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Frank talk about death and directives
One of the main reasons hospices have difficulty promoting themselves is because most people generally choose not to think about death. But there are signs that health care providers outside the hospice industry are trying to communicate with their patients about the importance of planning for the inevitable and coming to terms with a terminal illness sooner rather than later.
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, says Elaine Glass, RN, MS, AOCN, clinical nurse specialist at James Cancer Hospital in Columbus, OH. At that time, people should receive literature that explains such intensive care treatments as cardiopulmonary resuscitation (CPR), ventilators, and artificial nutrition and hydration.
The topic of dying is a complicated subject. Perception of end-of-life care varies widely among individuals, cultures, and religions. There is no one-size-fits-all approach to getting the discussion rolling, 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.
Education and support regarding end-of-life issues should not be limited to the times when a terminal illness is diagnosed or when a patient experiences sudden death, Otis-Green advises.
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.
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.
People can benefit from examining their feelings about death before they are confronted with it. Everyone should address his or her own attitude toward death and how denial, anger, spiritual crisis, and acceptance play roles in our attitudes about death.
City of Hope takes a variety of approaches to education about death and dying issues. For example, information about what to expect during a terminal illness and near death should be available so caregivers will understand that when their loved one becomes withdrawn and disoriented, it is part of the natural process of dying.
Another part of the program will 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. For example, keeping a journal, writing poetry, and taking long walks may have helped this person adjust to her divorce. She can use those learned coping skills to help her deal with her current situation.
The social work department of Deborah Heart & Lung Center in Browns Mills, NJ, provides supportive counseling for patients and family members to help them get past the myths and mysteries of the dying process. "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.
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.
At James Cancer Center, patients are informed early in the process that advance directives will ensure that the patient’s wishes are followed. They’re also told that written instructions will absolve family members from having to make difficult decisions.
Values history’ states beliefs clearly
Experts suggest that when people create an advance directive, they should provide more detailed information than is required by state law and expand on their wishes regarding how matters should be handled at the time of their death. That’s why Glass wrote what she refers to as her "values history" in her own advanced directive.
In this document, she states her beliefs on various medical procedures, her attitude about organ donation, her views on health, and thoughts about independence and control. "I comment about not wanting to be disabled and physically limited in my movement," she explains. It includes her overall attitude about life, her religious background, and her beliefs about God and heaven.
There are other ways to provide pertinent details within advance directives, says Glass. Several years ago, the Journal of the American Society of Certified Life Underwriters published guidelines for making end-of-life decisions in four situations:
• if I were in a coma or persistent vegetative state;
• if I were in a coma and might survive;
• if I had brain damage;
• if I had brain damage and a terminal illness vs. no terminal illness.
In each situation, several medical treatment options were offered, such as CPR, a ventilator, nutrition and hydration, surgery, chemotherapy, invasive tests, blood products, and pain medicine. Under each treatment option, people could mark one of the following four options:
• I would want.
• I want treatment tried; if no clear improvement, stop.
• I am undecided.
• I don’t want.
Detailed written instructions remove any mysteries about the patient’s dying wishes. "A lot of physicians are uncomfortable in trusting families to make decisions that aren’t in writing, because they don’t know if the family is just after their inheritance," says Glass.