Balancing competing priorities: Managing illness vs. living life

By Catherine Maguire

The high treatment burden in chronic respiratory illness is very real. As a 28 year old living with Cystic Fibrosis (CF), when healthy I am usually on 16+ medications and engage in over 2 hours of treatments daily. I currently take up to 47 tablets daily, depending on my food intake. I usually have 1-2 hospital admissions per year lasting 10-14 days each, for routine intravenous antibiotics and intense chest physiotherapy to clear out my lungs. Of course, these figures skyrocket when I have an exacerbation.

This treatment schedule isn’t always easy to manage when integrated into the context of trying to live a “normal” life; including professional employment, post graduate studies, social affairs, playing mum to two beloved dogs, maintaining a house and being a fabulous wife.  I’d like to provide some further insights into what the treatment burden involves for individuals like myself.

For me, treatment burden from Cystic Fibrosis falls into six main categories:

  1. Participating in physiotherapy for airway clearance every day takes at least an hour. Add in my usual nebuliser regime and that figure doubles. I don’t always have time for dirty dishes, or to put that extra 30 minutes into proof-reading my essay – not because of my CF per se, but because of the treatments to keep my CF at bay.

 

  1. BOTHER: Organizing my own medicines into pill boxes each week; mixing powder antibiotics with saline/water for injection prior to nebulization; sterilizing equipment; setting up and dismantling my physiotherapy table each day. While all of these aspects to treatment may seem “petty” in the grand scheme of things, they not only take further time out of my day, but they are just a nuisance, a bother. And anything which is perceived to be a bother requires additional incentive for compliance.

 

  1. PHYSICAL EXHAUSTION: Participating in daily forced airway clearance (and therefore controlled breathing and coughing for over an hour) is actually very exhausting! I think this treatment is actually more straining and demanding on my energy than the “actual” symptoms of the disease.

 

  1. ACCESS: There are numerous “systems” issues with healthcare in Australia. Now don’t get me wrong, we have some of the best health care in the world and I am forever grateful for the level of care I am provided with under Medicare. This said, there seems to be some mini hurdles which could easily be rectified, such as having to navigate dual pharmacy systems (local community pharmacy and hospital pharmacy for specialised medications). Additionally, access to the CF clinic staff closes by 5pm which can be another obstacle for working professionals. Lastly, I’ve also found it difficult to access regular, affordable, reliable physio-in-the-home to assist with daily airway clearance.

 

  1. COST: Prescription medications, even at discounted rates are expensive. This coupled with the high volume of non-prescription medications such as vitamins and supplements due to pancreatic insufficiency, create a huge cost. Other costs include physio-in-the-home; equipment costs; unpaid leave from work for appointments and hospital admissions; costs of a high calorie diet; hospital parking; paying for hospital cafeteria food and take-away (because food served to actual patients is often inedible and does not always meet CF dietary requirements); ridiculously expensive travel insurance… the list goes on.

 

  1. PSYCHO-SOCIAL: The burden from this intense treatment regime creates some real barriers to social affairs, employment and career advancement, housework, tertiary studies and being a fabulous wife. But psycho-social impacts extend beyond the consumer and onto loved ones and partners. When these people act as carers (such as to help with additional physiotherapy) the relationship dynamics change and it can create a myriad of psychological consequences. In regards to psycho-social support – this is currently minimal. If I visit a psychologist in my community the likelihood is I would spend the first few sessions educating them about the psychology of chronic illness and what CF is / how this impacts my life. I would also only be entitled to limited sessions and need to pay a gap fee depending on their rates. People with complex health issues require specialist psycho-social staff with expertise in chronic illness and treatment burden. How is it I am living with a chronic terminal illness yet the clinic currently has no CF counsellors, psychologists or social workers funded by the hospital?

Having said this, imagine if some of the aforementioned obstacles could be addressed. Now this may be a very ambitious wish list, but here are some solutions which would make the treatment burden from CF much easier:

  • Providing a life-long health care card (regardless of income) to assist with the costs of medications.
  • Streamlined pharmacy systems whereby you collect all medications from one pharmacy or even better – home delivery! This would (a) reduce the extensive pharmacy waiting times at the hospital (b) reduce logistically having to negotiate drugs at separate pharmacies (c) having to remember which scripts to get from which doctors and (d) at which pharmacy.
  • Discounted parking rates at the hospital for frequent-flyers.
  • Affordable (or ideally free) reliable physiotherapy in the home.
  • A push for pharmaceutical companies to revolutionise how our medications are delivered into the lungs by developing more puffers/quick inhaled medications which are just as effective as nebulised medications. Nebulisers take time, puffers don’t. Likewise, for drugs that must be nebulised, have them in ready-to-go nebules so we don’t need to mix them with saline/water for injection prior to use.  Perhaps nebuliser pieces could also be dishwasher safe to eliminate the sterilisation process.
  • Routine access to psycho-social services, i.e. a psychologist/social worker/counsellor who specialises in chronic illness to be available for both outpatients and inpatients.

Many chronic illnesses including CF require a complex daily regime in order to prevent the progression of the illness. On a daily basis I am forced to make a cost-benefit analysis with my treatment schedule: it may be costing me 2-3 hours of treatments today, however it will hopefully be a worthwhile investment; increasingly my quantity and overall quality of live into the years to come. My decision, while logical, is not always easy to make when considering the competing priorities in my life at any given time. Imagine how many consumers engage in this cost-benefit analysis and choose non-compliance? As a medical community I urge us all to look beyond the actual diagnosis and symptoms of the disease, but to also consider the very real impacts the treatment schedule has on the everyday lives of consumers.

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