BY GAIL EHRLICH
Lesbian.com
You may have read about Roger Gorley, a gay man who was arrested for refusing to leave the hospital bedside of his partner, Allen Mansell. When Mansell’s brother asserted control over his brother’s treatment, hospital personnel sided with the brother rather than Gorley. While the arrest of Gorley was an extreme action, the issue of control of a partner’s medical care is an issue that has long plagued gay men and lesbians.
CASE STUDIES
Sharon Kowalski and Karen Thompson
JoAnn Ritchie and Sharon Reed
Lisa Pond and Janie Langbehn
ESSENTIAL LEGAL INFORMATION
What You Can Do to Protect Yourself and Your Beloved
Living Wills and Advanced Medical Directives
Durable Medical Powers of Attorney and Health Care Proxy
Designation of Hospital Visitation Authorization
Sharon Kowalski and Karen Thompson
In the fall of 1983, Karen Thompson and Sharon Kowalski were a young athletic couple who relished living in their house near a Minnesota lake. They enjoyed outdoor activities such as canoeing and cross-country skiing. Stereotypically, both Karen’s and Sharon’s profession were as physical education teachers. Sharon like to drive her motorcycle, play poker and drink beer.
On Sunday, November 13th, Sharon and Karen’s lives changed irrevocably. As Sharon drove her niece and nephew to their parents home, her car was violently struck by a pick up truck driven by a drunk driver. The accident was so brutal it killed Sharon’s niece and inflicted a severe traumatic brain injury on Sharon. The accident left Sharon in a coma.
At the time of the accident, Sharon and Karen had been a couple almost four years. They lived together, exchanged rings, vowed to love each other for life and even had life insurance policies naming each other as beneficiary. But they were both closeted to their respective families. Karen arrived at the hospital before Sharon’s parents. When Karen first tried to learn Sharon’s status, hospital staff told her she was told only immediate family members could receive information about Sharon’s medical condition. Karen spent over two hours trying to find out if Sharon was even alive.
Sharon Kowalski, left, with Lisa Thompson, after the accident. (Photo courtesy Outright Speakers and Talent Bureau)
After Sharon’s parents arrived they started making the medical decisions. After several weeks, Sharon’s father told Karen it was improper for Karen to spend as much time at the hospital as “no one can love Sharon like family loves Sharon.” Karen wrote Sharon’s parents to tell them the truth of their love for each other hoping that with this knowledge they would not take steps to prohibit Sharon from seeing her. The letter only made matters worse.
On March 1, 1984, Karen filed suit to become Sharon’s legal guardian. Donald Kowalski, Sharon’s father, filed a countersuit. The court named Kowalksi legal guardian, but initially granted Karen visitation rights. These visitation rights were quickly rescinded and Kowalski prohibited Karen from visiting Sharon. This prohibition lasted three and a half years. The last time Karen visited Sharon, Sharon, who could not speak, wrote “Help me. Get me out of here. Take me home.”
While Donald Kowalski placed Sharon in a nursing home located in a remote part of Minnesota, Karen wanted Sharon to stay at a state of the art rehabilitation center located near her home.
Karen and Donald Kowalski fought a protracted battle in court. Karen incurred legal bills of over $300,000. Karen began speaking nationwide on disability rights and gay rights. Karen’s voice inspired the formation of various “Free Sharon Kowalski” groups. In 1988, a small lesbian publishing house, Spinsters Ink/Aunt Lute, published a book Karen co-wrote: “Why Can’t Sharon Kowalski Come Home?” In December 17, 1991, on the twelve year anniversary of Karen and Sharon exchanging rings, the court appointed Karen as Sharon’s guardian. This legal victory was won by Karen’s sheer persistence. Finally, on April 29, 1993 Sharon came home to Karen. Sharon still needs extensive care taking and while she is now able to speak to some extent, her cognitive abilities are still severely mentally impaired.
