Understanding Faith's Role in End of Life Decision Making

[This was a talk given at the Schaetzel Center at Scripps Memorial Hospital in La Jolla, California on July 29, 2014]

Good morning and welcome. My name is Tom Allain and I am a chaplain for Scripps Hospice, and it’s good to be with you today. It's a treasure for me to speak not only with our hospice volunteers, but volunteers from across the agency. My immediate focus this morning surrounds decisions made at the end of life, but I invite you to think about these experiences not just at the end, but also anytime there is an illness. Oftentimes our patients are making decisions that will determine whether this is the end of their lives or not and the support we can give them is crucial.

In the course of our time together I'm going to talk about several religious teachings. Some I've learned about from the literature that different faiths provide. Others have come from discussions with members of these faiths. Much as I've tried to be as accurate as I can, I may be mistaken in some areas. If so, I ask that you let me know. I'm hoping to enlighten, and I can't do that with bad information.

I'm dividing our time together this morning into four parts. I'll begin by talking about why spirituality and spiritual beliefs matter at the end of life. I'll then go into different reasons or motivations for these decisions. The second part of my talk covers those times when people make decisions based on a belief that God has either commanded or prohibited certain actions. In the third section I'll talk about decisions that won't necessarily bring God's approval or wrath, but rather decisions that will have an impact on the person after death. The fourth and final section covers those decisions made by those who recognize that others see their decisions. In other words, decisions made not in response to God or to have an effect on whatever is next, but decisions made based on how we will be viewed by those we leave behind.

I'm hoping this will be interactive, and a discussion. You come here for a variety of reasons and I hope I cover them. But I'm also interested in your thoughts and feelings around this topic. As Anna told you, I've given this presentation before, but I'm always changing it and updating it based on feedback. If you have a question or a concern, please interrupt me. I promise I won't lose my train of thought.

Part One: Why Does All This Matter?

Most of us think of ourselves as spiritual, and many of us are religious. And to the extent that we volunteer our time in health care, we are also concerned about our health and staying healthy. And I venture to say that most of us think the two worlds really have nothing to do with each other. In the course of talking about this topic with friends and colleagues I've often heard that people who mix these two worlds together are religious nutcases. Years ago I was in a meeting where I was describing a religious conflict with a family when the team doctor said: "Well did you explain that a church is just a building and it doesn't matter what you believe?" People who know me well can testify that I'm not often speechless but I was then. Once my brain stopped reeling on the edge of the cliff I explained that I didn't believe that.

I explained that for many people religious beliefs are not just a creed that they recite or a relationship with a higher being that is divorced from their actions here. For the people we're talking about, their actions here are front and center of their beliefs. There are many definitions of spirituality, but for our purposes, I'd like to use this one: our beliefs encompass the core of our being, the source of how we see ourselves and our place in the universe. They affect our actions, but they also affect how we see ourselves and how we wish to be perceived by others.

It's little wonder then, that for many of us, these beliefs will come into particular focus at the end of our lives. These are the decisions that will be all the more public because they come at the end of life. These decisions will also become final because once we die, we can no longer change our minds and our decisions will be cemented in the memories of others. These decisions are truly not reversible or open to new information.

And sometimes that's what makes us puzzled or even angry. A friend with a treatable heart condition refuses open heart surgery because of the certainty that this will require a blood transfusion from another person. Your mentor stops a chemotherapy routine that promises the likelihood of success because she is eager to get to Heaven and "earn her reward" even though you are not done learning from her. Your spouse lives in severe pain even though medication is available, but would rather "offer up that suffering for the poor souls in Purgatory," a belief you left decades ago.

In other words, their spirituality, their beliefs, clash with yours. I don't want to spend too much time on this, but I think we can all agree that faith, as with many things, has become overly politicized in the last few decades. Many of us don't like to tell others what we believe because we don't want to have the experience of someone telling us: "Tell me what you believe so I can tell you it's wrong and you have to adopt my beliefs, OR ELSE!

In the face of that I believe that we, especially we in health care, need to take a different view. We need to listen, really listen, to what we're being told. We need to listen to our patients' hopes, dreams, concerns, and fears. We all chose Scripps for a reason, but at the base of that reason lives compassion and the desire to reach out to those in crisis. We, of all people, need to be the one our patient trusts with his core beliefs and values. We can create a safe place for this only if we come to the encounter with a profound respect for (if not agreement with) their beliefs.

Part Two: God Commands This

This is not as common as you might think, but this is the most severe, and often the most painful experiences our patients live with. What if you believed, truly believed, that a decision you make now will decide whether eternity will be joyful or nonexistent? What if you choice determined your fate to be in Heaven or Hell? And what if that choice needed to be made right now and you recognize that it will anger all those around you? Could you stand up to your doctor? Your family? Your friends? Your own fears?

