Breathing Easier at End of Life

Each night before bed, Walter Berger and his wife, Merle, painstakingly check, recheck and triple check the connections on his BiPAP (bilevel positive airway pressure) machine, which helps regulate his breathing. This is one of the couple’s many routines that help alleviate anxiety and keep Walter as comfortable and symptom-free as possible in his New York City home as he lives with advanced chronic obstructive pulmonary disease (COPD).
Walter is one of the more than 15 million Americans with COPD, a chronic illness characterized by decreased airflow in and out of the lungs, shortness of breath, fatigue, chronic cough and frequent respiratory ailments. In its latter stages, the disease can erode quality of life as a patient’s struggle to breathe encroaches on almost every element of life. Patients usually become dependent on supplemental oxygen and can grow isolated and anxious. Advanced COPD patients often cycle in and out of the hospital: $50 billion is spent each year on COPD expenditures, including $13.2 billion in acute hospitalizations.
Walter, however, has not been to the hospital since he’s been enrolled in hospice, and remains relatively active at home, despite the severity of his condition. Thanks to clinical, emotional and practical support he receives from an integrated care team, he can remain home, amid art and books, surrounded by his wife and family, and get out into the neighborhood regularly. His wife, too, receives support to help her navigate the physical and emotional stresses of caregiving.
Meeting an Unmet Need — for Millions of Americans
Today, more Americans will die of advanced-stage chronic illnesses than from acute illness. Because they may have been living with these chronic diseases for years, many patients do not connect with the appropriate level of care at the most advanced stages of their illness.
To address these unmet needs, the Visiting Nurse Service of New York’s Hospice and Palliative Care division, where I work, has created a specialized program designed to reduce hospital visits and enhance quality of life for patients with advanced COPD. This first-of-its-kind-in-New-York program joins another specialty hospice program we initiated for people with advanced-stage cardiac conditions like heart failure. The goals of both evidence-based programs are three-fold: to improve patient and family satisfaction through better care; to better manage the symptoms of these late-stage illnesses and keep patients healthier longer; and to reduce hospital visits, keeping patients at home where they want to be and reducing the economic and human toll of excessive hospitalization.
The COPD program is specially tailored to address life with the advanced condition, including the most frightening symptom for patients and their caregivers: severe shortness of breath. Our COPD hospice team helps patients and caregivers manage medications, whether delivered orally or inhaled; create an optimal environment — using their oxygen as needed and alternative comfort measures such as fans, positioning and breathing exercises; and understand the symptoms and trajectory of the illness, including knowing when to call for extra help.
“It’s a great comfort to know that if I have any questions or anything serious happens, I can call and there’s an immediate response, whether they give me a solution over the phone or send someone over immediately,” says Merle. “When you have all this responsibility and you know there’s someone you can call, that’s a big, big relief for the caregiver.”
She reaches out to her husband’s care coordinator Cristina Sava, RN, if Walter has increased shortness of breath through the night, needs medications refilled or reevaluated, or is low on portable oxygen tanks that he uses when he leaves the apartment (which he aims to do every day). The care team also address needs beyond the clinical. Recently, Walter, a retired architect, confided to Cristina that he’s frustrated with his inability to spend as much time as he’d like doing the things he loves — writing, painting, photography. She discussed bringing in a hospice volunteer with like interests to help him in those pursuits, which would also give his wife time to attend to herself. Cristina also suggested he reframe his goals; rather than assessing his accomplishments daily, take a more forgiving measure, perhaps over three days, or a week. “We told him we’ll help him come up with a plan,” she says. “He was comfortable with that.”

As with all our hospice services, at the core of care is an integrated interdisciplinary team that works closely with the patient’s own doctors, as well as the family, to meet the patient’s goals of care. Team members include a nurse care coordinator like Cristina, nurse practitioner, hospice physician, social workers, spiritual care counselors, and, as needed, respiratory therapists, bereavement counselors, and hospice volunteers. Hospice team members receive additional training in techniques for relieving COPD-related symptoms such as anxiety and depression. For Walter, the team also includes a home health aide, Diane Canning, from our affiliate, Partners in Care, who helps with activities of daily living and whom Merle Berger credits with providing wonderful, companionable support to her husband while also giving her much-needed relief from the stresses of caregiving.
The team meets every week, bringing the full breadth of insights and expertise to bear on each case and ensuring the team is meeting each patient’s needs and goals. “Whenever we meet, the lead goes back and forth, depending on the patient’s needs at the time,” explains Fran Dooley, Walter’s hospice and cardiopulmonary nurse practitioner. “The social worker might lead the discussion if we’re talking about family needs, or the physician if clinical needs and medication top the list. I’ve been a nurse for over forty years in every type of care situation, and the expertise of the interdisciplinary hospice team is the most important differentiator for this level of care.”
Transitioning from Chronic Care to End-of-Life care
Contrary to an all-too-common myth that hospice is appropriate only in the final few days of life, studies have in fact shown that earlier referral to hospice can result in better management of symptoms and stabilizing health, which in addition to better quality of life can also lead to prolonged survival. Patients are eligible for hospice benefits, with a doctor’s referral, when their condition and prognosis suggest a life expectancy of six months or less. A prognosis is only an estimate, and patients can be recertified after six months; Walter has been enrolled in hospice for more than a year.
When is the right time, then, in the trajectory of a chronic illness, to introduce the idea of palliative care, which focuses on symptoms and comfort, and/or hospice? The following signs may indicate that an individual is entering advanced COPD and would benefit from specialized hospice and palliative care services:
· Cycling in and out of the hospital, or having extremely frequent doctor’s visits
· Decline in daily function
· Extreme weakness, fatigue or weight loss
· Frequent dyspnea (shortness of breath)
· Continual changes in medications
“When patients realize that each time they go to the hospital, they come home and things are getting more and more difficult, it’s time to introduce difficult conversations about exploring patient goals and what they want for their final days at home,” says Fran.
Conversations can be initiated by the patient’s specialist or primary care physician, a palliative care physician at the hospital, family members, or patients themselves. In Mr. Berger’s case, his long-time pulmonologist noticed that it was getting increasingly difficult for his patient to get through the day, and suggested he and his wife consider hospice benefits.

“Patients with COPD have been dealing with it for a long time — 13 years, in our case,” says Merle. “A lot of the success depends on the patience of the patient — my husband is an angel, he really is — and the quality of the care they receive.” She feels grateful that at this stage of the illness, her husband can remain at home and out of the hospital. She feels such peace of mind knowing that he’s getting the right care that she was even able to, with emotional and logistical support from the care team, take a much-needed summer trip recently to visit family in California. “I saw two of my three children and four of my six grandchildren,” she says. “You certainly can’t complain about that.”