ESTER WALL’S father was always full of energy. Handsome, athletic and well-dressed, Ricardo Cortez Melendez was also known as a practical joker. “I remember him being the life of the party when we were kids,” Wall says. “He loved to dance and listen to music. He would take us out every weekend. I don’t remember ever being bored with my dad.”
But after Melendez was diagnosed with stage-4 lung cancer in 2008, at the age of 73, his health declined rapidly. He was confined to a hospital bed and in considerable discomfort, experiencing both pain and shortness of breath. “It was so stressful to see my dad like that,” says Delia Aguiar, the youngest of Melendez’s four daughters.
As a social worker at UCLA Medical Center, Santa Monica, Aguiar had worked with members of the palliative-care team and knew they were expert in managing symptoms and at providing information and counseling families facing the imminent death of a loved one. She requested a consultation with the group, beginning a relationship that Aguiar and her sister say was immensely helpful during the final days of their father’s life.
“Our palliative-care doctor was informative, available, respectful and caring,” Wall recalls. “Palliative care made things less painful for our dad and helped us all to cope with his death.”
IT WASN’T LONG AGO that comfort and the psychosocial needs of seriously ill patients and their families were not top priorities for medicine, but that has changed. “The relief of suff ering and the cure of disease are both obligations of the medical profession,” says Bruce Ferrell, M.D., director of palliative-care services at UCLA. “People sometimes see a rigid healthcare system that can become disconnected from the mission of providing people with humane, respectful care. Our goal is to assist them so that patients don’t suffer needlessly.”
Palliative care – which aims to relieve suffering and assist seriously ill patients and their families to address issues of treatment and support that arise in life-threatening illnesses – is among the fastestgrowing medical subspecialties, fueled by a number of forces, not the least of which is consumer demand. The Journal of Palliative Medicine estimates that palliative- care programs have doubled since 2000, with more than half of hospitals with at least 50 beds now having such a program. That includes UCLA, which since 2007 has had a palliative-care service providing consultations 24 hours a day, seven days a week, at both its Westwood and Santa Monica campuses.
“While years ago it was thought to be a small piece of what was important in providing care, today palliative care is front and center as an integral part of care for virtually any seriously ill patient,” says Neil Wenger, M.D., director of the UCLA Health Ethics Center.
Palliative care is typically provided by a multidisciplinary team, including physicians, nurses, social workers and clergy. The primary focus tends to be relieving pain through medications and other strategies, but all potentially distressing symptoms are targeted – from fatigue, anxiety and shortness of breath to nausea, depression, insomnia and others. Of equal importance are discussions among palliative-care teams with patients and their families, in consultation with the medical-care team, about goals of care and treatment plans.
“The goals that we concentrate on are the patient’s goals,” says Jeannette Meyer, a clinical nurse specialist for palliative care at Santa Monica-UCLA Medical Center and Orthopaedic Hospital. “We try to create a treatment plan that will speak to the things that are most important to that person.
Perhaps the most common misconception about palliative care is that it is synonymous with hospice care; in fact, though it plays a prominent role in the final days or hours of a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.
“It used to be that all of our efforts at patient care were directed at curative interventions up until the point that patients were on their deathbed, and then everything turned to comforting them in the last few days of life,” says Dr. Ferrell. “Today, there is greater appreciation for the importance of symptom control and discussions with patients and their families about the natural history of their disease early in the course of the illness.”
At UCLA, considerable effort has been made to educate hospital staff about this shift. “We believe we have much more to offer in terms of symptom control earlier on in the disease process,” says David Wallenstein, M.D., a UCLA palliative-care physician. In addition to preventing needless pain and discomfort, he notes, such interventions can improve the likelihood that curative approaches will succeed. For example, helping to control symptoms for chemotherapy patients can enhance their ability to maintain the strength and function they need to withstand the treatment. Earlier involvement of palliative-care teams can also help to facilitate important discussions about advance directives and other end-of-life issues at a more opportune time.
