Palliative care: It’s probably not what you think it is

Palliative care
Palliative care is an umbrella term for treatments designed to improve quality of life and relieve symptoms and side effects caused by a serious illness, including cancer.

When a doctor mentions the words “palliative care,” many patients may think the worse, assuming it’s the same as hospice or end-of-life care. That confusion and somber stigma may lead patients to believe that when their doctor suggests palliative care, it means there’s no hope for recovery.

That’s hardly the case. Palliative care is an umbrella term for treatments designed to improve quality of life, including relieving pain, other physical symptoms and emotional distress caused by a serious illness, including cancer. If the confusion or concerns about palliative care prompt patients to opt out of those treatments, they may miss out on specific therapies designed to relieve cancer-related side effects and improve their quality of life, says Nathan Neufeld, DO, Director of the Pain and Palliative Care Program at Cancer Treatment Centers of America® (CTCA).  

“Unfortunately, many patients don’t realize that palliative care focuses on symptom management,” Dr. Neufeld says. “Palliative care is a multidisciplinary approach to medicine that’s designed to prevent or treat, as early as possible, the physical symptoms of the disease itself and its treatments, in addition to any related psychological and spiritual concerns. It’s really synonymous with supportive care and involves the whole person—body, mind and spirit.”

The major difference between palliative and hospice care is the point during a serious illness that the therapies are offered. “Palliative care is available to cancer patients at any time, including while they’re receiving medical cancer treatments, such as chemotherapy or radiation,” Dr. Neufeld says. “Whereas hospice only begins when treatment no longer provides a benefit to the patient, which is the terminal phase of the disease.”

In this article, we’ll explore:

If you are interested in learning more about palliative care services at CTCA, call us or chat online with a member of our team.

How are they different?

Here are a few more ways palliative and hospice care differ:

Palliative care is used with primary treatment.
Hospice care is offered when treatments intended to destroy or arrest the disease has stopped.

Palliative care focuses on pain, stress and other symptoms of serious illness.
Hospice care focuses on symptom management at the end of life, also called "terminal phase," defined by Medicare as a patient with a life expectancy of six months or less.

Palliative care has no limit for when or how long it may be offered.
Hospice care has a limited time frame, typically measured in months and ending when the patient has passed away.

Pain relief and other physical benefits

"Palliative care may be for any patient at any stage of cancer," Dr. Neufeld says. "It may start at any point after a diagnosis, and we find the earlier it starts, the more benefit the patient gets from this type of care. We have many tools and resources to identify potential side effects and may be able to prevent them from occurring.”

One common side effect of chemotherapy is peripheral neuropathy, a nerve disorder that may cause numbness or pain months or years after therapy is completed. However, if a palliative care assessment identifies you as high risk for developing neuropathy, your physician may prescribe medication designed to protect your nerves and prevent this condition from developing, Dr. Neufeld explains.

For many cancer patients, pain is the most important symptom managed by palliative care. Cancer may cause physical pain in many ways. Tumors may press on internal organs or spread to the bones or spinal column. Some cancer treatments, such as surgery or radiation therapy, may cause pain. Doctors may recommend medications or supportive care therapies such as oncology rehabilitation to help relieve the pain.

Other physical side effects that may be addressed with palliative treatments include:

  • Digestive issues, such as nausea, loss of appetite, malnutrition, diarrhea or constipation
  • Immobility (difficulty moving) caused by joint pain, muscle pain and stiffness, cancer metastases or medication
  • Insomnia (trouble falling or staying asleep)
  • Memory and cognition
  • Intimacy challenges
  • Fatigue

“Cancer patients have an entire ‘safety net’ of treatments and professionals there to catch you and help you get relief quickly,” Dr. Neufeld says. “For example, nutritional support from a licensed, oncology-trained dietitian may help prevent weight loss, which can lead to malnutrition. Physical therapy may include specific exercises for patients at risk of developing cardiomyopathy, a disease that causes weakening of the heart. Palliative care is a team effort and is designed to support patients so they can get through cancer treatment and have good quality of life after treatment.” 