At some point while Karen was fighting for the right to take care of Sharon, Karen fell in love with Patty Bresser. “I made the decision to be open to another relationship, but anybody who would love me would have to know that I’m a package deal,” Karen said in an interview with Boyd Hubbert of KARE TV. Karen and Patty take care of Sharon in their home in St. Cloud, Minnesota.
JoAnn Ritchie, age 59, and Sharon Reed, then age 66, were life partners for seventeen years, years which Sharon characterized as the happiest time in her life. Sharon was the mother to a son from a prior lesbian relationship, thus, as Sharon said JoAnn “became the third mom…to my son.” The couple owned a home on Whidbey Island in Puget Sound where Jo Ann enjoyed watching the crane’s that frequent the island.
Because JoAnn suffered from a chronic blood disease, the couple took concrete steps to be sure Sharon would be involved in JoAnn’s medical care. JoAnn vested Sharon with medical power of attorney and expressly documented JoAnn’s desire to have Sharon’s companionship during hospitalizations.
On August 30, 2005, Sharon brought JoAnn to the University of Washington Medical Center in Seattle because of JoAnn’s breathing difficulties. This was not the first time JoAnn had received treatment at the Medical Center. On each of these prior occasions, Sharon had complete access to JoAnn. Also, JoAnn’s medical records included the medical power of attorney legal documentation.
By September 3rd JoAnn’s condition was dire. Her doctor transferred her into the Intensive Care Unit. As the orderly wheeled JoAnn into Intensive Care, JoAnn pleaded with Sharon “I’m scared. Don’t leave me alone.” Sharon promised to stay by JoAnn’s side.
From the time JoAnn was placed in Intensive Care until about 11:00 pm, JoAnn was allowed to have visitors in her room, two at a time. At approximately 11:00, the critical care nurse taking care of JoAnn told Sharon she would have to leave JoAnn’s room and to stay instead in the waiting area. According to Sharon in an interview with Legal Showtime, an internet based documentary program, Sharon told the nurse about the power of attorney already in JoAnn’s medical file. The nurse stated she did not care and ordered Sharon out of the room stating “you don’t belong here.” Sharon replied “I do belong here.”
Although not documented in the nursing notes in JoAnn’s medical chart, the nurse in a lawsuit later claimed Sharon’s presence agitated JoAnn. This characterization of Sharon agitating JoAnn was disputed by JoAnn’s sister, who had also been a nurse. In a deposition, JoAnn’s sister noted Sharon’s profession was as a psychotherapist; when JoAnn became anxious on a prior occasion the sister overheard Sharon whisper to JoAnn a phrase JoAnn loved to hear: “Faith, not Fear.”
That night when Sharon noticed the nurse had left JoAnn’s room and understanding how seriously ill JoAnn was, Sharon entered the room to comfort JoAnn. Each time the nurse noticed Sharon’s presence, the nurse ordered Sharon back into the waiting area. At one point, Sharon sought help from an on-duty nursing supervisor. But this supervisor did not help Sharon, even though the hospital’s visitation policy provided for visitation twenty four hours a day. When the Intensive Care nurse’s shift ended at 7:00 am, JoAnn’s doctor allowed Sharon back by JoAnn’s bedside. By that time, JoAnn’s condition had deteriorated and she was medicated past conscious awareness. JoAnn Ritchie died several hours later. As a result of the intensive care nurse’s arbitrary decision, JoAnn Ritchie spent the night before she died alone, without the comfort and solace of her life partner.