“It’s so much easier for the patient and their family to have these discussions in a controlled environment, as opposed to at the bedside in the intensive care unit at 2 a.m. when there’s a crisis,” says Dr. Wallenstein.
Delia Aguiar, Ester Wall and another sister were at their father’s bedside the evening when Dr. Wallenstein arrived for an initial consultation. The physician discussed a drug regimen that could help to make Melendez comfortable. Dr. Wallenstein cautioned the family that once Melendez was on the medication, there was a good chance he would no longer be able to interact with them. He suggested that they say whatever they wanted to say to him then in case this was to be their final opportunity.
Looking back, Aguiar remembers that Dr. Wallenstein had tactfully introduced the concept of end-of-life care and what their father’s wishes might be – but at the time, the family wasn’t ready to accept the inevitable. “He was really insightful and in tune that we weren’t quite there,” she says. “At that point, we just wanted our father to be comfortable.”
Once that was accomplished, the family was more receptive to the overtures of the palliative-care team members as the end neared. “I had avoided talking about death,” says Wall. “I know it sounds weird, but their telling us that it was the end was very helpful. They seemed very comfortable with the situation, which made me comfortable. For the first time in a long time, I felt I could let someone else take charge.”
The palliative-care movement was born in the 1980s, driven in large part by patients and families who were dissatisfied with hospital care – particularly as it involved life-sustaining treatments. Far more people were living many years in the advanced stages of chronic diseases, from stroke and dementia to heart failure and emphysema. Cancer was increasingly moving from an immediate death sentence to an illness that people could live with for years, though without being cured. Coronary-artery-bypass surgery, dialysis, ventilator support and other procedures and technologies similarly contributed to more years for people living with chronic illnesses.
But there was also concern that many medical interventions, while technically effective, fail to achieve patients’ goals – and in some cases themselves become a source of suffering. A growing number of family members were distressed at seeing a loved one experiencing pain and discomfort as a result of all-out efforts to keep them alive. This dissatisfaction helped to propel the hospice movement, which had originated in Great Britain two decades before. But as the concept of addressing the comfort of terminally ill patients took hold in the hospice setting, more and more people began to call for hospitals to integrate palliative-care concepts earlier in the course of the patient’s illness, even as approaches to prolonging life were ongoing.
The desire among patients and their families for more control over the dying process has been reflected in the consistent public support for the decriminalization of physician-assisted suicide, notes Diane Meier, M.D., director of the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine in New York City and director of the Center to Advance Palliative Care, a national organization devoted to increasing the number and quality of palliative-care programs in the United States. This support, Dr. Meier suggests, has underscored failures of the medical system to address the desire of seriously ill patients and their families for more say in the treatment process and more attention paid to their symptom management.
“It seemed people were interested in legalizing assisted suicide because they didn’t trust the medical profession to treat pain or respond to other sources of physical and emotional suffering,” Dr. Meier says. “They felt that their only alternative, absurdly, was to hasten their death. The palliative-care movement in many ways was a response to this by saying we don’t have to help people die; we can help them live with these diseases, and we should be doing everything we can to make that additional time of the highest possible quality, to the extent that that’s what patients want.”
Palliative care has come into its own as a discipline in the last decade, Dr. Meier adds, with the recognition that while patient autonomy and self-determination are important, they are not enough. “There was a realization that the medical profession also needs to have the skills necessary to respond in an expert way to pain, shortness of breath and other physical symptoms, as well as existential suffering, depression and anxiety,” she says.
Adds Dr. Ferrell: “These things have not been covered a great deal in the curricula of medical schools or in continuing medical education, so it is important to have experts involved.”
INEVITABLY, AN ISSUE AS SENSITIVE as end-of-life treatment and counseling is emotional and controversial. This was illustrated most recently in the national debate over healthcare reform: A provision in an early version of one of the bills would have provided Medicare funding enabling seniors to consult with practitioners on advance directives and available end-of-life services and support. This provision was mischaracterized by some opponents as establishing “death panels” that would represent a step toward governmentmandated euthanasia for the elderly.
