Help Your Patients Prepare for the End From the Beginning
By Kristin Andrews, BSN, RN, OCN®
Few things carry more stigma in the United States than death and hospice. Death is familiar in oncology, yet providers may not discuss it with patients until their cancer has progressed to the point that medical intervention is no longer an option. With the American Cancer Society estimating more than 600,000 American deaths from cancer in 2022 (https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-%09facts-figures-2022.html), it’s time to change our practice.
Palliative Care Is About Quality of Life
As oncology healthcare professionals, we observe cancer’s physical, emotional, spiritual, and financial effects on patients and their families. We are tasked to provide cancer treatment yet burdened to watch as many of our patients’ quality of life decline because of disease course or cancer treatments. What if we could do more to ensure that a patient’s cancer care experience meets their needs and goals? As an oncology nurse, I have an ethical responsibility to ensure that treatment modalities do not cause my patients undue harm. I have often found myself asking where quality of life falls on the moral obligation spectrum.
Quality of life is subjective, based on what each patient values in their life. The most common determinant of quality of life is pain (https://doi.org/10.1016/j.pmn.2014.05.009). In my experience as an oncology nurse navigator, patients with terminal cancers endure significant pain before discussing end-of-life, palliative, or hospice care.
Palliative Care Begins at Diagnosis
One way oncology healthcare providers can help patients maintain quality of life is by referring them to palliative care services early in the cancer care continuum. An extensive study from the American Society of Clinical Oncology in 2017 produced guideline recommendations that palliative care service (https://doi.org/10.1200/JCO.2016.70.1474) referrals and involvement begin at or within eight weeks of diagnosis.
Palliative care differs from hospice care because it can be initiated at any cancer stage, including during active treatment. Although its services are similar to those of hospice, palliative care provides patients and caregivers with resources and interventions to manage physical side effects, address emotional and spiritual needs, and improve their overall quality of life throughout the cancer continuum.
Research has shown that early involvement with a palliative care team (https://www.jons-online.com/issues/2020/april-2020-vol-11-no-4/2889-palliative-care) improves patient satisfaction, quality of life, depression, treatment tolerance, and survival times. Patients in a palliative care program (https://www.jons-online.com/issues/2020/april-2020-vol-11-no-4/2889-palliative-care) also had significantly reduced hospitalizations, reduced use of chemotherapy near death, and more appropriately timed hospice referrals. As healthcare trends emphasize the importance of interprofessional care teams, oncology providers should include palliative services for all patients with cancer.
Position Your Patients’ Perspective on Palliative Care
Successfully introducing patients and their loved ones to the concept of palliative care requires an honest conversation about their diagnosis, cancer staging, symptoms and side effects, expected outcomes, and identified goals and treatment preferences. When a patient's quality-of-life goals can no longer be met, an end-of-life discussion is needed. Patients with a palliative care team are more prepared to have those discussions because they have been physically, emotionally, and mentally supported throughout their cancer care. Many palliative care services also offer hospice care, which can smooth the transition when nearing end-of-life and provide comforting consistency and continuity for patients and caregivers.
Too often, patients are not referred to or enrolled in hospice services until shortly before their death. Patients spend a median of three weeks (https://doi.org/10.1016/j.jpainsymman.2016.03.006) in hospice, with approximately 10% of enrollments (https://doi.org/10.1016/j.jpainsymman.2016.03.006) occurring within days of a patient’s death. One reason for late involvement with hospice is lack of preparation for end of life (https://doi.org/10.1016/j.jpainsymman.2016.03.006). Patients who do not fully understand their disease course expectations and have not identified quality-of-life goals do not recognize the benefits of hospice until treatment modalities have been exhausted and the side effects of treatment and disease are debilitating. However, a patient with palliative care is more prepared physically and emotionally to enter hospice when appropriate.
I urge all oncology healthcare providers to include palliative care services in their interprofessional approach to cancer care. As oncology healthcare providers, we are responsible for supporting our patients and doing everything we can to alleviate their physical, mental, emotional, and financial burdens. Referring to palliative care services upon diagnosis for all patients, especially those with late-stage disease, will improve their lives.