Breaking through the stigma of palliative care

Palliative care

The word “palliative” has a specific definition: to ease pain and discomfort. But in medicine, including the treatment of cancer patients, palliative care has taken on a somber meaning, one synonymous with hospice or end-of-life care. That stigma and confusion make the idea of palliative care difficult to accept for some patients and may prevent some doctors from offering therapies designed to lessen serious cancer-related symptoms and side effects. “There are a lot of misconceptions about what palliative care is,” says Dr. Jeanette Boohene, a Palliative Care Physician at our hospital near Phoenix. “This is care specifically designed for people with serious illnesses, and that includes cancer. The focus is to improve the quality of life of the patient, and that usually involves meticulous symptom management, because these patients have a lot of symptoms.”

While palliative and hospice care share many similarities—both provide treatments to ease pain and relieve side effects, for example— they also have their differences. For instance:

  • There is no time frame or limit for when or how long palliative treatment may be offered. Hospice care is typically designed for terminally ill patients with a life expectancy of six months or less.
  • Palliative care and curative care may be offered simultaneously. Hospice care is provided when patients are no longer receiving curative treatments.
  • Hospice care is often provided in the home setting or in an inpatient facility by a team of professionals trained in providing comfort care, in conjunction with the patient’s primary care physician. Palliative care may be provided in the hospital, outpatient or clinic setting and sometimes also in the community setting, by a team of professionals skilled in complex symptom management. This team often includes a physician, nurse, social worker and spiritual practitioner, all working in conjunction with the patient’s treating physician, such as an oncologist.

Every patient on hospice receives palliative care, Dr. Boohene says, but many patients receiving palliative care do not qualify for or need hospice services. Palliative care includes a broad spectrum of treatments that may help patients cope with some of the symptoms, side effects and after effects of their disease and treatment. Patients may be on palliative care for an extended period during treatments and may eventually transition to post-treatment surveillance and into survivorship.

“Palliative care can be for any patient at any age and at any stage of cancer,” Dr. Boohene says. “It can start at any point after a diagnosis, and often we find the earlier it starts, the more benefit the patient gets from this type of care.” For many cancer patients, one of the most important symptoms managed in palliative care is pain. Cancer may cause physical pain in many ways. Tumors may press on internal organs, for instance, or spread to the bones or spinal column. Some cancer treatments, such as surgery or radiation, may lead to pain. Doctors may recommend medications or supportive therapies such as acupuncture to help relieve the discomfort. “Pain is high on the list, but it’s not the only symptom people dealing with cancer have,” Dr. Boohene says.

Palliative treatment may also involve nutritional support and therapies designed to address nausea, loss of appetite or constipation brought on by cancer treatments such as chemotherapy. Other common side effects that may be addressed with palliative treatments include neuropathy, fatigue and infections. “Palliative care supports patients so they can get through their treatments,” Dr. Boohene says. “Sometimes patients will stop their treatments because they feel so bad, helping people get through their treatments helps them do better.”  

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. A 2016 analysis of more than 40 studies concluded that palliative care improved patients’ quality of life and relieved many symptoms, but the data was inconclusive about whether the treatments were able to consistently extend life.

Palliative care means different things to different patients. For some, it may not only address the physical symptoms and side effects of cancer, but emotional and spiritual needs, too. Palliative care may start at the moment of diagnosis, when a patient first learns he or she has cancer. “A lot of people who are diagnosed with cancer or dealing with cancer treatment can develop a lot of emotional distress and anxiety,” says Dr. Noah Horowitz, a Psychiatrist at our hospital near Phoenix. “They feel down and scared.” Treating a patient’s emotional and spiritual needs may require medications to manage anxiety or to help a patient sleep. Spiritual counseling and/or massage therapy may also help relieve stress.

For other patients, palliative care may continue long after they are declared cancer-free, with services like continued physical or occupational therapy or help with the challenges of a feeding tube or a colostomy bag. “Palliative care is a team effort” Dr. Boohene says. “We have many members of the team contributing to that person’s quality of life.”

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.” Still, many doctors confuse palliative care with terminal care, and some patients react emotionally when a doctor recommends palliative care services. The misconceptions and stigma have become deeply ingrained in some corners of the patient and medical community. “It has nothing to do with what’s in Webster’s Dictionary,” says Dr. Maurie Markman, President of Medicine and Science for Cancer Treatment Centers of America® (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. More than 14 million Americans are living with cancer today, and nearly 1.7 million new cases of cancer were diagnosed in the U.S. in 2016, according to the National Institutes of Health. Many of those patients may need some level of palliative care. Dr. Boohene says she understands the stigma surrounding palliative care, but she urges health care professionals to embrace the concept and the impact it may have on a patient’s quality of life, and she urges patients to move past the misconceptions and insist on receiving palliative care early in their cancer journey. “The patient is the captain of that ship,” Dr. Boohene says. “We have to empower the patient to be able to navigate the complexities of their disease. Recognizing who is at the center of that care is really important. It’s really about the patients and what’s important to them.”

Learn more about supportive cancer therapies.

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