By Charles A. Corr, Ph.D., CT, and Dona M. Corr, RN, MS in Nursing
How Do You Cope?
Living while your death is imminent is a time that is both pressured and precious. It is pressured as a result of all the demands and stresses that life-threatening conditions have imposed and will continue to impose on you. You may already have made changes in your daily routines and have found yourself interacting with unfamiliar health systems or care providers. You may be experiencing loss of energy, difficult symptoms or limitations in what you can do. If your death is imminent, you may know all too well these and other sources of pressures that are currently confronting you.
Still, this is also a very precious time in your life. It is a time when you are not dead yet, a time you will never have again. In this precious time, you can make choices that will affect the quality of your life now and in the near future. Your choices can also affect the lives of others around you in important ways, both now and well into the future. You can make choices—within limits—about how you use this time that is currently available to you. Choose as wisely as you can.
Make today count
Orville Kelly, upon being diagnosed with a terminal illness, eventually decided that he wasn't just going to be a victim of his disease and seized upon the motto "Make Today Count" to guide his life going forward. His decision prompted him to write a book and start an organization, both of which has provided support for individuals with life-threatening illnesses and their family members.
What Kelly realized was that, despite the shadows his diagnosis had cast over his life, he was still very much alive. He was not already dead nor “as good as dead,” as some people seemed to be treating him, and he could make choices to guide the life he was still living.
You are still alive!
If you are reading this article, you, too, are still alive. You may have a long stretch of time ahead of you, a few weeks or months, or perhaps only a few days. However that may be, and whether or not it can be predicted with much accuracy, what you do have is NOW.
Adopting the motto of “Make Today Count” in your life does not mean you should forget about the past. Nor does it mean you should do whatever you like without regard for what your actions might mean for tomorrow, for you and for others. But, try to get the most out of the precious time available to you right now, today, this minute: be with your family, enjoy hobbies or possibly even favorite outings.
Death isn’t just something that occurs at the end of our lives. Being subject to death is a fundamental condition of our lives, one we may or may not like. But the fact of our mortality does not take away the reality that each of us can live until our death actually takes place. You can do this, too.
Human beings and mortality
The unique thing about human beings is that they can think in advance about life and death. Through their reflections, humans can—if they wish—come to understand the relationship between their life and their death, recognizing that their life will not stretch on into infinity.
Leo Tolstoy, a great Russian writer, wrote about this in his famous story, “The Death of Ivan Ilych.” Tolstoy described the life and death of his fictional character, who was a Russian bureaucrat and a married man, but not someone closely involved with his wife or family. What most interested Ivan was playing cards with his friends.
Mortality for the young Ivan Ilych was an abstraction. The personal force and relevance of being subject to death only became apparent to Ivan—as perhaps it only does for many others—as he was forced to confront the imminence of his own death when discovered in mid-life that he had a grave illness. Have you found that the meaning of your own mortality has become more significant to you as your own death comes nearer?
You can make acknowledging your own mortality an important steering force in how you are living right now.
It may not seem like any great benefit to be compelled to realize that your own death is imminent. But consider the alternative. Many human beings die suddenly, without warning, as victims of accidents, homicides or other calamities.
While, as many humans do, we may desire a quick and painless death—to go "peacefully in my sleep without any distress or forewarning"—we should consider the loved one's we leave behind and the horror that they must endure when such events occur.
What might be called the 2-sidedness of death is one of its fundamental features. There is always one person who dies and at least one other person who is his or her bereaved survivor. With that in mind, when we are asked whether we might prefer an anticipated or an unanticipated death, perhaps we should think a bit before we choose too quickly in a way that only takes into account our own narrow, personal interests.
When contemporary Americans who say they wish for a sudden death are asked why that is their choice, they give many answers. Among them, perhaps the most common reflects anxiety about the possibility of experiencing a long, painful, or undignified dying process, especially in an alien institution under the care of strangers who might not respect their personal needs, wishes, or values. Are those some of your concerns now as you realize your own death is imminent?
