As more individuals with chronic conditions live longer, palliative care is becoming increasingly common and important. In my experience, many people confuse it with hospice care, which is palliative care at the end of life. But neurologists can initiate all aspects of palliative care from the moment of diagnosis. To some degree, all doctors provide palliative care by maximizing function and improving quality of life for their patients.

I always emphasize with my patients that palliative care is not related to prognosis: A serious or advanced medical condition is not necessarily terminal. In fact, some neurologic diseases once considered terminal are now classified as chronic because of advances in treatment and management.

For patients who have serious, advanced, or chronic medical conditions, palliative care encompasses four main areas: managing symptoms, supporting caregivers, setting goals of care, and planning advance care.

1. Symptom management: This includes controlling pain, nausea, constipation, fatigue, anxiety, depression, and delirium, and increasing mobility, if applicable.
2. Caregiver support: Family members and other caregivers need assistance in determining when additional help is needed, transitioning a loved one to a facility, and ensuring they maintain their own quality of life. My team and I try to alleviate their burden, which can be stressful and affect physical and psychological health. We do that by helping caregivers get the right equipment (such as a lift or a bedside commode) for their loved ones and arranging respite care so they can get a break and take care of themselves.
3. Goal setting: In my practice, I help patients and their families identify the level and kind of care they want and ensure that the care they receive aligns with their preferences. I also work with patients and caregivers to develop a plan to reduce symptoms and improve treatment so patients can achieve their goals—which might be to play with their grandchildren or plant flowers in their garden. For patients who want to travel the world, for example, but whose medical condition makes that too challenging, I’ll guide them in reframing the goal by suggesting they watch travel shows or invite over friends who can share photographs and stories from their trips. I try to be as creative as possible to help patients accomplish their goals given their health problems. Once we’ve had a conversation about their condition, most of my patients set realistic goals.
4. Advance care planning: Many of my patients and their families are hesitant to talk about end-of-life concerns, but in order to provide the best care, my team and I need to know what a patient’s wishes are when that time comes. I tell patients that spelling out their wishes in specific terms is the best gift they can give their friends and families. Everyone—not just patients—should have valid documents such as a living will, health care proxy, DNR (do not resuscitate) order, and power of attorney in place. I remind patients that they can change their mind at any time. I also encourage them to review and revise their documents during times of transition—if they get a divorce, start another decade of life, receive a new diagnosis, have a decline in health, or experience the death of a loved one.

I tell my patients that the first step in advance care planning is to assign a health care surrogate, someone who would make health care decisions on their behalf when they no longer have the capacity—even if it’s not what the surrogate would want. To help patients prepare, I encourage them to answer a series of questions like, “If you are at the end of life with no reasonable chance of recovery, would you want to be on a ventilator or receive artificial nutrition?” “Do you want CPR attempted when your heart stops?” “Would you want treatments and procedures that prolong life without improving quality of life?” I encourage all my patients to put their answers in writing and discuss these decisions frankly with someone who will honor their wishes.

Many of the families I work with have told me that they regretted not having these conversations before their loved ones could no longer make decisions for themselves, because of age or condition. For example, the adult children of one of my patients disagreed on what their 76-year-old father would want after he became incapacitated. Some of his children thought he would not want to be kept alive artificially; others wanted to keep him alive at all costs. Six years after their father died, I touched base with one of the children who said she wished she and her siblings had had a conversation with their father about his wishes. They’ve all since taken that step themselves. I know that emotions can run high at this time, and in the heat of the moment people can forget what their parent or spouse said. This is why it’s important to write down end-of-life wishes, so no one has to guess.

I’ve had many patients say to me after a palliative care consultation, “That wasn’t as bad as I thought” and “Why wasn’t I referred to you sooner?” I consider these the greatest compliments.

Maisha Robinson, MD, is assistant professor of neurology and a neuro-hospitalist and neuro-palliative care specialist at Mayo Clinic in Jacksonville, FL.