Support and planning leads to a better quality of life for the seriously ill and their families.
Palliative care is specialized medical care for people with serious or chronic illness. It focuses on providing relief from both symptoms and stress with a distinct goal of improving quality of life for both the patient and the family.
According to the Center to Advance Palliative Care, the number of palliative care programs in U.S. hospitals has multiplied by a massive 165 percent since 2000. As the number of Americans living with serious and chronic illness has increased, palliative care training and prevalence has followed. Complex patient needs and the burdens of their caregivers have pushed demand forward.
In addition, it’s a quality issue, says Touro’s Palliative and Supportive Care Services Family Nurse Practitioner Melissa Pennebaker. “Studies have shown that palliative care results in better satisfaction for the patient and better understanding of the situation for the family, so it’s a growing field,” she says. “We have an aging population, but palliative and supportive care can be appropriate at any age.”
Many different diagnoses are found in palliative care patients: kidney disease, dementia, heart failure, stroke, accident trauma and probably most frequently, cancer. At Touro, the palliative care and support team includes Pennebaker, two physicians, a chaplain, a clinical psychologist and several oncology nurses.
Palliative Care Myths and Misunderstandings
Palliative care isn’t just for patients who are dying.
Palliative care is not the same as hospice (although it can result in a hospice referral).
Palliative care does not mean the end of hope.
“On a day-to-day basis, my goal is to never take away someone’s hope,” Pennebaker says. “Although we may not be able to fix every patient, we can offer them hope. We can assure them that whatever time they have left, they will be comfortable and their wishes will be respected.”
She cites multiple examples of patients coming off treatments and going home to focus on comfort instead of a cure. Some of them live a long time and with a much better quality of life in that time.
What a Palliative Care Team Provides
Pain and Symptom Control Patients may experience uncomfortable symptoms such as trouble breathing, fatigue, depression and insomnia. The team will help identify discomfort and provide treatment to help manage these symptoms.
Communication and Coordination
The team’s focused communication between patient, family and physicians helps ensure all needs are met and includes establishing goals of care, helping with difficult decisions and coordinating care.
Emotional Support The team — focusing on the patient and not the disease — can address medical, social, emotional or spiritual needs.
The team helps alleviate burdensome and stressful decision-making by providing family/caregiver support.
Pennebaker says that education is the No. 1 role for the palliative care team, especially when a family is in denial. The team opens up discussions about what a patient’s wishes might be when that point arrives. Planning is the key, she says. Decision-making is so much less stressful for families if they are aware ahead of time how a patient would choose to be cared for.
“Most of the patients and families I see are very emotional and tearful,” Pennebaker says. “Not only because people are sad, but often because they’re relived that someone is coming to talk to them about these things. These are very difficult conversations.”
She relishes this intermediary position. “It’s really a privilege to work with these patients every day,” she says.
What Palliative Care can Help:
Improve quality of life
Avoid hospital visits
Decrease the length of hospital stays
Focus on safe care at home
Since Pennebaker works exclusively with palliative care patients, she can often help them and their families understand what is typically going to happen to them as an illness progresses.
“We help paint a picture of what each option looks like moving forward,” she says. “We respect their choice, whether it be comfort care or aggressive treatments. It’s our job to advocate for the patient. Many times we help the patient by educating their family on their illness trajectory. We can offer support for the family. We can reassure families that stopping treatment is not giving up. In many instances, it is a very loving gesture to decide enough is enough.”
Research & Resources
Louisiana physician’s orders for scope of treatment: lhcqf.org/lapost