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Palliative care: Not just for end of life
Education is important for end-of-life care
Patients and caregivers often are not familiar with palliative care, or they misunderstand its purpose. Therefore, education on the reasons to make use of a multidisciplinary palliative care team and the benefits provided is important. (For more information about educating people on palliative care, see related story, below.)
For most, the word does not have a lot of meaning, or they worry that palliative care is end-of-life care, says Steven Z. Pantilat, MD, FAAHPM, SFHM, professor of clinical medicine and director of the Palliative Care Program and Palliative Care Leadership Center at the University of California, San Francisco. It is care focused on improving quality of life for people with a serious illness such as heart failure, cancer, dementia, Alzheimer's disease, chronic lung disease, and chronic liver disease.
"People who may not understand what palliative care is can certainly relate to what palliative care does," says Pantilat.
Anyone with a serious and complex illness that needs help with pain or other symptom control such as fatigue, anxiety, sleeplessness, or shortness of breath benefits from palliative care, says Nathan Goldstein, MD, associate professor of the Brookdale Department of Geriatrics and Palliative Medicine, Hertzberg Palliative Care Institute, at Mount Sinai Medical Center in New York City. Palliative care also helps patients better understand their disease, develop goals for medical care, and tailor treatment to those goals.
Clinicians help patients and family members make decisions all the time, but the way a palliative care team helps is different, explains Goldstein. While physicians might ask patients if they want to continue with chemotherapy, members of a palliative care team work with patients to understand what is important to them at a given point in their illness. Also team members ask what their hopes and fears are, and they use the information to help patients make decisions. A palliative care team includes doctors, nurses, and other specialists such as social workers and chaplains.
Expertise in multiple issues
Often what is different about palliative care is the interdisciplinary nature of the team addressing medical, social, psychological, emotional, and spiritual issues that impact a patient's care in a comprehensive way.
"Experts who know how to talk with patients to help understand what their goals are and help ensure their treatment matches their preference," says Pantilat.
When a medical team focuses on disease management, issues that aren't addressed by this approach often get missed, he adds. Waking up in the middle of the night short of breath for someone who lives alone might have psychological implications. Adjusting medications is important, but it might not be the entire answer, says Pantilat. The patient might need someone to telephone or even someone to stay overnight.
It's important for staff to be educated on palliative care as well so the team can be set in place at the appropriate time, says Goldstein.
"The earlier we are called in, the better we can help patients cope with serious illness. The talking points of palliative care is not end-of-life care; it is care much earlier for patients to help them make complex decisions as well as support them during these really difficult medical situations," Goldstein explains.
Palliative care teams enhance education
Devoting time to quality-of-life issues
Physicians and nurses helping patients learn to manage disease such as heart failure often have no time to talk about patients' preferences for care, if continued interventions are consistent with their goals, and what is hampering their quality of life.
A discussion about a patient's goals and preferences can't be done in five minutes, says Steven Z. Pantilat, MD, FAAHPM, SFHM, professor of clinical medicine and director of the Palliative Care Program and Palliative Care Leadership Center at the University of California, San Francisco.
A palliative care team can fill this gap in education. Team members can take time to discuss options and gain an understanding of what is important to patients, what they value, and what kinds of outcomes and states of health are acceptable to them and which are not. Once this information is understood, the treatment can support their goals, he says.
"Gaps in education may be helping people understand goals of care and letting them know about the opportunity to document their goals and preferences for care," says Pantilat.
In addition, at University of California, San Francisco, a palliative care team assesses a broad range of symptoms that include emotional and psychological issues as well as physical. Patients who are not taking their medication successfully might not need instruction on the medication regimen but might need help with depression, says Pantilat.
Members of palliative care teams have special training in communication to help determine what a patient knows about their condition, what they understand, and what they want to know, says Nathan Goldstein, MD, associate professor at the Brookdale Department of Geriatrics and Palliative Medicine, Hertzberg Palliative Care Institute, Mount Sinai Medical Center in New York City. "We figure out where patients are in their understanding and then help them move along in terms of their understanding and their education," explains Goldstein.