Carolyn Gartner, a hospice social worker, knew that a few things were in play when the husband of one of her patients declined to accept a hospital bed and oxygen tank, even though they would likely have made things easier for his wife who was bedbound and in her final weeks of life. When he said, "I don't want the house turning into a hospital," Carolyn read between the lines.
"I know he's hurting so much, and these things--a hospital bed, oxygen--are symbols that he is going to lose her," says Carolyn. "I worked with him to open up, to talk about how he and his grown children can make the most of the time they have with her. At this stage, they are not ready for the equipment, but they are becoming emotionally ready to begin the conversation."
For hospice to succeed in bringing quality of life to the end of life, members of our hospice team work hard to meet people where they are emotionally. By listening, by observing, by asking the right questions at the right time, good hospice workers like Carolyn can recognize where patients and loved ones are in the process of preparing for end of life and can then take the right opportunity to help, support and educate.
At Visiting Nurse Service of New York Hospice and Palliative Care, we often begin a relationship with a new patient by asking him or her, as well as family members, to describe the illness and the prognosis as they understand it. This gives us a pretty good idea of where we can begin our conversation. The goal is to make sure the patient and family share an understanding about the current state and expected course of the illness, and that this understanding matches that of the care team. We can then have patients and family members outline their goals of care and begin to chart a course in the final months of life. We also ask family members and loved ones to define their relationship to the patient, and we listen carefully and observe body language to help guide our conversations.
Hospice Nurse Denise Smith vividly recalls being asked by an adult daughter whose mother was dying, "Do you think she's going to get better?" "I sat down next to her, held her hand and gently said, 'No,'" recounts Denise. "She looked me straight in the eye and thanked me. I quickly added that there were some good things that can happen. Her mother was still alert, still had time to enjoy her family. The conversation let them begin packing what they could into a limited time."
Our hospice workers know how to balance hope and help. If a patient wants to travel through Europe or run a marathon, that might not be possible. But a clinician might work with the patient to get to her favorite museum or take grandchildren to the zoo, something that lifts the spirits greatly.
A human touch: pictures on the wall
Meeting people where they are also means creating an environment in which they can be who they are. This is especially relevant in the LGBT community. For older Americans who are lesbian, gay, bisexual or transgender, the last chapter of life may reflect a lifelong isolation, including from family, religion and society. VNSNY Hospice nurse manager Ekaterina Huelster says she recently learned a lesson she will never forget on the power of acceptance when she cared for a man in his sixties at the end of his life. When she first arrived in his home, he introduced the man who seemed to be caring for him as his roommate.
"Something told me they were not just roommates," she recalls. "I asked how long they had been roommates, and he said, 'Twenty years.' I could tell by their body language how much they cared for each other, even though the roommate stood about 15 feet away when we first came in."
Ekaterina broached the subject with both men of how deeply the roommate should be involved in the care. Over the next few visits and through questions that were both open-ended and as simple as what the roommate preferred to be called, the hospice team and the two men arrived at a mutual understanding, fueled, Ekaterina believes, by the hospice team's welcoming and supportive attitude. "I said to the roommate, 'You can hold hands and say "I love you." You can help with the care and choose the music he listens to,'" Ekaterina explains. "It was a difficult conversation, because he could have kicked me out of the house. But he held out his hand, and they both thanked us very much."
This, Ekaterina came to understand, was in stark contrast to alienation the men felt for most of their lives from families and neighbors. So uncomfortable were they in being open about their relationship that there was not a single photograph--of either man, and certainly none of them together--on the walls of their home of 20 years. Ekaterina sought to remedy this, too, if the couple agreed. Indeed, they did. So hospice volunteers framed photographs of the men and decorated the house, which began to look more like a home. "They'd been judged all their lives,"" says Ekaterina. "I felt so honored to be part of their lives and part of celebrating who they are."
'But in the meantime...'
Meeting people where they are also means being sensitive to cultural attitudes toward death and dying, while slowly introducing conversations that can improve communication and acceptance of end of life. In Asian cultures, for instance, families believe it is bad luck to acknowledge or speak of death. And in certain Hispanic cultures, a forceful belief that life is in God's hands can put families at odds with hospice, at least initially. Yveliz Panuccio, a hospice worker of Dominican and Argentinian background, quotes some of her patients' families as beginning the conversation with: "'Can you believe the doctor had the nerve to tell me my mom is dying? Only God can tell me that."
Yveliz was once resistant to hospice care herself but came to see how profoundly it comforted her family when her father was dying. She brings this perspective to her work with diverse patients, including many Spanish-speaking families, at Elmhurst Hospital in Queens. "I know exactly what they're thinking," says Yveliz. "I know exactly why they're holding back. It's in our culture; it's threaded in our religious beliefs."
To meet them where they are emotionally, she respects their perspective while also explaining how it can coexist with hospice's palliative end-of-life care. As she discusses care options with patients, she says, "You're absolutely right. Nobody has the last word except God. But in the meantime, we want to help you take care of your Dad." That two-part approach opens the door to discussing the day-to-day resources and support that hospice provides.
A bed is more than a bed
Meeting people where they are means weighing the sentiments and pull of life with the reality of end of life. As Carolyn found, this can involve something so everyday as the patient's bed. For long-married couples, a bed can represent comfort and reassurance, steadfastly staying by a spouse's side. "I've had people say, 'I want her to know I'm in bed next to her, that she can reach for me,'" says Carolyn. "That's so moving."
In some Hispanic families, she has noticed, an adult daughter might spend the night in the bed with her mother--to make sure the daughter can give care and reassurance through the night. Here, too, the conversation about the hospital bed is freighted with additional meaning and one Carolyn wades into slowly, listening and guiding with care. "I will work with them to discuss the clinical advantages of a hospital bed, but we respect people's wishes and what works for them.
Similarly, Denise, the hospice nurse, followed a family's lead when the father took his 26-year-old daughter out of the hospital bed and put her on the couch for what turned out to be her final night--something that he, with a loving parent's intuition, may have known. "He held her hand and she died that night," recalls Denise. "They gave that child a wonderful life and a good death."
By meeting people where they are emotionally and supporting them through the final weeks and months on their terms, we strive to help them achieve what we call a good death--dying as you have lived, surrounded by loved ones and in the place you most want to be. We tend to focus on physical symptoms, yes, but often the work begins and ends with emotional support. As Ekaterina put it so well, "Physical pain can be managed by medication, but emotional pain--making sure someone is comfortable emotionally--is much more challenging."