We can sympathize with this motivation. At the same time, we question whether this tragic possibility is the only alternative for an anticipated death. Actually, we are confident that in most cases it need not be. Another alternative has become available in recent years in our society. That alternative is found in the development of hospice and palliative care programs with expertise in symptom management.
Hospice and palliative care
In 2006, according to statistics from the National Hospice and Palliative Care Organization, American hospice programs served about 36 percent of all Americans who died that year. Also, more than 74 percent of those were able to die in a place they called home—a private residence, a nursing home or other residential facility. This contrasts sharply with the general population of Americans, nearly half of whom died in an acute care medical facility.
Research reports have demonstrated that family members believe hospice care improved quality of life for their loved ones and have shown hospice care can even extend length of life for some individuals. (Not everyone who enters a hospice program dies; 220,000 persons were discharged from American hospice programs in 2006.)
Clearly, an anticipated death is not necessarily something to be dreaded, especially when appropriate and relevant care is available. Does this information help you think about the implications of an anticipated death in a new way?
There is always more that can be done
Hospice and palliative care programs have made clear it is never true to say to a person with a terminal illness, “There is nothing more we can do.” Professional expertise, the skills of experienced interdisciplinary teams, guidance for family care providers and human presence can minimize disturbing symptoms and improve quality of life. Those who choose hospice care need not find that the last days of their lives are lonely, mechanical and dehumanized. They are more likely to find they are respected as persons and as individuals. They can be sure they will not be abandoned. And they can know their family members will receive the support they need, both while their loved one is alive and after his or her death.
Many individuals in hospice programs are able to die at home or at least to remain in their own homes for extended periods of time. That’s not important for everyone. Some people do not have a safe home in which they could stay; others might be frightened to be at home and would prefer to be in a hospice in-patient facility where they could be assured of professional management and supervision 24 hours a day.
Opportunities for growth at the end of life
A notable example of an individual who benefited from hospice care is found in the experiences of Art Buchwald, an American humorist and Pulitzer Prize winning writer. After his kidneys failed, Buchwald entered a hospice in-patient facility where he decided to discontinue dialysis. For the next several months, he received visits and communications from friends and admirers, but he didn’t die. His kidneys began to function again and he returned home. In his book about his experiences, Buchwald wrote: “What started out the worst of times ended up the best of times . . . The big news is that I’m still alive. After being in the hospice waiting to die, I said, ‘To hell with it. I’m going to write a book’” (p. vii).
Expert management of Buchwald’s symptoms and general improvement in his health enabled him to extend his life by many months, plan his funeral and see his book published before he died in his son’s home 7 months after leaving the hospice facility.
This example indicates that, with appropriate care, individuals can experience opportunities for growth at the end of life. Precisely because you are not dead yet, there are important choices you can make. Some of them can help you find or construct meaning in your life as you live in this precious time. Engaging in a process of reminiscence or life review with empathetic listeners can help, as can planning ways to leave legacies for your survivors.
When death is imminent, having some time at one’s disposal can make it possible to address what has been called unfinished business. This phrase identifies projects you might wish to accomplish or undertakings whose lack of completeness makes you feel uncomfortable. For example, you might want to finish some task that is important to you or at least carry it forward as much as possible.
“Unfinished business” often also refers to aspects of personal or spiritual relationships that seem unsatisfactory or disturbing. Are you content or “at peace” with all aspects of your life? If you could, are there things you would want to do or say, people you would want to spend time with before your life ends? Why not do those things now?
Working on advance directives can help you talk about your wishes with family members. Getting such directives in place can provide great relief to those who draw them up. They can diminish anxiety about what might happen to you if you should find yourself in a situation where you are not able to participate in decision making.
Advance directives are intended to govern the care you do or do not want to receive in some particular circumstances, including at the end of your life. Advance directives include living wills and durable powers of attorney in health care matters (sometimes called health care proxies) that appoint an agent or substitute decision maker to determine how things should go.
Have you completed an advance directive to let family members and care providers know what types of interventions you do or do not want to be part of your care at the end of your life—especially in circumstances when you might not be able to tell people about your wishes? If not, why not?
