Portal de Periódicos da CAPES

The Wedding

2011; Elsevier BV; Volume: 57; Issue: 3 Linguagem: Inglês

10.1053/j.ajkd.2011.01.006

1523-6838

Lewis M. Cohen,

Palliative Care and End-of-Life Issues

Doctors are rarely present when patients die, and it is nursing staff that are more likely to help them achieve the most during their final days. As a palliative care academic with a particular focus on the care of patients with kidney disease, I mistakenly thought that I knew a lot about dying. In a series of interviews, nurses Amy Gleason and Kim Hoy described to me their care of Barbara Dilanian, a 58-year-old school teacher with polycystic kidney disease, who received two cadaveric kidney transplants that were subsequently rejected. Mrs Dilanian was admitted after undergoing several courses of chemotherapy and radiation therapy for Hodgkin lymphoma and then contracted bronchiolitis obliterans. To me, the narratives of these two renal nurses highlight the best that nephrology and palliative medicine have to offer. During her interview, Amy explained, “It became obvious that Barbara was not going to live much longer. I knew months before she died that she was not going to survive, but she did not accept it. I suspect she kept hoping she was going to get better and everything was going to be fine. In the end, she thought she would go home. Plus, she had her daughter, and there was going to be the wedding.” But the reality as Amy saw it was never going to match Barbara's expectations. Barbara had been sick for far too long and had never really healed from her respiratory problems. Her lungs were in bad shape, she couldn't breath without a lot of oxygen, and she couldn't do any therapy because she was so short of breath. Her life was incredibly restricted. All she could really do was lie in bed. “We talked all of the time about her daughter's upcoming wedding, how it was going to take place at Cape Cod in August, and what a big thing it would be. Barbara kept saying, ‘I have to get better, because August is coming. August is coming!' The wedding was always her goal. She was determined to see her daughter, Jane, get married.” While this hope was a strong motivator for Barbara, it became increasingly apparent that it was just that, a hope. As Barbara's nurse, it fell on Amy's shoulders to level with her patient. “One day, I said, ‘Barbara, you are not going to get better, and there will be no August.' I know she was surprised.” That same day, Jane also was visiting and she had been in her mother's room, planning the wedding, sitting on the bed, and talking all about the gown. As Amy tells it, she waited for the right moment and pulled Jane out into the hall. “I think your mom is going to die really soon—within the next couple of days.” Understandably, it took Jane a few minutes to compose herself. Like Barbara, Jane and her whole family had turned the wedding into a focus for all their attention and hope. They just knew that she had to make it to August. Hearing Amy's words now contradicted everything that they had wanted to believe for weeks and months. After Jane got over the initial shock, Amy asked her, “How do you feel about getting married now?” Jane almost fell to the floor, and she stammered, “But, I am getting married in August.” “Well, your mom's plan is to see you get married, and that is all she wants to do. So, why don't we try to get you married?” “Well, when?” “Well, tonight,” Amy replied, amazed at the role she had suddenly assumed. Amy had not even planned her own weddings: her first had been coordinated entirely by her father, while for her second, she and her husband had simply run off and gotten married, no planning required. Now she was proposing to organize someone else's wedding; someone who was a stranger. “This is private,” Jane responded. “We don't need this.” But Amy is not a person who gives up easily, especially when it comes to a situation like this, where she knows the alternate endings and none of them are good. Amy continued talking to Jane for a while, trying to get her to see what only Amy's years of experience could tell her. Finally Jane's fiancé, Allen, spoke up. “Janie, I think this is something we need to do.” Jane looked at her fiancé and turned back to Amy and nodded in assent, and just like that the wedding preparations began. Looking back years later and recounting the details of Barbara's story to me, Amy's voice was still enthused with excitement. “It was great!” Amy recalled. “And it was great, because our staff was wonderful. Suddenly everyone was pulling together. They were doing a lot of my work, so that I could focus on the wedding. Otherwise, it