Each night before bed, Walter Berger and his wife, Merle, painstakingly check, recheck, and triple check the connections on the machine that helps regulate his breathing. This is one of the couple’s many routines that help relieve 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).While advanced COPD patients often cycle in and out of the hospital, but Walter has not been to the hospital since he has been enrolled in VNSNY hospice, and he 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.
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. 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, VNSNY Hospice and Palliative Care has created a specialized program designed to reduce hospital visits and enhance quality of life for patients with advanced COPD. This 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.
“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 S., 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 VNSNY 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, from VNSNY’s private pay affiliate Partners in Care, who helps with activities of daily living and whom Merle credits with providing wonderful, companionable support to her husband while also giving her much-needed relief from the stresses of caregiving.
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 can also lead to better quality of life and longer life.
“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 Dooley, Walter’s hospice and cardiopulmonary nurse practitioner.
“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.”