President’s Memo on Hospital Visitation Falls Short of Full Equality

On April 15, President Obama issued a memorandum supporting hospital visitation rights for partners of lesbian, gay, bisexual and transgender (LGBT) persons and other Americans who are admitted to hospitals and whose caregivers or closest companions are not blood relatives or a spouse. It requests that hospital staff and administration respect any advance directives about visitation and decision-making people had in place before an emergency or routine hospital stay. While this move by the Obama Administration clearly shows support for LGBT families, it’s far short of what people of all sexual orientations and gender identities deserve: full equality in all matters under law.

The fact remains that even with this memorandum, and other legal documents and advance directives in place, same-sex partners can still be excluded from hospital rooms and prevented from providing love and comfort to their sick and dying loved ones.

Over the past several days, many blogs have publicized the heart-wrenching story of Harold Scull and Clay Greene, an elderly gay couple from Sonoma County, CA. When Harold was hospitalized after a fall in 2008, the hospital barred Clay from visiting his partner of 20 years. In a further affront to human dignity, Harold and Clay’s lease was terminated by Sonoma County and their belongings were auctioned off. The county placed Clay in a nursing home against his will and separated him from Harold, who passed away three months after the fall without his partner by his side. All this happened despite the fact that the couple had wills, powers of attorney and advance medical directives all naming each other. The National Center for Lesbian Rights is currently assisting Clay’s attorneys in a lawsuit against the county, the auction company, and the nursing home.

Heartbreaking stories like Clay and Harold’s remind us that we have a long way to go before LGBT Americans enjoy their full and equal rights as citizens and members of society.

Please join our friends at GetEQUAL in calling on President Obama to step up and be a fierce advocate for LGBT equality.

Our Last Chance to Protect Women’s Health Coverage

Senate and House leaders are in the final stages of negotiating the content of the health care reform bill that could be voted on in both houses next week. A new article on UUA.org details the experiences of three Unitarian Universalist religious leaders as advocates for reproductive justice and abortion rights and describes the harmful provisions in the current reform bills:

The Stupak-Pitts amendment in the House health care reform bill prevents women from using their own funds to purchase an insurance plan that includes abortion coverage in the new health insurance exchanges — taking away essential coverage that most insurance plans provide today.

Senator Ben Nelson’s addition to the Senate bill is an unworkable and unfair approach to abortion coverage by imposing arbitrary hurdles to secure coverage for abortion care. Under this provision, women would be forced to write two different checks to their insurance provider – one for abortion coverage and one for the rest of their insurance package.

Nelson’s provision makes it less likely for insurance companies to offer abortion coverage at all and presents a significant security risk to women purchasing this coverage. Both provisions would take away the coverage that most women have today and as such, they violate the very spirit of health care reform – extending comprehensive health insurance coverage to those who are most in need.

You can read the full article on UUA.org.

The UUA believes that we all have the right to make decisions about our own bodies based on our own values. Poor women, immigrant women and women of color are among those who are already disproportionately impacted by lack of access to safe and affordable contraception and abortion care, as well as by current laws restricting the use of public funds for abortion. If either of the current restrictions in the House and Senate bills pass with the final legislation, millions more women could lose the abortion coverage that they have today. Health care reform is about expanding coverage, not taking it away.

January 22nd is the 37th anniversary of the Roe v. Wade court decision, which will be commemorated in Washington, D.C. by a rally sponsored by the D.C. Chapter of the National Organization for Women (NOW). Find out how women’s organizations in your area are commemorating this day by searching online or contacting them.

No matter where you live there is still time to raise your voice as a person of faith who supports health care reform. Please call your members of Congress today and urge them to strike the Stupak-Pitts amendment and the Nelson check provision from the final bill.