probably could not have happened, because you can't just ignore the care of 7 other patients while planning a wedding. “There were a few stumbling blocks. I couldn't get one of the Catholic chaplains to officiate. The Dilanians were not Catholic, they were Protestant—Congregationalist, I think—but that was not the problem. I called a priest to oversee the ceremony and explained that this would not be an official wedding. It was just a wedding, so that Barbara could see something. It was not going to go down in the books as the actual wedding. Well, he refused, because it was going to be ‘deceitful and lying.' Oh, for Christ's sake! “The chaplain then showed up at the renal unit and tried to further explain his position, and I said, ‘I don’t really care. If you are not going to help me, get out of my way, because I have a lot to do right now.' I ended up calling the mayor's office to get a justice of the peace. That turned out to be a pretty good idea, and they were very helpful. “As this event begins to take shape, Jane, Barbara's daughter, said to me, ‘Oh my God! I need my wedding gown, and it's in Boston at the dressmaker!' Well, her fiancé, Allen, piled into his car and quickly drove off. Meanwhile, some of our staff went to the hospital gift shop and bought Barbara a new nightgown, so that she would look presentable. We all helped Barbara with her makeup. While it is pretty hard to make a dying woman look nice, in short order she looked about as nice as you can look under the circumstances. “The husband-to-be returned from Boston with a dress that was literally pinned together—little pins held the sleeves on and attached the body to the skirt. He came back with this fragile garment, and Jane grabbed her makeup and got dressed in her mom's room. Allen and her father drove back to the house to change into their suits. “By this time, Barbara was really, really bad. She was failing, and we were not even sure she was going to make it. We pushed Barbara and her bed into the chapel. It was one of those special beds and it was enormous. And we stood by during the ceremony, ready to inject her if she stopped breathing or her heart rate dropped. We had some drugs handy to give her, but, fortunately, we never had to use them.” According to Kim Hoy, the nurses tag-teamed together to keep Barbara alive. “My biggest chore was taking additional patient assignments in order to free up Amy. Or, at least that was my main role until the actual ceremony. Barbara was having a lot of problems with her blood pressure. She couldn't maintain a blood pressure to save her life—literally. We really wanted her to make it through the wedding, and because I am telemetry certified, I asked if it would be all right if I put her on the drug, dopamine, and titrated her blood pressure. We intended to keep her awake, so that she could see everything that was going on. Accordingly, in the midst of all this wedding stuff, I had her hooked up to the cardiac machine. I was watching her blood pressure cycle and I was carefully adjusting the medications. As her blood pressure dropped down, I would go up a couple of clicks, and she would plateau a little bit.” It was that kind of back-and-forth team effort that managed to get Barbara through the ceremony. “Our little patient lounge was set up as the reception area,” Amy explained. “The dietitian got flowers, lots of bouquets, for Jane and the others. It was truly like a … it was like a normal wedding in every sense, except for the mother who was dying. There were flowers, there was wine, and there was everything you would expect at a reception. “Jane marched in, they played the usual music, you know, ‘Here Comes the Bride.' And throughout the service, we kept Barbara in the back in case we had to make a run for it. She was critically ill, but she kept saying over and over again how happy she was. It simply thrilled me to hear those words. “Later, I caught a glimpse of Jane and Allen sitting on Barbara's bed and holding her hand. It was totally worthwhile. Barbara was ecstatic. She had gotten to see her Janie get married.” The decision to stop dialysis was made immediately prior to the wedding. The patient and her family later gathered in her room to share Chinese takeout meals, watch home movies, and reminisce. The wedding was on a Friday, and she died early Tuesday morning. In my mind, she had the kind of death that is sought as an ideal goal by modern palliative care practitioners. Her life was extended with the assistance of devoted clinicians and modern medical technology in order to allow the achievement of a long desired family milestone. Then, she died gracefully.