Is This Palliative Care’s Moment?
Not long ago, a middle-aged woman from a developing country arrived at San Francisco’s Laguna Honda Hospital and Rehabilitation Center. The woman had a rare, life-threatening illness. Relatives who live in the Bay Area had helped her travel here for a second opinion.
The opinion was not what they had hoped to hear. The illness was extremely advanced, and the woman was admitted to the palliative care and hospice program at Laguna Honda. A team of caregivers – nurses, nursing assistants, physician, social worker, volunteer, chaplain, pharmacist and dietitian – was assigned to help ease her physical and emotional suffering.
The patient, however, made clear she did not want to die in unfamiliar surroundings, thousands of miles from home.
Anne Hughes, an advanced practice nurse in palliative care who is part of the team at Laguna Honda. But because the patient’s wishes were quite clear, the team worked to arrange the woman’s arduous trip home.“It was difficult to consider sending her back to a place where there is no home health [care]…and where access to medical equipment and supplies is limited,” says
“Several months later, she was still alive,” says Hughes, who possesses a PhD in palliative care from UCSF School of Nursing and decades of hands-on experience. “A testament to the healing power of home.”
The story speaks to the way societal perceptions about palliative care have changed. As recently as 15 to 20 years ago, it was a rarity to accede to the wishes of a seriously ill patient if those wishes included refusing his or her best chance to extend life. Today, in homes and hospitals across the country, understanding and honoring the wishes of seriously ill patients is occurring with increasing frequency; 53 percent of hospitals in California now deploy a palliative care team trained to elicit patient preferences and respond accordingly – but that, of course, also means that 47 percent don’t.
The palliative care services at Laguna Honda also highlight concepts that many experts believe are at the heart of effective health care delivery: patient-centered and team-based. While those two terms are thrown around today in nearly every imaginable health care conversation, palliative care providers have been patient-centered and team-based for almost half a century.
The Growth of Palliative Care
A few years after the nurse, physician and social worker Cicely Saunders initiated the modern hospice movement in Great Britain in the mid-1960s, Florence Wald – another nurse and former dean of Yale School of Nursing – opened the first hospice in the US.
Since then, the growth of hospice care in this country has catalyzed a broader palliative care movement, one that assumes all patients who suffer from a serious, life-limiting disease – not just those actively dying – need symptom relief and supportive care to ease the stress of coping with their illness.
The movement reached a significant milestone in August 2011 with a three-day national summit convened by the National Institute of Nursing Research (NINR), the lead agency for end-of-life care at the National Institutes of Health. The summit – titled The Science of Compassion: Future Directions in End-of-Life and Palliative Care – examined the state of research and clinical practice and brainstormed ways to catalyze and shape future efforts.
Patricia Grady, director of the NINR. She saw everyone from leading scientists and clinicians to neighbors who she was unaware had an interest in the topic. “But I think the explanation for the interest is simple. Nearly everyone has dealt with or will deal with this issue.”“It drew nearly a thousand people, an enormous number for a summit of that sort,” says
One of the presenters was oncologist Jennifer Temel, whose 2010 article in the New England Journal of Medicine (NEJM) caused a stir by demonstrating that in at least some situations, palliative care is more than humane; it also is a valuable complement to curative treatments. Her study found that palliative care extended the life and improved the quality of life of patients with metastatic nonsmall cell lung cancer.
“We don’t yet know why patients in that study survived longer,” says intensivist and palliative care researcher J. Randall Curtis, from the University of Washington, another presenter at the conference. “But it makes sense to me, given what we’re learning about the stress of symptoms at end of life and about how conversations about the goals of care can help patients who choose to do so avoid toxic chemotherapy.”
The NINR summit and the NEJM study are only two headlines from the burgeoning growth in palliative care research, clinical programs and education. That growth is fostering an expanding knowledge base that is improving the symptom management and supportive care that are the movement’s pillars.
Symptom Management Advances
Over time, symptom management has broadened from a focus on relieving physical pain to include relief from dyspnea, nausea, sleep deprivation, depression and a host of other symptoms that can be linked to an illness or to the side effects of curative therapies. Managing those symptoms has traditionally been the province of nurses – and nurse scientists are among those leading the charge to discover better tools.
“Unrelieved symptoms remain a major cause of hospital readmissions, and we still don’t have enough effective interventions,” says Christine Miaskowski, the Sharon A. Lamb Endowed Chair in Symptom Management Research, American Cancer Society Clinical Research Professor and co-director of the interdisciplinary UCSF Research Center for Symptom Management at UCSF School of Nursing. Miaskowski was another presenter at the NINR conference.
