On Dying Well
In the last few years, I have become increasingly involved with death.This involvement has come from three sources: my clinical practice as a physician specializing in geriatrics, my work as a Jesuit priest at an academic medical center and my own attempts as an educator to improve the care of the dying. I spend much of my time caring for dying persons, teaching medical students and physicians about end-of-life care and working with priests, parish leaders and others to mine the resources of our Catholic faith’s traditions about the end of life.
More than once, I have wondered what my own dying will be like and whether or not I will die well. Such musings usually revolve around what “dying well” means and thinking about the presence of God as I am called from this life. The particular circumstances of my life, as a Jesuit priest who will die without wife and children, make my own planning a bit idiosyncratic and not readily accessible to the vast bulk of the population who are not vowed religious. But let me share a bit of advice about what I mean and how I think about dying well.
Dying well does not mean dying stoically. I have no doubt I will be afraid. The thought of leaving the warm sun over Cape Cod Bay, the sound of a trout stream in Montana and the embrace and comfort of my friends and their children is not something that I am thrilled about. But in my life I have come to know my God as someone who is fairly used to my fears and anxieties. And I sense that the Lord deals with me a bit like a father who is trying to pull a toddler away from things that may transiently amuse but ultimately will not satisfy. Death will be the definitive tug into the arms of God.
Dying has its own trajectory, sometimes short and steep, sometimes with recurring crises and transient improvement. What our death will be like depends largely on what we are dying from. Obviously, sudden death, whether from accident or a massive heart attack or stroke, does not have much of a trajectory. One is more or less fine, and then one is dead. It may be that there is an in-between phase, in which medical resources have been able to avert death but leave the person to die in a few days or weeks. Sometimes it may be that the previously well are saved from a catastrophe only to become chronically ill and follow a long downhill course.
Some illnesses, like cancer, may have a long period when the person is quite stable, doing well, active and able to function normally. Then, if the malignancy cannot be cured, there will come a period of decline, usually over a few months, where the individual will have diminishing functional abilities and require more medical intervention for symptom relief before ultimately succumbing.
Other illnesses, like advanced congestive heart failure, have more of a roller-coaster path to death. There are sudden crises when the lungs fill with fluid; there is a hospitalization, things get better, and then there are long periods of relative stability. If the underlying heart failure progresses, despite the use of added medications and the variety of tinkering available to care for this illness, the crises come more frequently and the in-between times are less good, with worsening shortness of breath, fatigue, decreased appetite and malaise.
A good death, regardless of the circumstances, means putting medical care in proper perspective and not allowing it to dominate. That is why thinking about the trajectory of illness is important. In sudden catastrophes, the role of the doctor and the health care team is to attempt to save lives. But when the outcome is less clear or the condition incurable, medicine needs to focus on palliation.
The word palliate comes from the Latin pallium, meaning a shelter or cloak. Palliative care seeks to shelter the individual from the distress of illness, relieve symptoms and maintain function and comfort. Palliative care needs to be part of the care of all serious illness, regardless of how likely a cure may be. Too often, however, physicians and others do not think of conditions other than cancer as appropriate for palliation. Also, too often, we neglect to build palliation into the care plan for persons with cancer even when there are reasonable hopes for a cure, creating unnecessary suffering even if the ultimate outcome is a happy one. We are used to recognizing that individuals with advanced cancer will die and that we can shift our therapy and planning to focus on comfort and quality. But with other illnesses, like the advanced congestive heart failure described above, the pattern of sudden crises resolved by medical technology interspersed with periods of slow decline makes us neglect the need to face the fact that death is the inevitable outcome. As a consequence, a lot of effort goes into acute rescues rather than planning for decline and working hard on symptomatic relief.
Frightened by the propaganda of the death-seeking advocates of assisted suicide and euthanasia, many feel that dying is an inherently awful process. Dying is not easy. There will always be existential distress and suffering for anyone conscious of decline and the loss of the good things of life. I know I will be very sad over the end of listening to Mozart, the loss of the hugs of the children in my life and the sheer sweetness of so much of life. But I also know there is no reason for me to be in severe pain, uncomfortable from shortness of breath or desperate for relief from nausea and vomiting. Regrettably, many good people are in favor of assisted suicide because they have witnessed deaths that are bad, filled with pain and marred by needless suffering. These have occurred because physicians, hospitals and Americans have on the whole not made expert care of the dying a priority.
This is now changing. Pain can be relieved without rendering a person unconscious. It takes some trial and error, and there will be times when pain medication needs to be readjusted or switched. Side effects of medication, like constipation, have to be anticipated and treated. Shortness of breath can be relieved by a variety of efforts, depending on the cause. And nausea and vomiting, although frequently difficult symptoms, can be effectively treated by the aggressive use of medication and other palliative therapies.
Some may find it inherently morbid to think about things like the trajectory of dying and the kind of symptoms that can make death hard. I think it is essential if one wants to die well. Dying well takes some planning and choices. It is not that we can control and stage manage every aspect of the dying process. Losing control is part of what it means to die. But we can make sure that our goals are respected as we face the end of our lives.
Planning to die well means making an advance directive. An advance directive specifies one’s wishes for care in the event of an illness or injury that renders the person unable to speak for himself or herself. Advance directives come in a variety of formats, depending on the state in which one lives. These include a living will, a health care proxy or a durable power of attorney for health care. In most states, the formulation of an advance directive is a relatively easy process that does not require an attorney. But what is most important in the creation of an advance directive is a conversation in which the individual thinks clearly about his or her goals at the end of life.