Several months after JoAnn’s death, Sharon told a friend about the horrific treatment JoAnn and she received at the hospital. This friend referred Sharon to Judith Lonnquist, a Seattle civil rights attorney. Lonnquist recognized there was no simple, uncomplicated way for Sharon to obtain vindication. Eventually, a civil lawsuit was brought against the nurse, among others under a legal theory which required proof that the nurse’s behavior was “so extreme in degree and outrageous in character as to go beyond all possible bounds of decency and to be regarded as atrocious and utterly intolerable in a civilized community.” In 2010, almost five years after JoAnn Ritchie died, a Seattle jury ruled the intensive care nurse did not violate Sharon’s legal rights. According to Lonnquist, even though Sharon did not win her lawsuit, she felt empowered because she stood up in support of the love of her life. Sharon stood up on another occasion, when she testified before a committee of the Washington State Legislature on behalf of legislation prohibiting discrimination against gays and lesbians.
Photograph courtesy of Janice Langbehn
Lisa Pond and Janice Langbehn were a remarkable couple. They met while both of them were psychology majors at the University of Puget Sound in Washington State. After pledging their love at a Holy Union commitment ceremony, they become foster parents the following year. At the time they were in their early twenties. Before Lisa died in 2007, they were foster parents for twenty-five children. They also adopted four children — each having special needs. Lisa was the stay at home mom; Janice worked full time. In 1999, Janice was diagnosed with Multiple Sclerosis but still completed her graduate education in social work.
Janice decided to surprise Lisa and the children with a 15 year anniversary gift of a trip to Miami and then a cruise put on by Rfamily Vacations. Rfamily Vacations was founded by, among others, Rosie O’Donnell to provide a welcoming vacation for LGBT families. Rfamily Vacations are known for their child friendly environment where children of gay and lesbian couples make friends with other children similarly situated. So in choosing to travel on an Rfamily cruise, Janice was trying to put her family in a warm and embracing environment. Ironically, one of the features on this cruise was a panel of attorneys telling the Rfamily customers about means of establishing legal vehicles to provide protection in the event of medical emergencies.
The cruise Janice booked, left Miami’s port on February 18, 2007. Lisa, Janice and three of their children boarded the ship hours before it left the Miami dock. The family ate lunch and then Janice went to the cabin to unpack. Lisa took the children to the top deck so the children could play basketball. Lisa unexpectedly suffered a brain aneurysm. Janice heard the children banging on the cabin door saying “Mommy was hurt.” When Janice opened the door she immediately recognized Lisa was gravely ill. Lisa was unable to speak, but used sign language to answer Janice’s question as to whether she had been hit in the head. An ambulance transported Lisa to the nearest trauma center which was at Jackson Memorial Hospital. Janice and the children followed in a taxi cab.
Janice tried following Lisa’s gurney into the trauma bay, but was stopped by the trauma team who ordered her to stay in the waiting room. As told by Janice on her website, approximately a half hour later, a male social worker spoke with Janice. He told her she was in an “anti-gay city and state and you will not get to know about Lisa, her condition nor get to see her.” Janice immediately telephoned a close friend who hustled to Janice and Lisa’s home and faxed the hospital the necessary legal health care documents. Janice and Lisa had previously obtained the proper legal documentation because of concerns about Janice’s Multiple Sclerosis. An hour later, Janice still did not know Lisa’s condition. Janice telephoned her family doctor, at home, and asked the doctor to call the hospital to get information. While Janice was talking to the family doctor, a doctor from the hospital appeared and told her that Lisa had suffered massive bleeding in her brain. The hospital doctor left without asking Janice if she had any questions. Her family doctor explained Lisa’s ominous situation.
Eventually two surgeons from the hospital appeared and explained that Lisa’s condition brain meant that if she survived she would be in a persistent vegetative state. Janice told the doctors of Lisa’s wishes not to be left in such a state. The doctors promised Janice she could see Lisa once Lisa was “cleaned up.” These doctors left and did not speak to Janice again.