STOP STUPAK! National Day of Action

If you have heard about the Stupak Amendment, which would ban coverage of abortion services for millions of women under health care reform, you might be wondering what else you can do to keep such sweeping restrictions on reproductive health and abortion coverage out of a final health care reform bill. (To learn more, see my blog post from November 12th)
Here’s what you can do:
For those of you within easy traveling distance, please join Rev. Meg Riley, UUA Director of Advocacy and Witness, and I for the National Day of Action in Washington, D.C. on December 2nd. There will be lobby training and a briefing starting at 9:30 AM, a mid-day rally on Capitol Hill, and lobby visits throughout the afternoon. We are coordinating our actions with our friends and colleagues of many faiths from the Religious Coalition for Reproductive Choice (RCRC), and if you would like to participate in a lobby visit or would like more information about the day’s activities, please contact Ellen Battistelli at RCRC (ebattistelli [at] rcrc [dot] org).
If you’re too far away to come to Washington, D.C, please sign the online petition. We will be delivering the signatures on December 2nd, so we need as many as possible!
December 3rd is National Senate Call-In Day. Call 202-224-3121 and ask for your Senator by name. Please take a few minutes to call both of your Senators. Here’s a sample call script:

“I’m calling as your constituent and a Unitarian Universalist religious person. I believe strongly that all people have the right to comprehensive, high quality health care and that women should be able to make reproductive health decisions based on their own values. Please oppose any amendments to health care reform legislation that would limit a woman’s right to purchase private or public health insurance offering comprehensive reproductive health care, including abortion care. Thank you.”

You can find more information and talking points in the RCRC toolkit or at the Planned Parenthood Action Center. I hope to see you on Capitol Hill on December 2nd. Please call me with any questions 202-393-2255 x12 or email obusch@uua.org.

When Health Reform Hurts

From what I understand of legal and judicial precedent, the Federal government is not supposed to interfere with a woman’’s right to choose when, how and under what circumstances to have or not have a child. This includes the right to a safe and legal abortion as under the conditions of the Roe v. Wade United States Supreme Court decision of 1973.
Late last Saturday night, this right began unraveling in the House of Representatives. When the vote was over, the House had passed a comprehensive health care reform bill that essentially eliminates a woman’’s right to choose abortion. The Stupak-Pitts amendment, which was included in the House bill, makes it illegal for any provider in the proposed health care exchange, the marketplace created for individuals and businesses, or in any public option, to provide abortion coverage.
Women would instead be able to purchase an abortion “rider,” additional coverage for abortion services. Anti-choice groups would have us believe that this is a reasonable compromise, but who would choose to pay extra for a service that they don’’t ever expect to use? Women cannot anticipate unintended or untenable pregnancies. Furthermore, in the five states that have abortion rider requirements already, there is no evidence that such riders have ever been made available. Losing the right to purchase abortion coverage with their own funds puts women at risk. Low and middle income women who will need subsidies to purchase insurance, those who are in the greatest need of comprehensive and high quality health care, are left without options. The lives of women and their families literally hang in the balance.
The decision to have or not have an abortion should remain between a woman and her doctor; this amendment threatens to revoke the right to that decision and violates the very spirit of health care reform. Health care reform isn’t about promoting one ideology over another, it’s about the legal and moral rights of people to receive the comprehensive health care that they need and deserve – and not to be denied coverage of services that are currently covered by most insurance companies.
It’’s extremely difficult for me to be happy about reform that doesn’’t provide access to comprehensive reproductive health care for millions of women – so I’’m not going to be. A health system that doesn’t give us access to care we need is inherently unjust and unacceptable. So I’’m going to believe that it will not be codified. I’’m going to put my faith in the Unitarian Universalists and other champions of reproductive justice out there, and I’’m going to believe in the power of advocacy.
But I need your help. I can’’t do it without you. Please contact your Senators and the White House with a clear message telling them to enact health care reform that does not eliminate services that women already receive, including comprehensive reproductive care, including abortion.

Health Care Reform Restricts Abortion Coverage

The House of Representatives passed a comprehensive health care reform bill that takes unprecedented steps towards limiting reproductive health care for women and severely restricting coverage of abortion services.

Read Unitarian Universalist minister and Religious Institute director Rev. Debra Haffner’s reaction to Saturday night’s vote on her blog, Sexuality and Religion

Van Jones, Green Jobs, and Health Care

If you are like me, you were angry when Glenn Beck started attacking Van Jones, worried when the White House voiced only tepid support, and horrified when Van offered his resignation over the Labor Day weekend. From my perspective, it all seemed to happen so fast. In reality, Beck had been attacking Jones for nearly a month. However: 1) I don’t watch Glenn Beck and only know what he’s saying when others tell me; and 2) My attention had been distracted by the health care “debate” being waged across the country – from angry crowds to painted swastikas to congressmen hung in effigy to guns being publicly brandished where the president is scheduled to speak.

