Five common misconceptions about palliative care

Sister Pat Kennedy visits with patients during some of their darkest times. Yet, she greets you with a smile and always an open ear.

Sister Pat is the St. Joseph’s/Candler Palliative Care Liaison, which finds her visiting patients at St. Joseph’s Hospital and Candler Hospital and during the Monday and Wednesday palliative care clinics held at the Nancy N. and J.C. Lewis Cancer & Research Pavilion. 

Palliative care is an interdisciplinary team approach to caring for patients with serious or life-threatening illnesses, such as cancer, COPD, renal disease or cardiovascular disease, and their families. Palliative care focuses on attending to the needs of the whole person – physically, mentally, emotionally, socially, and spiritually.

St. Joseph’s/Candler palliative care provides a seamless transition from inpatient to outpatient. The team is composed of a physician, nurse practitioners, nurse navigators, social worker, dietitian and chaplain, and all are specifically trained in palliative care.

They can help provide expert management of distressing symptoms such as pain, nausea, shortness of  breath, anxiety and depression, while incorporating psychosocial and spiritual care based on the patient’s and family’s needs, values, beliefs and culture.

“Lots of people when they are sick, the normal ground you stand on becomes uneven, and your whole system – your family system, your way of relating to co-workers – everything is kind of shuffled because of a serious disease,” says Sr. Pat. “Palliative care is an extra layer of support that includes spiritual and emotional support. People will go through moments of depression, moments of doubt, anxiety, conflict, and they just need a space to verbalize safely what is happening to them.

“Hopefully I can reflect back to them that they are not alone in this process.”

Even though the conception has been around for decades, there are still a lot of components patients and families don’t understand. Here’s a look at five common misconceptions surrounding palliative care.

The Misconceptions

1. Palliative care is only for end-of-life or hospice patients

This is the biggest misconception regarding palliative care. Palliative care can serve end-of-life patients, but it also can help patients with an acute illness that are going to live for many more years, says Kathleen Benton, DrPH, MA, Director of Clinical Ethics and Palliative Care.

Palliative care should not be confused with hospice. Hospice care treats patients who are not expected to live longer than six months.

“All of hospice is palliative care, but not all palliative care is hospice,” Sr. Pat says. “We can have patients for years. They are not necessarily at the end of life. It could be a prognosis that will lead them to that but it’s not about time. It’s about quality of life and managing symptoms in a compassionate way.”

2. I have to stop seeing my physician if I choose palliative care

Receiving palliative care does not mean you have to choose between your physician and the palliative care doctor. Instead, the palliative care team works in conjunction with your doctor. Your physician can focus on your illness, while the palliative care team can assist with other aspects of your journey – the physical, mental, emotional and spiritual.

“When a patient is seen by a specialty physician, for example a cardiologist, that physician’s organ is the heart. If you are working with a neurologist, his organ is the brain,” Benton explains. “The palliative physician’s ‘organ’ includes enhancing the quality of life and communication about your goals throughout your illness.”

The palliative care team also can help you see how treatments correspond to your own goals and preferences.

3. I have to forego aggressive care options

Just as you don’t have to relinquish your physician, you also don’t have to stop receiving treatment, such as chemo or dialysis, Benton says. Some people think when they choose palliative care, that they can no longer be cured. Palliative care is treating the whole person in addition to every bit of what aggressive care has to offer, Benton says.

“In one (palliative care) visit, you can see a nutritionist, the chaplain, the social worker, the physician or nurse practitioner. There’s a lot of collaboration going on,” Benton says. “It’s the real definition of holistic. The interdisciplinary team understands every component of the disease affecting the patient.”

4. I’m exchanging quality of life for longevity with palliative care

Again, you are not forgoing anything by receiving palliative care services, Benton says. Palliative care has been aligned with longevity, but not at the sacrifice of quality of life. It has been shown that palliative care helps patients heal more quickly because they understand the illness and side effects of treatment.

For those with a chronic, progressive illness which has no cure, palliative care can help patients live as fully as possible, sometimes for longer times compared to patients who do not receive palliative care.

“Palliative care is a compassionate way of caring for the sick,” Sr. Pat says. “There’s a line in Isaiah that says, ‘Give comfort to my people.’ Palliative care very much promotes quality care and comfort care, and it is what Jesus would do. We treat the whole person, not just the disease.”

5. Palliative care is only for the sick and doesn’t involve my family

Quite the opposite, actually. Palliative care encourages family involvement. Palliative care can support family members in dealing with the stress and worry they experience when a loved one is seriously ill through care and education.

The palliative team also can help open up communication lines between family members and a patient regarding the patient’s wishes about treatment and care.

“By being present in these conversations, family members really learn more about representing the patient’s wishes in an area where very few people converse,” Benton says. “Very few people sit around the Thanksgiving table and talk about their end-of-life wishes because it is a hard conversation. Palliative care helps drive that conversation.”

And, Benton adds, don’t think an advanced directive or living will is enough. It’s just a conversation starter, she says. A palliative care team will help address many other issues and circumstances that an advanced directive or living will may not.

How do I get palliative care?

Today, nearly two-thirds of hospitals in the United States have palliative care teams. St. Joseph’s/Candler is proud to be the only comprehensive palliative care service for both outpatients and inpatients in the Savannah community. We work with community-wide organizations such as The Steward Center for Palliative Care and the Edel Caregiver Institute.

To receive palliative care services, a patient must have a physician’s referral. You also can talk to your nurse, nurse navigator or case manager if you are interested in palliative care, and they can communicate with your physician your interest, Sr. Pat says.

For a person who’s currently not in the hospital but feels the need for palliative care, Sr. Pat recommends talking to your primary care physician or specialty doctor if he or she thinks you’ll benefit from palliative care.