At End of Life, ‘Home Is Where the Heart Is’

03/24/2017 12:47 pm ET

In the final weeks of his life, Fazil Khan’s large family—which includes 12 children and 29 grandchildren—just wanted to spend time with him. In the hospital near his Queens home, only one family member at a time could be in the room with him and that person had to wear a hospital-issued gown. In the nursing home where he spent a short time, no one could spend the night, despite his granddaughter Naseebah’s wish to keep him company overnight.

When the family arrived at VNSNY Haven Hospice Specialty Care Unit, “everything changed the second we walked in,” says Naseebah. “There was a calmness to it. It was such a peaceful, relaxed environment that everything became easier. I cannot to this day understand how that happened.”

Theresa Feeney, the director at the Haven, has seen this transformation happen for countless families, who come in overwhelmed and confused, seeking short-term symptom management, only to realize they have landed at an inpatient facility where the sole purpose is to provide the highest quality end-of-life care. “This is a magical place,” she says, quoting one of Haven’s former physicians. “The relief that families feel is amazing.”

A warm, welcoming facility designed to promote dignity, comfort and quality of life, Haven is a homelike environment that invites families and loved ones to make the place their own—to stay all hours of the day if they’d like, or take a brief respite during a stressful time. An integrated hospice team, including physicians, nurses, social workers and, if desired, spiritual care counselors, provides needed care while respecting each patient’s choice about interventions.

“Your loved ones come in at their worst, and, even though we can’t stop the underlying illness, we work to restore quality of life, whether that’s eating again, walking or being able to communicate,” says Theresa. The ability to have a conversation with loved ones is especially important, she adds, because time together is limited.

One Family’s Story

The Khans’ story beautifully captures the environment, mission and expertise of VNSNY Haven Hospice Specialty Care Unit, a place wholly committed to meeting each patient and family where they are—physically, emotionally, spiritually.

Fazil Khan had made it clear to his family that at the end, he wanted a natural death at home. But when he had a stroke at age 86 things did not go as planned, and he ended up intubated, in and out of hospitals and, briefly, a nursing home. His health improved intermittently, enabling him to visit his newborn twin grandchildren out of state. When his health declined again, his family moved him to hospice care at home, and were relieved that he could be surrounded by abundant loved ones in the place he most wanted to be.

When Mr. Khan’s health took a turn for the worse, however, his physician and the hospice team caring for him felt he would be better off with round-the-clock pain t and symptom management that is possible only at an inpatient facility. They recommended VNSNY Haven, which is located in a separate, specialized wing of NYC Health + Hospitals/Bellevue. “At first we were adamant that we didn’t want him to go,” Naseebah recalls. They wanted him at home, or, if he had to be in a hospital, then it needed to be one near their Queens residence.

Any qualms disappeared when the family walked through Haven’s doors. They felt enveloped in a welcoming environment, filled with natural light, a sense of peace, and a compassionate and forthright expertise delivered honestly and humanely. “Everyone on the hospice team was so informative with all of us,” says Naseebah. “They knew the dying process, and they’d clearly explain what was happening with him at all times.”

His family was encouraged to gather, and gather they did. They set up shop at Haven, eating their meals there, sleeping there. Seven of his 12 children were able to be with him when he died. “We could see the difference in him,” Naseebah says. “He always said he wanted to die at home. But, as a member of the hospice team told us, “Guess what? Home is where the heart his, and right now this is your home.’ They were right. All his heart was there. All the people he loved were there, and not once did anyone tell us we couldn’t stay.”

For the Khan family, the transition was profound. Before going to Haven, Mr. Khan was not eating, taking his medications or communicating, looking away rather than making eye contact. “After two days in Haven, he was communicating, he was smiling,” Naseebah recalls, adding that she and her family treasure the smiling photographs they took during this time together.

In the final days, they invited a scholar close to the family to perform rites and rituals in the Muslim tradition, which was important to Mr. Khan, a religious man. This stood in contrast to the hospital where he first stayed, which offered the family a chaplain. Although the chaplain offered to “pray in any religion,” the family wanted a Muslim official of their choosing. “The fact that my grandfather got to die with those final rites is a blessing and an honor,” said Naseebah.

In the Hands of Experts

Months after Mr. Khan’s death, Naseebah notes that family members who were at Haven with the patriarch when he died are having an easier time in grief than those who could not be present, which is consistent with many studies of hospice care. “You don’t usually describe death as beautiful,” she says. “But the calmness and the peace, the closure that we all had… It was so nice to see this family, who’d gone through so much pain in the previous six weeks, all of a sudden became one family.”

It’s just this sort of beauty, this closure, that our hospice teams work towards with each patient, with every family. Theresa, the Director at Haven, recently shared with me several such stories, including the closure one family felt when the hospice team was able to bring a young grandson, incarcerated in a prison six hours away, back to see his dying grandfather one last time.

In another case, she recalls the utter despair of a wife who told her, “I just don’t know what to do, I just don’t know what to do.” After all, although death is universal, there is no template of experience for most of us. While many people have experience taking care of loved ones as they heal and regain independence, far fewer have cared for someone in the final days, when the goal is not to get back on your feet but rather something less clear.

This is where the experienced assurance of end-of-life experts can make all the difference. Theresa wrote down on a piece of paper four simple phrases, coined by palliative care physician Ira Byock: “Please forgive me,” “I forgive you,” “Thank you,” and “I love you.”

The wife was enormously grateful for that concise emotional prescription. She told Theresa, “He was at such peace, I was at peace. It was beautiful.”

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