Right now, I kind of feel like the clueless tourist who gets her pocket picked because I was too busy gawking at a staged diversion that I failed to mind my purse. Let me elaborate on this analogy:

  1. It would be a mistake to view the health care debate and the climate change/clean energy/green jobs debate as two separate issues. They are both part of a larger struggle.
  2. It would also be a mistake to think that our victories cannot be subsequently taken away from us if we do not remain vigilant.

The billions of dollars in funding for green jobs as part of the stimulus package is one such victory. Van Jones coming to DC to oversee how the money is spent was icing on the cake, but the most important thing was and is the green jobs themselves – the audacious plan to combat global climate change while at the same time providing pathways out of poverty for lower-income class families.

Ultimately, that is what we are working for – economic justice, “REdistributing the wealth” back to the middle and lower classes after decades of it being accumulated in only a handful of the wealthiest households – what Van Jones during his Ware lecture called “the Green New Deal.” Although it is not explicitly “green,” health care reform is part and parcel of the Green New Deal, as it would be a similarly significant move towards greater economic justice. And whether it’s the oil industries or the insurance industries or the stock-holders to whom they are accountable, they are united in opposing our success.

In the wake of Van Jones’ forced resignation, we can talk about the role of racism, we can talk about how Glenn Beck targeted Jones as revenge for Color of Change’s effective campaign against Beck. We can talk about a lot of personal motivations for what happened and we may be correct. But as much as Unitarian Universalists adore Van Jones and take a personal interest in his well-being (I know I do), we cannot make the mistake of focusing just on Van. The attack on Van Jones was but part of a larger attack on green jobs, and ultimately on the economic reforms which we seek. If you don’t believe me, read for yourself the words of the man responsible for Van’s departure (and I don’t mean Glenn Beck):

“Now that Jones has resigned, we need to follow through with two critical policy victories. First, stop cap-and-trade, which could send these green groups trillions, and second repeal the unspent portion of the stimulus bill, which stands to give them billions. ” – Phil Kerpen, Fox News, Sept 6th

So what do we do now? There is a danger that the Senate may be so absorbed by health care reform that it will drop climate change/clean energy legislation. Some voices have even suggested that pushing for a climate/energy bill might jeopardize health care, intimating that we must choose one or the other. What we must do now is remember that the distraction going on over there is actually related to the pickpocket over here. We can’t let the spectacle of “astroturfers” or hate-spewing talking heads distract us from the real goal, the struggle for economic justice. For those of you who are as mad as I am about what happened to Van, the sweetest revenge that we can take is to pass meaningful climate change/clean energy legislation that funds green jobs.

Organizing for Health Care Reform

In March of this year, I went to Washington, DC, for a national lobby effort with PICO, a major national faith-based community organizing network, which was entitled: “Faith and Families: Economic Recovery Summit.” The focus of the Summit was threefold: Jobs, Foreclosures and Health Care Reform. About 300 or so PICO leaders from various local organizing committees attended, representing about 20 states, from California to Massachusetts, New Orleans to Michigan. I am part of the clergy caucus group in PICO, and represent Essex County Community Organization (ECCO), a North of Boston faith-based community organizing affiliate.

As part of our lobby efforts on health care, PICO has developed some principles around reform that we shared with our political representatives. The PICO principles are that comprehensive health care reform must: be affordable, cover all, be financially sustainable, be passed in 2009, and be focused on benefitting low and moderate-income citizens. After having our own brainstorm sessions, PICO representatives went to Capital Hill and organized a major press conference with a number of congresspeople. Afterwards, we took our message to congressional offices. Leading up to this Summit, PICO had been a major player on SCHIP legislation, concerning health care for children, and also particpated in a major summit with President Obama at the White House. PICO is also a major organizer for this week’s national conference call with the President. At the moment, this is clearly PICO’s major legislative push for 2009.

