Supporting Patients with COPD Initiating Home Non-invasive Ventilation
Research type
Research Study
Full title
What are the Barriers to Advance Care Planning for Patients with Chronic Obstructive Pulmonary Disease referred for Home Non-invasive Ventilation from a Patient and Healthcare Professional Perspective, and how can these be Addressed?
IRAS ID
266846
Contact name
Emily J Kavanagh
Contact email
Sponsor organisation
Newcastle Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 4 months, 0 days
Research summary
Research Summary
This research aims to find out patient and healthcare professional experiences and views of advance care planning (ACP) within a tertiary home ventilation service.
ACP is a process through which patients discuss their wishes regarding future medical care. This may involve specific preferences when they become more unwell and begin to approach the end of their life.
We aim to recruit two groups of participants: (1) Patients who have recently been commenced on home ventilation who have Chronic Obstructive Pulmonary Disease (COPD); (2) Healthcare professionals working in the home ventilation team. Participants will be individually interviewed using a semi-structured approach by a palliative care doctor experienced in discussing advance care planning and skilled at providing psychological support.
Interview transcripts will be analysed to detect themes. Identification of the most important aspects of participant experience and views of ACP will inform the development of vital resources and training to support patients during a pivotal point in their disease trajectory.
We would like to use our findings to inform service development. We hope that our findings may help other similar patient groups and services.
Summary of Results
Advance care planning for Patients with Chronic Obstructive Pulmonary Disease on Home Ventilation: A Qualitative Study Exploring Barriers, Facilitators and Patients’ and Healthcare Professionals’ Recommendations
Thank you
The research team wish to thank the patients, relatives and healthcare professionals who contributed to this study. Without your help we cannot help others.Research team
The research team is a group of palliative care doctors who are training to become consultants (specialists). We are based in the North East of England. We are supported by consultants in palliative care and respiratory (lung) medicine. We are also supported by experts from Newcastle University.Study support
The study is sponsored (hosted) by Newcastle Hospitals NHS Foundation Trust. Funding was obtained from the National Institute of Health Research and Breas Medical Ltd. The funders do not have any say over how the study is completed.Study aims
We aim to explore experiences and views of advance care planning for patients with chronic obstructive pulmonary disease (COPD) who need non-invasive ventilation at home (home ventilation).Background to the research
COPD is a lung condition that makes it difficult to breathe. It tends to get worse over time. Home ventilation is a type of treatment that helps support the breathing. It involves wearing a mask attached to a machine. Some people need to wear the mask for many hours a day and night. Having home ventilation can help improve symptoms of COPD. It can prevent patients from needing to go to hospital.Advance care planning is a process through which patients discuss their wishes regarding future medical care. Wishes can include types of treatment and place of care. Advance care planning can include discussion about preferences for care at the end of life.
Advance care planning is important as it allows patients to make their wishes about how they want to be treated clear. Advance care planning helps healthcare professionals know what matters most to patients.
At the moment, most advance care planning conversations happen too late or not at all. Around half of patients with COPD who need home ventilation die with no advance care planning discussion.
Little is known about the best way to approach advance care planning for patients with COPD who need home ventilation. We want to find out the best way to approach advance care planning for this patient group.
Design and methods used
We asked patients and healthcare professionals about their views in an interview. The interviews were written down in a transcript (document). We studied all of the transcripts in detail. We looked for any important ideas or topics (themes) that would help improve patient care.We used interviews as we wanted to understand the topic in detail. The interviews took place between October 2020 and March 2021.
The Solihull Research and Ethics Committee approved the study (reference 20/WM/0051). We also received permission from the Research & Development department in Newcastle upon Tyne. We involved patients in the design of the study through the patient and public involvement group at the Newcastle Hospitals NHS Foundation Trust. In particular, the patient and public involvement group gave advice on information leaflets and support for patients during interviews.
The patients who took part in the study were all adults with COPD who need home ventilation. They were all under the care of the North East Assisted Ventilation Service. The service helps people who need home ventilation across the North East of England and North Cumbria. This is a large area of the United Kingdom more than 3000 square miles in size. The headquarters is in Newcastle upon Tyne. The healthcare professionals all work in or alongside the North East Assisted Ventilation Service.
