“We are good at planning for life before it comes into the world, but we rarely plan for death.”
Susan Kristiniak, DHA, MSN, RN, associate director of Palliative Care, urged Penn Medicine employees in a recent training that many geriatric patients, including those with late stage forms of cancer, lack a plan for how they wish to spend their final days – and that care teams need to engage patients to ensure their wishes are respected.
The most effective way to ensure medical teams treat patients according to their end-of-life preferences is through an advanced directive – a legal record signed by a competent individual that guides care decisions when a patient’s poor health prevents them from making the decisions on their own.
New initiatives at Penn Medicine are encouraging more patients to complete this important document, and training clinical teams to more effectively integrate these formal requests into care.
These efforts also reflect increasing support nationwide for better care planning. Beginning this month, the Centers for Medicare and Medicaid Services will reimburse healthcare practitioners who participate in advanced care planning conversations with their patients. The decision – previously removed from the Affordable Care Act by politicians alleging it could lead to “death panels” dedicated to rationing care – affects treatment options for approximately 50 million Medicare beneficiaries and could change practices for reimbursement among private companies for additional insured patients.
Additionally, some health economists suggest reimbursing physicians for these conversations with patients could combat the risk of rising healthcare costs by using hospital resources more intelligently in treating an aging population. Those over 65 years of age made up 14.1 percent (44.7 million) of the U.S. population in 2013 and are estimated to make up 21.7 percent of the population (98 million) by 2060. Today, approximately 25 percent of Medicare healthcare spending is directed to those 65 and older during their last 12 months of life.
In addition to potential cost savings, these conversations between clinicians and patients before onset of an illness and during treatment can improve patient care while helping patients maximizes control of their own care, as well as relieve emotional stress often experienced by loved ones, a guardian, health care agent, or health care representative otherwise tasked with making difficult ethical decisions on matters. That could include whether to prolong life at any cost or level of pain, or when to pursue less aggressive treatment when a patient is struggling.
“The Health System sees value in ensuring our focus is patient and family-centered care aligned with Penn Medicine’s ,” said Kristiniak. “We are talking to patients about their goals and wishes when faced with difficult diagnosis, being mindful of not only their physical needs but psychosocial and spiritual needs and assuring teams adhere to their wishes.”
The team is rolling out technology throughout Penn Medicine hospitals that allow advance directives to be scanned into patients’ electronic health records so it’s easily accessed by clinical teams, and patients do not need to bring it every time they visit the hospital.
These documents are more readily available to care teams well equipped to understand and act on them, thanks to efforts by Susan Chodoff, director for Regulatory Affairs and Accreditation Compliance, and Lisa Garcia, BSN, RN-BC, MSN(c), Acute Care for Elders (ACE) unit manager at Penn Presbyterian Medical Center (PPMC), who secured a grant from Penn Medicine’s Board of Women Visitors – a group dating back to 1875 as the Board of Lady Visitors and still dedicated to raising funds and support patient care initiatives to this day.
The grant allowed nursing teams – including nurses, certified nursing assistants, and physical and respiratory therapists, in PPMC’s ACE unit to receive half-day “Conversation Ready” training. During the event, participants experienced an eye-opening activity delving into individuals’ own personal values and needs in the scope of scenarios their patients could face.
“The questions start out light – ‘How do you feel about discussing these issues?’, for example – to if you couldn’t toilet yourself, who would you want to do that?’,” said Kristiniak. “They get pretty visceral; it’s gut-wrenching. The experience allows participants to have a deeper understanding of the types of issues our patients and families face.”
A learning session then briefs medical professionals on Pennsylvania advance directives, legalities and language, along with a review of communication strategies and new ways to talk with families about end- of- life care. This new understanding was then put to the test during the session’s study of role-playing simulated patient scenarios tailored to their patient population.
Nina O'Connor, MD, director of Palliative Care at the Hospital of the University of Pennsylvania and Kristiniak developed the Setup, Understand, Priorities, Explain, Review, or SUPER, technique for caregivers to ask patients about their values, what they competently understand about their disease, and other preferences.
“As providers, they are now better equipped to begin care planning,” said Kristiniak. “Getting this information puts them on the same path as the patients they treat, being mindful of not only the present moment, but also taking a longitudinal approach.”
Communications pilots with more than 170 attendees have been completed at HUP, PPMC, and also at the long-term acute care facility at Good Shepherd Penn Partners among multidisciplinary teams dedicated to abiding by a standard approach for communicating with patients at the end stage of life. Monique Neault, MSN, CRNP, a nurse practitioner at Pennsylvania Hospital (PAH), is integrating the same inter-professional model into palliative care at PAH, and Chester County Hospital has also participated in the “Conversation Ready” working group team.
“Many times, these conversations would occur, but they would occur with individual members of care teams,” said Kristiniak. “We wanted to merge this comprehensive information to make it more available to patients and families leading to a consensus of care among everyone.”
While these nurses share this knowledge with others on their medical teams, additional efforts are underway to directly reach patients about the importance of planning.
Leon S. Kraybill, MD, chief of Lancaster General Health’s division of Geriatrics is leading a “Your Life Your Wishes” effort to engage the community in advance care planning.
This emphasis could benefit much of the U.S. adult population, as a 2014 study in the American Journal of Preventive Medicine found that just 26 percent of adult respondents completed an advance directive.
David Casarett, MD, MA, director of Hospice and Palliative Care, is leading development of a software application supported by Penn Medicine's Innovators Accelerators Program that aims to encourage more Penn Medicine patients with care preferences to complete and share an advance directive, as well as increase compliance with advance directives among medical teams.
“These topics are usually the elephant in the room that everyone dances around,” said Kristiniak. “We’re taking strategic steps to end that. Any patient deserves that.”
Photo above: From l to r: An actress with Trauma Social Worker Bonnie Pasternack, MSW, LCSW and Nurse Teresa R. Henry, BSN RN-BC, a clinical nurse, work through a mock patient example during "Conversation Ready" training.