When patients are admitted to the intensive care unit at Virginia Mason Medical Center, they receive access to palliative care services that include pain and symptom management. Their families are given around-the-clock visiting hours, and are invited to attend clinical meetings where they are encouraged to ask questions about their loved one's care, says Michael Westley, M.D., medical director of critical care at the Seattle-based hospital. Westley says all ICU patients benefit from palliative care — not just those with a terminal diagnosis.
"If we think about palliative care as a program, we get siloed in ways we don't intend," Westley says. "We think of palliative care and supportive care that every patient and family should get if they're facing a life-threatening illness."
Overall, palliative care is growing in leaps and bounds. According to the Center to Advance Palliative Care, 63 percent of U.S. hospitals reported having a palliative care team in 2009, up from 24.5 percent in 2000. And proponents say palliative care is uniquely poised to thrive in a system that increasingly emphasizes care coordination, patient-centeredness and cost-containment.
"It's a triple hit, with quality, length of life and cost all going in the right direction," says Diane Meier, director of the Center to Advance Palliative Care.
In fact, an increasing amount of research suggests that starting palliative treatment in the emergency department or intensive care unit can lead to significant improvements in care. According to a 2007 study published in Critical Care Medicine, patients who received palliative care consultations at one ICU experienced significantly shorter lengths of stay than patients who didn't receive the consultations, without any differences in mortality or discharge disposition. And a 2009 study in Cancer found that 42 percent of ICU patients in a cancer center who were referred to a palliative care team survived to discharge; the report credited the team with consistently identifying problems and making recommendations that improved patient symptoms.
And like Virginia Mason, Meier says many hospitals are offering palliative care to all ICU or ED patients. CAPC recently launched two programs, Improving Palliative Care in the ICU and Improving Palliative Care in Emergency Medicine, designed to build best practices for hospitals to use in EDs and ICUs.
"There's been a recognition that there are enormous palliative care needs in ICUs," Meier says.
For hospitals considering adopting or expanding palliative care in the ED or ICU, there are several key competencies to consider, including identifying patients, communicating with those patients and their families, and engaging clinical staff.
Palliative care for all
All patients entering the intensive care unit at St. Clare Hospital & Health Services in Baraboo, Wis., are consulted for possible palliative care services, says Maureen Murphy, M.D., who heads up the hospital's palliative care initiative. The hospital ultimately plans to spread the program to its medical-surgery units, where criteria would include diagnoses of cancer, congestive heart failure and other serious conditions.
"What we hope to do is capture people from the onset of diagnosis," Murphy says.
At St. Luke's Cornwall Hospital in Newburgh, N.Y., the emergency department also assesses all incoming patients for palliative care services, using criteria that include an oncology diagnosis, two or more chronic conditions and two hospital admissions within the previous 30 days. From there, clinicians guide patients and their families through everything from referrals to community hospice providers to the day-to-day navigation of their hospital stays, in addition to providing traditional palliative services like pain and symptom control.
"Families have a challenging time coming to grips with the situation," says Allan Atzrott, CEO of St. Luke's. "It's about coaching them, walking them through, crying with them. It's a very emotional experience."
In Rhode Island, all of the state's 11 acute care hospitals and 23 ICUs have begun using a bundle of best practices for palliative care as part of a broader ICU quality improvement collaborative implemented by Healthcentric Advisors, a not-for-profit quality improvement agency. Clinicians discuss the program with all incoming ICU patients, with the exception of patients who have been there less than 24 hours, end up there after an elective service or are boarding there because of a lack of room elsewhere or for a psychiatric evaluation.
Since the program began, roughly 53 percent of ICU patients in the state have had a palliative care consultation, says Margaret Cornell Vigorito, R.N., senior program administrator for Healthcentric Advisors.
"We decided that based on the fact everyone in the ICU is at risk," she says. "It's more of an opt-out versus an opt-in."
Clinicians rounding at St. Joseph Hospital in Orange, Calif., determine which patients may be appropriate for palliative care consultations with a trigger tool that analyzes everything from organ dysfunction to the existence of family conflicts, says Joseph Preston, M.D., an intensivist on the hospital's palliative care team. The team includes a neurologist, a pain management physician, an internist in the hospice department and a spiritual care chaplain.
Having the palliative care talk
When Beth Israel Medical Center in New York City first launched its palliative care program 15 years ago, the hospital mainly offered the services for patients suffering from chronic or acute pain, says Russell Portenoy, M.D., chair of the hospital's Department of Pain Medicine and Palliative Care. In recent years, however, the hospital has broadened its scope for palliative care; today patients who meet a specific set of criteria, including advanced illness and a weeklong stint in the ICU, are automatically referred for a palliative care consultation.
Over time, Portenoy has seen those consultations move from a traditional emphasis on controlling pain to discussions of a broader range of palliative care services, which include an on-site hospice unit. But talking about palliative care with patients and their families is still difficult, he says. The general public knows the word, but they equate it with imminent dying," Portenoy says. "They don't have a sense [that] it's a set of services."
Educating patients and their families on palliative care can include multiple meetings and modes of communication. For instance, Premier Inc.'s palliative care collaborative recommends the identification of a family decision-maker on the first day, an analysis of the patient's CPR status, a pain assessment and the distribution of an informative leaflet. On the third day, providers offer social work services and spiritual support; by Day 5, hospitals host an interdisciplinary meeting with the family, social workers and chaplains.
Healthcentric's Vigorito also advocates integrating palliative care consultations seamlessly with the rest of a patient's care, so it isn't seen as a service oriented only toward terminally ill patients. During the consultation, patients and their families are consulted about their preferences for their treatment courses within the first three days, and information about resuscitation orders and other advanced directives are documented in an electronic medical record.
