Individual approach is best for educational issues surrounding end of life

Education and support must be tailored to each individual’s unique needs at a difficult time

Death is inevitable. We are reminded of our mortality every day in many ways. It often crosses our mind when we drive past a funeral home or a hospital. We think about death when we hear the traffic report and there has been a fatal accident.

Yet, in reality, most of the time people live with a perception of personal immortality, says Shirley Otis-Green, ACSW, LCSW, clinical social worker in supportive care and palliative medicine at City of Hope National Medical Center in Duarte, CA.

In visiting the bedsides of dying patients, Otis-Green has noticed that the biggest difference in the degree of suffering is in the amount of regret the person has experienced in life. For example, one terminally ill patient had lived her life for her children and husband. She knew their favorite colors and foods, but not her own. She had never developed, expressed, or shared her talents and was therefore experiencing enormous regrets. "If we live life where we minimize our regret, then we are better able to live a life that might be lengthened," Otis-Green says.

It is helpful for people to keep short journal accounts of feelings toward death and develop coping skills that will serve them well during times of crisis, she says. People can benefit from examining their feelings about death before they are confronted with it. Therefore, education and support around end-of-life issues should not be limited to the times when a terminal illness is diagnosed or when a patient experiences sudden death, she advises.

Elaine Glass, RN, MS, AOCN, clinical nurse specialist at James Cancer Hospital in Columbus, OH, agrees. The time to educate people about advance directives is not in the hospital before a procedure, but in the physician’s office while they are healthy. At that time, people should receive literature that explains such intensive care treatments as cardiopulmonary resuscitation (CPR), ventilators, and artificial nutrition and hydration. "A lot of the legal and ethical issues have been around younger people who didn’t think they would get sick or hit by the truck and they did," says Glass. (For innovative ideas on writing advance directives, see story on p. 76.)

The truth is, much of the education and support around end-of-life issues comes after the fact because most Americans skirt the topic. The process is complicated, too, for there is no one-size-fits-all approach, explains Otis-Green. Instead, each person must be addressed in terms of his or her attitude toward death: denial, anger, spiritual crisis, or accepting. There are many ways to do this.

At City of Hope, a new program is being developed to help patients and their family members move through the dying process. The program is called Transitions: Supporting You Through the Journey of Change. "We are trying to develop a compassionate, caring, comprehensive model that looks at how we can help the person understand by giving them education, support, and the tools they need," explains Otis-Green.

For example, information about what to expect will be available so caregivers will know that at some point, a dying person is likely to become withdrawn from news and events and become disoriented to time, date, and place. People who know what to expect are more likely to remain calm.

Another part of the program will be to help people access their own resources. While a daughter may not have lost her mother to breast cancer before, she has dealt with other losses, challenges, and crises and can take what she has learned from these past experiences and apply it to the current situation. Keeping a journal, writing poetry, and taking long walks may have helped this person adjust to her divorce, and she can use those coping techniques in her current situation.

Supportive counseling for patients and family members from the social work department is provided at Deborah Heart & Lung Center in Browns Mills, NJ. "A lot of time is spent on support, just getting them to verbalize their fears and concerns and ask questions," says Michelle Goffney, BSW, MSW, LCSW, director of social services at the medical facility.

At James Cancer Hospital, three mental health clinical specialists help patients cope with the issues facing them. One-on-one facilitation works best for the hospital’s Midwestern patient population, says Glass. Also, Glass sometimes gives patients and family members materials from Fort Wayne, IN-based Willowgreen Productions that help to bring meaning and purpose to the dying process.

One helpful book for family members is titled One You Love is Dying: 12 Thoughts to Guide You on Your Journey. The book helps family members continue to enjoy a positive relationship with the dying patient in spite of their situation. (For information on how to obtain this book, see Editor’s note at the end of this article.)

Getting people to identify and express their needs is key. To aid in the process, City of Hope is implementing distress guidelines. At every clinic visit, patients will have an opportunity to fill out a self-rated scale that indicates their psychological level of distress, level of fatigue, and level of pain. "We want to help highlight what is important to talk about, and patients don’t always know they can talk to their doctors about these areas," says Otis-Green.

The scale will be used to help people learn that these areas need to be addressed. If patients are experiencing despair, a counselor can work with them to address what is bothering them. Suffering at the end of life is multidimensional. Most patients think health care workers are only interested in the physiological aspect of their suffering, not the spiritual, social, and psychological aspects.

Yet, good pain control should be the No. 1 goal for a terminally ill patient, because without it, social, psychological, and spiritual needs can’t be met, says Glass.

For good pain control, patients need to learn to have better communication skills and higher expectations so that when their physician says, "How are you doing?" they don’t automatically reply "fine," says Otis-Green. At City of Hope’s pain service, patients are taught to provide details when describing their pain to their physician. Much of the education centers on giving the patient permission to "complain" because people have been taught to be stoic.

"We tell patients we are not really asking them to complain to their physician. We are asking them to give feedback," says Otis-Green. (For more information on education surrounding pain medications, see article on p. 78.)

The issues surrounding a terminally ill patient are quite different from those at the bedside of a patient on life support following an accident. When a patient is on life support, family members often are being asked to decide whether or not to terminate the support; this usually is a very difficult decision because most families have never talked about this topic with their loved one. To aid families in making this decision, James Cancer Hospital is in the process of creating a pamphlet with the current working title, "Letting a Loved One Go." The pamphlet is designed to help families make the decision about whether or not to withdraw life support.

Family members often don’t understand the concept of withdrawing life support. Their image usually is one of pulling a plug, says Goffney. It’s important to explain that decreasing ventilator support is a gradual process accompanied by measures to keep the patient comfortable with medications.

"Sudden death is the hardest because there is no restoration, no goodbyes," says Karen Kent-Metteer, MDiv, lead chaplain at City of Hope’s National Medical Center Pastoral Care Services. There is no closure; no chance for any kind of forgiveness or reconciliation between family members; and no opportunity to come to terms with God and faith, she explains. (For more information on how spirituality factors into end-of-life issues, see article on p. 75.)

At the time of death, loved ones experience shock and disbelief, which is a natural set of reactions regardless of what culture a person is from, says Kent-Metteer. "The biggest spiritual issue at this time is their questioning of why God would allow such a thing to happen," she says.

Bereavement classes work well at these times because grief is something people hold inside. It is not resolved until it is effectively mourned. "Mourning takes place in a public context. Therefore, anyone who withdraws in their grief is at risk. In a bereavement group, they basically share, which is what mourning is all about," says Kent-Metteer.

[Editor’s note: The book One You Love is Dying: 12 Thoughts to Guide You on Your Journey by James E. Miller costs $6.95 and can be ordered from Willowgreen Productions’ Web site: Miller, founder of Willowgreen Productions, designs resources and programs in the areas of life transition, illness, dying, loss and grief, caregiving, older age, and spirituality. For more information, contact: James E. Miller, Willowgreen Productions, 509 West Washington Blvd., Fort Wayne, IN 46802. Telephone: (219) 424-7916. Fax: (219) 466-3002.]