The patients volunteered to take part after receiving a letter and a phone call. The healthcare professionals volunteered to take part following a meeting and an email. There was no pressure for anyone to take part. Taking part did not affect patient care or healthcare professional employment in any way. Patients and healthcare professionals could stop taking part at any time.
Patients were given the option to have someone with them for support. With consent, the patient’s General Practitioner (GP) was informed that they were taking part. Arrangements were made to make sure everyone who took part had support following the interview.
Interviews had to be conducted on the phone or by virtual (computer-based) video call due to the COVID-19 pandemic.
Results – who took part
33 patients and 24 healthcare professionals were invited to take part. Of these, 10 patients and 12 healthcare professionals were interviewed.Most patients were aged between 61 and 80 years. There were 5 female and 5 male patients. Most lived within a 15-mile distance from the Royal Victoria Infirmary in Newcastle upon Tyne. This is where the North East Assisted Ventilation Service is based.
10 North East Assisted Ventilation Service team members and 2 respiratory (lung) doctors who work alongside the service took part. North East Assisted Ventilation Service team members include senior doctors, specialist nurses and physiotherapists.
Results – what we found out from patients We found discussions focused on ‘The Disease’ and ‘Communication’.Here we will give more detail:
1. The Disease: Living with COPD – impact on patients and families.
Patients describe the impact of their illness and treatment on their mental health. They can feel like a burden. Maintaining independence is important. They are protective of family members. Family help to support decision-making.Patients experience severe and long-lasting symptoms that impact on their every-day life. Home ventilation adds to the symptoms, for example, causing a dry mouth. Home ventilation overall improves quality of life.
2. The Disease: Coping with COPD as a life limiting illness Patients say they think of the future and what it will be like for them. They are aware of their changing condition and that it will get worse. Some find it very difficult to discuss. Conversations in the past have often been handled poorly by healthcare professionals.
Patients want more information about their condition and the way it is going. They also want to stay positive and focus on the present.
3. Communication: Learning about and discussing COPD Patients describe things that stop them from discussing advance care planning with healthcare professionals. This includes the attitudes of the healthcare professionals. Some healthcare professionals seem like they don’t want to discuss advance care planning. Some are not very good at discussing advance care planning. Also, patients worry about making healthcare professionals feel upset.
Patients also say that short appointments and virtual appointments prevent them from discussing advance care planning.
4. Communication: Advance care planning awareness, activity, and recommendations In general, patients are not very aware of how advance care planning might help them. When it is explained, they are positive about advance care planning, as long as it is introduced at the right time.
Patients are clear about their own plans for the future. When thinking about the future, patients also think about who they are and how they fit into the world.
Patients want to use advance care planning to maintain control over their own care. They also want to protect their families from having to make decisions on their behalf. They want to protect them from paying for things like funerals.
Patients worry about advance care planning. For example, they worry some decisions may be irreversible. (This is not the case – improved education about advance care planning is needed). Some find it difficult to know where to start discussions as there is so much to think about.
Patients are clear about how they think advance care planning discussions should be done. The discussion should be started by a healthcare professional who they know well. The patient should have the choice of family being present. The discussion should take as long as needed. It should be done sensitively. It should have a clear aim that will help the patient in some way.
Results – what we found out from healthcare professionals Discussions focussed on ‘Service factors’ and ‘Patient factors’. ‘Service’ means the North East Assisted Ventilation Service team’s place of work, ways of working, and resources available to them.Here we will give more detail:
1. Service factors - If everyone’s responsible, no-one’s responsible The North East Assisted Ventilation Service looks after patients across a wide area of the UK. Patients are often known to many different healthcare teams. North East Assisted Ventilation Service healthcare professionals say that looking after patients who are known to lots of teams is very difficult. It is not clear which teams should do what. Teams do not always communicate well with each other. Lack of time and resources makes this worse.
Patients who live further away from the North East Assisted Ventilation Service are not as well known to the team. They have less opportunities for advance care planning discussions. Healthcare professionals feel most comfortable discussing advance care planning with patients who they know well. They prefer to have advance care planning discussions face to face. The COVID-19 pandemic made this harder.
Healthcare professionals feel more confident contacting palliative care teams for help with patient care if they know the palliative care team well. This means that patients who live close to the North East Assisted Ventilation Service may be more likely to be put in contact with palliative care.
2. Service factors - Desire to train and develop self and service Healthcare professionals all strongly want to improve patient care. They do not always have enough knowledge or confidence to discuss advance care planning well.