In my medical practice, I usually suggest three things: that the person give me a sense of how hard to push to maintain life if the situation is ambiguous or looks poor; that the patient have a conversation with her family about her wishes so that the family is informed; and that the person designate another individual to speak with her voice (so that I have someone with whom I can consult if my patient is too sick to speak). Advance directives are not a panacea. They are useless if the doctor does not know about them, if the family does not bring the document to the hospital in case of sudden emergency or if they are not updated as a person’s condition changes and with it her or his wishes for health care. There is the possibility that some could use an advance directive to limit therapy inappropriately or to hasten death. But I find advance directives invaluable for most of my patients. Advance directives that are well crafted require thought and conversation about the end of life. They help bring death out into the open and allow care to be based on patient wishes. That is a key part in considering individually what it means to die well.
Dying well is not simply a matter of getting our affairs in order and making sure that our health care proxy is informed that we are in the emergency room. It is the time we meet God in a definitive way. Dying well has at least three essential components.
First, medical care needs to be put in proper perspective. No one gets out of this life alive. Doctors can cure us for a while, they can relieve our suffering as we are dying, and they can do a good job of obstructing death when we are clearly dying, if we are so dumb as to let them. A good death for me will require a good doctor. This means that the doctor will be attentive to my wishes, vigilant about symptom control and pain relief; that he or she will be a prudent advisor in the face of sadness and fear, and sensitive to the dynamic that life is never to be taken deliberately but need not be prolonged when the burdens of therapy outweigh the benefits to the patient. But it is also important that medical care not be the focus of dying. The doctor and the other members of the care team are not the stars of the show when we come to the last act. They have important supporting roles.
The key players, however, are the person who is dying, those who love him and God. A good doctor will be clear about the limitations of her art. One sometimes hears physicians say to a person: “I am sorry, but there is nothing more that can be done.” A better response is that of the physician who is wise enough to state: “I have no magic treatment, no new drug, no surgery that is likely to change the course of your disease. But I promise to be with you, to relieve your symptoms and never to abandon you to the experience of your illness.” Putting medical care into its proper perspective means that patients and their families do not always grasp for more and put misplaced hope in doctors and treatments when dying is clearly at hand. In the light of eternal life, and our hope in the resurrection, relentless efforts to prolong the dying process of someone with an incurable illness can seem somewhere between silly and blasphemous.
Second, dying well for people of faith who are Catholic means sensitivity to the moral tradition of the church. This requires finding the mean between those who reject any sort of life-sustaining care and those who think that being Catholic requires that every possible tube and treatment must be thrust upon a person before one can die. The former attitude comes close to euthanasia in its lack of appreciation of the goodness of life and the need to value the gift that God has given us. The second attitude replaces faith in God with vitalism; it suggests that every heartbeat is sacred rather than realizing that life’s absolute value is found in union with God.
Practically speaking, when one is facing a terminal illness the wisdom of the church is that one is not obliged to pursue treatments that are painful, difficult to bear or simply prolong dying. A person who has cancer or advanced emphysema, or is facing the last stages of decline from heart failure should not feel that there is any moral problem in refusing to be resuscitated or declining the aggressive high technology care offered in the intensive care unit.
Third, and most important, dying well means living well with God. Preparation for death should be an everyday affair for the Christian, not in the sense that one is continually revising advance directives or wondering about potential moral conflicts, but in the daily effort to grow in intimacy with the Lord and to live one’s life well. Although planning for death with advance directives, good medical care and moral sensitivity are important, the essential part of dying well is living in Christ.
How does one live spiritually in the hope of dying well?
That question has a million answers, and recalls the question of the rich young man to Jesus: “What must I do, Master, to inherit eternal life?” At its core, a happy death comes at the end of a life in which a person has been dedicated to love of God and love of neighbor. The death of a Christian is a time for birth into eternal life with God. Making choices from the perspective of the deathbed wonderfully focuses the distinction between what is essential and good and what is trivial and evil. St. Ignatius of Loyola, in his Spiritual Exercises, urges the person making the exercises to choose a state in life or make a particular decision by a variety of methods. One is to consider what one’s choices will look like “as if I were at the point of death.” The Imitation of Christ (1, 23, 1)looks at the Christian’s life through the lens of mortality: “Every action of yours, every thought, should be those of one who expects to die before the day is out. Death would have no great terrors for you if you had a quiet conscience.... Then why not keep clear of sin instead of running away from your death? If you are not fit to face death today, it is very unlikely you will be tomorrow.”
St. Cyprian, the third-century North African bishop and martyr, questions the faith of Christians who pray daily for the coming of the kingdom and that God’s will be done but resist death and avoid their own mortality: “How unreasonable it is to pray that God’s will be done, and then not promptly obey it when he calls us from this world! Instead we struggle and resist like self-willed slaves and are brought into the Lord’s presence with sorrow and lamentation, not freely consenting to our departure, but constrained by necessity.”
Cyprian’s aim was to encourage Christians facing martyrdom, but his words also exhort us who live in a culture that is increasingly clueless about the spiritual meaning of death and the need to live one’s life in the light of eternity: “Be single-minded, firm in faith, and steadfast in courage, ready for God’s will, whatever it may be. Banish the fear of death and think of the eternal life that follows it. That will show people that we really live out faith. We ought never to forget, beloved, that we have renounced the world. We are living here now as aliens and only for a time. When the day of our homecoming puts an end to our exile, frees us from the bonds of the world, and restores us to paradise and to a kingdom, we should welcome it.”
Learning to welcome the day of our homecoming may seem a hard task. But praying, planning and thinking about our lives as Christians and our hopes can lead us to important choices that can help us to die in the light of our faith. Again, it does not mean we will have the courage of St. Cyprian or the heroism of the martyrs. I do not. But in my fears, I want to plan as much as possible to die in the love of Christ rather than in the unplanned excesses of health care. And the love of Christ is what dying well is all about.