ARTICLE IN BRIEF
A new study finds that despite the overall growth of palliative care programs, there are increased proxy reports of pain and depression at the end of life. Neurologists discuss the challenges and opportunities for neurology to develop better end-of-life care programs.
By the end of this year, if current trends continue, eight out of every 10 US hospitals with 50 or more beds will have a palliative care program, according to a report released last fall by the Center to Advance Palliative Care. In 2000, less than one-quarter of these hospitals (658) had a palliative care program, compared with more than two-thirds (1,734) in 2012. And the Accreditation Council for Graduate Medical Education now lists more than 100 certified fellowships in palliative care.
But despite the rapid growth of palliative medicine in the US, a study published in February in the Annals of Internal Medicine reveals a troubling trend: Between 1998 and 2010 — the same period when hospital-based palliative care programs and palliative medicine fellowships were springing up at increasing rates — the number of proxy reports of pain, depression, and other distressing end-of-life symptoms were also increasing.
The cohort study, led by Karl Lorenz, MD, a professor at the Pardee RAND Graduate School and an associate professor of medicine at the David Geffen School of Medicine of the University of California, Los Angeles (UCLA), used data on more than 7,200 participants in the Health and Retirement Study, a longitudinal study that surveys a representative sample of approximately 20,000 Americans over the age of 50 every two years. It found that although the number of Americans in hospice care doubled between 2000 and 2009, most end-of-life symptoms increased, or tended toward increases in prevalence, during the 1998-2010 time period. [For more data from that study, see “End-of-Life Care: By the Numbers.”]
HOW DOES NEUROLOGY FARE?
While certain populations — including those with cancer and those with congestive heart failure or chronic lung disease — were broken down into subgroups for the study's analysis, patients with neurologic disease were not specifically included, so it is difficult to say precisely what this study means for neurology and palliative care, said Alan C. Carver, MD, a neurologist and palliative care expert at Memorial Sloan Kettering Cancer in New York and the recently elected chair of the AAN Section on Pain and Palliative Care. In 1999, he and his colleagues published a national survey about end-of-life care in neurology for the AAN.
“The results of that study were alarming,” he said. “One was the conclusion among the investigators that at the end of your life you might not want to be cared for by a neurologist! We learned that there were many in our field who were unaware of the established medical, legal, and ethical palliative care guidelines and who hadn't been exposed in their training to what we would consider state of the art palliative and end-of-life care. As a result, patients would get near the end of their lives and, as good as their neurologists may have been in managing their Parkinson's disease or their ALS, suddenly there was this gap between what the neurologist was able to offer and what the patient needed.”
There are also some key clinical and societal barriers to improving palliative care at the end of life, Dr. Carver added. First, he said, is the problem of the “culture of cure.”
“People come to a place like Sloan-Kettering to be cured. And we can be so focused on fighting the disease that we forget that we're treating a person who has this disease. Doctors can become so enthusiastic about what we're learning that we forget there's someone sitting there suffering while we're expanding the field.”
Moreover, regulatory requirements are limiting end-of-life pain control, said Dr. Carver. “Because of concerns about substance abuse, it's become more and more difficult for physicians to prescribe opioid medications for patients who need them,” he said. “Substance abuse is a clear problem, but so is under-treatment of patients' pain and other symptoms, especially at the end of life.”
The 1999 survey has not been replicated in recent years, but Dr. Carver said that he believes that palliative care in neurology has significantly improved since then.
“Pain control is now on the agenda of residency programs in neurology,” he said. “And within the last decade, the Accreditation Council for Graduate Medical Education has added an accreditation standard that residents in neurology must at least be exposed to areas of pain and palliative medicine. Many more students that I talk to have taken a palliative care rotation and are exposed to a variety of issues. I'm optimistic about the long term, but it's going to take a long time.”
Recent publications in the neurologic literature have called for new approaches to making up that lost ground. In March 2014, an American Heart Association scientific statement published in the journal Stroke urged customized, coordinated palliative care for stroke patients.
“The majority of stroke patients need access to some form of palliative medicine,” said Neurology Today Associate Editor Robert G. Holloway Jr., MD, MPH, FAAN, a professor and chairman of neurology at the University of Rochester Medical Center in New York and the lead author of the statement. “Stroke is a devastating disease that has received little attention in the area of palliative care so far.”
A PARADIGM SHIFT UNDERWAY
In the Aug. 5, 2014, edition of Neurology, several leading experts called for a “paradigm shift” in neuro-palliative care. The palliative care needs of patients with chronic, progressive neurologic diseases as they near the end of life, the authors argued, can be as great or greater than patients with advanced cancer — for whom palliative care has been much more effectively integrated into their care.
With more neurologists receiving training in palliative medicine, that paradigm shift may be underway, said Maisha T. Robinson, MD, a neurologist and palliative medicine physician who is currently a Robert Wood Johnson Clinical Scholar at UCLA. “I think we're really on the cusp of seeing a lot more programs that focus on the palliative needs of neurologic patients.”
In August, Dr. Robinson will move to the Mayo Clinic in Jacksonville, FL, to build its neuro-palliative care program.