All healthcare professionals in the study agree that advance care planning happens too late because they are unsure about what should trigger discussion.
Healthcare professionals have lots of ideas for how to improve advance care planning. This includes better palliative care education and support. They do not always know how to introduce palliative care to patients.
3. Patient factors - Distinct, under-served patient group Healthcare professionals explain that patients with COPD who need home ventilation are not always able to keep appointments. This is made worse by having up and down health. Patients with COPD often have problems with anxiety. Anxiety makes it harder to tolerate and to stop home ventilation. It can also make it more difficult to discuss wishes for care at the end of life.
Healthcare professionals say how hard it is for patients who have home ventilation. They feel it is important for this to be included in discussion about advance care planning.
Healthcare professionals do not feel patients with COPD are treated fairly by society, compared to other patient groups who need home ventilation. This makes them want to speak out for patients with COPD.
4. Patient factors - Understanding what ADVANCE CARE PLANNING means to this patient group Healthcare professionals say that they need more information about how to use advance care planning for patients with COPD who need home ventilation. They say advance care planning can include things that improve quality of life, things that can make dying more comfortable, and supporting patients to make decisions about their care. Advance care planning can also include talking about what to expect from care and treatment.
Discussion - How has this study helped patients and researchers?
This is the first study asking patients and healthcare professionals about advance care planning for patients with COPD who need home ventilation. Patients and the healthcare professionals who care for them think advance care planning is not happening enough, or at the right time. It is happening too late.There are three study findings we will discuss in more detail:
1. Barriers - things that delay or prevent ADVANCE CARE PLANNING discussion Being unsure about when patients with COPD might get worse prevents healthcare professionals from starting advance care planning discussions. Not knowing patients well enough prevents healthcare professionals from starting advance care planning discussions. When healthcare professionals look after patients in a big area of the country it can make it harder to get to know them. They are often known to many healthcare teams. The teams do not always communicate well with each other. In particular, teams do not always know when patients are admitted to hospital (which can be a sign COPD is getting worse). It is not always clear which team should do advance care planning. There is often not enough time to do advance care planning well.
2. Ways to overcome barriers
Patients say they would like advance care planning done by the healthcare professional who knows them best. The discussion should be personal to them. It should have a clear purpose. Patients should be able to say no to advance care planning discussions. Healthcare professionals need better training and resources in order to have the discussions that patients want and need.Often patients with COPD are referred for home ventilation after a hospital admission. Since needing home ventilation is a sign COPD is getting worse, this would be a good time to start an advance care planning discussion. The North East Assisted Ventilation Service (and other home ventilation teams across the UK) could carry on this conversation as part of an overall package of discussions about home ventilation.
3. Patients with COPD are not treated fairly Healthcare professionals in this study feel people with COPD do not get the same care as people with other medical conditions. In particular, they do not have the same access to palliative care.
We need to find better ways of working with palliative care for patients with COPD who need home ventilation. It is important that home ventilation teams are involved in discussions as they are the experts in this condition.
Limitations of this study
This study was performed by people who are not experienced in this type of research. However, they were supported by experts in research.The interviews were not performed face to face. This was to protect patients during the COVID-19 pandemic. This might mean the information collected is not as good.
Two of the patients who took part chose for their relative to be present. This could have affected the answers they gave. However, we felt it was important the patients had this option for support. The patient and public involvement committee agreed.
How the findings might affect patient care We need to find new ways of working. We suggest that healthcare professionals who know patients well and are making a new referral for home ventilation start advance care planning discussions. Referrals should include details of what has been discussed so far. The home ventilation team should then carry on this discussion, as part of a wider package of discussion about home ventilation.
Training for healthcare professionals, guidance documents and written information for patients is also needed.
We need better access to palliative care for people with COPD. To make this happen, we need more funding and support for palliative care.
Once new measures have been put in place, more research is needed to see if they help.
Dissemination - how the findings will be communicated We have asked a journal to publish our findings and hope to hear back from them soon.
Details of any further research planned
Further research is needed to understand this topicWhere can I learn more about this study?
If you need any further information about this study, please contact neprra.uk@gmail.com.REC name
West Midlands - Solihull Research Ethics Committee
REC reference
20/WM/0051
Date of REC Opinion
22 May 2020
REC opinion
Further Information Favourable Opinion