I'm going to throw you a curveball here and not begin by talking about Jehovah's Witness and the issue of blood transfusions. I'll get there but I want to start by talking about a conservative Catholic and the issue of confession. For centuries the Catholic Church taught that if a person dies with an unconfessed mortal sin, he would be denied salvation and would spend eternity in hell. It was also commonly believed that they only way back from this was to go to confession to a priest and sincerely confess this sin. Generations of Catholics were taught that mortal sin included extra marital sex and even missing weekly mass with no good excuse. Now imagine yourself being told this all you life, and you find yourself in an emergency room needing life saving surgery, but there is no priest available. You tell the ER staff that you won't consent to the surgery until a priest comes, knowing that time is of the essence. The staff has no patience with your reasoning and is using every method at their disposal to coerce you to sign the consent but you won't because you fear that you'll spend all of eternity in hell if you don't survive the surgery, all because you overslept the Sunday before.

Or another example, this from my experience. Many years ago I knew someone who was unabashedly anti abortion. She was pregnant with her third child, but late in her pregnancy she developed complications. I'm not being vague, I honestly don't remember exactly what it was, but she was told her pregnancy was not viable. She was told that unless she consented to terminate the pregnancy, both she and the baby would die. For the doctors, it was a slam dunk. With the abortion at least the mother would survive. Without it, both would die. She refused the abortion out of the belief that regardless of the outcome, consenting to kill another human being, even in her own womb was a mortal sin. The doctor then presented her with the consent and said: "Either you sign this right now, or I'll bring in your husband and children and explain that you've made the decision to abandon them." She signed the form and the pregnancy was terminated, but she told me several years later that she felt bullied by the doctor and that if she had it to do all over again she would not have signed the consent.

OK, this is the part I knew you were thinking of. Jehovah's Witnesses, a Christian denomination that dates back to the 1800s, prohibit consumption of blood either orally or through transfusions. They read passages from Leviticus (Lev 17:11-12) and Act of the Apostles (Acts 15:28-29) and believe that God prohibits blood transfusions with no exceptions. Their belief is this: with modern technology we've made the need for blood transfusions nearly obsolete, we also are not putting ourselves at risk of blood borne infections, and finally, we believe God has been clear about this. In other words, what good have you done yourself by saving your life, knowing it will someday end, and you will face God in judgment?

Finally, there are churches who not only prohibit blood transfusion, they prohibit all medical procedures. I'm not talking about Christian Scientists (I'll get to them later). One of those churches is called the Church of the Firstborn and unfortunately I only know about it because of a tragedy: in 2009 a 17 year old boy whose family attended this church died from appendicitis. He had been suffering what his family thought of as either food poisoning or the flu; over the course of a few days several family members and members of the church prayed over and anointed him with oil. He died a few days later without seeking medical help.

Stories like this bring out strong feelings in many of us and there are organizations devoted to compelling members of these churches to allow medical care to their minor children. I don't want to go down that road or have a discussion on whether the parents are guilty of child abuse. Rather, I want to instill in you an understanding that those parents, and the 17 year old himself, thought they were acting rationally. From their perspective they were forced to choose between the laws of man and the Law of God and they chose God. When their child died they felt that it was the will of God and that medical care would not have helped. They believe that God chooses who lives and who doesn't, and accessing medical care for something God can heal shows a lack of faith.

Also, please understand that little more than a century ago, this was really the only choice given to those suffering illness. Before vaccines and antibiotics we could only treat the symptoms and hope (or pray) for the best. Most of us chose the science of medicine, but not all and for those whose traditions are mistrustful of science, this is their choice. Understanding, even if we don't agree with it, is often the hardest part of our job. The Church of the Firstborn is not the only church who holds those beliefs, but I needed to choose one, and that was the one I came to.

Part Three: What I Do Now Will Make Things Better For Me Where I'm Going

As I've said, some people believe that God will richly reward correct decisions or deeply punish those who make the wrong choices. But that's a minority. On the other hand we do have lots of people who make decisions or offer rituals in their deathbed that they believe will have a positive effect on them.

My favorite example, and this is completely tongue in cheek, is David Brenner. You may remember him as a comedian who died in March of 2014. According to a family spokesman he requested that $100 in small bills be tucked into his sock in case tipping is recommended where he is going.

I think we all understand that this was a brilliant comedian telling his last joke, but it's not all that far off from rituals that others do. Greek and Latin literature from 2000 years ago speak of something called "Charon's Obol." A coin was placed in the mouth of the dead person before burial as payment for (or a bribe for) passage to the next world. Also, in the Catholic tradition, giving Communion to someone who is dying is called "Viaticum" and in some circles is thought to be "food for the journey."

Sometimes, like Charon's Obol, these are decisions that are made after death, but they can be puzzling too. I once knew a woman who identified herself as Jewish but was not observant: she didn't attend services at a temple or keep kosher. And while observant Jews discourage or even prohibit cremation, she wanted that for herself because she thought burial was a waste of space and money. She didn't believe God cared what happened to her body when she was done with it. Her son disagreed, and wanted to be buried when he died. He did die, and much too young, and following his wishes, she had him buried. She has also decided to be buried herself. When I asked her about it she gave two reasons. First was the fear that if she isn't buried she won't see her son. She doesn't necessarily think God will punish her for being cremated but just fears that she will be in a different place. Additionally she feels that by her being buried she will give honor to her son's values. It makes her feel closer to him and makes the grief of losing a child easier to bear.

