The medical world is filled with jargon that often gets in the way of communication. Neo-adjuvent therapy. Histopathology. Monoclonal antibodies. Hyperfractionated radiotherapy. Antiemetic. Neutropenia. You feel as though you need an advanced science degree just to walk through the doors of the average cancer center. And our lack of understanding often prevents us from getting what we need. This is certainly the case when it comes to palliative care, a scary name that many of us associate with terminal illness and giving up.
What’s in a name? That which we call a rose, by any other name would smell as sweet.William Shakespeare
Unfortunately, because patients confuse palliative care with hospice care, they don’t seek out the support that could make their lives better. Hospice, or end-of-life care, is given instead of curative treatment in a patient’s final days. It helps to ease a patient’s pain when no further treatment is available or advisable. And it’s usually provided at home, or in a hospice facility.
Despite its jargon-y name, there is no reason to fear palliative care. In fact, it is all about making us feel better. It’s care that helps us manage the symptoms of the disease and the side effects of treatment, so we live as well as possible, as long as possible.
Palliative care is delivered in concert with, not instead of, treatment. And, since it requires expertise in pain management, psychology, rehab medicine and other areas outside the field of oncology, it is generally delivered by different doctors and specialists that the ones providing “cancer treatment.” The oncology team tries to cure the disease. The palliative care team tries to help us live well through the cure and beyond.
Shakespeare Got It Wrong
Because the name “Palliative Care” so often confuses patients, some hospitals and cancer centers are now calling it “Supportive Care” instead. MD Anderson Cancer Center, one of the leading cancer centers in the country, made the switch from “Palliative” to “Supportive” Care several years ago. And when they did, they found that patients were more likely to ask for it, and sought supportive care earlier in their treatment, too.
In an attempt to overcome the name hurdle, other facilities break up the elements of palliative or supportive care into individual services or combine them into multiple groupings. The possibilities are endless. But, whatever they call it, hospitals and cancer centers typically offer a range of assistance to support the physical and psychological needs of patients and caregivers including:
- Management of pain and other symptoms
- Integrative and complementary medicine
- Counseling and psychological support/spiritual care
- Care planning and transitioning
- Rehabilitation and physical therapy
- Caregiver support
- Fertility preservation and sexual health
Other services that are frequently available and may or may not be included with palliative/supportive care include:
- Exercise education and classes
- Diet and nutrition
- Cancer prevention/tobacco cessation programs
- Patient activities
- Social work services addressing practical needs
Mantle of Comfort
Palliative or supportive care is like an extra layer of comfort for cancer patients. And it can be started at any time in the treatment process. In fact, research has shown that patients with advanced cancer who receive early palliative care as part of their treatment plans experience improved quality of life, mood, decreased caregiver distress, and, potentially, overall survival.
Not everyone needs palliative care. Some people sail through their cancer treatment without side effects or struggle, or have side effects that their oncology teams can easily address. For others, cancer and its treatment make us hurt in places and in ways we never could have imagined. And when we hurt, palliative care is there to help. Too many of us suffer in silence, not realizing that there are ways to make it better. So, if you have discomfort that’s interfering with your sleep and daily activities, ask your doctor for support. And if your doctor isn’t able to help you manage your symptoms, request a referral for supportive care.
Private health insurance usually covers palliative care, and even Medicare and Medicaid cover some support, although Medicaid coverage varies by state. Call your insurance company to see what they will allow. And if you are concerned about coverage or think you are unable to afford supportive care, check with your social worker or hospital financial counselor to see how they can help. Regardless of the name, you deserve the care.