March 26, 2007 - Vol 1, Issue 11
Geriatric Mental Health Funding Included In Senate Budget Resolution
As we shared with you last week, the Senate Budget Resolution included an additional $2 million for geriatric mental health services and $200,000 for a mental health training program in nursing homes! Unfortunately, this funding was not included in the Assembly budget.
As we think that there is sufficient time before the final budget gets passed, we urge you to submit another round of letters.
Below are the sample letters to committee leaders in the Assembly and Senate asking them to support the additional funding in the final budget negotiations:
- Assembly Committee on Mental Health - Assemblymember Rivera
- Assembly Committee on Aging - Assemblymember Englebright
- Senate Committee on Aging - Senator Golden
- Senate Committee on Mental Health & Developmental Disabilities - Senator Morahan
As always, thanks for your support!
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GMHA Upcoming Events
April 16, 2007 – Hoarding and Mental Illness hosted by the Geriatric Mental Health Alliance of New York and the Brookdale Center for Healthy Aging and Longevity of Hunter College. Presenters are:
- Carmen Morano, Ph.D., Director of Education, Associate Professor, Hunter College School of Social Work
- Judy Willig, LCSW, Executive Director, Heights and Hill Community Council
The event will be held from 3:00 - 5:00PM at the Hunter College School of Social Work – Auditorium, 129 East 79th Street, NYC, (Between Lexington and Park Avenues). Please make a registration by emailing yhsin@mhaofnyc.org or calling (212) 614-6356. The event is free but pre-registration is required.
For more information, please see the flyer.
May 31, 2007 - Save the Date: 1st Annual Geriatric Mental Health Alliance Conference. Please join fellow Alliance members from around the state for our first annual conference entitled “Geriatric Mental Health: Challenges and Opportunities Across the Horizon” on May 31, 2007 from 09:00-4:00pm at the Hotel Pennsylvania. Steve Bartels, MD, MS, Professor of Psychiatry, Dartmouth Medical School, will be the keynote speaker. Dr. Bartels served as a consultant to the President's New Freedom Commission on Mental Health's Subcommittee on Older Adults, and he is a past president of the American Association for Geriatric Psychiatry. More details to follow.
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Upcoming Events
March 31, 2007 - The Share the Care Group Caregiving Model. This full day training being sponsored by ShareTheCaregiving and St. Vincent’s Hospital will teach health care professionals and clergy The Share the Care model to help family caregivers. The event is from 8:30am-4:30pm at St. Vincent’s Hospital. Please see the overview, flyer, and/or agenda for more information.
April 11, 2007 – Taking a Closer Look: Reflections on Living with Early Stage Memory Loss - The Alzheimer’s Association – New York City Chapter is hosting a symposium for people with early stage Alzheimer’s disease and other dementias, family members and professionals from 9:00am-3:30pm at The Roosevelt Hotel, 45 East 45th Street, New York, NY. Please see the brochure for more information.
April 13, 2007 – Health Promotion and Culturally Appropriate Clinical Care sponsored by The Consortium of New York Geriatric Education Centers. The event focuses on focuses on clinical care of elders and their families in the context of cultural and gender diversity. For more information, please view the flyer. Michael Friedman, Alliance Chairman, is the keynote speaker.
April 19, 2007 – Optimizing Medicare Opportunities: Increasing Mental Health Services for Seniors sponsored by The Westchester Co Geriatric Mental Health and the presenter is Derek Jansen, Ph.D., MPH, Practice Management Alternatives, LLC. The program will be from 8:30am until 12pm at St. Vincent’s Hospital, 275 North Street, Harrison, NY. Please see the flyer for more information.
April 19, 2007 – The Aging Brain St. Vincent’s Hospital Westchester is sponsoring a half day workshop on the physical and emotional changes that take place in ours brains as we age and a discussion of helpful resources. The event is from 1-4pm at St. Vincent’s Hospital, 275 North Street, Harrison NY. For more information, please see the flyer.
