He was young — still in his 40s — and facing a devastating diagnosis: congestive heart failure that would end his life too soon. Readily admitting that his own lifestyle decisions had brought him to this place, Mr. D (his name has been changed to protect his privacy) suffered from what could only be described as transcendental angst.
“He had a lot of regret, wishing he had made other choices,” says Julia Allen-Berger, DMin, BCC, the chaplain on the Palliative Care Service team at Barnes-Jewish Hospital. Allen-Berger says that listening to and understanding remorse and fear is part of the job. In fact, the team’s mission is to improve quality of life for people facing life-threatening illness by treating the whole person. Care is initiated upon referral from a primary care physician or specialist.
Adding to Mr. D’s distress was his estrangement from his family. “He had behaved toward them in ways that had broken all the ties, and he made a kind of confession,” says Allen-Berger, who notes that she is the “spiritual-care specialist” on the team, though she qualifies that description. “In a way, everyone on the team is a spiritual generalist,” she says, “because we all listen for signs of spiritual distressand share that information with each other.” This kind of overlap of responsibilities is integral to the effectiveness of the interdisciplinary team.
The Palliative Care Service treats suffering of all kinds, including the physical distress of a serious illness, and the emotional and spiritual pain that can haunt those who are facing end-of-life issues. “It’s never just about the illness itself,” says Christa Burke, MSW, LCSW, one of the two social workers on the team that includes nurse practitioners, chaplains and internists. “It’s also about the impact on family, on the job and colleagues, on everything.”
And it’s about the stark realization that the future now has to be rewritten. The palliative care team helps people navigate this new reality. And their work begins with a very human thing — listening.
Caring for the whole person
“Often what patients and their families want most at the beginning is a listening ear,” says Jonathan Hanson, MSN, ANP-BC, ACHPN, RN, a nurse practitioner on the team who, along with the internists, is frequently the first contact with a patient. “They want someone to sit down and listen to their concerns, to explain what’s going on and discuss the positives and negatives of medical interventions.”
Essentially, palliative care serves as a bridge between patients and their primary-care physicians, adds internal medicine specialist Michael Koller, MD. “Their doctors may not have the time to listen closely and offer detailed explanations, so we are there to interpret and fill in the holes so that patients fully understand their conditions.”
A referring physician often asks the palliative care team to help patients talk through their care plan and any possible choices they may have related to medical treatment.
“Most of the people we see are pretty far into the course of a disease and are close to the end of their lives,” says Maria Dans, MD, an internal medicine specialist and the leader of the palliative care team. At that point, Dans notes, it’s a bit late to start advance-care planning, which is the process of identifying what sort of medical care someone wants to receive if he or she becomes unable to communicate. “We’d like people to do this earlier, in a way that truly reflects their wishes,” she notes. If patients don’t have an advance directive — a legal document that specifies the kinds of interventions they do and don’t want — the palliative care team will help them and their families discuss treatment options and lifestyle choices, mapping a course that makes sense, Burke adds. (See the sidebar below to learn more.)
But first, team members have to manage patients’ often severe symptoms, which is one of the primary reasons the palliative care team is consulted, she adds. In addition to arranging for pharmaceutical intervention, Burke and her colleagues can recommend relaxation and other techniques to help patients control their pain.
Palliative care practitioners like Dans and others on the team are passionate about the benefits of their approach to serious illness, viewing it not only as a help to patients and their families, but also seeing it as “just better care,” as Dans puts it. “Ideally, offering better coordination of care, giving patients and families a better understanding of their options and improving symptom management will affect quality and length of life.”
Dans cites a seminal study published in The New England Journal of Medicine in 2010 that found that early palliative care for patients with metastatic non-small-cell lung cancer — the leading cause of death from cancer worldwide — resulted in “significant improvements in quality of life and mood.” Moreover, palliative care increased patients’ use of advance-care planning and yielded less invasive end-of-life care, allowing them to die at home if desired. “But what surprised the researchers was that patients receiving palliative care actually ended up living longer,” Dans says.
