I’ve said it before and I’ll say it again: A child of mine will play tackle football over my dead body. A young brain is too precious a thing to risk. And though the data are not all in, we know plenty about the potential brain damage of repeated head hits, including recent findings that linked youth football to cognitive impairment. Oh, and let’s not forget the 2013 study that found that a single season of contact-sports head blows could affect learning and memory.
So I was surprised to learn from an excellent commentary this morning by WBUR’s Bill Littlefield of Only a Game fame that a prominent Boston medical leader was touting football’s safety. From the Boston Globe here:
Dr. Elizabeth G. Nabel, the president of Brigham and Women’s Hospital and the National Football League’s new adviser, said Tuesday that football is safer than it has ever been, but she called on the NFL to commit more money to medical research and better educate the public about sports injuries.
Nabel, 63, in her first public comments as the NFL’s chief health and medical adviser, said that if her children were still young, she would allow them to play football. She noted that her son, now 29, played football in the eighth grade.
“I think football is getting safer all the time,” Nabel told reporters at the NFL’s offices in New York.
Really, Dr. Nabel? You’ll understand if I want to seek a second opinion — maybe from a former NFL player who can’t remember his own kids’ names.
Bill Littlefield’s commentary – As Concussion Crisis Mounts, NFL Turns To … Cardiology Specialist? — points out that Dr. Nabel’s impressive CV does not seem to include any expertise in brain trauma. He writes:
Experience as a hospital administrator would not seem to be the key qualification for a person charged with advising the heads of an industry where the most significant problem is a 30 percent rate of brain damage among the workforce.
She said she felt that “we’re at the beginning of understanding the long-term effects of repetitive head injury,” which means she’s in favor of more study, a strategy long favored by people who didn’t believe that smoking caused cancer.
She further said that she spends about one day per month and some nights and weekends working for the NFL, which is not surprising, because being president of an enormous hospital is a tough job that probably takes up a lot of time.
All of which suggests that the NFL is not so dumb when it comes to choosing a medical adviser.
They avoided a neurologist with experience in brain trauma who might have been able to devote more than one day a month to addressing a problem the league hopes you will ignore.
By Michael J. Misialek, M.D.
Imagine feeling a lump on your body, visiting a doctor, and then waiting seven months (if you’re lucky) to find out whether it is cancer.
This has been the reality for the vast majority of patients in two of the world’s most impoverished nations, Rwanda and Haiti — both emerging from different but unthinkably grim histories of structural violence.
But since 2012, more patients are getting the care that everyone deserves, no matter what country they live in. A medical partnership between several Boston-based hospitals has radically reduced turnaround time for cancer diagnosis, and shrunk the number of people who fall through the cracks.
It is difficult to quantify the exact numbers here, since record keeping in the past has been poor. One data point: In Rwanda, where these interventions are in place, far fewer patients are lost to follow-up after they’ve been treated compared to patients in other poor countries, according to Dr. Larry Shulman, senior vice president for medical affairs at Dana-Farber Cancer Institute, and leader of the medical partnership.
As a pathologist at of one of these partner institutions — Newton-Wellesley Hospital — I can’t help but think about the patient behind the slides under the microscope. Here’s one: Tushime, an 11-year-old Rwandan girl, who had a large tumor protruding from her jaw.
The tissue sample from Tushime’s tumor arrived in Boston in a suitcase carried by an employee of Partners in Health, the global nonprofit. Like all other specimens, hers was processed into a slide by the pathology department of Brigham and Women’s Hospital and read by Harvard faculty.
Tushime’s tumor turned out to be a rhabdomyosarcoma, a common childhood sarcoma. After 48 weeks of chemotherapy and surgery in Rwanda, she is now healthy and free of disease. Doctors there used standard chemotherapy for a cost of about $300 (which was covered by Partners in Health, Dana Farber and the Rwandan government). They relied on age-old, tried and true chemotherapy drugs; in comparison, the newer chemotherapy agents in the U.S. often cost several thousands of dollars.
Even though access to care has improved dramatically in the developing world there is so much work to be done. There are patients who still present with tumors at an advanced stage, many being neglected for months or even years because of barriers to care. There’s often a lack of access to facilities for both diagnosis and treatment, and funding for cancer care is limited. As a result, ordinary diagnoses become extraordinary.
