Why Are Referrals to Palliative Care Delayed?
With a newly implemented outpatient palliative care program in my current oncology practice, patients are often hesitant to see me due to fear, misconceptions, and stigma. One of the most common comments I receive from families is “my loved one isn’t ready for palliative care, they are not dying.” Few patients understand the meaning of palliative care and much of my time is spent explaining my role.
Many people also assume that palliative care is just for patients with cancer. However, patients with other chronic illnesses such as heart disease, lung disease, neurologic diseases, and dementia also benefit from palliative care. All of these chronic illnesses can cause symptoms that may negatively impact the quality of life (eg, shortness of breath, pain, fatigue, depression, decreased appetite, anxiety, or nausea). Therefore, the first consultation typically involves patient education on what palliative care is and how it differs from hospice care. I explain that palliative and supportive care should be part of the treatment plan from the time of diagnosis of an illness through the end of life, incorporating hospice care if and when the time presents.
Benefits of Palliative Care for Chronic Illnesses
In a randomized study involving patients with metastatic non–small-cell lung cancer who received early palliative care plus standard oncologic care or standard oncologic care alone, patients given early palliative care had a significantly better quality of life and were less likely to report depressive symptoms at 12 weeks compared with patients given standard care group.1 Additionally, patients in the early palliative care group lived nearly 3 months longer than the standard care group despite receiving less aggressive care at the end of life.
Symptom management and emotional support are major goals of palliative care. Early integration and development of a relationship with palliative advanced practice practitioners (APPs) help ensure that patients will confide in and communicate their needs during the disease course as symptoms or side effects may develop or increase. Palliative APPs also may lessen some of the burden on physicians with time constraints and heavy patient loads.
In a retrospective cohort study, patients with advanced cancer given early referrals to palliative care (ie, more than 3 months before death) had significantly fewer emergency room visits, hospital admissions, and hospital deaths in the last 30 days of life compared with those given late referrals.2 Patients who received outpatient referrals to palliative care showed improved quality of end-of-life care compared with patients who were referred to palliative care in the inpatient setting.
It is time to accept supportive and palliative care as an essential element of early care and treatment of cancer and other chronic diseases. Let us allow palliative care to become an extra layer in the comprehensive team approach to care and not to be driven by fear or misconception. Early integration of a palliative and supportive team with a focus on symptom management, supportive care, and quality of life helps us meet the emotional, physical, and spiritual needs of the patient.
MaryAnn Fragola, DNP, ANPc, is clinical director of Palliative Care and an advanced certified hospice and palliative care nurse at New York Cancer & Blood Specialists in New York.