Palliative care vs. hospice
Sometimes, however, patients and physicians resist palliative care, largely because of common misconceptions. Palliative care is often equated with hospice, which is intended for patients who have no more than six months to live. The emphasis in hospice is on comfort and not on medical interventions, while palliative care often works concurrently with disease-directed treatment, Dans explains.
Physicians and patients alike may also fear that a palliative-care referral is a sign that there is no hope. “That’s not necessarily true,” Koller explains. “I think physicians sometimes fear that we will push patients into hospice, which we won’t do.” Instead, the team’s goal is to empower patients to choose what they want and to support them in their decisions.
It is also true that some people with serious illnesses believe that science and technology will find a way to save them. “This can be particularly true at an academic medical center, where patients hope a cure may be available that has eluded them elsewhere,” Dans says. “The reality is that while we may not be able to make the illness go away, we may be able to help a patient live with it.”
It is a classic case of good news/bad news, says V.J. Periyakoil, MD, director of the Stanford Palliative Care Education & Training Program at Stanford University, where she served as a mentor to Dans. Significant advances in medicine have allowed people with serious illnesses to survive longer, says Periyakoil, “but we have traded one hardship for another. We have procedures that may prolong the dying process while creating suffering and financial hardships for patients and their families at the same time.”
Palliative care is often described as a new approach to patient care, having been approved in 2006 as a subspecialty by the American Board of Medical Specialties. “But it’s actually a very old idea,” says Periyakoil, who describes it as a kind of old-style medicine that was practiced before the 20th century advent of antibiotics, cardiac resuscitation and other lifesaving procedures. “It’s the very heart of medicine,” she adds. “With all our new technological advances, I think at times we forget what it means to be a healer.” The introduction of hospice care by British physician Cicely Saunders in the 1960s fostered what Periyakoil describes as a cultural shift for medicine, with an emphasis on palliative care and a more patient-centered approach.
People are going to get sick, Dans says. “And they are still going to die. The death rate for our species is 100 percent,” she notes wryly. “The question is, how do we want to live up to that point?”
Dignity, meaning and compassion
For his part, Mr. D. simply wanted his family to forgive him and allow him to come home for his last days. “He knew he was facing possible rejection,” Allen-Berger says, “but I think he had decided to go for broke. It was important to him, and it was worth a try.”
Social workers and a chaplain helped Mr. D. figure out how to talk with his family. “He practiced the conversation with us, but he did all the work himself,” Allen-Berger says. “Ultimately, most people just want to know that their lives matter, and that they won’t suffer too much or be a burden to their families.”
The team encourages people receiving palliative care to review their life histories and remember the major events, accomplishments and themes that give meaning to their lives. The goal is to restore the dignity that can be lost during a devastating illness. As a result, family members often learn powerful things they didn’t know about their loved ones.
This life review helps patients “look back and tell their stories, revisit the meaningful times, and think about their legacies,” says Burke, while acknowledging that not every patient and every family can do that. Each patient has his or her own take on what personal assessment needs to be done, she notes, and it’s important in palliative care to be agile and responsive.
In the end, Mr. D’s family forgave him. Burke and her colleagues collaborated with a case manager and social worker in the nursing unit to help him get home. It was not an easy task. Mr. D was connected to a continuous-infusion pump that delivered a controlled dose of medication to manage his symptoms. But the team helped arrange his five-hour flight from Missouri to the West Coast, engaging a national infusion company to ensure there would be no disruption in his medication. A member of Mr. D’s family flew with him.
This kind of collaboration is a hallmark of the palliative-care approach, Burke adds. Team members make sure that everyone caring for a patient is communicating to make problem-solving possible.
While the palliative care team sometimes provides bereavement counseling for families after a loved one has died, team members often don’t find out how a story ends. Many on the team say this is one of the hardest things about what they do. But the team did receive a note from Mr. D, who wanted to tell them he had made it home safely. And to say thank you.