A Quality Life: How Palliative Care Helps You Live Well with Serious Lung Disease
After struggling with shortness of breath for many years, Betsy was referred to a special lung care clinic. Worsening symptoms limited her ability to remain active, which in turn led to anxiety and depression. She struggled to care for her home and visit with friends; and felt like a burden to her husband. Betsy’s world was getting smaller.
At the lung care clinic, she met Dr. Patty Fogelman, doctor of nursing practice – who is trained to treat lung disease and as a palliative care provider. At the time, Betsy, a retired nurse, didn’t have an in-depth understanding of palliative care. In the years to come, she and her husband, and their family learned how palliative care manages many symptoms, and eases the many burdens faced by those living with serious illnesses. It also meant that Betsy learned new ways to keep enjoying her life.
This is Betsy’s palliative care story.
Palliative Care Focuses on Improving Quality of Life
Before her diagnosis, Betsy was vibrant and social, enjoying every aspect of her life – from how she kept her home, going to craft fairs, and monthly brunches with friends. As breathing became more difficult for her, these activities became harder to do.
“Patients who cannot breathe are not just dealing with breathlessness. They’re also really tired and they’re often very anxious. Sometimes these symptoms contribute to depression. They often feel overwhelmed or as a burden to their families. The growing need for help in everyday tasks and activities can make them feel like they’ve lost their independence,” explains Dr. Fogelman.
In their earliest meetings, Dr. Fogelman’s focus was twofold: get to the source of Betsy’s illness, and understand how the symptoms were limiting Betsy’s daily activities. These two factors would lead to a plan of action so that Betsy could have the best quality of life possible, the main goal of palliative care.
What is Palliative Care?
Palliative care is specialized medical care for people living with a serious illness. This type of care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It’s appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. Depending on where you live, palliative care is available in a number of settings including hospitals, outpatient clinics and at home.
Through a battery of testing, Betsy was diagnosed with a type of lung disease where the lung tissues become stiff, prevent oxygen from circulating through the body properly. Dr. Fogelman assured Betsy that palliative care could help her control symptoms, and more.
This included Betsy’s enrolling in a lung rehab program to improve her lung function and increase her stamina. Dr. Fogelman prescribed medicine for Betsy’s anxiety and depression and worked in partnership with Betsy’s primary care doctor to modify medicine as needed.
Communicating with Other Medical Providers Improves Your Care
Advanced lung disease like Betsy’s can lead to complications that require other medical providers, and sometimes hospital stays. But palliative care teams remain involved and serve as a central source of connection and communication. They often have the most thorough insights into their patient’s medical conditions, symptoms, and what matters most on an individual level. They even coordinate a patient’s care with other providers.
It’s no surprise that Betsy made sure Dr. Fogelman was called for input and guidance for all of her medical care.
“We want to be part of making sure that every part of your life is as high quality as it can be. One way we do that is by working in partnership with your other providers to reduce your symptom burden,” says Dr. Fogelman.
Palliative Care Involves Patients, Families and Caregivers
Another unique aspect of palliative care is how it supports the patient and their families and caregivers. Each patient decides the circumstance under which others interact with the palliative care team. Betsy viewed her appointments with Dr. Fogelman as a time to privately share concerns about how her illness was affecting her life and relationships, and for help in communicating her condition and her needs to the ones closest to her – her husband Ralph and her adult children.
“The goal is to help you live the fullest life you can have. And once you let me know how you define that and what matters to you, my job as your palliative provider is to come up with problem-solving approaches to make that happen,” says Dr. Fogelman.
Each patient living with serious illness has individual needs and priorities, and the time connected to a palliative care team varies. But because of the many ways that palliative care provides an extra layer of support, and that the patient is seen as a whole person, it’s not unusual when the patient-provider relationship is as strong as the one between Betsy and Dr. Fogelman.
To learn more about palliative care and how it can help you or someone you love who is living with lung disease or another serious illness, visit GetPalliativeCare.org. You can also check out the Palliative Care Provider Directory, which lets you search for a palliative care provider in your area and by setting.