The Pulmonary Fibrosis Foundation offers a Disease Education Webinar Series from which patients and caregivers can learn more about pulmonary fibrosis from leading experts, as well as connect with and ask questions of them.
In the webinar “Pulmonary Fibrosis and Mental Health: A Road-map for Coping,” Deborah A. Gillman, PhD discussed mental health issues and effective coping strategies for adults living with PF. Dr. Gilman is a clinical psychologist and the founder of an outpatient mental health program at the University of Pittsburgh’s Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease.
The webinar was hosted by David J. Lederer, MD, MS, former Senior Medical Advisor for Education and Awareness for the PFF.
Below is a comprehensive outline of the roughly hour-long webinar.
Chronic illness and mental health
- Gillman begins by stressing there are many ways of responding to and coping with PF. Not all patients require professional counseling. But many may seek counseling for dealing with issues such as breathlessness, loss of independence, and disease course uncertainties.
- Research shows that depression and anxiety are higher in chronic illness, with panic and anxiety especially common in respiratory disease (as much as 38% of patients versus 18% in the general population).
- More specifically, one 2013 study on mental health of IPF patients showed that nearly half were depressed and; women were more at risk. Age and level of disease severity did not predict depression; in individual patients.
- Interviews of people with IPF show that they struggle with managing many issues ranging from chronic cough, shortness of breath, and limited function, to relationship impacts and caregiver struggles.
- A 2014 research editorial said that depression and anxiety need special attention in interstitial lung disease because of their frequency with breathlessness. Repeated screening and symptom management were advised to sustain and/or improve function with IPF.
- The stages of grief one goes through in adjusting to the loss of a loved one can also be applied to adjusting to PF: denial, anger, bargaining (“what if” and “if only” questions to negotiate our way out of pain), depression (not the same as clinical depression), and acceptance (though not being okay). These emotional states are fluid and can be viewed as signposts that help us describe what we’re feeling.
- Gillman emphasizes patients should feel they have “permission” to express grief even when feeling they are coping well. “Feelings do not follow rigid rules, but come up and are influenced. You have to have permission to feel different ways.”
- Patients are often referred for counseling after expressing grief or if feeling they are not coping well. But again, feeling sad is not the same as clinical depression; the latter involves emotional instability such as frequent crying, feelings of hopelessness/despair, and changes in sleeping or eating, for example.
- In PF, breathlessness plays a big role in depression. In other research, 12 of 52 ILD patients showed signs of depression related to moderate shortness of breath and function. Again, frequent screening for and treatment of depression was advised.
- A PF patient may look depressed from being breathless and losing function, but not actually be. A person’s overall health status must be considered (example, is the patient using enough oxygen to avoid undue tiredness?).
Depression evaluation and treatment
- In assessing and treating depression, besides knowing the PF patient’s state of mind before diagnosis and any past treatment, it is important to consider whether the patient’s and/or caregiver’s goals for living with the disease are both being met or if there is a conflict. A conflict in choices being made, for example, could result in the patient appearing depressed or anxious.
- Available treatments are talk therapy; using resources and exploring further supports (example, local support groups through the Pulmonary Fibrosis Foundation, faith community); medication; and initiating behaviors we know we should do, which can often bring us closer to feeling better than if we were to keep delaying them (“the value of doing”).
- Initiating good behaviors, or “behavioral activation,” involves scheduling activities one may not feel like doing but can make a big difference in reducing social isolation and feeling better.
- Anxiety is how the body responds to fear. It is likely to occur in PF.
- Anxiety often accompanies impaired breathing because the same part of the brain controls both systems. Moreover, the fear caused by breathlessness conditions a person to become anxious.
- Anxiety is rooted, therefore, in the mind-body link.
- Triggers for anxiety in PF include breathlessness and breath-holding (bodily); scary events and bad news (environmental); and worries, fears, or emotional difficulties (mental).
