An interview with Dr Matthew Maddocks, Dr Daisy Janssen and Dr Kathleen Lindell
In the forthcoming ERS Monograph on Pulmonary Rehabilitation, Dr Matthew Maddocks, Dr Daisy Janssen and Dr Kathleen Lindell provide a comprehensive review of palliative care and pulmonary rehabilitation, which discusses the importance of both patient-centred care and an interdisciplinary approach.
In this interview, they tell us where their interest in the field began, how palliative care can be improved and what the future holds.
Matthew Maddocks is a physiotherapist and Reader in Health Services Research at the Cicely Saunders Institute, King’s College London (London, UK). Daisy Janssen is a physician in old age medicine and palliative care at CIRO (Horn, the Netherlands) and is Associate Professor at Maastricht University (Maastricht, the Netherlands). Kathleen Lindell is a pulmonary clinical nurse specialist and nurse scientist who holds the Mary Swain Endowed Chair in Palliative Care Health at the Medical University of South Carolina (Charleston, SC, USA).
- How did you become interested in respiratory medicine and palliative care? Was there a particular mentor or moment that developed your interest?
Matthew: Like most people in the field, I think we all agree that our interest in combining respiratory and palliative care came from a recognition that although people living with chronic respiratory disease have similar levels of symptom burden and disability to people with cancer, they receive less palliative care and have more unplanned hospital and intensive care admissions at the of end of their life.
Daisy: We’ve been lucky enough to be mentored by pioneers in this area: Professor Emiel Wouters, Professor Irene Higginson and Professor Randall Curtis, to name just a few.
- What is the best advice you have received and would pass on to someone at the start of their professional career?
Daisy: Always spend time on topics and questions that you care about and believe will make a difference to future care. Talk to patients and their informal caregivers and really listen to them to understand their challenges and needs.
Matthew: Collaborate and find like-minded people who want to work with you. Teams produce better work than any individual can alone, and will have a greater impact. They also give longevity to the work.
Kathleen: Get involved in your professional society to share your work, meet colleagues from around the world, and advance gathering data to drive best practices and improve care for patients and their caregivers.
- Who has been your greatest inspiration?
Kathleen: People who successfully combine clinical and academic work are hugely inspiring. They stay connected to the most current and challenging questions in practice, they ask relevant research questions and they produce information that can then be embedded into the clinic. They don’t put their scientific output first but instead are driven by the need to improve patient care, share knowledge and train a new generation of clinicians and scientists.
Matthew: Those with a long-term vision who are able to drive change. People who are not restricted by the current health system and workforce challenges, who see a better future that will provide equitable palliative care for all.
- Why is your chapter in the Monograph important? What does it tell us about palliative care?
Daisy: Our chapter is important because it shows how both pulmonary rehabilitation and palliative care are major components in the care of people with chronic respiratory disease. We uncover the many similarities in approach, including access based on patient needs and goals, a comprehensive assessment to provide person-centred care, and an interdisciplinary team-based approach to care delivery.
- How can palliative care in respiratory medicine be improved?
Kathleen: Some areas where palliative care could bring added benefit to respiratory medicine include the holistic management of chronic breathlessness, advance care planning and communication about end of life, and psychosocial support for the patient and family. Practical opportunities to include palliative care into pulmonary rehabilitation (and vice versa) include building knowledge and advocacy of both specialties and among clinicians, providing educational content for patient programmes, training and upskilling clinicians in symptom management and advanced communication, facilitating support groups, and in-reach consultation for individual complex cases.
- What do you think the challenges are around palliative care and pulmonary rehabilitation?
Matthew: There is still a need to increase awareness about what palliative care is, among clinicians and the public alike; that it extends well beyond the end of life and terminal care and is relevant early in the care continuum. This is especially important for respiratory disease, where the unpredictable course of many respiratory conditions and the difficulty in predicting survival are common barriers to timely palliative care discussions, referral and receipt. People must appreciate that palliative care is about living well with minimal suffering and that it is relevant alongside treatment targeting the underlying disease(s).
- Tell us about a case in which you have been able to see a real impact on quality of life due to palliative care. Do you have a patient that sticks in your mind and why?
Daisy: I will never forget a relatively young man with advanced COPD who was very ill when he came to our centre for inpatient pulmonary rehabilitation. He had a lot of anxiety and severe breathlessness, so I soon became involved as a palliative care physician. We talked about his limited life expectancy, which wasn’t a conversation he expected to have when he came for rehabilitation. During his time at our centre, we talked a lot about what was important in his life and about ways to cope with his breathlessness. We started with palliative treatment of breathlessness. We also had family conferences about advance care planning and coordinated care at home with his family physician. When he was discharged, sadly, he actually had deteriorated in physical outcome, but he and his family were so satisfied. They felt prepared for the end of life and had learned how to cope with his breathlessness. His anxiety was much less and he was able to have some quality of life. He eventually died in his own home, surrounded by his own family.
- What has been the greatest change to make a difference in the field in your lifetime?
Kathleen: Most important has to be the increasing awareness of palliative care and its benefits, especially earlier in the course of serious illness, like non-malignant respiratory conditions. Each time we teach or give talks about timely symptom-focused care and advance care planning in respiratory disease, we hope to stimulate a clinician to really have these conversations with patients and their families, and preferably teach it to their colleagues as well. In this way, we hope to improve care for patients that we cannot directly see ourselves.
- What does the future hold for palliative care in respiratory medicine?
Matthew: We should continue to see the gaps close between the routine care of people with cancer and non-cancer conditions.
Daisy: We hope for better availability and access to palliative care, from specialists and respiratory clinicians as primary care providers.
Kathleen: The quality of palliative care interventions for patients with chronic respiratory illnesses should also continue to improve, based on research. There should be more effective treatments for breathlessness, for example.
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To find out more about the ERS Monograph series, visit books.ersjournals.com