Palliative Care Can Support You Through Serious Illness

Receiving a diagnosis for a serious health condition can be overwhelming. There are many difficult choices to make and a lot of uncertainty. Fortunately, palliative care professionals are available to guide you through the challenges that come with managing a long-term illness. Their focus is on comfort, symptom management, and improving your day-to-day quality of life.

“Palliative care takes a comprehensive view of treatment and support,” says Dr. Matthew DeCamp from the University of Colorado, Anschutz Medical Campus. “It emphasizes the individual’s well-being and honors their personal values and priorities.”

People often confuse palliative care with hospice. While both aim to provide comfort, hospice care is typically reserved for those nearing the end of life and no longer undergoing medical treatments. Palliative care, on the other hand, can be used alongside curative therapies and at any stage of a serious illness.

“Choosing palliative care doesn’t mean stopping treatment,” notes Dr. Alexis Bakos, an expert in aging at NIH. “Ideally, it should be integrated soon after diagnosis to offer the best support.”

Serious illnesses may include those with a high risk of death or those that greatly affect daily functioning and quality of life. Examples include chronic conditions such as heart and lung disease, cancer, and neurological disorders like dementia and Parkinson’s disease.

A palliative care team can provide support in various ways. They help patients and families manage physical symptoms, emotional stress, spiritual concerns, and psychological challenges. They also coordinate with your other health care providers to make the treatment process as smooth as possible.

Additionally, palliative care teams assist with developing an advance care plan—a document that outlines your treatment preferences and identifies who will make health decisions on your behalf if needed. They can also offer help with end-of-life choices, hospice care, and support for grieving families.

Creating a Care Plan

“The aim of palliative care is to relieve symptoms and improve quality of life,” explains Dr. Lori Wiener, who works with children with cancer at NIH. “Studies show that early introduction of palliative care has positive impacts on well-being.”

Since everyone defines quality of life differently, the palliative care team takes time to understand each patient’s unique situation. “We meet with patients early to learn about their medical background and what issues are most troubling to them,” says Wiener. “We also explore their care preferences and how they like to communicate.” This helps tailor the advance care plan to suit individual values and goals.

Wiener emphasizes that having these discussions before a medical emergency makes a crucial difference. “Waiting until a crisis or the final stages of life often robs people of the opportunity to express what truly matters to them.”

To help young patients voice their care wishes, Wiener and her team developed “Voicing My CHOiCES,” a guide for teens and young adults. It encourages them to reflect on and document what’s important to them, including their fears, hopes, and values.

They also created a tool called “Checking IN,” a digital screening survey that captures what symptoms or emotional issues are bothering a child upon arrival at their appointment. This advance knowledge allows doctors to address specific concerns more effectively, which is especially important since younger patients often struggle to express distress.

Understanding What Lies Ahead

Navigating a serious illness isn’t always clear. “Patients and their loved ones often have limited understanding of how an illness may progress,” says DeCamp. “There can be uncertainty about prognosis and the symptoms that may develop over time. Even experienced medical professionals can find it difficult to predict outcomes.”

Artificial intelligence (AI) tools are helping improve this understanding. These technologies can estimate how an illness might develop and what a person’s outlook might be. “When people have access to insight about their prognosis, they’re better prepared to make informed choices,” says DeCamp. “The hope is that AI can support care that aligns more closely with a person’s wishes.”

DeCamp explores the ethical concerns around using AI-generated “mortality scores,” which estimate the likelihood of survival over a six- to twelve-month period.

He points out that these scores sometimes appear in a patient’s records automatically. This might result in someone seeing information they weren’t prepared to face. Likewise, health care workers might access details that patients or families prefer to keep private.

Mortality scores can influence how care is discussed and provided. “If we put too much emphasis on the score,” DeCamp warns, “we risk losing focus on the broader goal of palliative care, which is to support physical comfort, emotional well-being, and spiritual needs.”

The reliability of these scores depends on whether the AI was trained on data that matches the patient’s demographic and clinical background. DeCamp and his research team are working to address these important ethical issues as AI becomes more common in healthcare settings.

Finding the Right Support

If you or a loved one has been diagnosed with a serious illness, consider discussing palliative care options with your doctor. Some providers may not suggest it early, or may not mention it at all. But referrals to palliative specialists are often available upon request.

“Earlier NIH studies focused on educating primary care doctors about the benefits of palliative care,” says Bakos. “Now efforts aim to involve more types of providers—like ER doctors, ICU staff, and neurologists—in having these important care conversations.”

Palliative care is available from the moment of diagnosis and can help patients manage symptoms, understand their treatment options, and improve the quality of their everyday life.