April 27, 2007 – OPEN HOUSE: NYSPA Division on Addictions will be holding an Open House from 6-9 PM at the Torch Club in Manhattan. It is open to all psychologists involved in the field of addictive disorders. The event is designed to allow the AddicDiv to keep psychologists informed about current issues connected to addiction in New York State and to hear feedback from the field about how the Division can best serve the needs of psychologists working in the field of addiction. Please see the Save the Date flyer.
May 8, 2007 - Senior Citizens’ Day 2007 Public event celebrating the many individuals from across the state who have volunteered in their communities to improve the lives of others. The event will be held from 1:00 – 3:00 in the Empire State Plaza, Meeting Room 6, Albany, NY.
June 19th and 20th - Save the Date: The 11th Annual “Aging Concerns Unite Us” Conference at the Albany Crowne Plaza, State and Lodge Street, Albany, NY. For more information, please email gabe@nysaaaa.org or visit the NYSAAAA website.
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NYC Council Hearing on Mental Hygiene Budget
On Thursday, March 22nd, the NYC Council Committee on Mental Hygiene held a hearing on the Preliminary Mental Hygiene Budget. The Geriatric Mental Health Alliance along with the Coalition of Behavioral Health Agencies, United Neighborhood Houses, UJA Federation, JBFCS, CAPE, SPOP, and others presented testimony on restoring and expanding the City’ Council’s Geriatric Mental Health Initiative to $3 million as well as on the Council providing $200,000 for mental health training initiatives. Please click here to read our testimony.
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Proposed Legislation to Engage Older Adults in Workforce
NYS Legislature Proposes Legislation to Engage Older Adults in Workforce Assemblyman Englebright and Senator Golden are proposing policy initiatives to address the future workforce challenges by utilizing the experience and skills of older adults. Initiatives include:
- Mature Worker Task Force,
- Senior Volunteer/Real Property Tax Abatement,
- Mature Worker Employment Training Program, Centers for Lifelong Learning
- and more.
For more information, please read the press release.
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Reintroduction of Federal Positive Aging Act
The Positive Aging Act (PAA) of 2007 was reintroduced today by Senators Clinton and Collins and Representatives Kennedy and Ros-Lehtinen. The 2007 version of the bill only includes Title II of the PAA of 2005 as language from Title I was enacted as part of the reauthorization of the Older American’s Act. To view the 2007 draft version of the bill, please click here.
Click here to view the press release from Senator Clinton’s website.
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Cost Estimate of the Mental Health Parity Act
The Congressional Budget Office (CBO) has written a report on the financial impact of the Mental Health Parity Act of 2007 that would require group health plans and insurance issuers to provide coverage for mental health benefits at the same level as medical benefits. Note: This does not include Medicare. The report estimates that from 2009-2012 the bill would increase federal spending for Medicaid by $280 million and decrease federal tax revenues by $1 billion.
Please click here to view the report.
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In the News
At the End of Life, a Racial Divide
Minorities Are More Likely to Want Aggressive Care, Studies Show
By Rob Stein
Washington Post Staff Writer
Monday, March 12, 2007; A01
In her last days, Marjorie Clarke Driver longed for a quiet bath in her own tub. But she never made it home.
Instead, Driver, 88, died in a hospital, attached to tubes and monitors, after doctors worked furiously for 30 minutes to revive her, even though her heart and lungs were too far gone to respond.
"I really wanted to try to get her home," said Driver's daughter, Christina Clarke of Poolesville. "She never got her bath, and that really troubled me."
To die peacefully in the comfort of her Silver Spring apartment, however, Driver would have had to accept that there was no hope of recovering, refused further treatment and trusted that hospice care was best. But Driver, who was black, would have none of that.
"My mother did not want to die," said Clarke, 68, who works for the Montgomery County executive. "We could not use the word 'hospice.' That was taboo. That meant giving up. She wouldn't hear of it."