We have learned that preplanning a funeral or memorial service can be important to many individuals whose death is imminent. You may also want to relieve your family members and loved ones as much as possible of the burden of these responsibilities following your death. Perhaps you have made “preneed” arrangements with a funeral home or discussed with your family members:
- whether or not to have a visitation, a burial and/or cremation, a memorial service
- a religious or nonreligious ceremony
- music to be played or songs to be sung
- pictures or collages to set out
- individuals who should take part
- the involvement of military or fraternal organizations
Do you have a will that expresses how you want your property to be distributed? If not, are you aware your property will be distributed in accord with state legislation, whether or not that agrees with your wishes or those of your heirs? You may already have a will to ensure that your property will be distributed as you wish, or perhaps you might wish to revise your will at this point in your life in light of circumstances that may have changed since you first consulted an attorney.
You can also write a moral or ethical will, a statement that conveys your values and things you want to say to others, such as lessons learned in your life.
These are subjects that very much benefit from discussion with your family members, health care agent(s) and executor(s). You will want them to agree with you and with each other about how to carry out those wishes. Getting everyone to go along with you in matters like these can avoid many problems later on.
Loss and grief
When death is imminent, you are likely to encounter a series of losses. Some of these may have already occurred, while others may be ongoing. These losses take many forms and will likely differ for different individuals in different situations. The losses that you have encountered may be more or less significant or challenging to you.
The natural and appropriate reaction to losses of all types is grief. Typically, grief involves emotional reactions to loss, but it can also include a wide range of physical, behavioral, cognitive, social and spiritual reactions.
Some types of losses that may be of concern to you involve situations that have not yet taken place but can nevertheless be expected to happen. These are anticipated losses and the grief that relates to them is called anticipatory grief. For example, one teenage girl with a life-threatening illness and a poor prognosis experienced anticipatory grief because she knew that now she would not achieve her goals of graduating from college, getting married and bearing children.
Each loss and grief reaction calls for an appropriate coping response.
American humorist Josh Billings (1818-1885) is reported to have observed that “life consists not in holding good cards but in playing those you do hold well.” We would all like to be dealt good cards in the expectation that we could thereby master all the challenges that arise in our lives. In reality, however, we can only play the cards we have.
How we play our cards is a metaphor for how we cope. This is especially important when we face major challenges in life, and perhaps even more so when those challenges are associated with our own imminent death.
Death-related challenges and losses are unavoidable because we are mortal beings and our lives are finite. We cannot escape such challenges; we can only decide how we will cope with them. And we have the privilege of being able to make such decisions ahead of time.
The well-known “Serenity Prayer” speaks directly to how you and your loved one might cope with challenging situations. The key elements in the prayer tell us that when we are coping we need:
- Wisdom to understand our situation.
- Courage to change whatever in that situation may be disturbing us and ought to be changed.
- Serenity to acknowledge or accept those aspects of the situation that are beyond our power to alter.
Every human being has the ability to adapt to change; what we all must learn is how to do that and especially how to cope with loss. We learn how to cope by trying out different strategies and tactics throughout life and by observing how others cope with various situations. Above all, we learn by carefully assessing our own strengths and weaknesses, together with the characteristics of the situations in which we find ourselves.
As you reflect on your own coping, you might ask yourself questions like the following:
- How have you tended to cope with major challenges in your life?
- Have you been aware of your coping strategies?
- What were the sources from which you learned to cope in these ways?
- Have your coping strategies and tactics generally been successful for you?
- Are there coping strategies and tactics you have employed that did not work well for you?
- If so, as you think back on them, why do you think they were not very successful?
- And how do you think you can avoid such problematic coping now?
One reason for asking questions like this is that if you know how you have dealt with challenges and problems in years past, you probably have a pretty good idea—though not an absolute guarantee—how you will cope when your death is imminent. Or at least it may become clear to you how you could alter ways in which you are coping right now.
Choices in coping with dying
Your coping choices can help you appreciate the time that is now available to you. They can also enable you to use that time as well as you can to benefit both yourself and others whom you love. In so doing, these coping choices are a way of empowering yourself.