“Our vision is that it will not only provide improved symptom control and pain management for patients with chronic neurologic disease across the board, but also address essential issues like spiritual care, caregiver needs, and early enrollment in hospice,” she said.
Dr. Robinson, who has been researching model programs for end-of-life care in neurology, cited programs at two academic medical centers: One at the University of Alberta, where Janis Miyasaki, MD, FAAN, an associate professor of neurology, has integrated palliative medicine into the Parkinson's clinic (hers was the first palliative care program in Parkinson's and related disorders); and the other at the University of Colorado, where movement disorders specialist Benzi Kluger, MD, has started a palliative care clinic that is open to any patient with a neurologic diagnosis. Dr. Miyasaki and Dr. Kluger were co-authors of the “paradigm shift” article that appeared in Neurology in 2014.
Dr. Kluger, who based his program on Dr. Miyasaki's, leads a four-person team that includes a nurse, a social worker, and a chaplain. “For diseases like Parkinson's, we have a lot to offer in terms of treating tremor and other disease symptoms early on — medications, deep brain stimulation surgery, and so on,” he said. “But as things progress, patients have more problems with non-motor symptoms like dementia, hallucinations, psychosis, and general disability. They often come to me when they reach a point where their neurologist says there's nothing more to offer. And in the traditional chronic care model, that's true. But we focus intently on the non-motor symptoms: depression, anxiety, grief. We help with planning for the future and setting goals of care. And we provide support for the caregiver so they don't get burnt out.”
So far, this approach seems to be working. In the first two years of the program, Dr. Kluger said, all of the patients who have died have done so either at home in hospice care, or in a nursing home if they started there. “Some 50 to 60 percent of people with Parkinson's die in the hospital, a much higher percentage than age-matched controls,” he said. “We've been able to prevent that horrible revolving door so many Parkinson's patients fall into, of going in and out of the hospital during their last months of life and then dying in the hospital.”
Dr. Kluger is now working on studies that demonstrate that palliative care for people with chronic neurodegenerative diseases should start from the time of diagnosis. “If you look at palliative care as trying to relieve suffering rather than just providing end-of-life care, it's clear that these needs start from the moment a patient is diagnosed. There are concerns about the future, grief, so many educational needs,” he said. “And over the course of the illness, the emphasis on palliative care versus disease-modifying therapies and more traditional neurologic needs can shift.”
Since the publication of the “paradigm shift” article, Dr. Kluger said that he and Dr. Miyasaki have been contacted by multiple academic neurologists who have completed palliative care fellowships and are now seeking guidance in launching neuro-palliative care programs.
“There's a program in San Francisco, a new one in Portland, and several in development, including in Pennsylvania and at the Medical University of South Carolina,” he said. “I would expect that most academic neurology programs will have a palliative care clinic within the next 10 years.”
Both his and Dr. Miyasaki's programs are primarily focused on movement disorders, and some of the new programs are disease-specific as well. But Dr. Kluger predicts that as neuro-palliative care evolves, it will have a broader focus. “A lot of neurologic diseases, as they advance, start to look the same, and caregivers run into the same problems.”
In September, Dr. Miyasaki and Wendy Johnston, MD, a professor of neurology at the University of Alberta who directs the ALS clinic there, plan to launch a Complex Neurologic Symptoms Clinic at the university. It will include a palliative care physician, neurologists, a nurse, a speech language pathologist, a respiratory therapist, and social work support, and will be the first clinic in Canada to offer this interdisciplinary approach.
“I'm personally seeking to find commonalities,” said Dr. Johnston. “When you have a patient with neurologic disease nearing the end of life, their symptom burden can actually be described and we can come up with tools to assess and treat regardless of the underlying disease.”
The palliative care models for other types of chronic and ultimately fatal disease states may be similar to neurologic disease, but they aren't the same, she added. “We need to have an assessment tool that homes in on the symptoms that are perhaps overlapping, but not totally congruous, with the current models from the cancer field,” Dr. Johnston said. “Anorexia and frequent vomiting, for example, are very much cancer symptoms, but are at a much lower prevalence in our population.”
She and Dr. Miyasaki are also working on developing a tool to help assess the symptoms that are most important to neurologic patients. “The need for palliative care in neurodegenerative disease may appear years before a person's actual death, much sooner than with cancer. We want to be able to identify people who are no longer slowly progressing, but are hitting a stage of higher disease and symptom burden that would demand a palliative approach. If we start intervening early, we hope to have a higher impact on these myriad predominant symptoms.”
END-OF-LIFE CARE: BY THE NUMBERS
The data on more than 7,200 participants in the Health and Retirement Study, reported in the February issue of the Annals of Internal Medicine, found that most end-of-life symptoms increased, or tended toward increases in prevalence, during the 1998-2010 time period.
- Pain affected 54 percent of participants in 1998 and 61 percent in 2010 (a 12 percent increase).
- Depression affected 45 percent in 1998 and 57 percent in 2010 (a 27 percent increase).
- Periodic confusion affected 41 percent in 1998 and 54 percent in 2010 (a 31 percent increase).
- Most other symptoms, including dyspnea, incontinence, anorexia, severe fatigue, and frequent vomiting also increased, although these increases did not reach statistical significance.
- Trends in symptom prevalence among people with cancer, however, appear to have stabilized.