For two days every September since 1981, 20 to 25 creative individuals working in virtually any field receive a phone call notifying them that they are recipients of the John D. and Catherine T. MacArthur Foundation Award's totally unrestricted so-called genius grants of $500,000 over five years.
On September 16, Diane E. Meier, MD, Director of the Center to Advance Palliative Care (CAPC), and Director of Mount Sinai School of Medicine's Hertzberg Palliative Care Institute, was seated on a plane about to depart from New York to Seattle, when her cell phone rang at the moment the overhead announcement was blaring that passengers should turn off their phones and other electronic devices in preparation for takeoff.
She noticed that the call was from an unknown number with a Chicago area code, and said she had debated whether or not to answer it before switching it on.
“When I answered, I could barely hear the caller at the other end. I thought I caught the word MacArthur but I wasn't sure, so I said ‘Could you hold on a moment until the overhead announcement stops?,’ and then I went back to the phone and said, ‘Would you please say that again, please?’”
The caller repeated his message, and, following some silence, said “Can you hear me?”
“That was really interesting,” recalled Dr. Meier, “because I was totally speechless after I heard him, and that's why I didn't respond immediately, so I said ‘yes, I can hear you and I'm not usually at a loss for words but I am right now.’ And then the stewardess was not very happy with me and said I'd have to hang up and call back the next day.”
For the next few hours in the air, Dr. Meier said she tried not to scream on the crowded airplane.
“It's a pretty overwhelming event to come to terms with. I think it's going to take a long time to understand what it means and what impact it will have in various aspects of my life. And right now I'm just feeling overwhelmed, grateful, happy, and spending a lot of time talking to friends of mine from grade school, high school, and college who saw the announcement and got in touch with me after not having spoken in decades.”
Dr. Meier spoke to OT the week following the fateful call, the morning after the official embargo was lifted and MacArthur fellows were permitted to talk about the award.
One Week of Silence, 1100 Emails
Daniel J. Socolow, Director of the Fellows Program and the September Santa caller for the past 11 years, said, “This is the hardest part for fellows, since they have one week of silence when they can tell only one person and they go nuts.”
When I spoke with her, Dr. Meier was in Washington, DC, getting ready to testify about hospital palliative care before the Senate's Aging Committee.
She said that she had received some 1100 emails and a lot of phone calls the day before, which was a lot “for a person who works quietly most of the time.”
She said the best thing about the MacArthur Award was the recognition of the field of palliative care, and its importance and the need to make it an integral part of the US health care system.
“This award has a very powerful legitimizing force and is one that in reality goes to everyone working in the field of palliative care in the country. It's recognition not of my work alone but with hundreds of thousands of other people in many different disciplines and capacities working to improve access to quality care for the seriously ill in the United States.”
Only Recently Approved as Formal Subspecialty & Post-Grad Training Program
“I know that many of my colleagues and friends in this field have said ‘I feel like I've gotten this award.’ It's great recognition for those people who've been working in what has heretofore been a fairly marginalized, underfunded, and unrecognized field, and has only recently been approved as a formal subspecialty of the American Board of Medical Specialties and only recently become approved as a post-graduate training program by the Academic Council for Graduate Medical Education.
“I think many of us have been struggling for a toehold and a place at the big table in organized medicine, and this award plucks us from our obscurity, and puts us front and center as a key part of the solution to the American health care crisis.”
Mr. Socolow laughed when told about Dr. Meier's excitement that the award might help move the field of palliative care ahead and that she felt as if it belonged to the many who have pursued the same mission. “That's a bit of a stretch from our perspective,” he said, “but we're delighted when it happens from time to time. We're focusing on the individuals, and they can take it [the honor and recognition] and play it any way they want.
‘Creative Spark and Incredible Energy and Commitment’
“This isn't about the field; although that's wonderful. But we're giving it to her because of who she is and what we see as that creative spark and incredible energy and commitment that is essentially MacArthur. We saw her power and the importance of the work, and we don't want to say this is for the field. I'm delighted if they use it, but in spite of what she says, the award is really for Diane because in our estimation she is an extraordinary person.”