The belief that we may go to different places is something that we've grappled with for centuries. Some of you may be watching a series on the History Channel on the Vikings. In their pagan world they didn't necessarily hold that there is a place called heaven and a place called hell, but they did believe there were different places you could go after death, and some were better than others. Warriors hoped to be chosen by the god Odin to join him in Valhalla, a great hall. Many believed that in order to get to Valhalla you had to die with your sword in your hand. This is easiest done in battle, but some Vikings on their deathbed, whether from old age or illness, instructed their caregivers to tie their sword to their hand.

In a distantly related occurence I once had a patient who owned a dog that she loved deeply. She made arrangements for a family to adopt the dog after her death and even put their phone number on her refrigerator with instructions to call after her death. Unfortunately the dog died before she did and she was distraught. We had several discussions about whether she would see her beloved dog after she died, and she left instructions that one of his favorite treats would be placed in her hand when she died so she would have something to give him when she sees him again.

Part Four: I Want to Die in a Way That Those Around Me Will Think Well of Me

This is the last part of our discussion today, and frankly it's the one I witness most often. Almost all of us want to be remembered well and while we recognize that people will remember a great deal more than our last chapter, that last chapter is important.

Frankly I think it's part of what is behind hospice. Time and again I hear my patients telling me that they want to be at home with their family and they never want to see a hospital again. The image of being hooked up to machines, of having tubes and lines going in and out of us, that doesn't sound good. But it also speaks to dying without a sense of dignity. When people tell me they don't want to die in a hospital, I think a large part of it encompasses the fear of looking weak and small, and being remembered that way.

I think this is a decision most of us can agree with, but there are others that aren't. There is a feeling among many, especially the now famous Greatest Generation, that pain medication is for the weak. They underreport pain or discomfort so that we (and their family) will stop encouraging them to take medication. Sometimes it comes from a fear of addiction or an old prejudice; we have a particularly hard time getting men to take Methadone because that's only for heroin addicts. But most often it comes from a self image of someone who has never taken pain medication, someone who has always bulled through a headache or has never taken Novocain for a dental procedure.

And yes, I'm finally getting to the Christian Scientists. I've had several discussions with several people about where to put this part. There are some who think this should have gone into the section on God's rewards and punishments. There is a population of ex Christian Scientists who left because they felt the could not access medical care for themselves or their children and remain in the church.

But as I read their literature and speak with members, they are clear that while they feel that all pain and suffering has a spiritual component, they are not barred from seeing a doctor. If you are a Christian Scientist and you seek medical help you are not barred from the community or punished in any way.

That said, it is clear that there is a great deal of peer pressure to seek spiritual healing of physical illness. And when I talk about peer pressure I'm not talking about the teens who try to get their friends to smoke; this is pressure on a different scale. Almost every Christian Scientist I've spoken with will, within the first few minutes, say something like this: "I'm 60 years old and I've never taken a pill in my life." It's spoken with a sense of pride, a proclamation that he has successfully treated all his illnesses using Christian Science principles of spiritual healing.

This doesn't cover exclusively physical illness. Several years ago I was doing some grief work with a man whose wife had died of cancer. She was a Christian Scientist and he was not. After her death when he was trying to find his way out of the fog of grief he attended a service at her church. There was a man giving testimony about how his wife had recently died and he was completely over it. The man I was talking with was appalled, but also feeling some guilt that he was far from being "over" his wife's death. He said he felt great pressure to say the same thing himself but he just couldn't bring himself to do it. Even though he knew he would be welcome at worship at any time, he didn't feel he would ever fit in or be "part of the group" unless he said the things others were saying.

Conclusion and Final Notes

When people tell me about their beliefs I try, as best I can, to truly listen to not only what they say, but the feelings behind. My hope is that we will all do this. Our beliefs, our spiritual core, is the center of who we are, and it's not easy navigating the world, no matter what we believe. Last month my wife and I were at the National Zoo in Washington D.C. There were a few Mennonite families there; I could tell by their distinctive clothing. My wife commented on how strange it was to see men and women dressed in plain clothing, pushing state of the art baby carriages. I've been reflecting on that a great deal since. The Jewish prohibition on making fire on the Sabbath was easy 2000 years ago. But is electricity fire? How about the spark plugs in your car? If electricity really is fire, is it OK to get into an elevator that stops in every floor and you don't have to push the button?

I often remind myself that in every discussion well all believe we are the most reasonable person in the room. If I can part with any words of wisdom let me try this: next time someone's actions puzzle you, ask yourself why both of you believe you're the most reasonable.