You might be aware that you yourself have coped with different problems in different ways. Perhaps you acted forcefully to change things in 1 situation, while holding back and seeking more information in another set of circumstances. Alternatively, you might quickly have decided there was nothing you could do about another unpleasant problem. So maybe you told yourself, “that’s just the way things are,” and decided to make the best of it.
Instead of looking for concrete "stages" in dealing with imminent death, think about the broad range of reactions and responses that you might be experiencing. There are not just 4 or 5 ways of reacting to or living out your dying, any more than there are just 4 or 5 ways of living out all the other parts of your life. Don’t allow yourself or others to treat you as if you were only a generalization and not an individual, unique person.
Tasks in coping with dying
Our suggestion is that you think about the tasks—physical, psychological, social and spiritual—you might want to undertake in this important period of your life. We make this suggestion because the very notion of tasks suggests endeavors or undertakings you might or might not wish to take up. You can choose to engage in one or more specific tasks—or you can choose not to. You can begin a task or leave it for another time. You can work on a task for a while, then set it aside, and perhaps come back to it later. All of these choices imply empowerment. Coping tasks involve an active process, a proactive doing with a positive orientation, not just a defensive reaction against challenges in living.
You may need expert medical and nursing assistance with some physical tasks. But your family members and friends can also help, provided you are communicating clearly (for instance, that you can no longer eat a full plate of food.). The tasks may include:
- minimizing physical distress (e.g., pain, nausea, vomiting, constipation)
- taking care of fundamental bodily needs, such as:
It’s important for you to feel secure even when death is imminent, to know you are safe and will receive the care you need. You will also want to be in charge of your life as much as you can. Things to consider:
- Will you continue to make your own decision or designate someone you trust to make decisions on your behalf?
- You may want to take your regular bath or dress in comfortable and attractive ways.
- Can you continue your lifelong habit of drinking a glass of wine with your meal?
- Is it possible to continue enjoying your favorite food?
You will know best the people and the things that contribute to your own security, autonomy and richness in living.
Consider the personal attachments that you value and your interactions with society and its social groups. Facing your imminent death, do you wish to continue as you did before in the areas of:
- work duties
- fraternal organizations
- friend and social circles
Instead, you may prefer to focus on a narrower scope of interests and a more limited group of important family members and friends.
These are likely to involve seeking ways to identify or formulate meaning for your life, your death, your suffering and your humanity. You may want to feel:
- that your life is meaningful and thus worthwhile.
- a sense of connectedness with others and with the divine or the transcendent in your life.
- some type of hope, whether religious or nonreligious
In all of these tasks, there is no universal goal you have to achieve. There are no particular reactions or set phases that have to be lived through and no specific goal or type of closure that must be accomplished before death occurs. Dying is a part of living. Each of us has lived his or her life differently; so, too, each of us can die his or her death differently.
You may decide to accept your fate, spend time with those you love the most and "make peace with God." Or, you may decide, as Dylan Thomas wrote, to "rage, rage against the dying of the light."
For most of us, how we die is likely to be quite similar to how we have lived. For all of us, there is no prescribed path or preordained mold that we must follow or fit into in the critical time at the end of our lives.
Hope is an important part of human life. To be truly hopeless is to be desolate, isolated, deserted in a barren and bleak wilderness. Those dismal descriptions may apply to those who are depressed, impoverished, malnourished and uprooted from their homes and lives. Descriptions like this do not necessarily—and need not—apply to most individuals for whom death is imminent. Although you may have sad and “down” times, do you really feel as hopeless as this would suggest?
As long as we are alive, we can be full of hope. Our hopes may focus on getting well, but it is more likely grounded in reality and focused on what can yet be done. As our situation changes, our hopes are likely to be fluid. Often, what we hope for will shift its focus to adapt to changes in the actual realities within which we find ourselves.
Hope has great therapeutic potential. It can help uplift our lives in difficult moments. Don’t let yourself or others tell you that you can no longer be hopeful when your death is imminent. It is important to make each day count. Here are some things for which you may remain hopeful:
- That someone will (continue to) love and care for you.
- That you can have your favorite food for dinner tonight.
