Gaining Perspective on the Quality of Life
Editor’s Note: Defining Hope, a new documentary about people weighing what matters most at the fragile junctures in life—and the nurses who guide them—will be released in select theaters nationwide on November 1, in honor of National Hospice and Palliative Care Month. Walden University is proud to support the new documentary. Through Walden’s support, nurses who attend the screenings in November will receive free continuing nursing education credits.
Despite a recent dip in life expectancy in the U.S., Americans with chronic illness are living longer, according to the Centers for Disease Control and Prevention. While some illnesses progress slowly, others are sudden, putting both patients and their loved ones in uncharted waters, wondering what to do next.
That’s when palliative care and hospice care can help. Eva Hvingelby, PhD, NP, and faculty member in Walden’s School of Nursing who has more than 25 years’ experience working in hospice and palliative care settings—from the emergency room and intensive care unit to the community—explains the difference between the two:
“Palliative care seeks to relieve the emotional stress and physical symptoms of serious illness. It is appropriate for people seeking curative treatment for their disease. If the illness is terminal, palliative care helps individuals who do not feel ready for hospice but need symptom relief. It is a specialized type of care that seeks to improve an individual’s quality of life, while also supporting loved ones and family,” she says. “More people are familiar with hospice care, which is provided to patients who have decided not to pursue further curative treatments and instead focus on comfort and dignity as they approach a natural dying process.”
Determining when it is appropriate to extend life via various medical treatments versus when interventions are only extending suffering not only burdens patients, but their families as well. Palliative care plays an integral role in differentiating between these two paths.
Culture has much to do with the decision-making process—there are many powerful beliefs about death, dying, and related care. “It’s vital for everyone to think about what quality of life means to them, as that can ease the decision-making process for all involved, because there can be a lot of guilt and fear. Even with an advanced directive, it remains a complex situation with a lot of nuances that affect end-of-life decision-making,” Dr. Hvingelby says. Self-reflection and communication are key.
When palliative care is required in a hospital setting, patients will ideally have a team that includes a medical director, a lead physician, a nurse practitioner, as-needed specialists, a social worker, and a counselor or psychology professional. There is also a researcher or clinical manager who pulls data and reports that show how palliative care improves outcomes for patients and hospitals. The team meets weekly to discuss patients, challenging issues, and options for alternative therapies.
According to the Center to Advance Palliative Care, only 67% of hospitals with 50 beds or more report having palliative care teams, leaving one-third of the nation’s 5,500 hospitals lacking much-needed support. Dr. Hvingelby is one of about 7,500 palliative care nurse practitioners in the U.S., a number that fulfills only about half of the demand throughout the country’s healthcare system.
Palliative care nurses help and guide patients and their loved ones so they can have critical conversations and think through the best choice of care for them. “I find these situations to be stressful and the concepts difficult to accept, so instead of telling them what’s best, I ask each patient and family member to tell me what they think is going on so I can get a sense of where they are coming from,” says Dr. Hvingelby. She repeats back what she heard and then asks permission to share her experience and professional opinion. While giving them information and asking questions, she also has to read their nonverbal cues and be sensitive to the conflict that can occur within families. By creating an open and receptive dialogue first, she develops a trusting relationship before bringing in the art and science of being a provider.
“There are amazing and wonderful people in the palliative care profession. It’s definitely the hardest job I’ve ever done in my life,” she says. “Facing death regularly with my patients and their families has deepened my life experience—completely changing my level of gratitude for everything I have and making me live in the moment so much more.”—Jen Raider