A Quality Life: How Palliative Care Helps Joni Live Well with COPD
Sixty-six year old Joni knows all too well that living with the lung condition called chronic obstructive pulmonary disease – or COPD – can be stressful. The main symptom is shortness of breath, which worsens over time. The disease and treatments also cause coughing, wheezing, tremors, and emotional effects, such as anxiety and panic attacks, depression, and insomnia.
When Joni’s lung doctor of more than a dozen years referred her to a palliative care doctor, the goal was to address the worsening symptoms from the illness and its treatments, and help Joni live her life in the fullest way possible.
This is Joni’s palliative care story.
Palliative Care at Home
When Joni learned that having palliative care meant that an additional specialist would join her treatment team – and that in her community, this doctor would come to her home – she agreed to an appointment. Joni didn’t know what palliative care was, so she asked many questions. Joni soon learned that the addition of a palliative care doctor would tackle some of the most challenging symptoms, help her regain some independence, help coordinate her medical care, and improve her overall quality of life.
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 is 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.
According to Kate Tindall, MD, Joni’s palliative care doctor and the medical director at Austin Palliative Care in Texas: “We recognize that when you’re dealing with serious illness, it’s incredibly cumbersome to get to a clinic appointment. And, a lot of these people have multiple clinic appointments. Joni has a primary care doctor. She has a lung specialist. She’s got a heart specialist. We didn’t want to add to the stress of one more visit that she has to get ready for.”
A Change in Medicine Eased Joni’s Breathing and Reduced Side Effects
Working with Joni’s other doctors, Dr. Tindall’s first step was to make a change in Joni’s medications to address symptoms and reduce troubling side effects. Fifteen years into living with COPD, Joni found herself feeling panicky and distressed by the severe shortness of breath she was experiencing. This led to more frequent doses of the steroid inhaler prescribed to ease the breathing. This, in turn, caused tremors so severe Joni could barely hold a coffee cup. She was mostly house-bound and less able to take care of even simple daily activities.
“We talked about using opioids or pain medications. They’re very effective at addressing that sensation of shortness of breath — not just to help people feel better, but actually to help people function more,” explained Dr. Tindall.
Joni went from being able to move around for just a few minutes at a time to being able to do something for 20 minutes. And when she got that sudden chest tightness and sudden shortness of breath, she had the ability to control it with the new medicine. Dr. Tindall was then able to move Joni off the medicines that caused the side effects.
Energy Conservation Puts Focus on Quality of Life
Dr. Tindall also worked with Joni on ways to conserve her energy, which allowed Joni to spend time doing what brought her the most pleasure.
“We focused on what could be adjusted, like moving a coffee can to a lower shelf so it only takes one minute instead of five to make coffee in the morning. We also talked about outsourcing things like house cleaning and meal preparation, to allow for more time playing with pets or spending time with family,” described Dr. Tindall, about some of the strategies she recommended to Joni.
Palliative Care – There When You Need It
Appointments with palliative care teams are based on patients’ individual circumstances, so visits happen regularly or as needed. In many cases, weeks or months can go by when patients manage their lives and medical needs independently. But knowing that the palliative care team is always reachable can be a great relief.
This became evident to Joni when she came down with a fever and breathing was even more difficult than usual. She just didn’t have the energy to advocate for herself and needed help reaching her various doctors. She was able to connect quickly with Dr. Tindall, who stepped in to coordinate Joni’s care.
“We scheduled a visit right away and realized she needed help coordinating her care. So we reached out to her primary care doctor, set up an urgent care visit, and got her the medicine she needed. We also coordinated all of this with her lung specialist as well,” recalled Dr. Tindall.
“It’s wonderful when we get to take that stress off the patient for having to be their own advocate and be the intermediary between multiple doctors. I think it’s a real relief to them to be able to hand that off to somebody else,” she added.
More People Need to Know About Palliative Care
Joni knows that having a serious illness, like COPD, comes with ups and downs. But the addition of a palliative care doctor on her team restored her ability to have a positive outlook and helps her feel that she can fight on. She tells her family, neighbors and even her other doctors that more people need to know about palliative care.
That’s something Dr. Tindall completely agrees with: “What I hope people understand about palliative care is that what we do is based on what you need from us. It’s not always one thing. The things that we do in terms of symptom management can be life changing. And whatever we encounter, we’re going to be right here next to you, and we’re going to tackle it together.”
To learn more about palliative care and how it can help you or someone you love who is living with COPD or other serious illnesses, 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.