But outside the political realm, surveys have consistently shown widespread support for palliative-care concepts of end-of-life counseling and symptom control. According to the Center to Advance Palliative Care, pain is the most common and widely feared symptom of hospital patients, and untreated pain results in medical complications, increased length of hospital stay, increased use of healthcare resources and decreased patient satisfaction, as well as unnecessary suffering.
And in the vast majority of cases, pain episodes and other symptoms can be eff ectively treated. “Medicine can’t always cure, we can’t always restore function, but we have an almost complete ability to palliate, and we don’t do enough of it,” says Dr. Wenger. “Although at times we might palliate less in order to maximize the chances of survival or cure, by and large we can do both simultaneously.”
At UCLA, the need to develop a palliative-care service was also driven by factors unique to the institution and its mission. On the one hand, notes Tom Rosenthal, M.D., chief medical officer of UCLA Health System, the university now has a significant primary-care presence throughout the Westside of Los Angeles, including a substantial geriatrics program. Many of these older patients have chronic illnesses and can benefit greatly from what palliative care can offer, Dr. Rosenthal says.
On the other end of the spectrum, as a tertiary/quaternary hospital system that sees some of the most complex cases, UCLA is at the forefront in applying ever-more-sophisticated technologies to the care of some of the sickest patients, many of whom come to UCLA after conventional treatments have failed. But these treatments are not always successful.
“We know, as a result, that we will have a significant number of patients who will be in our intensive care units for whom the curative approach has run its course, and thus we needed a multidisciplinary team that could work closely with families in offering insights and developing care plans in that setting,” Dr. Rosenthal explains.
Adds Dr. Wenger: “UCLA is a place where people come hoping for a miracle. High-quality palliative care is necessary to ensure good outcomes, even when the miracle doesn’t happen.”
There are many challenges to building a palliativecare program from the ground up, starting with the need for appropriate resources and personnel to ensure that a multidisciplinary team is available for consultation. Beyond that, the field is still new enough that raising awareness of the service among attending physicians and nurses is critical. “The biggest challenge is integrating this awareness into a culture that is very focused on heroic and spectacular lifesaving treatments,” says Dr. Rosenthal. “It can be difficult for a doctor whose passion is to do everything possible to help the patient recover to recognize that another approach may need to be incorporated.”
But Dr. Rosenthal believes such attitudes have begun to change, and that as more physicians learn about the palliative-care service, they are embracing the opportunity to call on the team’s expertise.
That’s been the experience at UC San Francisco Medical Center, whose palliative-care service, established in 1999, is among the nation’s oldest. “Places like UCSF and UCLA are large, highly specialized institutions built on research and clinical care designed to cure disease,” says Steve Pantilat, M.D., the founding director of the UCSF palliative-care program. “A focus on symptom management and the recognition that people die despite the treatment we give them is not an intrinsic part of the culture. And so a palliative-care service, at least at first, is swimming against the tide.”
But in the decade since his program was established, Dr. Pantilat has seen a major shift in that culture. His multidisciplinary team service is being called on to consult with more patients at, on average, earlier points in the disease process. “Among physicians, nurses, medical students and residents, palliative care isn’t new anymore – it’s just a standard part of the care we provide,” Dr. Pantilat says. Palliative care is now among the most highly sought-after electives among medical students and medicine residents at UCSF, he adds.
In building its service, UCLA has consulted with Dr. Pantilat, as well as with palliative-care experts at other established programs. A three-phase plan was developed to be implemented over the course of more than a decade. Th e first phase was to develop a system in which a team of well-qualified palliative-care providers was assembled, and physicians at both the Santa Monica and Westwood hospitals became familiar with their services and comfortable requesting consultations for their patients. The plan’s second phase involves introducing educational opportunities for physicians, nurses, social workers and other staff, as well as medical students and residents. Ultimately, the plan will move into a third phase: developing and carrying out a research program.
