Palliative care can help people live better, according to Clareen Wiencek, PhD, RN, ACNP, ACHPN at the University of Virginia. Wiencek is Advanced Practice Program Director for MSN and DNP programs in the School of Nursing and immediate past president of the American Association of Critical-Care Nurses.
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“What matters most?” may seem like an easy question, but when someone is living with a serious or life-limiting illness or injury, asking the question may take on new meaning and getting there may need assistance. Nurses provide holistic care to patients and their families and ask some variation of “what matters most” every day. Palliative care clinicians do the same and combine this focus on patient-centered care with a multidisciplinary, multidimensional and expert approach to pain and symptom management.
So, what matters? This might be cure of an aggressive cancer or being able to work despite fatigue related to heart failure. What matters could also be one last walk in the mountains or on the beach, playing with one’s grandchild or attending a beloved family member’s wedding. Beer mattered most to Andy, and caring for her developmentally disabled son mattered most to Susan.
Andy loved beer. He had been in the hospital for weeks for metastatic cancer so beer was not readily available. Yet, when he knew he was dying, he asked if he could go outside one more time to the garden, drink a beer and share a moment with his wife.
This was not going to be easy. Andy was bedridden and even small movements exacerbated his pain. He had multiple lines and pumps and oxygen trying to keep him more comfortable. And, that garden he wanted to go to was four floors, three elevators and one building away. But Andy’s nurses and his palliative care team ignored those obstacles and moved him – beer, bed, pumps and all – to the garden. Andy and his wife enjoyed a beer on a sunny, summer day. He died two days later.
For Susan, what mattered most to her, as she was living and dying with advanced heart failure, was who would take care of her developmentally disabled son. She knew there were no further treatments for her heart failure but she needed time to work with social services to ensure he would have the support – financial, social, and psychological – when she was gone. Time mattered most to Susan.
Every day in hospitals, patients are asked the question, “what is the matter with you?” This question by a physician or advanced practice nurse is the basis for diagnostic reasoning that leads to the right treatment for the right problem. But palliative care clinicians modify that question slightly. They ask, “what matters to you?” as the basis for eliciting goals of care and planning management for complex pain and other symptoms when living with advanced illness. This question has been gaining prevalence since the director of Scotland’s National Health Service, Jason Leitch, engaged the audience with his TED talk, “What Matters to Me-A new vital sign.”
The discipline of palliative care has experienced rapid growth over the past 20 years. Now, 95% of academic medical centers in the United States and over 60% of hospitals in general have palliative care teams. Palliative care is goal-oriented care for persons living with serious or life-limiting illness or injury that can be offered at any age and any phase of the disease. Additionally, palliative care is offered in the hospital, community or home. I like to say that palliative care helps people live better with their disease. Some people would say that palliative care helps people living with serious illness find what matters most.