After lives in which they often struggle to get medical care, African Americans and other minorities are more likely than whites to want, and get, more aggressive care as death nears and are less likely to use hospice and palliative-care services to ease their suffering, according to a large body of research and leading experts.
As a result, they are more likely to experience more medicalized deaths, dying more frequently in the hospital, in pain, on ventilators and with feeding tubes -- often after being resuscitated or getting extra rounds of chemotherapy, dialysis or other care, studies show. "I think we need to be very attentive to attending to suffering in our patients and do everything we can to help minimize and ameliorate it," said Richard Payne, who runs Duke University's Institute on Care at the End of Life. "African Americans and other minorities are at greater risk of not dying well."
To be sure, not all minorities -- or even necessarily most -- have this tendency, nor is it exclusive to minorities. Americans of all races use hospice services and prepare living wills less frequently than experts say they could. And many minorities do take advantage of palliative care so they can die peacefully, surrounded by their loved ones.
Gina Burr, 52, a black litigation specialist from Oakland, Calif., for example, decided to discontinue treatment and accept hospice care after being diagnosed with advanced lung cancer. "I appreciate the comfort and the support," Burr said. "They're available 24 hours a day, seven days a week."
But while the gap is narrowing as hospice and palliative care matures and grows, minorities remain underrepresented. Only 7.5 percent of hospice patients are black, and only 4.8 percent are Hispanic -- less than half their representation in the general population. A large and growing body of research has shown that a significant proportion of African Americans and other minorities, as a group, remain much more likely to want to keep fighting as death nears.
Although researchers have studied many racial groups, the best data is available for African Americans.
"We don't want to stereotype people," said Leslie J. Blackhall, who studies end-of-life issues at the University of Virginia. "There's a lot of variation within groups. But overall, many, many studies have found that African Americans tend to want more aggressive care at the end of life."
What Is a 'Good Death'?
The largest study to examine the question to date -- an ongoing Harvard project funded by the National Cancer Institute that will involve about 800 terminally ill cancer patients in Massachusetts, Texas, Connecticut, New Hampshire and New York -- is finding that African Americans are two to three times as likely as whites to want everything possible done to keep them alive, to get life-prolonging care and to die in intensive care.
This tendency, which stems from a complex amalgam of socioeconomic and cultural factors, has provoked a debate about what constitutes a "good death," with some arguing that what is seen as unnecessary, counterproductive care by some may be desirable to others. "Not everybody buys into the mainstream image of a 'good death,' " said LaVera Crawley, a Stanford University bioethicist who studies cultural differences in attitudes about end-of-life care. "They don't necessarily want to go peacefully into the night."
Part of the explanation is socioeconomic. One study found that people with higher income and more access to treatment are about twice as likely to feel comfortable with withdrawing care as those of more modest means.
"A lot of it is not a function of race at all, really," said Etienne Phipps of the Center for Urban Health Policy and Research, part of the Albert Einstein Healthcare Network in Philadelphia. "Race is just a surrogate for economic, educational and access differences."
Part of it is that doctors do not communicate as well with patients from different backgrounds. That sometimes keeps minorities -- especially the poor and less educated for whom English may be a second language -- from fully understanding how sick they are, what more treatment would achieve, and what hospice or palliative care could do, studies have shown.
But even after researchers take socioeconomic factors into consideration, minorities still tend to express different preferences than whites for end-of- life care. One key study that Blackhall conducted of 800 elderly hospital patients in Los Angeles found that African Americans were twice as likely as whites to say they want to be kept alive in end-of-life situations, such as an irreversible coma.
Those findings are echoed by a preliminary analysis of data collected for the Harvard study from 481 subjects in Boston; Dallas; New York City; New Haven and West Haven, Conn.; and Concord and Exeter, N.H. It shows that about half the African Americans interviewed said they would want life- prolonging care even if they had only a few days left to live -- about three times the rate among whites.
One explanation may lie in the disparities in the health care available to minorities throughout their lives, researchers said.
