We need a unified system of psychosocial, spiritual and emotional care
BY JANET SNAPP, MSN, RN, FPCN, AND DORI KLEMANSKI, DNP, CNP
Cancer survival rates in the United States have dramatically increased during the past 40 years as a result of improved prevention, detection and treatment. The newest treatments keep cancer growth in check and train the immune system to hunt tumor cells. In addition, policies such as the 2016 federal Cancer Moonshot initiative are bridging research efforts into a unified assault.
But cancer treatment is just the first challenge that faces survivors. Many Americans emerge from treatment only to confront difficulties that go far beyond their illness. Common challenges that cancer survivors can experience include:
- Disability that can range from mild to complete;
- Fatigue, pain and changes in appearance or memory;
- Emotional distress such as depression or fear of recurrence;
- Financial, employment and legal problems.
Some of cancer’s most devastating effects can grow from the care demands placed on spouses and caregivers; from the post-traumatic stress experienced by parents of pediatric cancer survivors; and from the loss of fertility that leaves some young cancer survivors unable to start a family before they’ve had time to consider one. There is no medical reimbursement for the banking of eggs or sperm.
The American health care system is woefully unprepared and underfunded to provide such supportive services to cancer survivors and caregivers. Furthermore, many cancer survivors cannot access the treatments and resources that are available to improve their quality of life because the care is simply not available where they live, and, if it is, they lack health insurance or the financial ability to pay for it.
Cancer treatment must be patient-centric and holistic, and it must encompass supportive symptom-management needs as well as comprehensive psychosocial support for both patients and caregivers. All cancer survivors should have access to mental health providers, support groups, career and legal advice, as well as the opportunity to participate in rehabilitative care focused on maximizing their functional ability.
Today, every cancer patient should be screened for distress early in the course of their illness and at strategic intervals. Institutions should ensure that resources are available and funded to respond to the distress needs of survivors. These can be either internal resources or verified external resources.
When appropriate, and as mandated by the American College of Surgeons, survivors should be given a Treatment Summary and Survivorship Care Plan following treatment. In addition, oncology institutions should develop and promote programs along the cancer continuum that prepare survivors for life after cancer. This support should start at the time of diagnosis.
Last, academic medical centers and other educational entities should offer educational initiatives for health care science students, staff and faculty to address specialty concerns related to survivorship care. Primary care providers especially should be aware of the impact of cancer therapies across a survivor’s lifetime.
In the long term, we need a comprehensive, unified, reimbursable system of psychosocial, spiritual and emotional care that promotes healthy living and wellness to encourage healthy behaviors and healthy coping. Support for every cancer survivor should include oncologists, primary care providers, and survivorship and palliative-care providers. These experts should provide coordinated guidance as well as monitoring for recurrence and for late and long-term effects of cancer treatment.
The United States could be a world leader in cancer survivorship, as well as treatment. By bringing together experts from a range of disciplines, we can help patients overcome the most devastating effects of their disease.
Evidence demonstrates that this support can reduce morbidity and sometimes extend life. OSUCCC – James researchers have found that practicing yoga twice a week for as little as three months reduced both fatigue and inflammation in breast cancer survivors. The reduction in inflammation is significant. Chronic inflammation is linked to the frailty and functional decline that often accompany aging. It is also linked to numerous chronic health conditions such as type 2 diabetes, heart disease, arthritis and Alzheimer’s.
Another OSUCCC – James study showed that stress reduction for caregivers extended life by four to eight years. Stress reduction also has been shown to reduce the size of cancerous tumors.
Additional research shows that lung cancer patients who have early palliative care along with standard-of-care treatment live longer than patients who do not have palliative care.
We are winning the war on cancer one patient at a time, and it has been one of the greatest triumphs of modern medicine. Cancer treatment has evolved, and it is time for the U.S. health care system to evolve with it. Cancer care cannot end when cancer survivors return home. We must also provide the support they need to thrive.