Measuring the patient’s quality of life
Assessment tool may work for all patients
Sometimes the best way to get a true answer is to look at a person’s interpretation of the question. With this in mind, researchers are now asking hospice patients around the country, "How would your rate your quality of life?" More than 500 patients have participated in and shown improvement during the course of multi-phased questioning and staff interventions.
If health care providers can help patients, particularly those at the end of life, define their well-being, they will be better able to improve the dying experience for patients and their families. In the long term, this may allay ethical dilemmas as well.
"The key is to get at what dimension is detracting from the patient’s quality of life," says Melanie Merriman, PhD, director of outcomes management and research for VITAS Healthcare Corp., a hospice and home health provider in Miami. "This is not about objective measures, but it is about determining the aspects of a patient’s life that they may value the most.
"For example, the lack of, or the severity level of pain and suffering is what the patient says it is, not what any clinician can read or interpret."
What the questionnaire aims to determine is how something intangible like pain and suffering affects a person’s life. "It takes awhile to pull this information out. It is not something we can easily identify upon the patient’s admission."
Patients are asked to rate the importance of five dimensions of their quality of life, namely: symptoms, functions, interpersonal relationships, emotional well-being, and transcendence. In the initial model of this Quality of Life Index, there are 25 questions, five in each dimension. Items are scored for agreement or disagreement and totalled within each dimension. Patients complete the questionnaire upon admission to hospice, again in 20 days, and at 45- and 30-day intervals thereafter. (See charts, at right.)
Only the patient can complete the questionnaire, Merriman says. "This is what makes the answers truly meaningful." The language is subjective, she explains. Patients rate on a scale of one to five if they agree or disagree with a particular statement, such as these, taken from the dimensions:
• "I feel sick all the time."
• "I am able to do the things I want to do."
• "I am satisfied with my level of independence."
• "I feel that my life has meaning."
Some hospices have used a smaller version of the 25-question quality index. The tool gives the caregiver a measure of what is valuable to patients and helps focus in on what that staff can do to help patients have a better quality of life, Merriman says.
However, it is neither a functional assessment nor way to define best practices. "People often ask, If the patient scores X, what interventions work best?’" she says. "There is no such thing as a perfect answer for all patients or a perfect score."
Small comforts make a big difference
The results so far are surprising, she adds. "It has been interesting to see how long it takes to see a change in patient scores and what increases the patient’s quality of life." Simple things like a holding a person’s hand or making a family member more comfortable in caring for the patient’s everyday needs can increase the quality of life for that patient. "What we are seeing clearly is that the patient’s score increases the longer he or she is on hospice service," Merriman says.
In Ohio, more than 30 hospices are using the quality of life measurement, and the remainder of the state’s hospice programs will be trained to do so by this fall, says Melinda Garverick, director of communication and education at the Ohio Hospice Organization in Columbus. "The staff feels that the tool helps them as well as the patient," she says. "If there is a negative response in a certain dimension for a number of patients, it serves as an immediate springboard of discussion for the staff." If, for example, there is a low score in transcendence, the staff will contact the hospice chaplain, the patient’s own clergy member, or a bereavement team member.
Garverick says another benefit is that the tool allows the hospice to do something it has found elusive: define what hospice can do for a patient and define patient outcomes from hospice care.
Merriman says the tool is used by team members to start a discussion with family members and is a enhancement for physician/patient communication. "Doctors are used to looking at lab numbers and other scores. They seem comfortable with this tool because it plots out a patient’s score. Most importantly, it helps doctors talk about those things that are most meaningful and valuable to the patient."
As more hospices use the tool, she sees other patterns emerging. "What we see before we use the tool is patients talking in a language of physical symptoms. Afterward, they talk more about values. The tool helps people communicate when there is no language to express how they feel," she says.
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