Under my microscope, I’ve seen some of the most aggressive appearing tumors from patients in these countries. What are typically rare cancers here in the U.S., such as sarcomas or unusual variants of breast cancers, are all too common in developing nations.
By far the most common adult cancers seen in Rwanda are breast and cervical. In the U.S, breast cancer is the No. 2 cancer in women (after skin cancer), however many are caught early as a result of effective screening. Invasive cervical cancer is very rare in the U.S., not even ranking among the top 10. Among children, Wilm’s tumor (a kidney tumor, extremely rare in the U.S.) is one of the most common cancers in Rwanda. Some diseases cross boundaries, however: Acute lymphoblastic leukemia is a common cancer both in Rwanda and the U.S.
With limited clinical information, workups in Haiti and Rwanda can be challenging. As a doctor in the U.S., I can, with a few keystrokes, easily uncover valuable information about my patient’s history, lab tests and radiology studies. We are far from perfect here, that’s true, and one could argue that we sometimes go too far in treating disease here. But that’s another story. At least there exists fairly close integration of care for U.S. cancer patients — pathology, surgery, imaging, systemic therapy and palliative care. Once patients are within the doors of the hospital, pathology is almost always the first line of defense. Although this is something we may take for granted in the developed world, a diagnosis equates to treatment and often survival. To paraphrase Dr. Dan Milner, associate professor of pathology at the Brigham: A missing cog in the wheel results in a wheel that doesn’t turn.
It is no mystery why low income countries have a higher incidence of cancer and higher death rate due to cancer: Many of the poorest countries lack an oncology program entirely. According to the World Health Organization only 5 percent of global resources for cancer are spent in the developing world. Limited resources mean limited access to doctors, medicine, followup care and medical record keeping.
With a capacity to perform only basic surgery, understaffed operating rooms and limited radiology equipment, countries such as Haiti and Rwanda face many challenges. Access to diagnostic imaging, radiation therapy and other complex components of treatment are often available only miles away and sometimes across borders. Issues such as safe storage, preparation and administration of drugs present added problems. Electrical problems and spotty Internet service render electronic medical record keeping difficult.
Our partnership has big plans: Central to any long-term collaboration are capacity building and infrastructure expansion. So, in 2012, a fully functioning anatomic pathology laboratory was installed in Rwanda, and two Rwandan technicians were trained at the Dana-Farber Cancer Institute (DFCI) and the Brigham. Technicians now generate glass slides and special stains for diagnosis which are triaged by telepathology and interpreted locally or after transport to Boston.
In Haiti, the team recently broke ground on a pathology laboratory, the start of a improved access to better treatment and care.
I feel privileged to be a part of a movement providing global cancer care so that everyone, despite their income, can have access to cancer medicine and treatment.
As Dr. Larry Shulman, of Dana-Farber, has said: “If you want to have the biggest impact in reducing cancer-related mortality worldwide, you don’t need new scientific discoveries, but rather you need to bring the tools we currently have at our disposal to the many cancer patients who have no access.”
Dr. Michael Misialek is associate chair of pathology at Newton-Wellesley Hospital and assistant clinical professor of pathology at Tufts University School of Medicine. The author thanks Drs. Shulman and Milner for providing content and images, and to Claire Wagner of the Dana-Farber Center for Global Cancer Medicine.
NEW YORK – It is a busy Friday afternoon. Staff members check in guests at the front desk. Other employees lead visitors on tours of the upstairs bedrooms, or field calls from people considering future stays. Aromas of garlic and roasted chicken seep out of the kitchen.
Community Access is not a bed and breakfast, although it feels that way when you walk through its unmarked door off Second Avenue on Manhattan’s Lower East Side. Also known as Parachute NYC, this quiet seven-bedroom facility is one of four publicly funded mental health centers in New York City (located in Manhattan, Brooklyn, Queens and the Bronx) that provide an alternative to hospital stays for people on the verge of a mental health crisis.
Parachute’s respite centers have no medical staff, no medications, no locks or curfews and no mandatory activities. They are secure, welcoming places where people willingly go to escape pressure in their lives and talk to trained “peer professionals” who can relate to what guests are going through because they are recovering from mental illness themselves.