She says that even when there is an effective intervention, there are other barriers to consistent symptom relief, including societal concerns about opiate use and addiction. She describes a patient who didn’t want to take her pain medications with her during a trip, because she was afraid the police would stop her. “Helping people make sense of all this takes a lot of teaching time,” says Miaskowski.
Nevertheless, she believes that the concerted efforts of the last few years have yielded more effective models for various symptoms and patient populations – and that other advances are on the horizon. Partly this is because she and other leading researchers are leveraging scientific advances to better understand the biological and chemical mechanisms behind symptoms.
Grady agrees. “We have made significant progress in both pain and symptom management,” she says. “We are learning more about the genetics of pain and biological variability, where people like Chris Miaskowski are doing great work. The increased interest in this stimulates drug development that can provide pain relief with decreased side effects.”
Miaskowski believes pressure and interest from patients is accelerating these efforts.
“In one study, we are trying to understand neuropathic pain associated with cancer and cancer treatment, and I have never seen recruitment like this,” she says. “Patients are talking to patients and we had 100 enrolled in just a couple of months.”
She and geneticist Brad Aouizerat have another large NIH grant to examine what puts people at higher risk for multiple symptoms and higher levels of symptom intensity. It is an ambitious study, designed to unlace factors that include demographics, genomics, phenotypes, molecular causes and environment.
“We have to approach it this way, because symptoms represent a very dynamic process,” says Miaskowski. “My hope is that ultimately we will find protective mechanisms that can guide the development of more targeted therapies.”
Supportive Care Advances
Yet even if scientific discoveries could magically relieve all symptoms tomorrow, the work of palliative care teams would not be complete. Patients and families often need or want psychological or spiritual counseling to help them manage stress or face their own mortality. Many need help navigating the health care system or other aspects of the outside world made more difficult by their illness. Some need education to better understand their condition and treatment options.
All of these services and more come under the umbrella of supportive care, which epitomizes the team concept. Depending on the patient, the nurse, doctor, pharmacist, social worker, psychologist, dietitian and chaplain all could have a role to play in delivering supportive care.
As with symptom management, research on how to improve and standardize supportive care has begun to accelerate. In particular, numerous researchers are looking at what they believe is at the heart of supportive services: improved communication to elicit and understand patients’ hopes and desires.
“How do you talk to people about really hard things like their preferences for care going forward?” asks Steve Pantilat, a palliative care physician and director of the palliative care program at UCSF Medical Center. “How, in a cross-cultural context, do you have conversations that bridge language and cultural differences?”
“How do we find the language to make sure that hope is still a part of the discussion?” adds Hughes.
Much of Tulsky’s research aims to understand what makes for successful provider-patient communication. For example, he and his team found that patients with advanced cancer rarely raise emotional concerns with their physicians. When they do, physicians tend to respond clinically, in language most patients struggle to understand.
In response, Tulsky and his team developed a training program for oncologists rooted in the principles of adult education. They tested it and after just one one-hour session, the oncologists were twice as likely to use more empathic language to ease patients’ emotional stress.
“If we’re trying to address patient suffering, talking serves two purposes,” says Tulsky. “It’s necessary to understand patient needs, and it is highly therapeutic for the patients and their families.”
“Families are a growing concern,” says Hughes. “In a facility, there are three shifts of staff; no one is doing 24/7, but family caregivers are. Those of us in palliative care recognize the stress and impact of family caregiving and – long after the death of their loved ones – of grief on these caregivers, who are sometimes left wondering ‘Did I do the right thing?’”
Curtis agrees. In his work at the University of Washington’s Harborview Medical Center, he has built a research program (supported in part by the NINR) focused on improving communication around the goals of care and, in particular, has looked at the effect of family conferences on family members with patients in the ICU. In one randomized trial, he found that these conferences dramatically reduced family members’ symptoms of anxiety, depression and post-traumatic stress disorder (PTSD) in the three months after their loved one died.
The Challenges of “The Conversation”
“The ‘death panel’ rhetoric caused some policymakers and others to shy away from talking about the importance of conversations about end-of-life care, but that’s a mistake,” says Curtis. “We just need to be clear that the goal is not to withhold care that people want, but to make sure people understand their choices and to withhold care they don’t want. These conversations can be stressful for clinicians, because in our culture, we aren’t comfortable talking about death. But these conversations are a teachable skill.”
Having the conversations is further complicated when they occur in the context of illnesses that are not life threatening. This is partly because patients and clinicians who are struggling to make the distinction between end-of-life care and the broader concept of palliation worry that receiving palliative care is tantamount to giving up. In some places, the solution has been to simply change the vocabulary.
