Patients with advanced cancer are asked to make decisions on how they want their care managed once treatment is no longer helping. Hospice. Patients who are benefiting from cancer treatment need help coping with the side effects of both their cancer and its treatments. Palliative care. How are they different? When are they the same? Oncology Nurse Advisor (ONA) talked with Diane E. Meier, MD, about what nurses need to know about quality palliative care programs, the impending changes from the Affordable Care Act (ACA), and how to engage patients in palliative care discussions.
Meier is director of the Center to Advance Palliative Care (CAPC), vice-chair for public policy, and professor of Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai in New York City. She is also co-author of a new book on palliative care, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform.
ONA: What are barriers to more effective use of palliative care?
MEIER: Barriers to more effective use of palliative care include a misunderstanding among clinicians in general about the fact that palliative care is a concurrent—at the same time as disease treatment—model and not the same as hospice. A lack of training on the core principles and practices of palliative care also hinders more effective use of palliative care. Palliative care vs hospice is a difficult concept to clearly explain. All hospice is palliative care, but not all palliative care is hospice.
The focus of palliative care is on quality of life. Ideally, patients should be in hospice for end-of-life care. But patients with serious illness are facing months and years of disease and its treatment, not days and weeks, and they and their caregivers need support in coping with the enormous physical and emotional stress.
ONA: How will the expansion of access to palliative care under the ACA impact oncology care?
MEIER: The ACA does not call explicitly for palliative care, but its attention to value-improving quality while controlling costs is a major incentive for developing system-wide palliative care services, which do both.
ONA: When is the best time to open a discussion on palliative care?
MEIER: The best time to open this discussion is at the point of diagnosis of any serious illness. The nurse can say, “Tell me about how you and your family are dealing with this?” A cancer diagnosis affects the patient’s sense of identity, and their sense of future. Asking open-ended questions, such as “How are you and your family coping?” or “How is this affecting your daily life?” allows the patient to name what they are feeling, process the information, and talk about their fears and concerns. Patients’ fears are usually worse than reality, and allowing them to talk them out can go a long way toward to easing those fears and concerns.
Initially, nurses should ask patients and families if they’d like to talk about what to expect in terms of disease progression, treatments, quality of life, and survivorship. This conversation may need to be repeated after the patient and family have had time to reflect on the diagnosis, and the reality sinks in. A few weeks later, nurses can ask about future decision-making. Who does the patient want to make decisions on their behalf should the patient no longer be able to make their own decisions? Later on, these discussions can be on the practical and financial realities of their situation, such as if or when the patient (or the caregiver) is no longer able to work, or for longer-term illness, if the caregiver is no longer able to care for the patient.
ONA: How do caregiver/family dynamics impact palliative care?
MEIER: Family dynamics and their assessment and support is central to good medical care of any type and is especially important during serious illnesses, when stress and disagreement tend to emerge because of the stress and anxiety of their loved one’s illness.
ONA: How should nurses assess for the needs of patients’ caregivers?
MEIER: All clinicians, and especially nurses because of their very close and connected relationships with patients and families, need to assess and then support family caregivers. There are a number of short, quick, family caregiver burden assessment instruments available. But asking the simple question “Mrs. Jones, tell me how all this is affecting you?” and then spending the time to listen to the answer is the best way to begin that conversation.
Often the caregiver is in the sandwich generation, someone caring for both younger and older family members, plus working or facing the need to stop working. There is a need to validate the caregiver as a person; and although the patient needs care, the focus is not all about the patient. The caregiver is essential to good care, and understanding the caregiver’s needs, concerns, and issues is really important to quality patient care.
ONA: What can nurses do to improve patient outcomes through effective palliative care?
MEIER: Just like doctors, most nurses have had little to no training in the main elements of palliative care: expert symptom management; skilled communication about emotionally difficult topics; and coordinating seamless care and care plans across the continuum. However, most nurses are more knowledgeable than they realize. Their training has provided them with strong communication skills and extensive clinical skills.
Nurses can pursue training through ELNEC (End of Life Nursing Consortium; www.aacn.nche.edu/elnec) or CAPC (Center to Advance Palliative Care; www.capc.org) or Vital Talk (www.vitaltalk.org)—all of which can be used on a mobile device or tablet during short periods of down time such as a break, waiting for the bus, or in line at the grocery store. These superb online resources are an effective and efficient way to improve skills and knowledge on these crucial elements of quality patient and family care. Exposing yourself to high-quality training is eye opening. It shows us how we can continue to improve our skills in service of reducing the suffering of our patients and their families.