Without places like this, New Yorkers who suffer from serious mental illness would have little choice but to check into a hospital or a hospital-like crisis center when their lives spin out of control. Some people need to be hospitalized for severe psychosis and depression, but many others end up in the hospital because they have no other options.This copyrighted story comes from Stateline, the daily news service of the Pew Charitable Trusts. (Learn more about republishing Stateline content)
Relatively rare in the U.S., respite centers like this one cost a fraction of the price of a hospital stay, and can be far more effective at helping people avoid a psychotic break, severe mood swing or suicidal episode.
Community-based mental health services are particularly vital at a time when the number of beds in state psychiatric hospitals has declined sharply. Nationwide, psychiatric hospitals shed 3,222 beds from 2009 to 2012 amid recession-related budget cuts, and the number has continued to decline even as the economy has improved. According to the U.S. Substance Abuse and Mental Health Services Administration, 55 percent of U.S. counties have no practicing behavioral health workers and 77 percent have reported an unmet need.
Launched in 2013 by the city’s public health department, Parachute NYC includes mobile treatment units and phone counseling in addition to the four brick-and-mortar respite centers. A collaboration of city and state mental health agencies, the project received a three-year $17.6 million innovation grant from the U.S. Department of Health and Human Services. Its financial goal is to save $50 million in hospital expenses.
In addition, New York state’s Medicaid agency plans to use a federal waiver to pay for respite services and other community mental health services for 140,000 state residents under a managed care program for people with behavioral health needs. Separately, New York state’s mental health office has invested $60 million since last year on the creation and expansion of community-based services throughout the state, including child and adult respite programs.
“A hospital is the last place you want to be if your life is unraveling,” said Community Access CEO Steve Coe. “They put you in a room, check your blood pressure and walk away and leave you for hours. You need to put your life back together, not be held in a place where you can’t do anything or talk to anyone,” he said.
Nevertheless, there is broad agreement that nonmedical services such as Community Access are not for everyone.
“The caution is that while this approach is good for some people, others really need medication and structure, so it has to be a good match for the person who is coming into it,” said Sita Diehl, director of state policy at the National Alliance on Mental Illness. “The advantage is that you get an expert listener working with you, really delving into who you are, rather than someone slapping a diagnosis on you and handing you a prescription.”
Parachute NYC provides a non-threatening environment where people who are coming undone can take a break from their turbulent lives and think through their problems before they reach a crisis point. Many who shun hospitals and crisis stabilization units will voluntarily seek help at respite centers.
In fact, Community Access insists that all prospective guests check in on their own, without coercion from a doctor, friend or family member. They also screen applicants to ensure that respite is their best option. Some may need medication and more intensive treatment from medical professionals.
“We’re not against medication,” assistant director Keith Aguiar explained. “If they come in with their own medications and they want to take them, that’s fine. But we do not tell them they have to.”
Many guests have full-time jobs and continue working and seeing friends during their stay. They can come and go any time of day or night. Unlike a hospital, Coe stressed, respite centers allow people to maintain their lives and relationships instead of putting everything on hold. Guests can also continue seeing their regular mental health providers during their stay.
The maximum length of stay at Parachute NYC respite centers is 10 days, soon to be shortened to one week under new Medicaid rules. But guests can return up to three times per year as needed. They also can visit weekly and monthly as “alumni” and take part in group activities and talk to staff.
To qualify for any of Parachute’s respite centers, guests must be New York City residents who are 18 or older. They must also have a clinical evaluation (within the last 48 hours) and a referral from a mental health provider stating they are not an imminent risk to themselves or others and would benefit from respite care. Guests also must have stable housing to go back to.
The Guest List
“We have a wide diversity of guests, from a Columbia University professor and an art critic to people who have been chronically homeless much of their lives,” Aguiar said. “We see men and women of all ages and all walks of life.”
In the last month, the guest list at Community Access included a 28-year-old woman who was living in mental health support housing and believed her roommates were practicing witchcraft on her. She was referred by her housing counselor. Another 24-year-old woman with a diagnosis of schizoaffective disorder needed to escape mounting conflicts at home with her brother, who had a diagnosis of schizophrenia. She was referred by a community psychiatric team.
A 70-year-old jazz musician who suffered from drug and alcohol addiction came to get away from his chaotic living situation. He talked to peers about his struggle with addiction, played his trumpet and napped a lot during his stay. “It was the best sleep I’ve had in years,” he told the center’s director Lauren D’Isselt, who is a psychologist.