She is now one of 756 extraordinary people who have received grants, and this year she is one of four physicians, a record number for a single year according to Mr. Socolow, who said that following his one call there is no more contact with the recipients who receive the MacArthur funds over five years, and that there is no oversight or strings attached.
He added that the Foundation does spend about three months making sure it will know exactly where each fellow will be when they're called, and that he has never missed making a connection.
This year's fellows also included biological researchers, physicists, musicians, an engineer, a stage lighting designer, an anthropologist, a geomorphologist, a sculptor, an urban farmer, an astronomer, a writer, and an artist.
Mr. Socolow said that the Foundation works very hard not to give a sense of group identity, noting that there is no awards ceremony, and that although in past years there used to be reunions of fellows, they weren't encouraged because “I saw it as the beginning of recipients beginning to identify as an elite and that's not what we're trying to do.”
Word ‘Genius’ Far Too Limiting a Description
As for the descriptor “Genius Award,” he said, “We don't use ‘genius,’ because I find ‘genius’ far too limiting in describing the people we choose. There is so much more involved, and Diane's a perfect example of someone with commitment and drive and passion and all that separates them out as enormously bright and creative people.”
Dr. Meier joined Mount Sinai's Department of Geriatric Medicine as a faculty member in 1983 as soon as she had finished her geriatrics fellowship at Oregon Health Sciences University. She received her MD from Northwestern University Medical School, and her BA from Oberlin College.
The freestanding department had just been created as the first of its kind in a US medical school, and was chaired by Robert N. Butler, MD, who had previously served as the founding director of the National Institute on Aging and received a Pulitzer Prize for his book Why Survive? Being Old in America (2002, Johns Hopkins University Press).
The young geriatrician was teaching and working as a physician in a large tertiary care hospital where she said she saw “a tremendous amount of unaddressed suffering, not only by patients, but very much by their families. And the more time I spent in the culture of the acute care hospital, the more sense I had that there was a rising divergence between the originating impulse of the medical profession—to heal and comfort—and what was actually becoming of us as professionals.”
Medicine, she said, seemed to be becoming part of a vast business in many ways, designed to see as many patients as possible in as short a time as possible and to move them through their imaging studies, their consultations, infusion therapies, and out so the next patient could come through.
She said she entered the field of gerontology because she was rebellious and wasn't comfortable with a subspecialty that focused on only one organ.
“I'm a ‘lumper’ not a splitter by nature and look at the big picture rather than microscopically. So geriatrics was really the only option that explicitly attempted to deliver whole-person, comprehensive care, including the family.
“And so coming at that time when geriatrics was very marginalized and fringe and when trying to establish a geriatrics department in a traditional medical center that didn't understand what geriatrics was or why it was necessary turned out to be very good practice for what I ultimately ended up doing [in palliative care].”
‘As Much for the Relief and Distress of the Oncologist as for Patients and Family’
Dr. Meier said she sees a very strong collaboration and affiliation between oncology professionals and palliative medicine professionals, with both groups very committed to the well-being of their patients and to maximizing not only the quantity but also the quality of their lives.
Yet she says that oncologists do not always take advantage of calling upon palliative care specialists, and thinks that in some cases there might be a fear of undermining control of the patient's care.
“Four or five years ago we rarely had consults from oncologists at Mount Sinai, and now a good 60% of our patients belong to oncologists, and we work very closely with them.
“It's not just the patients with cancer and their families who suffer, but it's also their providers, and we spend a great deal of time acknowledging to our colleagues, and especially oncologists, how difficult it is to watch and see what happens to a lot of these patients, and we hear often from oncologists because they are so struck and distressed by the level of suffering they are witnessing in their patients.
“We see our intervention as much for the relief and distress of the oncologist as it is for the patients and family.”
She said that part of the fault lies with not having effectively communicated with other medical specialists that the palliative care team serves in a consultant's capacity.
“Oncologists call infectious disease doctors every day without fear that the infectious disease doctor will overstep his or her bounds, and palliative care needs to learn from that model.
