Much can be done to improve the management of breathlessness in patients with chronic lung diseases beyond usual medical care, the ATS 2018 meeting was told.
Respiratory physician Dr Tracy Smith and clinical nurse consultant Mary Roberts reported on their experience in the multidisciplinary breathlessness clinic at Westmead Hospital in Sydney.
They said about 90% of patients with conditions such as ILD or COPD admitted to breathlessness but many more did not report symptoms, reduced their activity to avoid breathlessness or did not want to bother doctors with their concerns. Many also carried guilt related to their disease.
“We need to show empathy and say we can help,” Dr Smith said.
She told the limbic the clinic focused on a very broad range of breathing exercises and physiotherapy-led interventions to help make people’s breathing more efficient.
However earlier referral to the eight-week program would help patients.
Some patients required psychological referral due to persistent breathlessness and high anxiety or depression scores at the end of the program but very few patients required pharmacological intervention.
“We are more getting more later referrals than we might like,” Dr Smith said.
“It’s often the last resort when the patient has had 17 admissions. If we could get them at their second or third admission then we can teach them skills that they can use for the next five years,” Ms Roberts added.
Their tips for setting up a similar clinic:
- Visit other services, sit in and see what they do. Be curious.
- Decide on the patient group e.g. COPD, ILD and cultivate referrals. Consider referrals from nursing and allied health or even self-referrals as well as doctors.
- Hire a good team and then listen to their unique perspectives.
- Invest in education so everyone is delivering consistent messages.
- Know the evidence and aim for quick wins e.g. use of fans.
- Don’t attempt to do too much in eight weeks. You can’t do breathlessness, advance care planning and pharmacological interventions…
- Be a fan of the fan but know that they aren’t all equal. Test out a lot, decide on the best and recommend that one.
- Develop local patient resources. Write it, edit it, make it simpler then seek patients’ feedback. Edit it again.
- Think about how to assess clinical improvement e.g. mastery of breathlessness, quality of life, admissions, etc.
- Just do it. It will feel clunky at first.