- To be able to see a favorite relative one more time, or possibly a person from whom you have been estranged for many years.
- To live as long as you can or until a special birthday, anniversary, holiday or the birth of a new grandchild.
- An outcome grounded in your spiritual or religious convictions.
- A cure for your disease or illness, providing a better situation for your children or grandchildren.
- To be more comfortable or less distressed as you continue your journey.
- What are you hopeful for today?
Keep in mind that it is perfectly appropriate for you to hold onto many hopes at the same time, not all of which need be completely consistent. Acknowledging the imminence of your own death does not preclude hoping for something important to you in the future.
Many individuals—perhaps you are among them—seek out opportunities in their last days to express important sentiments to their loved ones. Examples of such sentiments might include:
- Saying thanks to people for all they have contributed to your life
- Apologizing for anything you have done or failed to do that might have been hurtful to others
- Forgiving others for anything they might have done to hurt you
- Offering expressions of love
- Simply saying, “Goodbye”—a farewell or leave-taking expression that originally meant “God be with you”
Time to let go
Family members are often advised that a time might come when their loved one needs to end the struggle to hang on to life and seek relief in death. If that is true, then it is also true that dying persons may sometimes need to help those who want to hold onto them or who cannot bear the thought of their absence to recognize that the time has come and it is now OK for them to let go. When it is your time, you can let others know that is the case. In this way, you can teach family members and professional care providers about your needs and your tasks. And you can help them learn about their own mortality so they can live richer lives and face their own deaths more courageously when their time comes.
This permission-giving and these parting words all have to do with expressions of concern for others and attempting to make the bereavement and the ongoing lives of those you love easier. They are efforts to assist your survivors-to-be not only to survive your death but also to survive and cope effectively with the loss and grief they will inevitably experience after your death.
You’re not dead yet!
This little article began with some comments on one overriding thought: You’re not dead yet! Here are some words from Dr. Elisabeth Kübler-Ross: “It’s not really the dying that’s so hard; dying takes no skill and no understanding. It can be done by anyone. What is hard is living—living until you die; whether your death is imminent or a long way off . . . the real challenge is to fully live the time you have.”
Your attitude is up to you
Some of the key themes in this article have followed from this one overriding thought. They point out that if you are alive right now, you can choose (within limits, certainly) your way forward. As Viktor Frankl wrote after surviving the Holocaust: “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” The circumstances you are currently facing may mean you are under a great deal of pressure and the scope of your choices is limited, but the possibility of choice means this is also a most precious time.
Will you "Make Today Count"?
You can decide how you will live the time that is currently available to you. Will you “Make Today Count” as you contemplate your own mortality? If so, how will you do that? What decisions will make a difference in your life and in the lives of those you love right this moment?
If you are reading this article, you have not encountered a sudden death. Instead, you have been given time to be able to think about and anticipate the death that is on your horizon. In this way, you can reflect on your life, seize the opportunities open to you, and prepare yourself and those whom you love at least in part for the future.
Making today count involves coping with the challenges and possibilities presented to you, addressing any unfinished business that might be important to you and doing so in whatever ways you might choose. After all, this is your life you are living. You cannot control all of its aspects, but you can influence at least some of them. And you can continue to be hopeful, even as you share important words of parting with those you love.
Don’t stop living before your life ends. Live your life as fully as you can each and every day. After all, you’re not dead yet!
About the authors
Charles A. Corr, PhD, CT, is professor emeritus, Southern Illinois University Edwardsville, and a member of the board of directors of The Hospice Institute of the Florida Suncoast. Donna M. Corr, RN, MS in Nursing, is a former professor of nursing, St. Louis Community College at Forest Park.
Chuck and Donna have been teaching in the field of death, dying and bereavement for over 30 years.
They are both long-term members of the International Work Group on Death, Dying, and Bereavement, where Chuck was chairperson from 1989-1993. Between them, the Corrs’ publications include more than 30 books and booklets, as well as over 100 articles and chapters, including the 6th edition of Death and Dying, Life and Living (Belmont, CA: Wadsworth Cengage Learning, 2009), co-authored with Clyde M. Nabe.