Questions Patients Should Ask Their Provider at Their First Carelon Palliative Care Appointment

Marge emphasizes the importance of patients asking how palliative care treatment operates, and that Carelon’s palliative care encourages patients to continue to ask questions. “What do patients know about palliative care, and what do they want to learn? That should be their first question. Do they know the difference between palliative care and hospice care?  Do they know they can continue to receive curative treatments while they receive palliative care, which is an important distinction between palliative and hospice? Patients should learn what to expect so they can make decisions in their best interests.”

When patients ask about their diagnoses, may they gain a clearer understanding of their conditions, treatment options, and care plans. The knowledge may empower patients to make informed decisions about their healthcare, which can lead to better adherence to treatment protocols, care management and improved overall health outcomes.

“In addition to patients asking about their diagnosis, they should ask about the diagnosis’s trajectory and the quality of life to expect. How does the patient see that trajectory?” says Marge.

Carelon believes that their palliative care teams devote more time to patient care than competitors. “We have the ability to explain potential patient outcomes in more detail,” says Marge. “We can inform patients as to how their diagnoses may evolve in the coming weeks, months, and years. Patients can use that opportunity to ask to have their test results explained, because patients tend to get overwhelmed. They can ask about medications and side effects.”  Our providers are trained to listen carefully for key patient concerns and fears.  Knowing those personal fears is critical to creating a focused care plan that keeps the patient in charge of how they experience their care.  It is often those fears that drive decisions to seek emergency or acute care.

Patients should ask who is on the care team and how multidisciplinary treatment in palliative care works. “The Carelon team includes a social worker, nurses, physicians and practitioners, available 24/7. Patients should advocate for themselves, asking what each provider does, how they interact with one another, and how that group effort will affect the patient’s treatment plan,” says Marge. “We want to empower patients and help guide them closely, helping them understand the role they play in best managing their own health outcomes.”

The process often includes the patient’s family, especially if the patient’s goals differ from those of their loved ones. “We help facilitate these discussions, especially if patient has trouble communicating and advocating for themselves, which might be for various reasons,” she adds.  Helping each patient to have their family members and caregivers in agreement with their specific goals and desires is another way of assuring that patients are in charge of their healthcare journey.

Asking how their health record is shared, and with whom, is a question the patient should ask at this time. “Patients should ask how often their information and electronic health records are shared, and with whom. We have a cadence in which we send information, and patients should ask about it. When we help patients prepare for visits with various providers on the team, this is one of the questions the patient should be asking.”

Asking questions allows patients to clarify their care goals and set realistic expectations with their providers. According to Marge, this alignment ensures that treatment aligns with the patient's wishes, leading to greater patient satisfaction, as well as reduced stress and anxiety.

“What is important to the patient? Is it the ability to continue to taste food, or attend celebrations? They need to know how a given medication might affect their ability to continue to do these things,” she explains. “Patients should practice some self-reflection and decide what is important to them. They need to understand that infusions might impact their ability to travel.”

Marge believes that once patients understand what type of lifestyle they want, they know what kinds of lifestyle questions to ask. “For example, a medication’s side effects are not always listed on the label. Those side effects can significantly affect a patient’s lifestyle and quality of life.”

“When caregivers come prepared to ask questions, they can shed light onto information that the patient may not share,” explains Marge. “Maybe the patient doesn’t want to eat their usual meals anymore – how should the loved one handle that?”

When caregivers ask questions, they assist the care journey. “Caregivers may want to know if it’s okay to let the patient make certain choices or opt out of things, such as taking walks. Receiving these answers helps the loved one accept the patient’s health care journey, which in turn helps the patient,” she says.

Patients should ask about advance or health care directives and end of life planning. “If they want their end-of-life wishes to be honored, they need to become informed so that they can document those wishes properly, says Marge. “We can help the patient complete state advance directives forms.”

Patients who are encouraged to ask questions may become more engaged in their healthcare. This engagement can lead to proactive management of their health, better self-care practices, and potentially better health outcomes.

Open communication fosters trust and strengthens the relationship between patients and providers. “Trust is crucial in palliative care,” emphasizes Marge. “Carelon’s palliative care services focuses not just on treatment but also on enhancing the patient’s quality of life. So when patients ask questions, they build a rapport and trust with us that will lead to more effective care, tailored to their needs and goals, which will ultimately improve their quality of life.”