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"...how to calculate the dose of hope..."

There was an interesting article in last Tuesday's New York Times reviewing a book called "Swimming in a Sea of Death".  The book was written by the son of author Susan Sontag about her long agonizing battle with cancer.  Ms. Sontag 'beat' two types of cancer before finally succumbing to a third after a long, painful battle.  Throughout her struggle, Ms. Sontag mainatined that she would beat this third cancer.  Her son's role was head cheerleader. "His job was to enthusiastically endorse her struggle, always to be optimistic and supportive and never, ever to talk about death." In spite of her being "...covered in sores, incontinent, and half delirious" his role was to tell her she looked better than the day before, that she was improving.

The point that struck me most was this: the son "wound up entangled in the single biggest dilemma in medicine: how to calculate the dose of hope, that most powerful of all medications, to be dispensed in hopeless cases.  The professionals stumble here all the time.  No child could or should be asked to get it right for a parent"

When my mother's father was in hospice with lymphoma about 10 years ago, I can recall visiting him and struggling with the same question. I stayed always optimistic, and some extent in denial, about the prospects of recovery.  And yet it felt disingenuous.  And that's a lousy way to feel in the final weeks or days of a relationship with a loved one.

Comments

 

Pamela Talon said:

Good topic John. Hope is said to be one of the great healing powers. Here's another good story.

The Power Of Hope

Ernest H. Rosenbaum, MD and Isadora R. Rosenbaum, MA

Look to this day for it is life,

For yesterday is already a dream,

And tomorrow is only a vision.

But today, well lived, makes every yesterday

A dream of happiness and every tomorrow, a vision of hope.

   Sanskrit Proverb

If you or someone close to you is living with an illness or the debilitating results of an accident, you will undoubtedly empathize with the thoughts and emotions expressed by others who have similar experiences. Their depression, anxiety about the future, and fear of suffering and dying are familiar to all of us, but so are their efforts to seek knowledge about their condition and to regain control over their lives.

In the process of reestablishing personal autonomy, these individuals accepted responsibility for their physical and emotional well-being. They recognized that their attitude toward their illness and, by extension, the way in which they portrayed it to others would determine how friends, family, and colleagues would react to them. But they chose to consider this reminder of their mortality as a wake-up call that led them to reassess their values and to either confirm or change their way of life. Each of them nurtured old relationships and developed new ones; each lived life more fully while learning to live with illness. Each of them found hope.

The same opportunity to acknowledge our mortality and examine our priorities is available to all of us the temporarily healthy and those with illness. David Spiegel, MD questions--What is important to us? How do we want to live the rest of our lives? If we discover behaviors or habits we wish to change, we are free to begin experimenting in that direction. We too may start to take risks, open our minds to other modes of thought, take a trip or a class, and make new friends. Anyone who goes through this process will undergo permanent, positive change and will have begun to nurture the will to live.

Although we cannot precisely define the will to live, we have identified the following attitudes and behaviors common to those in this book as well as to other patients observed over many years of practice:

They live in the present. They know the past cannot be changed, but they also know they have the capacity to influence the quality of today and tomorrow.

They accept their new problems and attempt to solve them through introspection, understanding, and sharing.

They set reasonable, achievable goals.

They consciously try to downplay negative emotions and to focus on feelings of love and hope.

They surround themselves with supportive friends and family members.

They actively search for ways to help others.

We, as care givers, consider the first five attitudes and behaviors to be essential. Those who practice them are taking responsibility for their illness and ensuring that their needs are met. The sixth represents a principle we have long recognized as vital to a fulfilling life: Try every day to help someone else! When our own needs are met, we are emotionally free to give to others. For (one patient), what was important was smiling at passersby; for Zelina, it was giving an unhappy child a hug; for Madison, it was sharing the joys and sorrows of a friend. As a result of their suffering, these people had something special to give. You, the reader, also have something special to give to others as a result of the sensitivities you've developed through your own suffering. You too can reach out, relieve loneliness, give hope.

Of all the ingredients of the will to live, none is more essential than hope. But hope is relative: One person may hope for the fullest possible remaining life; another may hope to live until a special holiday or a family reunion; still another may simply hope to avoid suffering.

Doctors can contribute substantially to a patient's feelings of hope not false hope, but realistic hope. When a patient asks, "How long have I got?" some physicians will respond, "six months," a year," "two years," and quote clinical statistics for that person's disease. What these physicians often forget to mention is that statistics are averages, compiled from survival data on a great number of individuals, some of whom obviously lived much longer than the average, and others a much shorter time. As many of the individuals in this book demonstrate, it is impossible to predict any person's longevity. Even after a patient has begun a particular therapy, it takes time to determine whether it will have the desired effect. But even if it fails, another one may be highly successful.

Hope may indeed be one of the elements that enables a person to live longer than medically anticipated. However, the opposite is also true. An extreme lack of hope can have the same effect as the phenomenon called self-willed death or bone pointing, observed among Australian Aborigines and in other South Pacific cultures. In such cases, a tribal witch doctor casts a spell similar to that observed in Voodoo (in certain African or South American tribes), causing the victim to suffer paralyzing fear, withdraw from society, and die within a short time. Of course, the witch doctor can only be effective if the potential victim believes in the power of the curse. In the same way, a person with an illness can be adversely affected when doctors and nurses project a sense of hopelessness, or when family and friends are unable to hide their fears. (Paradoxically, such people are often projecting concern over their own mortality, not that of the patient!)

Clearly, realistic hope is a life force in and of itself. If you are dealing with a serious illness, you may often feel exhausted, overwhelmed by never-ending problems, ready to give up. Yet, a little hope a remote chance for survival or a small improvement in your condition can give you the strength to carry on.

There is no medicine like hope No incentive so great And no tonic so powerful As the expectation Of something better tomorrow.

   Orison Swett Marden

In conclusion, the will to live both defies definition and has many definitions, as demonstrated by our contributors. We can only describe common behaviors and attitudes among those who have it, and acknowledge its wondrous power. People who exhibit a strong will to live appear to have strong bonds of friendship and love. They also show a determination to meet misfortune head on to accept what has happened and find a way to cope. Part of this process involves finding out everything they can about their condition and treatment alternatives and discussing these facts with their doctors and those close to them. They certainly reexamine their priorities. Most important, perhaps as a result of the foregoing, people with the will to live are determined to live life to the fullest, be this for one week or a natural life span.

Finally, most of us do not discover the great, untapped force of the will to live until we are faced with an illness or other crisis. Yet we all have the ability to unearth its potential. We hope that the stories of the courageous people in this book will inspire you to delve into your innermost being and live every succeeding moment from your mind and heart.

Rekindle your Inner Fire - your will to live,

You still have time to live.

How you live is your decision

February 4, 2008 12:27 PM

About JohnT

I am one of the co-founders of A Place for Mom. We created the company because we felt there had to be a better way to find eldercare options in the US. We've created this community site because of a strong, deep belief that families will benefit greatly from talking to others who are struggling with the exact same eldercare issues. The thing I hear most often from families is their sense of being all alone and without help in their efforts to care for an aging loved one. Yet the fact is that there are over 10 million people involved in caregiving for loved ones every day! It is our goal to provide a place for those people to meet and share.
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