Being diagnosed with a serious illness is life-changing. Many decisions must be made, with many unknowns. But there are experts who can help you navigate the complicated landscape of a long-term, serious illness. Palliative care specialists focus on comfort care and improving your quality of life during a serious illness.
“Palliative care is a holistic approach to medicine and caregiving,” explains Dr. Matthew DeCamp, a physician at University of Colorado, Anschutz Medical Campus. “It places the patient’s quality of life and needs and values front and center.”
Sometimes, palliative care is confused with hospice care. Both offer comfort care and symptom management. Hospice is a type of palliative care that’s only offered at the end of life. It requires all treatments be stopped. But other types of palliative care can be offered alongside life-saving treatments.
“Embracing palliative care does not mean that you’re giving up on treatment,” says Dr. Alexis Bakos, an aging expert at NIH. “Ideally, palliative care should be offered at the very beginning of a diagnosis of any serious illness.”
What makes an illness “serious?” A high risk of death or one that lowers your quality of life or ability to perform daily tasks. Examples include chronic heart and lung diseases, cancer, neurodegenerative diseases like dementia and Parkinson’s, and many others.
A palliative care team can assist with many aspects of a serious illness. They can help you find ways to cope with physical, psychological, emotional, or spiritual suffering. They can support you with symptom management and assist health care providers in coordinating your care.
The palliative team can also help you create an advance care plan. This describes your wishes for future medical treatments. It includes who you want to make your medical decisions if you’re not able to. The team can also support you with end-of-life care, hospice care, and bereavement if needed.
Making a Plan
“The goal of palliative care is to lessen symptoms and enhance quality of life,” says Dr. Lori Wiener, a palliative care expert for children with cancer at NIH. “And there’s good data to support that early palliative care integration improves health-related quality of life.”
But what makes a better quality of life can be different for everyone. “The palliative care provider will meet with you really early on. They’ll find out about your medical history and the symptoms that are most distressing to you,” says Wiener.
“They will learn your preferences for care and communication.” Then, the provider can work with you to make sure your advance care plan reflects your concerns and goals.
“Unfortunately, advance care planning conversations often don’t happen until too late,” Wiener says. “If you wait until you are experiencing a medical crisis or if you are at the end of your life, you don’t really have the time to contemplate what is most important to you.”
Wiener’s team studies ways to help children with cancer communicate their care wishes to their family and health care providers. They’ve created an advance care planning guide, called “Voicing My CHOiCES.” It helps teens and young adults consider and document their values, hopes, and fears.
The team also developed an electronic distress screening tool, called “Checking IN.” This tool assesses what’s most distressing to the child. It asks about symptoms that interfere with their life when they check in to their appointment.
Then, it provides a report to the doctor ahead of time. Emotional and physical distress are often missed in children and teens with serious illnesses. Checking IN helps doctors learn about youths’ needs before their visit.
Gaining a Better Understanding
Planning for a serious illness can be complicated. “Patients and families often remain unaware of how their serious illness may progress,” says DeCamp.
“They may not know how long they might be expected to live or how long or what types of symptoms they might have. Physicians, nurses, and other members of the care team are also historically not very good at predicting the course of a disease.”
Artificial intelligence (AI) tools have become available to help predict the course of a person’s disease, or prognosis. “Understanding prognosis is one critical piece of information that people need for their future life and care plans,” DeCamp says.
“The promise of AI-based tools is that we can make better predictions for clinicians, patients, and families to enable them to get care that’s most consistent with their wishes.”
DeCamp is studying ethical issues around using an AI tool that calculates a “mortality score.” This score estimates a patient’s chance of survival over the next six to 12 months.
Sometimes these scores are automatically included in medical records, DeCamp says. So a patient may accidentally see it when they don’t want to know their chances of survival. Or health care staff may be able to view the scores, despite the families not wanting them to.
Knowing the mortality score has the potential to change how a patient is treated. “If we become overly focused on that number, it could affect how we talk to patients,” DeCamp explains.
“It could also affect the way patients and families make decisions versus what palliative care is really about, which is providing care across all of physical, social, psychological, and spiritual needs.”
The accuracy of AI predictions depends on many factors. These include whether the AI was trained using data from people with backgrounds and health conditions like the patient’s. DeCamp’s team is hoping to help address these types of ethical issues as AI tools become more available.
Getting the Help You Need
If you’ve been diagnosed with a serious illness, ask your doctor about pallia-tive care. Some providers may not offer it to you early on. Others may not offer it at all. But your provider may be able to refer you to a palliative care specialist.
“Earlier NIH research was focused on making sure that primary care clinicians were aware of palliative care,” Bakos explains. Now, NIH is looking at how to involve more specialists in palliative care conversations, such as emergency department physicians, neurologists, and intensive care unit providers.
Palliative care can help you improve your quality of life and understand your treatment options. It’s available as soon as you are diagnosed with a serious illness.
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Source: NIH.