Nancy Shepard Lopez is a nurse practitioner in the Symptom Management Service of the UCSF Helen Diller Family Comprehensive Cancer Center, a consultative service to which patients can be referred by their oncologist. She notes that when the service began seven years ago – one of the first of its kind in the country – its director, palliative care physician Mike Rabow, chose the name so there would be no automatic connection to end-of-life care.
“And what we do is supportive care and symptom management from the initial diagnosis on,” says Shepard Lopez. “We consider the patient in the context of the family and help with decisionmaking – whether it’s deciding on radiation versus a prostatectomy or whether to go ahead with a fourth line of chemotherapy – and we feed this information back to the oncologist. We are that safe place to explore the patient’s goals and wishes for that stage of their life.”
Questioning the Conventional Wisdom
Safe is good, but understanding best practices for these conversations can be tricky. As the knowledge base grows, some have begun to question conventional wisdom.
“Even though advance directives are federal policy, in our research we’ve learned that advance directives frequently don’t work because people cannot imagine themselves on a ventilator or feeding tubes, even if they have a life-threatening disease,” says nurse scientist and palliative care expert Marie Nolan, of Johns Hopkins University School of Nursing.
In an effort to find a better alternative, Nolan and her interdisciplinary research team focus more attention on who a patient wants to make health care decisions for him or her rather than on what treatment preferences the patient has. Nolan is testing an intervention in which patients with a life-threatening illness identify a person or people they rely on for help making decisions about their health care. Then, both the patient and his or her confidant fill out a brief questionnaire in which the patient describes the role he or she wants the “partner” to play in health care decisionmaking, while the partner speculates about the extent to which the patient wants assistance in this regard.
“Often, the [partner] will assume the patient wants to make all their own decisions,” says Nolan. “When they find out that the patient wants help, that’s the opening for a broader conversation.”
At that point, Nolan’s team sends the people home to further explore the topic and makes sure they understand these are only the initial steps; the conversations about the patient’s care preferences need to be ongoing. Every time patients return to the clinic, she says, there’s an opportunity to revisit the concerns.
“What guides our study is self-efficacy theory,” says Nolan. “People are likely to engage in a desired behavior if they’ve done it before, know someone who has, or have someone encouraging them. And we have some amazing preliminary qualitative data that is quite dramatic in describing how necessary these ongoing conversations are to better end-of-life care – and the important role the nurse has in facilitating them.”
And while Nolan is clear that nurses are not the only ones capable of facilitating these conversations, Nancy Shepard Lopez notes that the role does come naturally to nurses. “From day one in nursing education we’re taught people are bio-psychosocial-spiritual human beings who exist within families,” she says.
The landmark 2010 Institute of Medicine report, The Future of Nursing: Leading Change, Advancing Health, sees it Shepard Lopez’s way. The authors of this report wrote, “Palliative care is a model that is consistent with basic nursing values, which include caring for patients and their families regardless of their age, culture, socioeconomic status, or diagnoses, and engaging in caring relationships that transcend time, location, and circumstances.”
Shepard Lopez has learned how to play that role from her work with cancer patients, a group that has been the subject of most of the palliative care and end-of-life research to date. Perhaps this is because cancer treatments can be so punishing and, until the advances of the last several decades, cancer tended to be a death sentence. But all of that has begun to change.
As the cancer studies have highlighted the success of hospice care and the ways that curative and palliative treatments can complement each other, numerous clinicians and researchers are examining ways to employ palliation in the treatment of a much broader group of diseases, including congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer’s disease, HIV/AIDS and amyotrophic lateral sclerosis (ALS).
Heart failure appears to be the next big target, even though a decade ago, it was not even on the palliative care radar screen. Despite the morbidity and mortality rate of these patients – and the fact that heart failure is the number one admitting diagnosis, with patients often experiencing unaddressed pain and a diminished quality of life – only a small percentage of the referrals to hospice in hospitals are for heart failure.
There are a number of reasons, says Kathleen Dracup, former dean at UCSF School of Nursing and a renowned heart failure expert. “There are times these patients feel quite good, because existing treatments can ease the symptoms, and cardiologists tend to believe there’s always another potential treatment. They often see palliative care as giving up.”
But here, too, things are clearly changing. This year Pantilat was invited to a meeting of the American Heart Association, where there was a full session on palliative care. There’s an interest group at the Heart Failure Society of America. In addition, NINR has issued a request for applications on using palliative care for patients with heart disease.
“If you explain that you are a team of trained experts helping seriously ill people with stress and pain and quality of life, patients want it. Providers want it,” says Dracup. At UCSF Medical Center, she and Pantilat are conducting a randomized trial in conjunction with a heart failure program that reduced UCSF Medical Center’s 30-day and 90-day heart failure readmission rates by approximately 30 percent.
