Being diagnosed with a serious illness is a life-altering event, bringing with it many uncertainties and crucial decisions. However, there are specialists who can help you navigate the complex journey of dealing with a long-term illness. Palliative care specialists are focused on comfort and improving quality of life, regardless of the severity of the condition.
Dr. Matthew DeCamp, a physician at the University of Colorado’s Anschutz Medical Campus, explains, “Palliative care is a holistic approach to medicine and caregiving, placing the patient’s quality of life, needs, and values front and center.”
Palliative care is often confused with hospice care. Both offer comfort and symptom management, but the key difference is that hospice care is reserved for the end of life and requires stopping all curative treatments. In contrast, palliative care can be provided alongside life-saving treatments.
“Choosing palliative care doesn’t mean giving up on treatment,” says Dr. Alexis Bakos, an aging expert at the National Institutes of Health (NIH). “Ideally, palliative care should be offered as soon as any serious illness is diagnosed.”
But what qualifies as a “serious illness”? Generally, it refers to conditions that either significantly lower quality of life or impair the ability to perform everyday activities. Examples include chronic heart and lung diseases, cancer, neurodegenerative diseases like dementia and Parkinson’s disease, among others.
A palliative care team can provide help with many aspects of living with a serious illness. They can guide you through physical, psychological, emotional, or spiritual suffering, assist with symptom management, and work with other healthcare providers to coordinate your care.
Additionally, the palliative team can assist you in creating an advance care plan, a document that outlines your wishes for future medical treatment, including who you would want to make decisions for you if you are unable. The team can also support you with end-of-life care, hospice services, and grief support if necessary.
The goal of palliative care is to alleviate symptoms and enhance quality of life. Dr. Lori Wiener, a palliative care expert for children with cancer at NIH, states, “There is strong evidence to support that early integration of palliative care improves health-related quality of life.”
However, the definition of a “better quality of life” can differ from person to person. Dr. Wiener explains, “The palliative care provider will meet with you early on to learn about your medical history and the symptoms that are most distressing. They will understand your preferences for care and communication.” From there, the provider can work with you to ensure that your advance care plan reflects your personal concerns and goals.
Unfortunately, these conversations often happen too late. “If you wait until you are facing a medical crisis or are at the end of life, you don’t have the time to think about what’s most important to you,” Dr. Wiener notes.
Dr. Wiener’s team studies how to help children with cancer express their care preferences to their families and doctors. They’ve created an advance care planning guide called “Voicing My CHOiCES” that helps teens and young adults think about and document their values, hopes, and fears.
The team also developed an electronic screening tool, “Checking IN,” which helps doctors understand what is most distressing to children and teens when they check into appointments. Often, emotional and physical distress in young patients with serious illnesses is overlooked, but this tool allows doctors to better address their needs ahead of the visit.
Planning for a serious illness can be complicated. “Patients and families often remain unaware of how their illness might progress,” says Dr. DeCamp. “They may not know how long they might live or what symptoms they may experience. Even doctors and other healthcare providers are often not good at predicting the course of a disease.”
Artificial intelligence (AI) tools are now being developed to predict the course of a person’s illness, or their prognosis. Dr. DeCamp says, “Understanding prognosis is crucial for making future care plans. AI-based tools promise to improve predictions for clinicians, patients, and families, helping them receive care that aligns with their wishes.”
Dr. DeCamp is studying the ethical issues surrounding the use of AI tools that calculate a “mortality score,” which estimates a patient’s chance of survival in the next six to twelve months.
These scores may sometimes be automatically included in medical records, Dr. DeCamp explains, which means a patient might accidentally see the score when they’re not prepared to hear about their survival chances, or healthcare providers might access it despite the family’s wishes.
“Knowing the mortality score can affect how a patient is treated,” Dr. DeCamp says. “If we become overly focused on that number, it could influence our communication with patients and families. It may also impact decision-making, which goes against the essence of palliative care, which focuses on addressing the full spectrum of a patient’s physical, social, psychological, and spiritual needs.”
The accuracy of AI predictions depends on several factors, including whether the AI is trained using data from individuals with similar backgrounds and health conditions. Dr. DeCamp’s team aims to address these ethical challenges as AI tools become more integrated into healthcare.
If you’ve been diagnosed with a serious illness, ask your doctor about palliative care. Some providers may not offer it to you right away, and others might not offer it at all. However, your doctor should be able to refer you to a palliative care specialist.
“Earlier research focused on making sure primary care providers were aware of palliative care,” Dr. Bakos explains. “Now, we are focusing on how to engage more specialists in palliative care conversations, including emergency room doctors, neurologists, and ICU providers.”
Palliative care can help you improve your quality of life and better understand your treatment options. It is available as soon as you are diagnosed with a serious illness. Learn more about palliative care and take the first step towards more holistic and compassionate care.