The Mask and How to Help

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This month’s blogger, Julie McCrossin, is an Australian journalist and broadcaster, she is also an oropharyngeal cancer survivor who was treated with radiation therapy and chemotherapy over 5 years ago. 

For more about Julie’s diagnosis and treatment, watch the videos “Julie’s Story: Challenges and What Helped” from The Royal Australian and New Zealand College of Radiologists (RANZCR)

The most traumatic aspect of my treatment for stage four oropharyngeal cancer in 2013 was the immobilisation mask. I wore it every day for 30 consecutive days. My time alone in the bunker receiving radiation therapy was 20 minutes. The setting up period meant I was tightly secured by the head for up to 25 minutes each day. Prior to my first treatment session, I had never seen a LINAC or a bunker. I had never seen a picture or received an oral description of how the mask would be used or how I would be positioned. I was not informed about any options to help me cope prior to my first session. As soon as the mask was put on for the first time, I immediately panicked and asked the radiation therapists to take it off. They did so immediately. I then quickly reminded myself how many people were waiting outside and that I had been told that surgery would most likely eliminate my capacity to speak and swallow for the rest of my life. I was considered too small for robotic surgery at that time. I immediately asked the radiation therapists to put the mask back on. I told myself I had to cope.

After this first session, I left the bunker and hid in the toilet so that my partner of 22 years, Melissa would not see how shocked and distressed I was. We then went to our car where I sobbed uncontrollably for over 15 minutes. I then froze inside. I was not able to cry again, at all, over the next five years, until 29 December 2018. This is the day my 94-year-old mother, Marjorie died. Crying was a blessed relief.

I underwent four radiation therapy treatments in the mask before I went to the nurse and told her I was in serious trouble. I had asked the radiation therapists on the second, third and fourth treatments, to please speak to me and give me reassurance during my sessions. However, this never was successfully achieved. They seemed totally caught up in their essential treatments tasks. I told the nurse about my hot flushes, palpitations and sweating. She arranged for me to have mild sedation, four music tracks to play repeatedly so I could monitor the time and access to a clinical psychologist. The nurse also held my hand while I was fixed into the mask for the next three or four sessions which helped immensely.

Five years later, I have spoken to many head and neck cancer patients and multidisciplinary team members about the mask. I am the voluntary ambassador for Targeting CancerTROG Cancer Research and Beyond Five. These websites have excellent educational materials for head and neck cancer patients and families, including about the mask. They did not exist in 2013 when I was treated.

I have co-edited two Australian Editions of the Head and Neck Cancer Patient, Carer and Family Book in 2017 & 2018 with patient stories and articles by leading clinicians. My website has links to these.

How to help

1.Specialist Head and Neck Cancer Nurses.

We need to develop a cohort of specialist head and neck cancer nurses to support and inform patients and families before, during and after the treatment process. These senior nurses require accredited specialist professional development. They need to be available in the public and private sectors. They will be able to conduct research in partnership with the multidisciplinary team and hold specialist training and conferences in a recognised professional field of head and neck cancer nursing. I have met specialist head and neck cancer nurses at Chris O’Brien Lifehouse in Sydney and at The Leeds Cancer Centre in the UK. I spoke at the 2017 Patients Head & Neck Cancer Conference hosted in Blackpool by The Swallows Group UK charity. I was really impressed by the supportive role these NHS nurses played.

2. Visual Patient Education Using Models.

All head and neck cancer patients should have the opportunity to view a model LINAC with a patient in position wearing a mask BEFORE their first treatment. Medical models are used in heart surgery and orthopaedic and other areas for patient education. When one is overwhelmed emotionally & it is hard to absorb information, “seeing” is the best communication, in addition to text and audio. Models should be displayed in waiting rooms outside bunkers & used by team members prior to treatment. Dr Sean Geoghegan, State Director Radiation Oncology Medical Physics South Australia and I are working on a joint project to develop models across Australia. Here is a link to the UK Little LINAC model project run by the Institute of Physics and Engineering in Medicine.

3.Options for Mask Support

Patients should be offered options for support with the mask BEFORE the first treatment: such as music; mild sedation; “magic string” (A long, coloured piece of thin, soft material for the patient to hold. A support person holds the other end outside the bunker. This is used in Leeds to support & reassure); access to a clinical psychologist or a specially trained nurse; the chance to see and paint their mask with empowering images; (This is done in Leeds) and so on. It should be called a “safety mask”, not an “immobilisation mask”. Words matter.

4. National Best Practice Mask Education Guidelines

Currently, there is a wide range of inconsistent practice. The opportunities for professional, evidence-based pre-treatment education vary – not only between cancer centres, but within the same centre, depending on which staff member happens to be on duty. When I asked my team, why I had not been told what to expect with the mask – everyone thought somebody else would have told me. This hit-and-miss approach is leading to psychological trauma. Every other aspect of my care was professional and evidence-based. Keeping me alive was fantastic. My psychological health needed to be protected too.

