phrase refers to "when that time comes." As long as there are reasonable hopes for recovery or for meaningful life, then none of this applies.

Quality vs. quantity of life

As our physical abilities diminish over time, the definition of quality changes. What are we content with? What is a "good" life? When does quantity bow its head to quality?

In times of crisis, we become advocates for our loved ones. I like to stress to families that our job in making end of life decisions is not making the choice we want but making the choice they would want.

Every decision is temporary

We do the best we can with the information we have available to us today. Tomorrow things might be different. You might get mom all settled into the perfect place and then she falls and breaks her arm and the situation is different-all over again. But when our loved ones are struggling with the hard transitions, it can be very helpful to let them know that "we will try this" and see how it goes. If we need to backtrack, we will. Almost always, there is another direction to go in, even if we can't see it right away. Change is easier to take in tiny bites: first the help coming in, then the move, and then later (if possible) selling the house.

Sometimes it doesn't happen

Sometimes, despite our careful planning, the conversation just doesn't happen. Our loved ones resist us at every turn. Our kids don't want to hear it-no matter how hard we try. [if this is the case, you might try writing a letter, expressing your wishes and give a copy to each child or tell them you just need 15 minutes of their time to read over it.]

One of the lessons we learn in life is that sometimes we can't make everything turn out ok. People have free will and they can make poor choices. We can find ourselves in the uncomfortable position of having to stand by while our loved ones make decisions we do not agree with. The best policy then can be patience and love-at a distance. Maintaining a loving relationship while staying slightly removed can be the best help.

We have to know that while we never give up, we also have to refrain from beating our heads against a wall. Maybe the time is not right; maybe they need to come around to their own decision time. And sometimes bad things happen that are just out of our control.

Recently, I participated in admitting a woman with end stage liver cancer to hospice. She was adamant that she wanted "everything done" and told her physician as much that morning. It was sad, because she already had many signs that the end of her journey was close at hand. Further adding confusion to a muddled picture, was the unsettled feeling the family had that medical science had not done enough. They wanted more time. They were beyond disappointed. They were angry that their precious loved one was dying.

Into this picture, comes the hospice nurse, treading through rough waters, pulling a chair up to the bedside and asking questions. After a few minutes, it was clear that this dear lady had set a stubborn course of interventional care for the benefit of her bereft children. And also because she was angry. But as we discussed what it really means to be resuscitated when your body is broken, I could see her eyes soften with tears as she resolutely said, loudly enough for the children to hear, "I don't want any of that." With her statement, the tide of anger washed out of the room and was replaced by a slow seeping of sorrow as tears flowed freely and preparations for a final departure began.

As Henri Nouwen's states in his Bread for the Journey, "Dying is returning home. But even though we have been told this many times by many people, we seldom desire to return home." Yes, we know that someday that bus is going to leave the station and we are going to be on it. I hope that this discussion is helpful as you consider how to talk over preparations for the final trip home with your loved ones.