"This is to ensure the entire health care team knows what the decisions are," Vigorito says.
At St. Joseph's Hospital, patients and their families receive a brochure identifying the issues families should be ready to discuss, which includes advice on what questions to ask physicians. In turn, clinicians use a standardized set of conversational tools to communicate with patients, Preston says.
Getting staff on board
However, even the most vocal palliative care advocates say engaging clinicians can be difficult, given the medical profession's historic emphasis on improving patients' health indicators at all costs.
"Physicians are trained to do everything possible to sustain life," St. Luke's Cornwall Hospital's Atzrott says.
That mindset can be difficult to overcome, St. Clare Hospital's Murphy says. To build support for the program, St. Clare developed a musical play, "Creating Peace of Mind," that gave clinicians a chance to learn about the initiative in a calmer setting.
In addition, palliative care champions representing physicians and nurses work with both the hospital administration and hospice and respite care to offer feedback, and the team works closely with the clinicians to develop their own styles of communication with patients and their families.
And CAPC director Meier believes some of the resistance to palliative care from physicians is dissipating, noting that while older doctors may have received scant training around the discipline, a new generation of physicians is more familiar with the concept.
"The younger the physician and the more recently trained, the more exposure they had during training," Meier says, adding that with proper training, physicians can overcome misconceptions that palliative care is only appropriate for dying patients.
Family comes first
At Virginia Mason, Westley says the ICU palliative care initiative was specifically designed to ease both patient and family concerns. For instance, family members may become worried by the constant sound of alarms in the unit, not realizing that many of the alarms are not necessarily emergencies.
Westley recommends keeping families constantly engaged with their loved one's care by having clinicians ask them how they perceive the experience to be proceeding.
"This is not something that would be nice to do for patients if we have time," Westley says. "We don't have the time to waste not doing this. Patients and their families suffer in ways we don't nearly understand because of our inability to see what's happening."
And feedback from families can help palliative care teams tailor their approach. For instance, when St. Joseph's Hospital sought feedback on its hospice program, it learned that many patients and their families didn't like immediately transitioning from the ICU because they'd formed close ties with nurses and other families going through the same experience. So the hospital built a transitional space within the ICU where patients could stay for 24 to 48 hours before transitioning to hospice.
"They bond with other families in waiting rooms," Preston says. "There's a whole support system that health care providers don't realize is there. When you move them to a different geographic location in the hospital, that all goes away."
Family engagement is important throughout the patient's care journey, St. Clare's Murphy says, recalling a recent consultation with a dying patient in the hospital's ICU.
At the patient's request, Murphy recalls, the hospital arranged to have all family members visit the woman in her final hour.
"We called the family together to celebrate her life," Murphy says. "That's what they were waiting for."
New York Takes the Lead
Two new laws in New York state, which both took effect in 2011, are specifically designed to promote palliative care in the acute care setting. The Palliative Care Information Act requires hospitals to offer palliative care information to terminally ill patients; the Palliative Care Access Act, meanwhile, requires providers to "facilitate access to appropriate palliative care consultation and services."
Lorraine Ryan, R.N., senior vice president for the Greater New York Hospital Association, says the laws encourage hospitals to experiment with palliative care without promoting specific action steps. "This will help steer providers in the right direction," Ryan says. "It sort of endorses the belief that this is an appropriate way of approaching certain types of patients that didn't exist before."
Independent of the new mandate, GNYHA recently launched the Palliative Care Leadership Network. Ryan says the association's members have taken varying approaches to palliative care and are at a different stages of development, creating the need for a system of information sharing. While most of the network's conversations to date have been informal, the group now is working on a smaller collaborative to develop a palliative care bundle addressing three major aspects of care: identifying patients for whom palliative care services may be appropriate, creating broad strategies for treatment options and developing measurements to document compliance.
"It's about having a standardized protocol for contemplating the needs of these types of patients," Ryan says.
The specifics will be left up to individual providers, notes Sara Kaplan-Levenson, GNYHA's project manager for the collaborative. For instance, details like where patients should be assessed for palliative care might range from the ED to the ICU, and their destination after initial treatment could range from an inpatient hospice bed to community-based care from home.
"There will be some initial point of transition, but the treatment element is unlikely to be particularly prescriptive," Kaplan-Levenson said.
Many hospitals are assessing all patients admitted to ICUs or EDs for palliative care services. Some hospitals use assessment tools that take into account terminal diagnoses, chronic conditions and the existence of family conflicts. Others offer palliative care to all patients, regardless of diagnosis.
Talking About Palliative Care
Hospitals employ a mix of strategies to bring families into the conversation, including identifying a chief decision-maker, inviting attendance at family conferences or clinical meetings and encouraging family members to speak up and ask
Getting Staff Buy-In
Experts say not all clinicians and nurses are on board with palliative care, especially those who never received dedicated training. Palliative care proponents say it's important to offer education to all staff engaged in palliative care in a setting outside their day-to-day work environment. It's also important to train staff on how to communicate with patients and their families. Some hospitals use conversational tools to help clinicians deliver difficult information; others encourage staff to develop their own conversational styles.
The Role of the Family
The ICU and ED can be confusing environments for patients and families who aren't used to the constant noise and activity, and it's important to meet with family regularly to assuage concerns and answer questions, says Michael Westley, M.D., who heads up the critical care team at Virginia Mason Medical Center in Seattle. Other palliative care experts recommend incorporating feedback from families into palliative care design, and making sure the family is engaged and included in every step of their loved one's care journey.