Janice asked a hospital chaplain for a priest to perform Lisa’s last rites. A priest quickly escorted Janice to the trauma area. This was the first time since the ambulance arrived that Janice was able to hold Lisa’s hand. After the prayer, the priest quickly escorted Janice back to the waiting room and left Janice alone to face the difficult task of telling the children Lisa’s impending fate. Janice tried to take the children back to Lisa so the children could say goodbye. The clerk refused to allow this. Janice and the children sat waiting outside the trauma bays, while Lisa lay restrained in her gurney with no one to hold her hand or provide her with any comfort. Lisa was transferred to Intensive Care, and still Janice and the children waited outside the trauma bays.
Finally, eight hours after Janice arrived at the hospital, Lisa’s sister arrived from Jacksonville, Florida — having driven to Miami as soon as Janice telephoned the sister. It was only after the sister arrived that Janice learned Lisa had been moved to Intensive Care. The sister persuaded the nurse in intensive care to allow Janice and the children to visit Lisa. By this time, Lisa was in a deep coma. Hours later after the doctors pronounced Lisa dead, they did not come to speak to Janice. Following Lisa’s wishes, Janice arranged for Lisa’s organs to be donated. As a result four people lives were saved.
After Lisa’s death, Lambda Legal sued Jackson Memorial Hospital on Janice’s behalf. Although the lawsuit was unsuccessful, then White House Chief of Staff brought the lawsuit to President Obama’s attention. On April 15, 2010, the White House announced a policy requiring hospitals receiving Medicare or Medicaid funding to provide hospital visitation without regard to the patient or visitors sexual orientation or gender identity. That same day, President Obama, while aboard Air Force One, telephoned Janice to express his sympathies about Lisa’s death, the mistreatment she and Lisa received, and to express sorrow that the children never had the opportunity to say goodbye to Lisa. A month later Janice and three of her children attended the 2010 White House Reception recognizing LGBT Pride Month. Before President Obama’s speech, Obama met privately in the Blue Room with Janice and her children .
Despite Janice’s busy schedule working full time and raising their four children, Janice has given over 70 speeches and press interviews to advocate on behalf of LGBT medical patients and their families. In 2011, President Obama awarded Janice the Presidential Citizens Medal to honor her advocacy. Janice chuckled as she described her children’s reaction to the Medal ceremony. The children upon learning that they would not get additional alone time with the President decided not to attend. They were too busy with other things — making signs for the upcoming Home Coming Dance and attending a swim meet.
Janice is hopeful that her and Lisa’s story will reach a broad audience. A feature length film is in development. According to Janice, “I have continued on with the message that it is not a gay right to hold someone’s hand when they die, it is a human right. Lisa didn’t deserve to die alone.” Now, more than six years later, Janice remains haunted by having to make a decision whether to take Lisa off of life support without being able to see for her own eyes Lisa’s medical condition.
What you can do to protect yourself and your beloved
In order to have protection against the type of treatment each of these couples received, you must plan ahead. Legally there are three separate issues that can be addressed by planning. Preprinted legal documents spelling out your wishes can be created without spending money on legal fees. Many states have an online registry allowing you to store your medical planning documents. For people living in states where there is no such registry, certain organizations provide cloud storage for a small yearly fee. Similarly the organization We Who Care provides a wallet size CD that contains the planning documents.
Sources for Internet Services for Storing Medical Planning Documents
MedicAlert
U.S. Living Will Registry
It is a good idea to give a copy of your planning documents to your doctors, any person named as a health care proxy, any hospital or care facility in which you are likely to receive medical treatment, family members and friends whom you believe should known about your medical intentions.
Living Wills & Advanced Medical Directives
The first type of document is usually called a “living will” or an “advanced medical directive.” This document outlines your desires regarding life prolonging measures such as ventilators and feeding tubes in the event of an incapacitating terminal illness. These documents only take effect when you are physically unable to speak for yourself. By preparing this document before it is needed, in the event of a catastrophic problem your physician and loved ones will know whether or not you want your doctors to use certain medical procedures to prolong your life. This spares your loved ones from having to guess what choice you would to be made on your behalf.