Emotional and spiritual benefits

Palliative care means different things to different people. For some, it may not only address physical symptoms and side effects of cancer, but also emotional and spiritual needs.

Many people who are diagnosed with cancer or who are dealing with cancer treatment develop emotional distress in the form of conditions like anxiety or depression. Treating a patient's emotional needs may require medications as well as one-on-one therapy with a licensed professional counselor (LPC).

“Counseling and therapy should be an interactive process where patients take the lead,” says Diane Schaab, MS, LPC, Behavioral Health Therapist at CTCA® Atlanta. “This empowers you to take control of your mental health,” she says, adding that because there’s a wide variety of mental health strategies, each should be individualized to the patient’s needs.

Spiritual counseling with a chaplain or spiritual care advisor may also help relieve stress for cancer patients. It’s important to know that you don’t have to be religious to receive this type of palliative care. Chaplains are trained to work with people from every faith and background, including people with no religious beliefs.

“Cancer may cause an individual to begin ‘reviewing his or her life,’” says Chip Gordon, MDiv, Director of Pastoral Care at CTCA Atlanta. “You may begin to ask, ‘Have I done what I really wanted to do with my life?’ ‘Are my relationships in a good place?’ Spiritual counseling also helps patients address questions about their faith. It’s an opportunity for patients to make peace with others, make peace with themselves and make peace with God.”

The science behind palliative care

A 2012 study demonstrated that cancer survivors' health-related quality of life is influenced by both physical issues and emotional problems. Approximately 1 in 4 cancer survivors reported poor physical health and 1 in 10 reported poor mental health.

A 2010 study published in the New England Journal of Medicine concluded that some lung cancer patients receiving early palliative care had a prolonged survival of approximately two months and clinically meaningful improvements in quality of life and mood. Additionally, a 2016 analysis of more than 40 studies concluded that palliative care improved patients' quality of life and relieved many symptoms.

In updating its guidelines and recommendations for palliative care services in 2016, the American Society of Clinical Oncology (ASCO) noted, "Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment."

Overcoming the stigma

Despite the availability of these treatments, a 2018 study found that two-thirds of patients living with a serious illness who could benefit from palliative care don’t get it, and many cancer physicians don’t prescribe it despite endorsements from the American Cancer Society and ASCO.

"It has nothing to do with what's in Webster's Dictionary," says Dr. Maurie Markman, President of Medicine & Science at CTCA. "It has to do with how the term has been used in society and by doctors for several decades. And that makes it a tough sell for many patients. Some people are okay with it. But many people will associate this with the terms ‘death’ and ‘dying’ and ‘hospice’ and say, 'Have you given up on me?' It's a very emotional conversation."

As cancer therapies continue to improve and advance, more people are living with cancer, and for longer periods of time. An estimated 16.9 million Americans were living with cancer as of 2019, and it’s estimated that nearly 1.9 million new cases of cancer will be diagnosed in the United States in 2021, according to the National Institutes of Health. Many of those patients may need some level of palliative care.

Dr. Neufeld says he understands that health care professionals are focused on changing the course of the cancer and, in doing so, may overlook the impact palliative care may have on a patient's quality of life.

"However, some people may avoid cancer treatments that could stop their disease from spreading or recurring because of their fear of side effects," he says. "We have to do a better job of educating patients about the many resources available to manage symptoms and improve quality of life.”

He also urges patients to ask their health care providers about palliative care and insist on having their symptoms managed throughout their cancer journey: through diagnosis, treatment and survivorship. 

What can patients do?

When you’re diagnosed with cancer and when you’re discussing treatment options, talk with your care team about palliative care and supportive care services. Consider asking these questions:

  • What palliative care services are available to me?
  • Will it be a part of my cancer care and when?
  • Where can I find support in coping with this diagnosis?
  • How can I find out more information?

If you are interested in learning more about palliative care services at CTCA, call us or chat online with a member of our team.