Applying strategic planning to end-of-life decisions
Business computer models improve palliative care
Question: What do managing investment portfolios, designing video games, and end-of-life issues have in common?
Answer: They can all use the same computer-based advanced technology to make sound decisions — high-tech tools that take users through the same kind of decision-making process used by corporate executives.
A joint venture undertaken by Michigan State University, the Henry Ford Health System, the Robert Wood Johnson Foundation, and the Michigan Department of Community Health has produced an interactive CD-ROM that aids patients and families with the practical, emotional, spiritual, and medical decisions critical illnesses bring.
And Aliah, Inc., a Pittsburgh-based company that offers software, training, and e-Decision applications used in business since 1994, has come out with a computer program called LifePath which it says helps users rank the things most important to them about their own deaths or those of family members.
Advocates for improving the quality of end-of-life care say programs like LifePath and CD-ROMs like Completing a Life will make more people aware of the need to plan for their medical, personal, and financial needs, thereby making a big positive difference in outcomes.
"Completing a Life helps people facing end-of-life journeys," says Karen Ogle, MD, who worked on the project. Ogle, who directs the Palliative Care and Research Program at Michigan State University, says the new technology allows people to plan for the future they want and increase their sense of control in situations that usually cause feelings of powerlessness.
CD-ROM provides dual benefits
Ogle notes that that the CD can be given to patients "as an important tool for planning the future of their illness and determining what they want to do with the rest of life. This might help them review their goals and look at strategies for meeting them."
Ogle points out that even when the patient is too ill to use the resource, the family can certainly benefit from it. "Many patients . . . are able to communicate with their families and thereby use the resource second-hand," Ogle says.
She points out that many patients have a terminal prognosis that hasn’t been discussed enough to help them make the kinds of decisions that would keep them out of the critical care unit. "When we look at surveys of the public at large, an overwhelming majority of people don’t want heroic measures when there’s no significant chance of that leading to a longer life with quality," she says.
Completing a Life is divided into three parts:
- Taking Charge: This includes staying active in decisions about health care, family, and everyday living.
- Finding Comfort: This involves easing pain and suffering and living with dignity at the end of life.
- Reaching Closure: This includes coming to terms with the past, present, and future, and exploring the possibilities for spiritual growth.
Angela Lambing, MSN, RN, nurse practitioner at Henry Ford Hospital in Detroit and project manager for Completing a Life, observes that communication skills are noticeably absent in current curricula for interns and residents. Lambing says Completing a Life, which can be ordered by mail or downloaded via a high-speed Internet connection, will be sent to key medical and nursing schools, hospice organizations, oncology nurses, and palliative care physicians.
"Every doctor in our health care system will get a copy of this," Lambing says. "Our goal is to have them recognize they can learn from it and also use it as a communication tool with patients. It’s not a replacement communication, it’s a bridge."
The product works with a computer’s web browser and contains more than 100 separate topic pages linked by navigation tools. The material covers a wide range of concerns, from obtaining good pain relief and family communication to writing advance directives and finding spiritual peace.
Completing a Life also has a section on different diseases and where to get resource materials about them. "We have the ability to make people live longer," Ogle notes. "What we’ve not been doing is making that a worthwhile experience." During tests of the first version, a breast cancer patient in her 30s asked if using the CD would help her find the right words in talking about death with her kids. The production team hadn’t focused on terminal patients with young children, a need they quickly filled.
Patients offer personal testimony
The first section explores financial, funeral, and medical planning topics such as creating an advance directive, finding a doctor with whom the patient is comfortable, and asking the right questions. Completing a Life features videos of nine patients who offer personal testimonies that can act as a virtual support group. It also describes what families can expect during the last hours of dying. "Users can pick and choose the topics important to them in the privacy of their own homes," Lambing says.
Ogle says her group plans to evaluate the CD’s use, initially focusing on patients with cancer diagnoses. There’s been some public feedback already, in the form of more than 100 e-mail requests received for the CD in the wake of a New York Times article.
Aliah’s LifePath is one of the Personal Decision Process (PDP) programs the company designed based on business strategies. However, while strategic thinking traditionally places much weight on the rational part of decision-making, PDP programs factor emotion, intuition, and opinions into the mix via a pair of templates that can be used together or alone. One template helps the individual to assess satisfaction with quality-of-life criteria and make choices based on that assessment. The other helps the user set goals and identify needed improvements. Using the templates together, an individual can better assure that his goals are improving his quality of life.
The quality-of-life assessment tool can be used through web applications, software run on PCs, a network, or database integration.
[Editor’s note: For more information on Completing a Life, call (313) 714-2455. You can also visit www.completingalife.msu.edu on the the Internet. For more information on LifePath, call (412) 621-4500 or visit www.aliah.com.]
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