At a recent clergy caucus for the Northeast region of PICO affiliates, we discussed some of these issues and I raised with the national PICO leadership whether or not we shouldn’t be advocating for single payer. It was a lively discussion, with differing points of view, though the leadership staff of PICO suggested they had determined single payer as not feasible in the current political climate. For this reason, they decided to stick with a set of clear principles and let Congress determine how to reach these. Though the position is understandable, many of us have still lobbied our legislators to support the Kucinich bill that encourages states to implement a single payer system. Our own congressperson on the North Shore of Boston, John Tierney, is one of the co-sponsors of this bill along with about 80 others.

As the news emerges concerning the possibility of the White House backing away from the public option as part of the health care reform initiative, it seems a good time to lobby congress once again that if single payer is not currently feasible, a public option in competition with the health insurance industry would seem vitally important. Also, our local PICO afiliate, ECCO, last week helped to organize a rally outside of the office of Rep. Tierney in Peabody, MA., to counter a planned demonstration by some local anti-healthcare reform advocates. We wanted to show support for Tierney’s strong reform position. Fortunately, we outnumbered the protesters 3 to 1 (300-100). It was a good effort.

Rev. Art McDonald, PhD, Minister, First UU church of Essex, MA.

Editor’s Note: The UUA invites you to be on a phone call with President Barack Obama in an urgent faith conversation about health care reform on Wednesday, August 19.

President Obama will be on a forty minute, nationwide phone call with the UUA and other national religious denominations, along with PICO, Gamaliel and other groups on Wednesday, August 19 at 5:00 p.m. Eastern / 4:00 p.m. Central / 3:00 p.m. Mountain / 2:00 p.m. Pacific. The goal of the call is to connect and energize the millions of people of faith across the country who are concerned about health care and who want to be part of the solution. Join us Wednesday, August 19th, to hear from faith leaders across the country and President Barack Obama!

To listen in on the nationwide phone call, log on to www.faithforhealth.org/uua at the time of the call.

Our Last Days with Mom

Two days before I was supposed to fly to San Francisco for my father’s 80th birthday, my mother was diagnosed with stage IV adenocarcenoma of an unknown primary. (For you non-medical types, that means she had cancer of the epithelial cells that line our throat, stomach, intestines, and reproductive organs; it had spread to multiple locations, but they didn’t know where it had started.) When Mom – who was the opposite of a hypochondriac – had complained of not feeling well, we had of course urged her to see her doctor. That was in late January. She did not get an appointment until early March. By then she had lost weight and was having trouble breathing. Upon seeing Mom’s condition, her primary care physician checked her into UCSF hospital, where they drained several liters of fluid from her abdomen and both lungs. It took another week for the test results to come back with the diagnosis. When I got home on March 19th, Mom’s belly was distended. She could not eat. She could not have a bowel movement. She burped incessantly. Instead of a big birthday celebration it was just Mom, Dad, my brother Victor and myself in a house stiffled by worry. Mom managed to force down one small piece of mango birthday cake.

The prognosis had been 6-9 months, but Mom was always faster than anyone expected. She left us only seven weeks later, one day shy of Mothers Day.

I know that when people are grieving we often look for someone or something to blame. I know that Mom’s cancer was diagnosed very late, and even if the health care system had worked perfectly for us, Mom likely still have passed away from us too soon. But I don’t think it’s unreasonable to note the numerous ways in which the health care system made what little time we had left with her that much harder for us. And all the while, I have to remember that we are the “lucky” ones who have health insurance. Mom was covered under an HMO.

First, there was the matter of the referral. Mom’s primary care physician had written a referral for her to see an oncologist. But when I called the number on the slip to make an appointment, I was informed that before we could have one we needed more tests in order to try to pinpoint the primary location of the cancer. “You can’t be serious,” I exclaimed, “She has cancer; she needs to see an oncologist immediately.” The woman on the other end of the phone “explained” that “all the oncologists at UCSF are highly specialized,” some specializing in lung cancer and others in colon cancer, etc. Without knowing the “primary location” of the cancer, she did not know which oncologist to refer Mom to. After a little more back and forth, it became clear that I was not talking to a doctor, but an HMO bureaucrat, one that had the power to decide whether my mom could see a doctor or not.

Two additional tests were required. When we tried to schedule these tests, we were given appointments three weeks later. Three weeks for the test, another week for the results… a month. And in the meantime the cancer was growing every day.