“It's really important that our message be that we are consultants and are here to work along side you, to provide the best possible care for your patients. You, the oncologist or practicing physician, are our client.”
Not Sustainable as Fee-for-Service Model
She also pointed out that at this time palliative care is not sustainable as a fee-for-service model, and billing doesn't even begin to cover the cost of salaries for a team. “It's kind of a miracle we've come this far with the growth of the field with such a fragile business model.”
Dr. Meier said that much more attention needs to be paid to improving and standardizing the quality of palliative care programs, and that although these programs are being implemented at a rapid pace in US hospitals, there are still large geographic differences in access.
The Center to Advance Palliative Care earlier this month issued its 2008 state-by-state “Report Card” (based on 2006 data) (see box), which Dr. Meier said “will try to shame those hospitals in those states where patients and families still don't have equitable access.”
Palliative Care Defined
Dr. Diane Meier defines palliative care as medical care focused on the relief of suffering and on support for the best possible quality of life for patients with serious illness and their families, and said it should be delivered at the same time as curative and life-prolonging care.
She added that palliative care is not limited to patients with a predictably short prognosis, and that hospice care represents only a small subset and is a specific form and model of palliative care that is targeted at the terminally ill.
A baby boomer herself, she acknowledged that many physicians in her generation were trained when there was no such thing as palliative care and that they continue to practice as they did 20 years ago, while younger physicians are more comfortable using palliative care.
“The vast majority of patients today are living with serious chronic illnesses such as cancer, heart failure, emphysema, kidney failure, liver failure, dementia, and stroke. They live for years with illnesses that modern medicine has not eliminated but has enabled them to live much longer with, and what palliative care is about is making those additional years worth having.”
‘Optimal Medical Care Regardless of How Long Patients Live’
She said it was important to uncouple palliative care from death and dying, and that palliative care is optimal medical care regardless of how long patients live.
“It's important for patients to understand that palliative care does not mean that your doctor thinks you're dying, it means your doctor thinks we can help you live longer, and quality of life is a concept that patients and their families understand.”
However, for the most part patients and their families will not access the skills and expertise of palliative care teams unless their physician makes the referral, and that's why Dr. Meier thinks outreach to physicians is so critical since they are the ones who can open the door to these resources.
Palliative Care ‘Report Card’ Finds Deficiencies Across US
A new study from the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC) has found that the United States is doing a mediocre job of caring for the most seriously ill and vulnerable hospitalized patients. The report, published in the October issue of the Journal of Palliative Medicine, notes that although palliative care programs are being put into place at a rapid pace, wide geographic variation remains a barrier to care.
Dr. Meier is a coauthor of the report, along with Jessica Dietrich, MPH, and lead author and NPCRC Director Sean Morrison, MD.
The lowest prevalence of hospital palliative care programs were found to be in Mississippi (10%), Alabama (16%), Oklahoma (19%), Nevada (23%), and Wyoming (25%), and the highest prevalence in Vermont (100%), Montana (88%), New Hampshire (85%), Washington, DC (80%), and South Dakota (78%).
Access to palliative care in small hospitals (defined as having no more than 300 beds) ranged from 0% in Louisiana, Maryland, Nevada, and New Mexico to 78% in Vermont, with a national average of 20%. Access in large hospitals (more than 300 beds) ranged from 0% in Nevada to 100% in 20 states, with a national average of 75%.
Considerable variation was found from state to state: The states rated as receiving A grades (with programs in 81% to 100% of hospitals) were Vermont (100%), Montana (88%), and New Hampshire (85%).
Those receiving B grades (palliative care programs in 61% to 80% of hospitals) were Washington, DC (80%); South Dakota (78%); Minnesota (75%); Missouri (73%); New Jersey (72%); Oregon (72%); Iowa (70%); Maine (69%); Michigan (69%); North Carolina (69%); Ohio (68%); Colorado (67%); Maryland (67%); West Virginia (67%); North Dakota (67%); Washington (65%); Wisconsin (64%); Virginia (63%); and Kansas (61%).