Because laws governing living wills vary from state to state, it is necessary to make sure that the form you use follows your local state law. The websites for most state bar associations contain printable forms usable in their respective state. Also, most hospitals will provide you with a preprinted living will applicable in their state.
Sources for State by State Preprinted Living Wills & Advance Directives Forms
AARP
American Bar Association
Caring Connections
Aging with Dignity
Durable Medical Powers of Attorney & Health Care Proxy
The second type of document is used called a “durable medical power of attorney” or “health care proxy.” This document allows you to name a person who can make these important decisions in the event you become incapacitated. If Sharon Kowalski had created a health care proxy naming Karen Thompson, Karen would have avoided all the legal problems she had fighting Sharon’s parents. Although Karen is a powerful advocate for same-sex marriage, as she said in a pro-same sex marriage video: “…Marriage really isn’t enough. Please protect yourselves from nightmares like Sharon’s and mine…Take control. Do your advanced care planning. We must build a record of what we would want if something like this were to happen. Document. Document. Document…We must protect ourselves. Protect our relationships. Protect our families.” Like living wills, laws governing durable medical powers of attorney vary state by state. Many states allow combining in one document the living will with the health care proxy. The American Bar Association has created a universal form which can be used in all but: Indiana, New Hampshire, Ohio, Texas and Wisconsin. Access the ABA’s form here. Because the ABA’s form is Health Care Proxy Form is meant to cover many states, the form has been designed to be as simple as possible. The following list contains links to durable medical power of attorney forms for the states not covered by the American Bar Association’s universal form.
Durable Medical Power of Attorney & Health Care Proxy by State:
Indiana
New Hampshire
Ohio
Texas
Wisconsin
Designation of Hospital Visitation Authorization
The third type of form is a Hospital Visitation Authorization. Under the regulations issued by the Obama Administration, hospitals which receive Medicare and Medicaid funding are required to have written policies and procedures outlining patients’ rights to choose who may visit them during their hospital stay. Hospitals may not deny visitation privileges based on sexual orientation or gender identity. Specifically, same-sex domestic partners are accorded the same visitation rights as married couples. The regulations also require that each hospital implement an internal grievance procedure as well as contact information for someone on the hospital staff who can resolve visitation conflicts. When a patient is incapacitated, the regulations do not require any specific form of proof to prove to allow visitation. In addition to proof of marriage, a domestic partnership or being designated as a health care proxy, the regulations recognize shared residences and financial interdependence as sufficient proof. Additionally, the Human Rights Campaign’s website contains a sample affidavit that may be used as well.
Even under the best of circumstances, it is very emotional to be the loved one for someone who is hospitalized. Dealing with a homophobic nurse or clerk makes it that much worse. If someone tries to prevent access, take a deep breath. And again, take another deep breath. Arguing with this person is unlikely to change his or her behavior.
The obstructionist hospital employee is likely to claim you are being disruptive, rather than own up to his or her unprofessional behavior. Rather than arguing, seek out the person whom the hospital has designated as being available to resolve visitation conflicts. During the day if that person cannot be located, seek out the hospital’s Risk Manager or Director of Nursing. During the night, when fewer people are working at the hospital, the hospital will have an individual who is in charge of the nursing shift. At many hospitals this person is known as the House Director. These administrators will be aware of the federal regulations and will want to limit the hospital’s legal exposure by smoothing over any visitation problems.
We are living in an era in which we have far greater rights than Sharon Kowalski and Karen Thompson. Plan ahead so you can enforce these rights. And be grateful for the willingness of efforts of people such as Karen Thompson, Sharon Reed and Janice Langbehn who did not silently accept injustice.
Gail Ehrlich is a career prosecutor and is presently writing a book discussing the legal history of LGBT Americans.
This article is intended to provide general information and a general understanding of the law, not to provide specific legal advice. This information should not be used as a substitute for competent legal advice from a licensed professional attorney in your state.