"You may have a daughter who spent months fighting the system to get a mammogram for her mother. She's finally diagnosed with advanced breast cancer. Now they say there's nothing more that can be done. You can see how her reaction may be, 'Oh, they're just trying to avoid caring for my mother one more time,' " said Betty Ferrell, a nurse and researcher at the City of Hope National Medical Center in suburban Los Angeles who studies palliative care. For some, this view may be intensified by distrust of the medical system stemming from historical maltreatment, such as the infamous Tuskegee syphilis study in Alabama, which denied black men treatment for the disease.
"I hear it over and over again," said the Rev. Paulette M.E. Stevens of Montgomery Hospice in Rockville. "People come to me and say, 'My mother says if I go to hospice, they are just going to try to kill her.' "
While people of all races can find it hard to discuss death ahead of time and to accept that hope is gone, such fears may make some minorities even more hesitant to forgo treatment. African Americans and other minorities are far less likely to prepare living wills or sign do-not-resuscitate orders, studies in many settings have found. A 2002 University of Pittsburgh study of 3,747 nursing home patients nationwide found that blacks were one-third as likely as whites to have a living will and one-fifth as likely to have signed do-not-resuscitate orders.
The Role of Religion
Religion also appears to be a key factor. A part of the Harvard study that focused on 230 patients and was published last month found that religious people are much more likely to want to keep fighting at the end of life and that religion tends to play a particularly important role for minorities.
"Religion is an important factor in how people think about not only hospice but pain," said Crawley, the Stanford bioethicist.
"There is a tendency to say: 'Suffering is noble. God is giving this as a test. I need to take this as a test of my faith,' " she said. " 'We got through slavery. We got through civil rights. This is just another test.' "
That's the way Driver, a deeply religious woman who dedicated her life to raising seven children, felt.
"Mother knew that according to the Bible you don't die until you give up the Holy Ghost, and she was not ready," Clarke said. "She would say: 'The doctors don't know. Only God knows when it's my time.' "
There has been less research on the attitudes of Hispanics and other minorities, but hospice workers and palliative-care specialists report similar trends, although each group has unique views. Latinos and Asians tend not to want to tell terminally ill family members that they are dying, fearing that might hasten the end. Language barriers can further complicate care. And questionable immigration status may make families skittish about taking the legal steps necessary to enroll loved ones in hospice programs. "
There is the fear factor," said Carlos Gomez of Capital Hospice. "Some of them are loath to sign lots of pieces of paper. There is the trust issue."
Many families also feel it is their responsibility to provide care and keep fighting. "We're taught that we take care of our loved ones no matter what," said Cassandra Cotton, a black hospice worker in Las Vegas. "If I was not to take care of my mother, I would be embarrassed in front of my church and my community."
When doctors and nurses do not understand these impulses, it can lead to clashes. Often, such cases are mediated by hospital ethics panels.
"There needs to be a greater realization that there are many approaches to the terminally ill patient, and that a prolongation of care may be a reasonable choice," said William H. Bayer of the University of Rochester Medical Center, who published a study on racial preferences for end-of-life treatment last fall.
Other experts say that there is nothing noble or redemptive in suffering and that far too often patients suffer unnecessarily.
"To say that African American patients are more likely to want suffering so they will be close to God when they die is just incorrect," said Payne, of Duke University. "I think that romanticizes suffering."
While Burr, the Oakland cancer patient, opted for hospice, she said she understands why some friends are wary.
"A lot of black folks think if you write a will, that means death. It's just a cultural thing for us," Burr said. "Same thing with hospice -- hospice means death. And a lot of folks think they're just trying to railroad you to the graveyard."
Christina Clarke wishes she had been able to make her mother feel comfortable with hospice so she could have spent her last holidays at home.
"I really wanted to do that," said Clarke, whose mother died the day after Christmas. "But she had a good fight, and it was her choice. It was entirely her decision. Absolutely."