At this point a family friend who is a doctor explained to us that “in-patients” automatically get priority for procedures over “outpatients,” even if the outpatients have a time-sensitive, life-threatening disease. With that knowledge, we checked Mom into the hospital in order to speed up the process. It wasn’t hard to get her admitted. Mom was now vomitting on a daily basis. But being inside the hospital presented its own challenges. Instead of familiar family surroundings, the hospital was stuffy, cramped and depressing. Mom shared a room with a woman who apparently screamed in her sleep, keeping Mom up at nights. During the day, there was little for her to do other than wait for visitors (of which there were thankfully many). It was not an environment conducive to remaining in good spirits, which is essential to maintaining health.

Over the course of Mom’s five weeks in the hospital, we saw numerous doctors – so many that we could not keep track. Different doctors looked after different parts of her. A team of oncologists conferred regarding her cancer, but would not start chemo while Mom was still in the hospital. A surgeon and his students stopped by briefly each day to check on the status of her blocked bowel, but claimed that they could not operate so they did nothing other than stop by. Every procedure, whether ultrasound or CT scan, was handled by a different department. And Mom was gurneyed from one location to another by attendees who left as soon as they reached their destination, whether the receiving end was ready or not, sometimes leaving Mom out in the hall as if she were a package. One doctor was supposed to watch over her overall health, tying it all together. But that position was filled by a different doctor each week, so that each time we started over again with someone unfamiliar with her case.

To be fair, some of the nurses and doctors were wonderful, displaying real compassion and attentiveness. But far too many were not. There was the oncologist who, when my brother mentioned that he had been researching Mom’s cancer online, shook his head in disapproval. When my brother said we were seeking a second opinion, his response was, “Yeah, good luck with that.” There was the doctor who drugged Mom into a three day delirium, prescribing one anti-nausea medication after another instead of considering that the approach wasn’t working. When we voiced alarm, we were told that it was “common for senior citizens to show some delirium,” ignoring the fact that we knew OUR mother had been mentally sharp until only a few days before. There was the doctor who, when I questioned some decisions that had been made, beligerantly suggested that I was making random acusations. There was the nurse who decided to “test” Mom’s condition by waiting to see if she could stand without assistance, despite my informing him to the contrary and despite Mom’s cries of distress.

Above all, the most frustrating thing was that once in the hospital, we were caught in a catch-22. The cancer had created numerous secondary ailments – a bowel obstruction that resulted in vomitting, ascites (fluid buildup in the abdomen and lungs) which caused painful distention and hampered her breathing, and edema (swelling of the lower limbs due to poor nutrition). As long as we were in the hospital, Mom could not receive chemotherapy because chemo was for outpatients only. Nor were we allowed to try alternative treatments such as acupuncture or homeopathy because of the liability issues it presented. But without the chemo or any other treatment, Mom’s cancer multiplied unchecked, causing the symptoms that were keeping her in the hospital. As long as she was vomitting, they kept her as an “inpatient,” pumping her full of anti-nausea medications that impaired her mind and were only addressing the symptoms. It was madness.

Little by little, yet all too fast, Mom grew so weak that chemo was no longer an option, even if her bowel obstruction had spontaneously recovered. In her last days, her kidneys started to fail and in her last hours her lungs filled again with fluid. She died of respiratory failure at 6:50 am, May 9th, 2009. After talking with the doctor on call we gathered up Mom’s belongings and left at about 8:30 am. An hour later at home, the hospital was on the phone telling me that we had to come back in order to sign the release for the body. “Why,” I asked incredulously, “didn’t you tell us this during the hour and a half that we were still there?” It was indicative of every frustration that we had experienced during the last seven weeks. Only this time, they had nothing to hold over us. I refused to return. Another hour later, they called again, this time saying that we didn’t have to sign at the hospital after all and could do so with the funeral home.

I won’t go into the details of Mom’s funeral, except to say that in almost every way our experience with the funeral home was far more pleasant than with the hospital. The employees were kinder. Every person that we worked with seemed to know Mom’s case. Instead of telling us what we couldn’t do, they went out of their way to meet requests. Obviously, funeral homes are businesses and depend on satisfied customers. But shouldn’t a hospital want satisfied customers as well? As I said, I am at terms with the fact that Mom’s time here was up, but our last days with her could have been so much less unpleasant than they were. From my family’s perspective, there is little that is healing about the health care system.