Facing a serious illness is difficult. You’re balancing multiple visits with doctors, side effects from your disease or treatment, worries about your family and the emotional impacts of being sick.
Palliative care can help with all of those concerns, and it’s available from the time you receive a new diagnosis. “Palliative” comes from the verb “palliate,” which literally means to “reduce the violence of” a disease.
Put another way: “Palliative care works alongside your doctors to improve your quality of life,” says Jared Lowe, MD, a UNC Health hospice and palliative medicine physician. “Your primary doctor focuses on treating the underlying disease, while the goal of palliative care is to treat your needs as a person to improve your situation.”
Hospice care falls under the broad umbrella term of palliative care, but it’s specifically for patients in the final months of life. Many people get the terms confused, so Dr. Lowe explains what you need to know about these types of care.
What is palliative care?
Palliative care is available for a person with any serious illness, including cancer, heart and lung disease, and dementia and other neurodegenerative disorders. Doctors, physician assistants, nurses, social workers, chaplains and other therapists work together to provide palliative care.
Your doctor may refer you to palliative care when you begin treatment because palliative care providers can help you manage the symptoms and side effects associated with your disease, such as pain, shortness of breath, constipation or nausea.
Managing pain and side effects can help you do the things you love, even during treatment.
“We learn what’s important for the person during their treatment and serve as their advocate,” Dr. Lowe says. “We understand your goals and make sure the medically available options are aligned with those goals.”
That means supporting you in taking advantage of all available options in pursuit of cure or remission, but if your disease progresses and your options change, they can help navigate your next best step. Palliative care providers can help your entire family when you are considering various treatment options and what they would mean for your quality of life.
“We can facilitate family meetings and be the medical interpreter, which helps all family members understand what’s going on,” Dr. Lowe says. “We can help to serve as a sounding board for those tough medical decisions and help you make those decisions as a family.”
Palliative care providers can also help with advance care planning, ensuring you’ve identified someone to make medical decisions for you if you’re not able, and documenting whether you want interventions such as intubation and ventilation or a feeding tube.
“You might not have control over a disease like cancer, but you do have a sense of control in setting these goals and identifying what you want and don’t want,” Dr. Lowe says. “These conversations return some of the power to you.”
In addition to providing support for physical symptoms, palliative care providers can connect you to spiritual and emotional resources, whether that’s a chaplain or religious leader, a therapist or a support group.
What is hospice care?
Hospice care is available when you and your doctor have decided that there are no more viable treatment options to pursue. To qualify for hospice care, your doctor must determine that death is likely in the next six months.
“Hospice care focuses exclusively on comfort for people and their families,” Dr. Lowe says. “You still treat symptoms like pain, but the person is no longer receiving curative treatment. It provides end-of-life care with dignity.”
Hospice is an insurance benefit, which means that you find a hospice provider and enroll with them. The hospice agency then administers all of your healthcare, providing you with a team of medical professionals for your care and medical equipment and supplies for your home. You can designate a doctor, usually your primary care provider or oncologist, to oversee your care. People can continue to use hospice benefits even if they live longer than the projected six months, as long as their doctor certifies that that’s still their projected timeline.
There are many misconceptions about hospice care, Dr. Lowe says.
“It can be scary because people associate hospice with the final few days of life, but the reality is, a person might have months,” Dr. Lowe says.
While hospice professionals aren’t typically in your home all day and night, they are available to you around the clock, meaning you always have someone to call if you have questions or concerns.
“They come to your house regularly and are available urgently, and they teach families how to deliver care to a person in their final days,” Dr. Lowe says.
Still, acknowledging that someone is in their final months is hard, and Dr. Lowe says hospice professionals help patients and families with understanding and supporting that transition.
“It’s recognizing that we’re in a different place and shifting the goals,” Dr. Lowe says. “You can feel powerless when there are no more medical treatments, but there are still things we can do that provide comfort and dignity, and that’s a way to show our love for someone.”
Hospice care is often delivered in a person’s home, with loved ones serving as the day-to-day caregivers, but hospice provides equipment and medication that makes the person comfortable.
These professionals provide much-needed support to caregivers during a loved one’s final months and after their death.
“They get to know the families over the weeks and months and form a relationship,” Dr. Lowe says. “When you’re feeling challenged by caregiving, it’s helpful to be able to share with someone who understands and can help you access resources.”
Hospice also typically provides grief counseling and bereavement support for the family for a year after a person’s death, even if the person was only receiving hospice care for a few days.
“People and their families usually have immense gratitude for the extra support,” Dr. Lowe says. “You can’t change the outcome, but it makes the situation as good as it can be.”
Questions about palliative care or hospice? Talk to your doctor. If you need a doctor, find one near you.