Living Life to the Fullest,  Right Up to the End

by Rosemary Baughn, Senior Vice President, VNSNY Hospice and Palliative Care

As someone who’s been in the hospice and palliative care field for 25 years, I have seen so many people who are able to live life fully, to grab it, take it, hold on to it — right up to the very end. That doesn’t mean that at the end of life they are climbing mountains or running marathons. It doesn’t even mean they are defying death. But, rather, they are fully and essentially themselves, doing what they love as best they can and valiantly sharing what is important to them with family and friends.

The True Value of Hospice

I want to tell you about one such person, Michael Lieber, a writer and teacher who was a recent patient of ours at VNSNY Hospice and Palliative Care. His embrace of life moved me and reminded all of us working with him that the true value of hospice comes in not only helping people die but also helping them live.

The value of hospice care deepens and expands over time, and is more likely to lead to what we call “a good death,” however the patient and family define it.

Michael had a dramatic reading produced while he was in hospice care. He received a steady stream of friends coming to visit, who played a big part in Michael’s emotional and intellectual bounty as they had in earlier times. “Everyone who visits feels like they’ve been touched by him, that he’s given something to them,” said his wife, Tiffanie Morrow. “He was always suggesting things to read, places to investigate. He was an explorer, and he liked to share his knowledge, to pass it on.”

Michael was cared for with great attention by Tiffanie, who deepened her own understanding of life by being present with Michael at the end of his. “There’s a beauty in death because there’s a beauty in life,” she says. “It’s very difficult, but I also see it as a sacred experience. There should remain a dignity and holiness about dying. It makes me feel very close to the world and to life.”

Although Michael was in his final months when the VNSNY Hospice and Palliative Care team began providing him with care, we very much knew him in life. VNSNY Social Worker Joel Karlin sensed that the two of them were kindred spirits from one of the first intake questions. We always ask about religion (if a person cares to tell us), and Michael noted that he was a cultural, non-observant Jew. “A Woody Allen Jew or a Philip Roth Jew?” Joel asked.

“He just loved that question,” Joel recalls. “Philip Roth was his favorite writer and was exactly who he wanted to talk about. From the start, we had an immediate connection.”

Tiffanie saw the connection, too. “Joel knew Michael right away, what kind of thinker, what kind of person he was.” In fact, Tiffanie noted, there were some areas of Michael’s life, including details of his family’s history in World War II-era Europe and an understanding of certain books, where Joel knew more about her husband than she did.

Joel was able to nurture that relationship because of the nature of hospice services, which is unique, I believe, in the field of health care. Because our objectives involve strictly comfort and quality of life, a number of daily pleasures — deep conversation, sharing book and movie suggestions, talking about family and history and a life well spent — fall squarely within our core competencies.

The Benefits of Time

Michael’s five months in hospice care were longer than most people receive such services, and Michael — and Tiffanie — appreciated the value of that stretch of time. It gave Michael expert care, symptom relief, and questions answered, as well as emotional and even intellectual support, as he and Joel swapped books and book recommendations, literary and cultural conversation, and plenty of pun-filled Borscht Belt jokes.

While hospice services are available for patients with any condition that their physician believes will claim life within six months, the majority of those enrolled in hospice nationwide receive care for no more than two months. The greatest proportion of hospice users are enrolled for seven days or fewer, according to the National Hospice and Palliative Care Organization’s findings on Medicare patients — mainly because they wait longer than they need to do avail themselves of hospice’s invaluable benefits.

The emotional support and pain management expertise that hospice offers can make an enormous difference for patients and their often-overwhelmed families — and every day, week, and month counts when adding to a person’s quality of life. Michael is proof of what many of us in hospice believe: The value of hospice care deepens and expands over time, and is more likely to lead to what we call “a good death,” however the patient and family define it.

For Michael, that included the value of being truly known. “I don’t think he let just anybody in,” says Joel. “But he did let us in. And he inspired me every time we met.” That connection is worth nurturing — and also passing on.