- Available treatments are talk therapy (discussing anxiety triggers, for instance); behaviors that help manage breathlessness-related anxiety (example, diaphragmatic or “belly” breathing); using resources and exploring further supports; medication; making the most of oxygen therapy; and conditioning, as through pulmonary rehab. All these methods can help reduce anxiety to a more manageable level.
- Everyone is different. Just as not everyone with PF is depressed, not all PF patients will have significant anxiety and require treatment. There are many ways to live with disease and cope.
- Regarding obsessing over future disease progression in PF, Dr. Gillman notes there are cognitive therapy skills to help adjust our thought process and turn from worrisome thinking. Certain medications can also be effective for intense anxiety. Professional consultation is advised to determine what level of intervention is needed.
Treatment types other than psychotherapy/counseling
- “Active coping” is being proactive about self-care to live better with a disease.
- Begin by asking what you may be already doing that brings a sense of competence, joy and strength, which could range from maintaining one’s job to soothing music, prayer, or time with loved ones. Coping is often about “piecing together the small things that help.”
- Pulmonary rehab is a great example of active coping because it is a scheduled activity (behavioral activation), reduces isolation, and provides physical exercise while fulfilling a pre-transplant requirement. Research shows improved quality of life in IPF patients who attend pulmonary rehab.
- Support groups are very effective, offering advantages such as being understood by those in a similar situation, gaining different perspectives and information, and sharing in each other’s struggles. (Research does show, however, that sharing personal experiences can be difficult for some, while listening to other’s struggles can increase worry.) A local support group can be found through the Pulmonary Fibrosis Foundation.
- Popular today, mindfulness is one kind of meditation practiced widely in medicine with proven mental health benefit. The opposite of multitasking, it is learning how to find a focal point for calming the mind and becoming aware of one’s thoughts, sensations, and breath (not breathing). It is not a relaxation or religious practice (but draws from Buddhism) and, while not easy at first, many people find it to be helpful.
- Mindfulness resources include local mindfulness-based stress reduction (MBSR) workshops (typically an eight-week group program) at clinics, hospitals, and through private practitioners. Other resources include the apps calm and buddhify, and publications by John Kabat-Zinn and Saki Santorelli. One can also search online under “mindfulness in everyday life.”
Seeking counseling—when is it time?
- Professional counseling should be sought for cognitive therapy (mentioned earlier); if feeling too overwhelmed or anxious; poor functioning beyond expected sickness-related changes like labored breathing; relationship concerns; feedback from loved ones or a provider; to reduce stress on caregivers; if a private setting is desired to vent concerns; and with unhealthy coping, such as excessive isolation or drinking, not using oxygen and restricting activity, etc.
- Counseling can help move a person to better coping and thinking, as through cognitive therapy—a patient should ask prospective counselors of their training and experience in this area. Such therapy may focus on life issues or the disease, involve family and medication, and be short-term or ongoing. Medication for depression or anxiety may be decided by a provider before a counseling referral.
- Seek a qualified professional such as a licensed mental health counselor (LMHC). If that person is willing to commit and speak with your doctor to learn more about PF, one specializing in lung disease may not be more beneficial.
- Example ways of finding a counselor are word-of-mouth, friends, a pastor, hospital, and online.
- A six-week coping intervention of people with IPF and their caregivers at the University of Pittsburgh in 2010 found reduced symptom burden and improved quality of life. Patients felt more connected and gained perspective, for example, while caregivers felt less stress.
- Research on PF caregivers found that half felt they had no choice in their caregiver role and struggle to find relief with, for example, changes in division of household tasks and increased fears and frustrations concerning patient needs.
- Caregivers should consider similar treatment options: talk therapy, methods for moving toward active coping and self-care to deal with depression and anxiety, including medication, and expanding one’s support system and resource pool.
Dr. Gillman concludes by noting we are shaped by our differences which affect how we deal with illness. Some have an easier time asking for and accepting help. But she hopes those “getting a message that things need to be a little different” can listen and obtain the help they feel is right for them.
The webinar can be viewed at:
Patients can email any questions to the PFF’s Patient Communication Center at firstname.lastname@example.org.