You’ve heard of “palliative care” and maybe “supportive care,” but what do these terms really mean, and who are the services for?
The field of palliative care emerged less than 100 years ago as a way to ease suffering at the end of life. However, “the reality is that palliative care is supportive care — it’s symptom management at any stage of illness, things that affect quality of life at any point in your life,” says Dr. Ishwaria Subbiah, an oncologist with a special focus on older adults and an assistant professor with the Department of Palliative, Rehabilitation and Integrative Medicine at The University of Texas MD Anderson Cancer Center in Houston. “Many who have curable cancer are still having symptoms from the disease and treatment for it. Chemotherapy is notorious for the side effects it causes, and even newer targeted therapy and immunotherapy treatments have side effects that (affect) patients’ way of life, so our practice is supporting them and their family caregivers through their cancer treatment journeys.”
At its Supportive Care Center, MD Anderson offers comprehensive symptom and side effect care given separate from — but in support of — medical, surgical and radiotherapy treatments. The department even runs clinical trials with the aim of developing better treatments for cancer-related symptoms such as pain, nausea, neuropathy, shortness of breath and emotional distress.
These services are provided by a multidisciplinary team of physicians, nurse practitioners/physician assistants, counselors, psychologists, physical therapists, nutritionists, acupuncturists, massage therapists, artists and others focused on a holistic approach to cancer symptom care. The center’s physicians are board-certified in palliative medicine, and some are also medical oncologists or specialists in geriatrics.
Usually, a patient sees his or her oncologist and the supportive care team separately but on the same day. The visit with the medical oncologist is dedicated to discussion about cancer status and treatment options, and the time with supportive care is devoted to holistic care focused on symptoms and the overall well-being of the patient and the caregivers and family. The oncology and supportive care teams frequently update each other, particularly if a patient is having an uncontrolled symptom such as cancer pain, nausea or anxiety. This ensures that the teams synchronize care for their mutual patient.
The offerings at MD Anderson’s Supportive Care Center provide a good overview of what this type of care can include. Patients being treated at hospitals without such departments can ask physicians to refer them elsewhere in their communities for supportive care. For the vast majority of patients, health insurance covers supportive care visits, Subbiah says, although some integrative therapies, such as acupuncture, may not be covered.
So, what happens during a first visit to this center? Here’s a walk-through of the experience, which generally lasts 45 minutes to an hour but can span two to three hours if the patient has the time and willingness to meet with several members of the multidisciplinary team.
- After a doctor in the cancer center refers a patient for supportive care — most often for pain or distress — the patient comes to a first appointment and fills out the Edmonton Symptom Assessment Scale. This questionnaire ranks the presence and severity of the most common physical, emotional and psychological symptoms seen in people with advanced illness. The patient then enters an exam room and meets with a supportive care nurse who specializes in symptom management for an in-depth discussion of symptoms, using the scale as a guide. “When we see a patient for whatever reason, we still do a full head-to-toe assessment of that person,” Subbiah says. “For example, the reason for the referral may be pain, but there could be distress that’s adding to the pain. It’s important to recognize, because you can keep escalating pain medications, but that won’t address the part of the pain that’s from distress.”
- The supportive care nurse gives a comprehensive report to a physician who will then meet with the patient. The two practitioners identify the most pressing issues, as well as concerns that are meaningful but don’t cause as much overt distress. A multidisciplinary plan is designed to address all symptoms. Because cancer-related pain is a very common reason for referral, this plan nearly always involves a discussion about opioids, as well as other analgesic options. Due to an ongoing opioid abuse epidemic, many patients express fear of taking these medications when prescribed, which leaves them experiencing uncontrolled pain. “At nearly every visit over the past year, I’ve had to tell that person that it’s OK for them to take opioid pain medication, since it’s rightfully prescribed to them for severe cancer pain under the guidance of a dedicated medical team,” Subbiah says. “I acknowledge everything they’ve heard and reframe it to explain that it rarely applies to their situation of pain from cancer, because the problem on the news often involves illicitly made or obtained drugs or people not using them the way they’re supposed to. Our patients may be prescribed these very strong pain medications for a very good reason: Cancer pain can be excruciating, and we believe a pain-management plan that includes these medications as one component can dramatically improve their quality of life and ease their suffering.”
- A patient who is about to undergo surgery or is otherwise debilitated from cancer or its treatments can meet with a trained, board-certified rehabilitation physician, who will design a physical therapy program to build strength.
- A hospital pharmacist reviews all medications with the patient. “A person may not have taken medications regularly throughout their life, but once they get their diagnosis of cancer, they may be on five to 20 medications,” Subbiah says. “This can be overwhelming and confusing. When they’re referred to us, the vast majority of their medications are for symptom management: nausea, anxiety, trouble sleeping, pain. In the clinic, we go through all the medications, identify why each is there and make sure the patient understands. If there’s something better that can be there, or if we can consolidate or streamline their medication list and address potential drug interactions, we do it right there with the assistance of our pharmacist.”
- A patient who is experiencing a high level of emotional distress or needs professional support to cope with a diagnosis can meet with a clinical psychologist or counselor during this initial visit — or any visit thereafter.
- Those feeling spiritual distress can visit with a hospital chaplain. “(Patients and caregivers) appreciate having that part of their suffering acknowledged and being offered an outlet to be able to discuss it in greater depth,” Subbiah says.
- Patients dealing with cachexia — unintentional and potentially excessive weight loss as a result of cancer or its treatments — can meet with a nutritionist or dietician, either during the first visit or at a later time, to talk about how to optimize food intake. Because these patients can experience muscle loss and weakness, they can also meet with the physical and occupational therapy team to discuss building or maintaining strength, balance and, in turn, independence, as well as ways to conserve energy.
- Staff members may recommend scheduling visits at MD Anderson’s Integrative Medicine Center, which offers services such as acupuncture, oncologic massage and extensive classes including tai chi, qi gong, cooking and music therapy. “It may be off the beaten path for some people, but there’s good data that certain integrative interventions can help with symptom management, so patients may not always need just medications when they feel a symptom from cancer,” Subbiah says. “For instance, there’s compelling data for acupuncture when people have nerve pain.”
- At every encounter, clinic staff members, including the physician, talk with patients about advance care planning, such as deciding who will have medical power of attorney and what a living will should say. “This can be very difficult to talk about as a patient, since it means having to acknowledge our own eventual mortality, which can be distressing,” Subbiah says. “We work conscientiously to normalize conversations about advance care planning. I ask my patients to reflect on who in their life they would trust to make medical decisions on their behalf if they themselves were unable to do so.” Everyone, regardless of a cancer diagnosis, should consider these questions, Subbiah says. “We advise patients to think about these issues in the peace of their home with their closest family or friends and reflect on what their values are and what means the most to them,” she says. “Having such challenging but important discussions well ahead of time can become crucial, because it’s difficult to have this clarity of thought during an emergency situation, especially if the patient is incapacitated and neither the family nor the medical team knows his or her wishes.”
- Before ending the visit, patients receive 24/7 contact information for the supportive care center. “When they start not feeling right, we counsel them to let us know, so we can try to nip symptoms in the bud rather than wait until they become so severe that there’s no other answer than to come to the emergency room,” Subbiah says. “We can get patients into the clinic the same day for urgent issues without an appointment. Most of the time, we can modify medications enough to where the person feels comfortable. Other times, lab work or scans or IV pain medication (are) needed, and we take the patient down to the emergency room to make sure they get that urgent care.”