Another woman, 25, applied to become a guest without a referral (the center arranged for Parachute’s mobile unit of clinical professionals to provide an assessment.) She’d heard about Community Access from a friend. A native New Yorker who left college because of severe depression, Maggie (not her real name) spoke calmly about her history of mental illness while sitting on a bench on the center’s sunny back courtyard.
“I wanted to finish college,” she said, “but I kept ending up on the tops of buildings.” Diagnosed with depression when she was seven, Maggie has been in psychiatric care most of her life. She spent the better part of the last six months in hospitals.
Now that she’s back in New York temporarily living with her parents, she said she wants to find the right kind of treatment and get on her feet so she can return to school. “Living at home is not very comfortable because my parents are the source of my problem. They abused me when I was a child,” Maggie said. She said she could stay with friends, but they don’t understand what she’s going through.
Five days into her stay, Maggie said it’s been good for her. She’s been able to make plans for future treatment. “It makes a lot of sense,” she said. “At a typical hospital, they take depressed people and lock them up and away from everyone and expect them to get better. Here you can go out and have coffee with a friend and no one has to go through double-locked doors to see you.”
“When I feel really anxious or sad, I can talk to a peer. Places like this are rare,” Maggie said. “But they shouldn’t be.”
A National Need
One in four adults, about 62 million Americans, experiences some form of mental illness during the course of a year. Of those, about 14 million live with a serious mental illness such as schizophrenia, major depression or bipolar disorder, according to data from the National Alliance on Mental Illness. More than half of them do not seek treatment, in many cases because they don’t know where to find help.
For those who do seek treatment, the direct medical costs total more than $100 billion per year, according to estimates from the National Institute of Mental Health. Community mental health services such as respite centers may make it possible to reduce those costs and relieve the demand for psychiatric hospital beds, which are in short supply in most communities.
Parachute NYC has so far served about 700 people at its respite centers, 600 through its mobile treatment teams and more than 20,000 through its peer-operated telephone support service. The city’s health department intends to analyze the program to determine whether it has resulted in a reduction in the city’s 100,000 annual psychiatric emergency room visits.
“We don’t perform miracles here,” D’Isselt said. “But we do help people find joy in their lives.” Most guests forge new friendships and leave with a new life plan, she said. “A lot can happen in a week.”
By Helen M. Farrell, M.D.
I met J in the Emergency Department. Dark red blood was oozing out of self-inflicted deep lacerations to her forearms. The surgical team was consulted and the cuts were debrided, cleaned, stitched and neatly bandaged. J was patched up. But she was not healed. Her wounds ran deeper than a surgeon’s instruments could access.
Together, we had a thoughtful conversation that included a review of her suicidal thoughts, intermittent hallucinations and innermost feelings. These vacillated unpredictably between anger and worthlessness. I informed J that she was going to be admitted to the psychiatric unit for her safety and treatment.
“Locked up?!” These are typical words expressed by patients who learn that they are going to be admitted involuntarily to the psychiatric unit. When J heard this news, her own tear-stained face scrunched up in an expression of horror. After several minutes of pleading, she finally resigned herself to the plan.
A nurse came into the room and took J’s phone. She took her sweater, her belt and the laces from her shoes. J stripped down into a standard hospital gown. It is common for patients to make one last plea and many have told me that they fear the psychiatric unit is analogous to prison.
J is representative of the many patients whom I treat on a day-to-day basis. She is a composite of those actual people who suffer from serious mental illnesses ranging from psychotic and mood disorders to personality disorders that require hospital level care.
Not Your Mother’s Psych Ward
The days of psychiatrists wantonly locking up patients like J against their will are long gone. They have been replaced by a legal process called civil commitment that firmly puts patients’ rights first. Yes, J was being admitted against her will, but she would retain her power to make treatment decisions, summons legal counsel, and even have a hearing with a judge. These safeguards apply to patients like J who are mentally ill and at risk of harm to themselves or others as a direct result of mental illness.
We know about the extreme cases of mental illness — those who involuntarily get locked on a psychiatric unit. An estimated one-quarter of the United States population will suffer from mental illness. But what about those people whom we never hear about? Far too many people, victims of stigma, neglect treatment and suffer in the isolating silence of darkness. They are compelled to withdraw because of fear and shame.
