The ethical dilemmas presented at the end of life are increasingly frequent and complex. At least two factors contribute: First, the dramatic developments of medicine over the past three decades have significantly decreased the incidence of sudden death in developed countries. We now have a national 911 system ready to summon advanced life support ambulances staffed by excellently trained emergency medical teams and portable defibrillators. They transport the critically ill to hospitals where teams are waiting to do emergency angioplasties, offer trauma units, and have ICU’s to preserve the life of the critically ill. As a result many who formerly would have died suddenly are now dying gradually of other diseases; many at an advanced age.[1] Sudden death does, after all, avoid many ethical ambiguities. Gradual death raises more ethical challenges.
Second, we have new life sustaining technologies becoming available at an unprecedented rate. It is rare for people to come to the end of life today without some decision to limit care. One study showed that 90% of ICU deaths came only after such a decision.[2] Each of these decisions is replete with ethical implications and, consciously or not, is founded on a set of ethical presuppositions. With somewhere around 10,000 souls dying each day in the United States alone, the sheer numbers of these ethical dilemmas are legion when compared to other areas of interest to Bioethics.
Consider this scenario: Grandma, who is 97 years old, called me one morning a few weeks ago saying that she could not breath. I immediately called 911. The Emergency Room Doctor examined her and said she heard a loud murmur from a heart valve that was leaking. Did I want her to call a cardiologist to do a heart catheterization to see if the valve needed replacement? I agreed and later that evening the specialist reported that Grandma’s mitral valve had ruptured. She predicted Grandma could not live more than several days unless she had the valve surgically repaired. The surgeon needed an immediate answer to schedule surgery the next day. I gave the go ahead and though Grandma made it through the surgery, she has now been in the ICU for the past three weeks. She is dependent on a ventilator, her kidneys have failed, and she is in coma. I know that she is going to die, but I feel uncomfortable about just taking her off the machine. Would that be killing her? Instead, I asked her doctor if he could just give her something to speed up her death.
This story is apocryphal, but it well illustrates the quagmire of ethical issues that are commonly faced. No decision made on Grandma’s behalf was without ethical impact. Rarely is there time or philosophic clarity to answer these questions carefully. As a result the default of modern medicine is pursued, and one technological intervention is added to another. In consequence a level of care is imposed on the patient that is far beyond what they ever wanted. This may prompt a look for an unacceptable way out, such as asking to “speed up her death.” A death like this leaves patients and their families ill prepared. They had been living in denial while trusting the medical system to pull Grandma through. In the end, they are disillusioned and unhappy. This does not make for a “good death.”
It is an understatement to say that there is a crying need for more ethical reflection on end of life care. This must involve the caregivers and the receivers, including patients and loved ones. The Journal Ethics & Medicine is committed to ethical values consistent with the Hippocratic tradition as it has come to us through traditional Judeo-Christian teachings. It is in that context that I will discuss the ethical issues raised at the end of life. The secular literature on end of life issues is growing daily. Much of this material is excellent and fully consistent with the values embraced by Ethics & Medicine. These values are often foundational to the hospice and palliative care movements. One of those values is that, as death approaches, life is equally precious to what it was in more active days. These values affirm that even in dying there can be healing and strives for that. The end of life is the time when the patient can come to closure with this life and bring completion to relationships, reconciliation with problems of the past, and a feeling of spiritual peace. Allowing for these activities contributes to a truly “good death.” These things do not happen by default. They require time and intention. One tragedy is that medicine, by continuously offering one more treatment to deny or delay death, can prevent these very things from happening. On the other hand, preparing for death is not incompatible with aggressive medical care. It requires that even while we hope for life we must prepare for a good death. The question remains: What constitutes a good death?
Before you get into the essays in this fascicle let me share with you some things that can contribute to a “good death.” First we must recognize that it is practically impossible to define a good death without a spiritual context. I am writing within the broad spectrum of Hippocratic physicians who believe in Judeo-Christian values. Within that larger community, I am a confessing Christian and will use the Bible as my authoritative guide to faith and practice. Some of these principles, however, will be applicable in other faith traditions as well.
1) A good death is the natural trajectory of faith commitments made earlier in life.
Many have said that we die the way we live.[3] This should be particularly true for Christians. There should be no discontinuity between the faith we live by and the faith we die by. Scripture teaches that Christ has defeated the enemy of death.[4] Death does not ultimately need to be feared though it need not be embraced. Christ’s death and resurrection have purchased for his followers a hope of resurrection to eternal life, and in that hope they can approach their own demise. As a believer faces death, the sting of death is therefore removed.[5] A believer finds ultimate value not in this life but in an eternal relationship with God in Heaven. Therefore, a death that comes only as a fight to the finish after every possible technology has been exhausted may be a practical denial of the fact that death has been defeated and may not appropriate for a believer.
2) A good death may require advance planning.
A degree of control and self-direction is essential if we expect our later days to be consistent with our faith. This will typically require some form of advance directive and in depth discussion of your values with the individual whom you appoint as your power of attorney. It is imperative for that document to be carefully worded so as to be consistent with one’s faith.
3) A good death has completed relationships including those that need reconciliation.
Ira Byock is the author of one of the seminal volumes in the death and dying literature, Dying Well. He speaks of the four things that need to be said as life comes to an end: I love you, thank you, I forgive you, and forgive me.[6] These represent Christian values as well. Byock reminds us that we may not have said these things enough in our active days. The more people who hear these things, the stronger our survivors will be when we are gone. These four statements also provide an occasion to reconcile relationships that have been broken.
4) A good death comes after we cease clinging to the things and values of this world and increasingly embrace eternity.
The apostle John wrote:
Do not love the world or the things in the world. If anyone loves the world, the love of the Father is not in him. (1 John 2:15)[7]
A believer is to slowly give up on this world. This is not where ultimate joy and satisfaction lie. She is to be more caught up with the values and things of Heaven. She should be longing more for God’s presence. This is a gradual process that should occur over the span of our Christian life. The example of the Psalmist is a model:
O God, you are my God; earnestly I seek you;
my soul thirsts for you;
my flesh faints for you,
as in a dry and weary land where there is no water.
So I have looked upon you in the sanctuary,
beholding your power and glory.
Because your steadfast love is better than life,
my lips will praise you. (Psalm 63:1–3)
It is when we slowly loosen our grasp on this world and reach out for God that we prepare to die well.
5) A good death comes to the one whose spirit has been enriched by the difficulties of the end of life.
Gradual death is rarely easy. It includes difficulties that often include pain and suffering. Scripture teaches that “through many tribulations we must enter the kingdom of God.”[8] God can use these same difficulties to allow us to experience his grace more and in the process come to know him in a more intimate way. That is the basic message of the book of Job. It is what the prophet means when he speaks of us being the clay, while God is the potter.[9] It is what the apostle affirms when he writes that tribulation leads to endurance, character, and hope.[10] The most striking benefit is what Paul mentions in Philippians when he says that in sharing in the suffering of Jesus we are able to have fellowship with him. Fellowship implies not only that we experience his suffering but that he is there to help us when we suffer.[11] It is common to experience that the people we are closest to are the ones we have gone through difficulties with.
6) A good death will often come after a carefully considered decision not to pursue life-sustaining treatment.
The challenge is where we draw the line. At what point is it appropriate to pursue life-sustaining treatment and when is it licit to pursue comfort care only? We must not give up too easily. Scripture teaches that life is precious, our bodies are the temples of the Holy Spirit, and we must care for them as good stewards.[12] A Christian will therefore refuse suicide and euthanasia. But does that necessitate a vitalist position that pursues earthly life at all costs? That is a most important and most difficult question. Scripture does not give any explicit guidance for us. However, we can glean a suggestion from the apostle Paul by what he wrote to the Philippians.
[A]s it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death. For to me to live is Christ, and to die is gain. If I am to live in the flesh, that means fruitful labor for me. Yet which I shall choose I cannot tell. I am hard pressed between the two. My desire is to depart and be with Christ, for that is far better. But to remain in the flesh is more necessary on your account. Convinced of this, I know that I will remain and continue with you all, for your progress and joy in the faith, so that in me you may have ample cause to glory in Christ Jesus. (Philip.1:20–26)
Paul did not have multiple technologic options to choose from. He was simply facing the possibility of death and was trying to decide whether to hope to live or to die. His response was that he would hope to live if he could continue to serve others in their spiritual walk. Nevertheless he recognized that “to depart and be with Christ” was the natural end of a life spent serving others, and he would hope for that if he were no longer able to serve. With the many options that technology gives us today it may be reasonable to say that if there is reasonable hope that we will be able to serve others in any way, we should have our lives prolonged. That may include a scenario where we are totally dependent on some life sustaining technology or on other people but still able to pray for and encourage others. A distinction like this is very functional. I do not believe that my worth as a human being is in any way attached to my ability to function. Nevertheless, it may be appropriate to use a functional distinction like a reasonable expectation to be able to serve others as an indicator of when to forgo burdensome life-sustaining technology.
7) A good death is peaceful, for the dying person knows that it will lead to resurrection and eternal life in God’s presence.
Death for a Christian is not the end; it is the beginning. It is the means by which God takes his child home to his eternal reward.[13] Paul did not have his sights set on a wonderful life here on earth. He was pressing on so that he would someday hear God’s call to take him to Heaven.[14]
I believe these are some of the essential ingredients of a good death. You may note that some of the values traditionally considered to make up a good death are conspicuously absent. What about avoiding pain and suffering? What about maintaining one’s dignity? I would never want to discount these values as things to strive for. Nevertheless, I believe they lose much significance when one comes to the end of life with a passion for God and his glory.
Our studies will not lead us to easy answers to the complex ethical choices faced toward the end of life. The fact is that they may tend to muddy the water even further. Nevertheless, this type of careful scrutiny is good. I was taught years ago that “The more you know the more you know you don’t know.” This is particularly true here. If we are able to distill complex issues down to simple truths, it will only be after wrestling profoundly with the problems. I trust that reading this volume will help you to wrestle profoundly and that as a result you will be enriched in your understanding of these complex issues.
Our task is not to spout off quick answers. Rather, it is as was articulated so clearly 2500 years ago when the prophet wrote:
He has told you, O man, what is good;
and what does the Lord require of you
but to do justice, and to love kindness,
and to walk humbly with your God? (Micah 6:8)
[1] Kiernan, Stephen. Last Rights, St. Martin’s Press, 2006. This is the general thesis of the book.
[2] Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine, Truog et all, Critical Care Medicine 2001, Vol 29 No. 12 2332–2348.
[3] Kiernan, 67.
[4] 1 Cor. 15:26. “The last enemy to be destroyed is death.” 1 Cor. 15:54–57: “When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written: ‘Death is swallowed up in victory.’ ‘O death, where is your victory? O death, where is your sting?’ The sting of death is sin, and the power of sin is the law. But thanks be to God, who gives us the victory through our Lord Jesus Christ.”
[5] 1 Cor. 15:55. “O death, where is your victory? O death, where is your sting?”
[6] Byock, Ira. The Four Things that Matter Most, Free Press, 2004, and Dying Well, Riverhead Press, 1997. This is the subject matter of Four Things and is also prominent in Dying Well.
[7] All biblical quotations are from the English Standard Version (ESV) unless otherwise noted.
[8] Acts 14:22.
[9] Isaiah 64:8: “But now, O Lord, you are our Father; we are the clay, and you are our potter; we are all the work of your hand.”
[10] Romans 5:3–5. “More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.”
[11] Philip. 3:10 (NIV) “I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death…”
[12] 1 Cor. 3:16–17. “Do you not know that you are God’s temple and that God’s Spirit dwells in you? If anyone destroys God’s temple, God will destroy him. For God’s temple is holy, and you are that temple.” 1 Cor. 6:19: “Or do you not know that your body is a temple of the Holy Spirit within you, whom you have from God? You are not your own…”
[13] 2 Cor. 5:6. “So we are always of good courage. We know that while we are at home in the body we are away from the Lord…”
[14] Philip. 3:14. “I press on toward the goal for the prize of the upward call of God in Christ Jesus.”
Editor's Note: This essay is adapted from a Guest Commentary that first appeared in Ethics & Medicine: An International Journal of Bioethics Volume 23 Issue 2, Summer 2007 and is used by permission.