Those with C grades (palliative programs in 41% to 60% of hospitals) were Alaska (60%); Delaware (60%); Rhode Island (60%); Illinois (58%); New York (58%); California (56%); Idaho (56%); Nebraska (56%); Utah (56%); Connecticut (54%); Indiana (54%); Pennsylvania (54%); Arizona (50%); Massachusetts (50%); Florida (49%); Hawaii (45%); Tennessee (45%); and Arkansas (41%).
States receiving D grades and deemed as needing significant improvement, with palliative care programs in only 21% to 40% of hospitals, were Georgia (38%); Kentucky (37%); New Mexico (33%); Texas (33%); South Carolina (30%); Louisiana (27%); Wyoming (25%); and Nevada (23%).
Failing grades were given to three states: Oklahoma (programs in only 19% of hospitals), Alabama (16%), and Mississippi (10%).
Only three states did not improve at all since a similar report card in 2002: Oklahoma, Alabama, and Mississippi.
Lack of Qualified Board-Certified Palliative Medicine Physicians
A fundamental problem is the lack of qualified board-certified physicians in palliative medicine, the report noted. In 2007, there were 2,883 physicians board-certified in palliative medicine (1 physician per 31,000 persons living with serious and life-threatening illness, or 1 physician per 432 Medicare deaths from chronic illness). In comparison, there are 16,800 cardiologists (1 per 71 heart attack victims) and 10,000 oncologists (1 per 145 patients newly diagnosed with cancer).
The highest rates of board-certified palliative medicine physicians are in Hawaii, the District of Columbia, Alaska, New Mexico, and Colorado; and the lowest rates are in Mississippi, Arkansas, Nebraska, Idaho, and South Dakota.
The report also found that in states where there is greater access to palliative care programs, patients are less likely to die in the hospital, to have fewer ICU/CCU admissions in the last six months of life, and to spend less time in an ICU/CCU in the last six months of life.
The report concludes with recommendations for the public, policymakers, and the health care community. For example, hospital administrators and clinicians are urged to:
- Implement a palliative care program in their hospital that meets the quality standards of the National Quality Forum.
- Proactively provide patients and family members with comprehensive information about palliative care.
- Educate clinical staff in the principles and practices of palliative medicine through CME and CE programs.
Administrators and clinicians in medical schools are urged to include education in pain and symptom management; communication training (e.g., “breaking bad news,” establishing goals of care, deciding on treatments); and working in an interdisciplinary team in the first and second years of medical school, as well as to include mandatory clinical rotations in palliative medicine in the third and fourth years of undergraduate training for all medical students.
Administrators and clinicians in teaching hospitals are urged to increase opportunities for medical residents to train on hospital palliative care teams and outpatient hospice programs; and increase the number of postgraduate fellowship training programs in palliative care.
Recommendations for elected officials and policymakers are to:
- Fund palliative care team training and technical assistance for all hospitals.
- Include palliative care indicators in each state's quality programs for state health plans and Medicaid programs.
- Ensure the development of palliative care programs in public and sole community provider hospitals.
- Promote and pass legislation requiring all hospitals to offer palliative care services as a condition of Medicare and Medicaid reimbursement.
- Promote and pass legislation requiring all state-supported medical schools to have affiliations with hospital palliative care programs.
- Create loan-forgiveness programs for nurses and physicians seeking postgraduate palliative care training.
- Create a statewide resource center for promotion of access to quality palliative care services, such as the New York Palliative Care Training Act–Public Health Law Article 28.
- Support congressional initiatives that increase NIH and Veteran's Health Administration funding for palliative care research.
- Promote and pass legislation that requires that physicians take CME courses on pain management and care of the terminally ill.
The full report and links to many resources mentioned in the report are available at www.capc.org.
Hertzberg Institute & CAPC
Mount Sinai's Hertzberg Institute was founded 11 years ago and provides the palliative care clinical, teaching, and research efforts within the academic medical center.
The Center to Advance Palliative Care is a national technical assistance organization that helps palliative care leaders around the country establish high-quality accessible palliative care programs within their own institutions.
It was originally the national program office of the Robert Wood Johnson Foundation and is now funded through a consortium of several additional international foundations.