“We want to know if we can provide palliative care alongside optimized heart failure management and improve quality of life, pain and shortness of breath,” says Pantilat.
One of the challenges, says Dracup, is trying to create and document team-based interventions that can be duplicated. “We hope we’ll be able to create templates and strategies like the checklists and time-outs you see in surgery,” she says. “But we don’t have them yet.”
Sustaining the Movement
Despite the many advances over the past decade and heightened awareness and appreciation for the need, palliative care programs and providers remain in short supply, with a dearth of training programs.
“At UCSF we train four physician fellows a year, and nurse practitioners receive some training from the School of Nursing, but there is no fellowship equivalent in nursing and that’s something we need to address,” says Pantilat. “There is no course of study to be a palliative care nurse practitioner, but there needs to be.”
In addition, he says, there will never be enough palliative care clinicians to take care of all the needs, so nursing and medical programs have to integrate palliative care training throughout their curricula.
That’s precisely what is going on at UCSF School of Nursing, where a survey course titled “Palliative and End of Life Care,” which began a decade ago as an elective and originally drew 10 or 12 students, has grown to 42 students in 2012 and will be a mandatory course for many of the School’s programs in the 2012-2013 academic year.
Kathleen Puntillo with initiating and maintaining the course for all these years. They have both been able to draw from a Bay Area network of advanced practice palliative care nurses and physicians who serve as guest speakers.“Students come from all specialties,” says Koetters, who teaches the course, a compilation of topics that range from symptom management to psychosocial issues, communication, legal concerns, cultural considerations, ethics and spirituality. She credits Professor Emerita
“At Duke, we have a fellowship program for physicians that is drawing topflight applicants, and nursing has expressed a huge amount of enthusiasm for rotating with us,” says Tulsky. In addition, residents from other specialties often ask to rotate through the palliative care program. “It allows them the opportunity to learn some discrete skills…and go back to that place where they first thought about becoming a health care provider.”
The challenge for these programs, says Tulsky, is to give people concrete tools so they can work with patients in a way that’s more effective, with methods that can be standardized and repeated. “We have good, hard data that indicates we can do that,” he says.
Educating the Public
But educating nursing and medical students about palliative care is only one piece of the picture. Given widespread misperceptions about the concept in the general public, as well as among practicing providers, the education campaigns must reach out more broadly. A particular focus is helping people understand that palliative care is not restricted to end-of-life care.
Pantilat believes that it’s up to people in the field to create a concerted public information campaign. “We know that when people really understand what palliative care is, they like the idea of that extra layer of support,” says Pantilat. “We have to make clear there is another way to face serious illness. What is more American than choice?”
As an example, the NINR has taken a particularly prominent role in increasing awareness about palliative care. In addition to the 2011 summit, the NINR has on its website a palliative care brochure, available in both English and Spanish, that has been downloaded over 2 million times in the last couple of years.
Despite all of this progress, in many ways palliative care remains in its infancy, with numerous issues needing resolution, beyond those of better symptom management and supportive care.
For example, there is the thorny issue of reimbursement. While physician services are reimbursable, other team members, including nurses, are part of the overhead.
The reimbursement issue might be even more challenging for those hoping to deliver home-based, nonhospice palliative care for patients with chronic, life-limiting illness. “These patients are living at home and experiencing so much suffering,” says Tulsky. “We’ve got a tried-and-true model in home-based hospice care, but at this point, nobody will pay for the same model when it is not for hospice.”
This is troubling for patients, who want the palliation but are understandably unwilling to give up on their hopes for a cure.
“We need to find creative ways to get this done,” says Pantilat, who mentions a UCSF program called Housecalls that delivers some palliative care services. He also is somewhat encouraged that insurers have begun to experiment with this concept. At a time when reimbursement models are beginning to shift to paying for outcomes, rather than volume of procedures, studies that indicate palliative care can improve care quality take on added significance.
Which is why merely having a service is not enough, says Pantilat. He believes it’s time to develop methods for understanding the quality of care provided. To that end, his UCSF palliative care team is leading a network of 19 others from California hospitals to collect data on topics ranging from the number of people who have their pain relieved in the first 24 hours of being seen by the palliative care team to care availability, patient satisfaction and the value that team members deliver.
Hughes says this kind of thinking is what makes palliative care so vital. “There is a great tradition of dedicated, interdisciplinary work,” she says. From UCSF School of Nursing in particular, Hughes mentions people like Professor Emerita Betty Davies, Dracup, Miaskowski, and Puntillo as thought leaders who are truly advancing the science.
“But it remains complicated,” she says. “We are dealing with so many things on so many levels, let alone an American society that wants it all – don’t dare deny me any intervention, but also make sure I have a peaceful death.”
The work continues.