Living With Your Imminent Death

Despite this, end-of-life preparation is also precious. You have not passed yet, so this is a time for you to make choices that will affect the quality of your life now and in the near future. End-of-life preparation can also affect the lives of others around you in important ways. How you use the time available to you can be important. Carefully choosing how you spend your time wisely can make all the difference to you and those you love.

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 have 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.

If you're 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 long that may be, and whether it can be predicted with much accuracy, what you do have is now.

Adopting the motto “Make Today Count” doesn't 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.

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.

Russian writer Leo Tolstoy 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 became apparent to Ivan—as perhaps it only does for many others—only as he was confronting his imminent death after discovering in midlife 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.

Sudden death

It may not seem like any great benefit to be compelled to face your imminent death, but consider the alternative. Many human beings die suddenly, without warning, as victims of accidents, homicides or other calamities.

Though, 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 ones we leave behind and the horror that they must endure when such events occur.

What might be called the two-sidedness of death is one of its fundamental features. There is always one person who dies and at least one other person who is their 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.

Anticipated death

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.

End-of-life care: hospice and palliative care

In 2006, according to statistics from the National Hospice and Palliative Care Organization, American hospice programs served about 36% of all Americans who died that year. Also, more than 74% 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 seven 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.

Unfinished business: things to take care of before you die

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?

Advance directives

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 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?

Funeral planning

Preplanning a funeral or memorial service can be important to many facing imminent death. 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 advance arrangements with a funeral home or discussed with your family members:

• Whether to have a visitation, a burial and/or cremation or 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.

Estate planning

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.

Preparing your family

Many people, when facing their own death, want to help the people around them grieve them and find closure. To do this, they make sure to share thoughts and feelings that, for one reason or another, they’ve never shared before. This could be because they didn’t find the time or wanted to avoid a conflict.

Sharing feelings with those close to you can be a great comfort and help to everyone involved. This can include:

• Saying thank you to the people who’ve contributed to your life.
• Apologizing to the people you feel that you’ve hurt.
• Forgiving those who’ve hurt you.
• Expressing love and appreciation.

Sometimes even a simple goodbye goes a long way to reassuring people around you that you’re thinking of them and that they’re important to you.

For the people close to you, consider involving them in any care you’re undergoing if you’re able to and they’re willing. This can help them feel useful during a difficult time. It might also help to spend time with them, which can also help you cope with your own feelings. Your loved ones might begin to feel grief before you’ve actually passed, and you have a unique opportunity to help them by sharing these feelings and this time with them.

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 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.

Anticipatory grief

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 having children.

Each loss and grief reaction calls for an appropriate coping response.

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!

This article was written by Charles A. Corr, Ph.D., CT, and Dona M. Corr, RN, MS in Nursing.

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.