Imagine you are sitting in a room, waiting for your health care provider to share the results of your latest scan. All you hear them say is “the cancer is back.” The world has once again been turned upside down for you and your family. Your emotions are soaring, and you have many questions yet to be answered. The chemotherapy leads you to experience numerous symptoms including pain, nausea and fatigue, ultimately causing you to not be able to work or coach your daughter’s softball team.
As an oncology nurse practitioner for the past three years, and a nurse for seven years, I have cared for hundreds of patients and witnessed this scary, unfortunate situation. These patients have experienced symptoms so severe they have had their chemotherapy held, as they were not strong enough to receive it. I have seen quality of life impaired as patients experience symptoms that leave them unable to participate in previously enjoyed activities. I have also seen end-of-life wishes go unmet. Health care providers trained in palliative care can help. Unfortunately, there are not enough palliative care trained health care providers to meet today’s needs.
Palliative care is a medical specialty designed to provide care that optimizes quality of life while continuing to allow patients to undergo aggressive medical care as they wish. Palliative care teams are not just for patients with cancer. They can help the more than 117 million Americans who suffer from chronic diseases such as heart disease, stroke and mental illness. Palliative care teams can help manage symptoms related to the diagnoses and side effects of treatment. They also are key in discussing end-of-life care and wishes.
All too often, good symptom management and end-of-life conversations do not occur for patients, as their health care provider has not been trained in this field. This is because medical training programs focus on making people better, something that we all want and need. However, there is a time in our lives that we will face the need for realistic conversations about symptoms and prognosis. With the number of patients with chronic disease continuing to rise, something must be done.
The Palliative Care and Hospice Education and Training Act is one solution to this problem. This act will increase the number of permanent palliative care faculty at accredited medical schools, nursing schools and physician assistant programs who can teach health care providers to better manage symptoms and discuss end-of-life wishes. There would also be more research in palliative care and hospice. This will lead to more knowledgeable health care providers, better treated patients and reduced costs associated with medical care. I encourage readers to write their legislators in support of this act.
Many patients might not feel that awareness pertaining to palliative care and hospice is necessary because of the feeling that their current health care provider is properly caring for them. While this may be true, it is imperative for patients and providers to also discuss their long-term health care goals and end-of-life wishes. Medical training programs may not support this bill because of the work involved in changing their curriculum. Better patient care and long-term cost savings more than offset the short-term inconvenience for a medical program.
If this is not approved, patients will continue to go without receiving the specialty care they need. No one deserves to suffer, particularly at the end of life. There are multiple times when patients are unable to speak for themselves, and family members refuse to let a palliative care team see the patient because of the negative meaning associated with the word “palliative.” The approval of the Palliative Care and Hospice Education and Training Act will lead to better education of you and your family so that when the time comes that this expertise is needed, you will receive the care that you desire. Palliative care does not mean that you are giving up on yourself or your loved one, and it does not mean that someone is going to die. It means that the most aggressive therapies are being provided while abiding by an individual’s wishes. This shows love, compassion and support.
Casey Brown received her master’s degree in nursing degree from Duke University and currently works as a nurse practitioner at Duke Cancer Institute. This op-ed in no way reflects the views of Duke Medicine or Duke School of Nursing.