Member Surveys

APM Member Survey: Withdrawal of tracheostomy ventilation in the community and hospice inpatient unit

The APM has a helpful guideline for the withdrawal of ventilation in patients with motor neurone disease. Most of the cases discussed in this guideline involve patients undergoing withdrawal of non-invasive ventilation (NIV). Indeed historically, the majority of cases involving withdrawal of ventilation in community and hospice settings have involved withdrawal of NIV.

However, there are an increasing number of patients with motor neurone disease and other conditions living with tracheostomy ventilation (TV). Anecdotal experience suggests that withdrawal of ventilation in these patients may be different from NIV withdrawal in terms of the time to death once ventilation is withdrawn, and the use of medicines for symptom management.

The aim of this survey is to understand APM members’ experiences of tracheostomy ventilation withdrawal in the community (at home and in nursing homes) and hospice inpatient units.

Please ensure that no confidential or patient identifiable information is included in your responses.  The survey has been created via Survey Monkey and is not a secure system.

The survey should take no longer than 4 minutes to complete.

Many thanks in advance for your time.

Amy Hawkins
Locum Consultant in Palliative Medicine, Princess Alice Hospice Esher Surrey

Do you use NSAIDs to treat cancer-related pain?

We would be very grateful if you would consider responding to this 5 minute survey on NSAID use in pain management please. We are interested in understanding the experience and expertise held by palliative physicians. Arecent Cochrane review concluded that there remains no high-quality evidence to support or refute the use of NSAIDs alone or in combination with opioids for the three steps of the WHO cancer pain ladder.

Based on your response we can better understand current practice and begin to develop research for more definitive investigation of NSAIDs in cancer pain.

Dr Andrew Page, NIHR Academic Clinical Fellow in Palliative Medicine, Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds

Professor Mike Bennett, Professor of Palliative Medicine and Head of the Academic Unit of Palliative Care, University of Leeds

Providing end-of-life care to CF patients

Cystic Fibrosis (CF) is a chronic, progressive, and ultimately life-limiting disease. Providing end-of-life care to CF patients is extremely challenging because of its variable and unpredictable disease course and the complications added by an ongoing hope of lung transplantation. At present, there is little formal guidance about who should deliver this care and how CF multi-disciplinary teams should interact with specialist palliative care services. We are very interested in gauging how well-prepared healthcare professionals in both the CF and palliative care teams feel they are to provide end-of-life care to adults with CF.

In 2017, 132 people died from CF in the United Kingdom. There are currently ~10,500 people living with CF in the UK. They may be seen by palliative care physicians at home, in outpatients, in hospital or occasionally in hospices. Your views are important to understand and will help improve practice in caring for this group of patients.

We would be very grateful if you could fill in this short, anonymous questionnaire which should only take a few minutes to complete. Many thanks in advance for your help.

Eva Harris-Skillman (Medical student, Oxford), Dr Will Flight (Respiratory Consultant) and Dr Mary Miller (Palliative Medicine Consultant)