WHEN HE IS CALLED in to consult, Dr. Wallenstein explains, his first step typically involves sitting down with the patient and family to discuss their goals. “We talk about whether or not these goals are realistic, given the bigger picture, and then we operationalize these goals as much as possible,” he says. This tends to involve sensitive discussions with the patient and family members about the disease process and the patient’s prognosis – often representing the first time they have had these issues raised. Some families aren’t ready to think about worst-case scenarios, and those wishes are always respected. “I just try to make sure they have all the information they want to hear,” Dr. Wallenstein says.
Often, before patients and family members are able to have those discussions, efforts must be undertaken to make the patient more comfortable. To be sure, the bread and butter for all palliative-care teams in working with patients is the control of pain and other symptoms. This can be helpful for those who are undergoing active therapies – such as the chemotherapy patient who may need palliation to be able to withstand the regimen – as well as for those who are no longer benefiting from treatment and can be made more comfortable.
When patients are able to set treatment goals early in the process of a potentially fatal illness, Dr. Wallenstein explains, it can help them to feel empowered. “They might not have much control over whether they’re dying of cancer, but they can have control over their dying process, including the type and amount of treatment they get and their level of comfort,” he says.
Inevitably, family members may be faced with wrenching decisions concerning how aggressively to treat loved ones who are near death and unable to speak for themselves. There, too, the palliative-care team can be a welcome ally for both information and counsel. When patients or families are interested in discussing spiritual issues related to their decisions, UCLA’s chaplaincy service can be brought in to assist. “The hospital is trying to approach patients holistically, which includes not only patients’ bodies but their mind and spirit, and the importance of the spiritual care often becomes even more acute when the physical reality is harsh or limited,” says Rev. Yuko Uesugi, manager/chaplain of the Spiritual Care Department at Santa Monica-UCLA Medical Center and Orthopaedic Hospital. “It is human nature that many of us look for resources that help us to transcend that reality, to find comfort or some sense of hope and meaning in not only relationships with others, but also relationships with a larger reality that often includes the spiritual aspect of our lives.”
For Katerina Hoyo, the palliative-care team at Santa Monica-UCLA Medical Center and Orthopaedic Hospital provided much-needed support during the dark two-week period in September 2008 leading to the death of her mother, Georgia Platana, at age 62 from melanoma. “At first I didn’t know who they were or why they needed to be there,” she recalls. “You’re in denial about it being the end for your family member.” But Hoyo was won over by the compassion of the team members; soon she was having lengthy discussions about her options, including the physiological process that would occur if she decided to take her mother off of the ventilator that was keeping her alive – a path Hoyo ultimately chose. “They were a consistent presence, so caring and willing to spend time with me,” Hoyo says. “That’s a big deal when you’re in the hospital all the time and feeling all alone.”
For many family members experiencing the anguish of a dying loved one, a hospital can indeed feel like a cold, dark and lonely place. One of the goals of UCLA’s palliative-care service is to change that sense. It started with Dr. Ferrell’s notion that when a patient dies in a hospital, the family should, at minimum, receive a condolence card before getting a bill. Last spring, that notion was taken a step further with the establishment of a bereavement program at Santa Monica-UCLA Medical Center and Orthopaedic Hospital. An educational packet was developed for families with an overview of the bereavement process and information about mortuary and counseling services. The palliative-care team began making routine follow-up calls to see how the families were doing and, if requested, make referrals.
“Often after patients have passed, I make calls to see how their significant others are doing and to offer any additional help we can provide,” Meyer, the palliativecare nurse, says. “So many of these people express such gracious appreciation of what we were able to do – that we’ve relieved pain and symptoms, provided emotional support, given them the information they needed to make complex and difficult decisions on behalf of their loved ones.”
Last summer, the first “celebration of life” was held – a memorial service at the hospital for patients who had recently died. Families were invited, but as much as anything the service was for the staff . “Members of our staff tend to become very close to the patients, and this is a way for them to celebrate the lives of these patients and experience some closure,” Dr. Ferrell explains. “It also sends a message that we do care about our patients and about what happens after people leave the hospital.”