Help us do better than this. We can do better than this.

 

Advanced Practice radiation therapy roles: where is the evidence?

This month’s blog is a response by Amanda Bolderston to October’s paper by Hilder et al.  Amanda is a faculty member at the University of Alberta’s Radiation Therapy Program and has been involved in the development of Canadian advanced practice (AP) roles in radiation therapy for longer than she cares to remember.

AP roles have developed in several countries, including the UK, Australia and Canada*. Hilder, Vandam and Doherty’s JMRS paper outlines the Australian context for AP roles – defined in the paper as “working beyond one’s traditional scope of practice underpinned by expert evidence based knowledge” (p. 138).

There are several commonalities between the countries in terms of principles of practice. In the UK Advanced Clinical Practice is defined by Health Education England (HEE) as “four pillars of clinical practice, leadership and management, education and research, with demonstration of core capabilities and area specific clinical competence”.  The four elements of the radiographer advanced practice and consultant roles (defined by the Society and College of Radiographers/Department of Health) are expert clinical practice, professional leadership and consultancy, education training and development and practice and service development, research and evaluation.

The Canadian definition doesn’t refer to “pillars” but looks at “principles” of improved patient outcomes, critical thinking, complex decision making, autonomy of role and leadership. The Canadian Association for Medical Radiation Technologists (CAMRT) AP competency profile is based on clinical and technical expertise, leadership, research and evidence based practice and education. Australia’s seven “dimensions of practice” are expert communication, internal and external collaboration, high level of professionalism, advanced clinical expertise, high level of scholarship and teaching, professional judgement based on evaluation of evidence and clinical situation and clinical leadership.

Hilder, Vandam and Doherty’s JMRS paper provides a useful scoping exercise of the last 12 years of about 50 papers, conference abstracts and reports related to the Australian advanced practice radiation therapist role.

It would be useful to carry out a similar scoping review for the UK and Canadian context but for a (VERY) rough comparison a search was conducted for published journal articles and conference abstracts using “advanced practice” in the title, abstract or keywords. JMIRS (Canada) indicates 18 radiation therapy  papers, mostly single-institution studies. There were very few papers about AP in diagnostic imaging. For Radiography (UK) using the same search boundaries there are many more papers about diagnostic imaging AP roles, and only four identified about radiation therapy specifically (but about 20 broader papers looking at AP frameworks, research or education in general).

While this approach is obviously flawed and subjective (looking at titles only) it demonstrates a number of common issues. Actual evidence for radiotherapy roles is fairly sparse – and mainly limited to conference abstracts, not published papers.

This is worrying for a few reasons. One is that research is embedded in all AP roles in all three countries. Rachel Harris’s doctoral work has demonstrated the difficulty many AP practitioners have in actualizing their research roles and it is very well documented that ALL practitioners aspiring to research face barriers in terms of time away from clinical duties. Another cause for concern is that we need research to show the impact of these kinds of roles, both for the profession and for individuals and departments looking to implement them.

There may be a few more reasons why the literature doesn’t demonstrate fully “that the gaps in service have been addressed, that service delivery, and patient care has been improved” (Hilder, Vandam and Doherty, 2018, p. 145):

  1. Lack of an academic professional culture – our radiation therapy education has only fairly recently moved to an undergraduate degree, Masters level education is relatively new (depending on the country) and doctorally prepared radiation therapists are still quite sparse. It takes decades to change a professional culture and embed scholarly competence. In addition, we need to grow necessary infrastructure (peer reviewed meetings, journals, etc.) that along with our professional growth.
  2. Much of the work that we do is essentially “unfunded” in that we may have dedicated funding to accomplish something clinical, but there isn’t much dedicated time to conduct research or write up findings. We don’t often attain high level research grants that cover publication and dissemination costs.
  3. We rely mainly on single institution studies – we tend to be quite silo’d (both within our own countries and internationally). Most of studies that we do to demonstrate results of these roles are “one off” studies. These isolated results can rarely show the success of an individual in a particular role in a specific centre. It’s very difficult to influence decision makers with that kind of evidence.  What we need to do is collaborate better, adopt/adapt consistent methodologies and develop multi-institutional projects.

So, despite decades of work on advanced practice roles we still have pretty limited evidence to support them. We know they work! Let’s get publishing!

*Other countries have AP roles but I am looking at these three for convenience

Thank you to Nicole Harnett for her input into this blog – particularly the last section on radiation therapist scholarly competency etc.

She’ll be expanding on this at LTWRAP as the Canadian keynote speaker in her talk “The advanced practice journey in Canada: how old am I anyway?”