Beyond Shock Therapy
Driving much of that stigma is the fantasy of what happens behind that infamous locked door. Images from “One Flew Over the Cuckoo’s Nest” fill people’s imaginations, as do fantasies of the “shock therapy” room, which many incorrectly think is a place of punishment and not treatment.
Helping patients like J and their families recreate balanced lives provides me with a daily reminder of the beauty, heartache and possibility that define living with a mental illness.
Historically, patients diagnosed with a severe mental illness experienced a poor prognosis marked by early death. Even worse, some faced indefinite commitment to the mental hospital. Whether patients accepted help or chose to forego treatment, the results were equally grim. Those who took heavy-duty medications, for example, often experienced side effects, arguably worse than the disease itself.
Older medications, for example, might have given patients involuntary spasms, thus necessitating other drugs. So began the Whack-A-Mole regimen of living with a mental illness. Psychotropic pills promised to slow the ravaging of the cerebral cortex, but they would wallop the heart and liver, requiring another pill, which put something else at risk — and so on and on.
This was not J’s fate — fortunately attitudes and treatments have changed. For the most part, inpatient admissions are brief, the medications are more targeted and benign, and all of it is complemented by daily therapy — just as important as medicines, if not more.
The Reality of the Locked Ward
So what happens to patients like J who are committed for brief stints on a locked ward?
Multidisciplinary teams of dedicated doctors, nurses, therapists and social workers meet with the patients. We encourage patient-centered care, because this is how people become engaged and follow-through with aftercare plans. As George Bernard Shaw put it, “Life isn’t about finding yourself. Life is about creating yourself.” And this applies to the mentally ill just as much as to everybody else.
On the inpatient psychiatry unit where I work, everyday patients cross our threshold finding themselves behind a locked door. But I am pleased to say that overwhelmingly, these same patients are creating bright futures.
Healing is a process and a good inpatient psychiatry experience can be pivotal to the ongoing work that occurs outside of the hospital. For that reason, we make decisions together as a team about medications, therapy, safety plans and discharge decisions.
The vast majorities of patients, who are admitted against their will, quickly see the benefits of working with their team and end up agreeing to voluntary treatment.
Somewhere amongst the music groups, coping skills lessons, therapy and family meetings, amazing things happen.
There is acceptance, happiness, motivation and assertiveness — and this is all coming from the patients! I have marveled at how individuals with mental illness are able to turn their so-called liabilities (mood swings, anxieties, obsessions) into strengths.
Fear Into Power
J’s hallucinations, for example, had preoccupied her thoughts and actions for months before she cut herself. Maximizing her inner reserves, however, she was eventually able to convert her fear of these voices into power. Gradually, she began to talk back while asserting all of the reasons why she was worthwhile and important. By leveraging her ability to feel passionate emotions like rage, J transformed her symptoms into an important quality that became one of her greatest assets — courage.
Before traversing our locked door, patients like J wondered if the psychiatric unit was going to be similar to a prison. It’s true that belongings are locked up and there are strict rules and regulations about things as ordinary as phone calls, wardrobes, and bedtimes. Hearing the rattling keys of the staff that come and go adds to a bustling environment of busy clinicians that, I admit, could intensify a prison atmosphere. It might also suggest a power differential. But patients like J may feel differently. Rather than being at the mercy of providers, patients often experience empowerment in their care.
We offer a lot on the inpatient unit, but it is up to the patients to avail themselves of their clinicians, therapies, families and opportunities. J did just that.
Patients put in the hard work and fight through their own judgments and despair. Not an easy thing to do, considering that it was a life and death situation that got them onto the unit in the first place. Reconciling the tension between loss of freedom and the desire to break free from the imposed barriers of one’s illness is vital. When all of these things do fall into place, patients can emerge from their darkest days and move forward with more functional lives. Some don’t but many do.
J left the locked unit with renewed energy and hope.
Such developments reflects the resiliency and positivity that can arise from the most vulnerable individuals who, despite adversity, invest in their own health and wellness.
And when this happens, I see the beauty in what transpires from being truly committed.
Dr. Helen M. Farrell is a psychiatrist at Beth Israel Deaconess Medical Center in Boston, a forensic psychiatrist and an instructor at Harvard Medical School.More resources: