Nobody wants to think about end-of-life issues, but we all have to do it eventually. With New Year's Eve around the corner, many familes resolve to get their household papers in order.
       You may already have everything covered, with power of attorney [POA] forms and health proxies on file for you and your partner. But when push comes to shove, how much do these papers really count?
        In New York, not much, according to Terry Checksfield. She'd been with her partner, Barbara Blake, for 27 years. "She was my wife. I talked to her about everything, she talked to me about everything." But when Barbara suffered a devastating stroke, she wasn't talking to anyone – and the medical and legal authorities weren't talking to Terry.
       "On May 23rd, Barb was with Brenda, her niece. They were going to a party. That's when Barb had her stroke." There's still anger in Terry's voice, more than a year later. "She had two cell phones, they passed two fire stations, and instead Brenda took her to her cousin’s house. Got her out of the car, up the stairs, and only then called the ambulance."
        Barb was brought to University Hospital in Syracuse. "That's when the trouble really started." Terry explained. "I'd shown up with a bag of medicine – Barb suffered from diabetes and back problems." Consent forms for Barb's care had been signed by Barb's family members, rather than by Terry. "At that point, my job was to get the best care for Barbara. I wasn't thinking about who signed what when."
         In New York, consent for care forms need to be signed by a spouse, relative, or legal designee. Barb had in fact signed a power of attorney and health care proxy form earlier that year, desginating Terry to make decisions for her.
       Despite these existing documents, Terry alleges that Barb's family took over the decision-making process. She cites an after-care planning meeting with the hospital's family services division that went on without her knowledge or consent.
      "The family services worker did apologize to me after," Terry said.       "She didn't know I existed. How would she know? The family certainly wasn't going to tell her."
        After the University Hospital received copies of the power of attorney and health care proxy, they had Terry sign a new set of paperwork and turned to her for treatment decisions. A representative from the hospital would not discuss this case, citing confidentiality issues, but did say that procedure dictated honoring the appropriate legal paperwork.
       "That meant that everything Rhonda [Barb's daughter] had signed was no good anymore," Terry said. "But these are her kids, I wanted them to be involved." The paperwork in question included a do-not-recessitate order, literally a life-or-death decision.
        "That's when things got even worse," Terry said. "They accused me of forging the [power of attorney and healthcare proxy] papers, of manufacturing the signature."
        When asked about the circumstances surrounding Barb's death, Rhonda Blake replied, "I'm surprised Terry wants to talk about this story. It doesn't paint her in a very good light." She paused. "I'm not sure how much I can really say, as there is some litigation going on." Rhonda Blake said that she'd be willing to talk more about the story after consulting with her family members, but subsequent calls to the Blake home went unanswered. Messages left with other family members elicited no response.
       According to Terry, Barb's family members continued to sign consent forms for Barb's treatment. One of these consents allowed a biopsy of a mass in Barb’s left lung. On top of everything else, she had cancer.
       As Barb's condition deteriorated, plans needed to be made for her care. Even though Terry had the power of attorney and health care proxy in place, a decision was made by hospital staff to include all of Barb's family members in the discharge planning.
       "That was great," Terry said with sarcasm. "They told the social worker that I was a rapist, a knife-wielding maniac, a spousal abuser." According to Terry, Oswego County Hospice determined that because of those allegations, releasing Barb to her home in Terry's care was not in Barb's best interest. She had to go to a nursing home.
        Citing confidentiality, Oswego County Hospice staff would not discuss the specifics of Barb's case for this story. Carolyn Miller, of Oswego County Hospice, was willing to discuss some aspects of the case upon receiving an authorization from Terry, but we did not receive requested records. According to Christy Carrington, legal counsel for the Hospice, "A person's POA ends at the time of their death, and so having been the decedent's POA prior to death would not entitle her to these records at this point."
       "I thought that by getting Barb out of the reach of the state-funded hospital and the bigotry of the hospice workers, I would have a better chance of getting her home." Terry said. "What a joke."
       Terry has raised a number of serious allegations about Barb's stay at the nursing home, including that family members attempted to interfere with the medical care Barb was receiving. Jennifer Remel, the acting administrator of the Sunrise Nursing Home, refused to speak about any of these allegations, citing HIPAA confidentiality.
      Remel also refused to speak about an alleged assault that took place in the facility. Emotions boiled over when Barb's family invited Leo Remillard, a born-again Christian, to come pray in Barb's room, and Terry objected. "We're not religious people. Barb and I had talked about this, and she didn't want no one praying over her."
      "People did care,” Terry said. "But their hands were tied. After the (alleged) assault, one of the nurses wanted to call the police, but they were overruled by the administrator and head nurse."
      Keith Burchell, of physician Bruce Shafiroff's office, confirmed that Terry was seen for injuries "consistent with the alleged incident."       These include bruises on her left leg and foot, injury to the knee, and a loss of sensation in the lower back.
      Terry was finally able to bring Barb home, but not without incident. Terry alleges that family members attempted to poison Barb in an attempt to keep her from returning to her home. "She was dying, and she had to have her stomach pumped," Terry said. "All my wife wanted to do was come home."
       Barb was home only a short time before she died. Power of attorney and health care proxy end at the time of death. Custody of Barb's body went to her blood relations, who buried Barb on private property. Terry is not allowed to visit Barb's grave.
       So, barring impeccable relations with your family members and virtual or literal inlaws, how do you ensure that your wishes are followed when you are unable to speak for yourself or after you die?
        "This is not just a gay issue," Terry said. "This is a human issue. The laws have to change for all the people. We had the POA. You can do all the things you're supposed to, and right now the state can step in and say 'I'm sorry, we're going to screw you.'" It is still important to have all the paperwork completed before a medical emergency arises, Terry added, "Because if you’ve got nothing with those papers, you've got less than nothing without them."
         A number of lawsuits are pending surrounding Terry's situation. "The paperwork has been filed," Terry said, "but no one has been served yet. Several people and organizations are going to be sued, but at this time, I'm not comfortable disclosing exactly who." The Empire State Pride Coalition is working to introduce legislation ensuring equal protection under the law for gay and lesbian couples at the end of life. But until the time when all families are granted equal rights, what happens to you at the end of your life might be the last thing you wanted.

Cynthia Potts lives with her children and their menagerie of animals in Ellenburg Center, New York, not far across the big pond.