Over time, many healthcare staff start to forget that the patient is a person with wants and needs, and focus on treating only the disease.
By Dr Daniel QuahConsultant, Division of Radiation OncologyNational Cancer Centre Singapore
Medicine is full of protocol and check-boxes - originally intended to help promote uniformity and safety in clinical practice. Sadly, the ones who suffer most from such a practice may be the patients, who degenerate into numbers and statistics.
Over time, many healthcare staff start to forget that the patient is a person with wants and needs, and focus on treating only the disease. This disconnect forms two different pictures - what doctors think their patients want, and what patients actually want.
In a Star Wars film, Jedi Master Obi-wan Kenobi poignantly said: "Many of the truths we cling to depend greatly on our own point of view."
Thus to answer the question of "What do my patients want?" truthfully, we have to agree on the best point of view to take: The patients'.
In the Department of Radiation Oncology at the National Cancer Centre Singapore, my team uses high-energy radiation (most commonly X-rays) to shrink cancer and control symptoms in our patients.
The full amount of radiation a patient needs to receive is usually divided into a number of smaller doses called fractions; usually one fraction is administered every weekday, for a total of six or seven weeks of treatment.
Such a treatment regime imposes a logistical challenge to patients who are unable to travel to and fro, so they need to be warded during their radiotherapy (RT), taking up additional hospital beds and resources. Our team's initial impression was that most of these patients were admitted due to social issues. These patients are who we call Esthers.
And so we eagerly commenced on a project in an attempt to identify what social support these Esthers who receive RT as an inpatient needed. The objective was to help them to be able to undergo RT as an outpatient.
However, we realised later on that we had assumed wrongly that lack of social support was the main reason for Esthers' admissions.
The realisation came on Chinese New Year Eve 2017. We were reviewing an elderly male patient with locally advanced head and neck cancer who absconded from his treatment because he was unhappy with staying in the hospital for daily treatment. But he also admitted that care will be an issue if he stayed at home as he did not have relatives in Singapore and was staying alone.
He felt restricted in the hospital and yearned to lead his normal life. The team had a chat with him and found that surprisingly, "normal" to him was being able to read the newspaper every day! So all it took for us to resolve his unhappiness about inpatient stay was a stack of newspapers every day during his RT.
That made him very happy – we assessed his Happiness Score and it went up from 4 out of 10 (without papers) to 8 out of 10 (with papers).
What the patient had taught us was that it is important to address an Esther's unique concerns during treatment, and that every Esther will have different needs. We were proven right on three other occasions:
- An elderly male was planned for a course of RT of 5 fractions to stop bleeding. His Worry Score was 7 out of 10 because he thought he would be troubling his daughter, as she would need to take time off from work to bring him to NCCS for daily treatment. Fortunately, his Medical Oncologist was able to arrange for him to have RT as an inpatient. That decreased his Worry Score to 3 out of 10.
- Another elderly male was planned for 33 fractions of RT to commence in two weeks. His daughter was worried, with a Worry Score of 7 out of 10, about the additional care the family would have to cope with on top of taking care of their infirmed mother and a mentally challenged sibling. However, her Worry Score dropped to 5 out of 10 when treatment plans changed and RT was postponed by a couple of months to make arrangements for the patient's daily treatment.
- A young lady with two young children had her cancer spread to her spine. This resulted in a prolonged stormy stay in hospital due to various complications. She became very homesick with a low Happiness Score of 4 out of 10. We changed her painkiller from one that requires infusion to one that she could take orally so that she could receive RT as an outpatient. That made her Happiness Score a full 10 of 10!
All these made us realise that to put patients first, we need to change the way we deliver our service – it is on us healthcare professionals to incorporate patients' preferences and work around our constraints, and not the other way. It is not about treating the disease, but the patient and his/her family. We can only do so by taking a detailed social history and see the treatment process from their point of view, to allow optimal adaptations of treatment for the holistic well-being for patients.
Spending an extra five minutes to communicate with each patient in a person-centered approach can improve patient satisfaction, stratification of treatment and resource usage, and adherence to treatment agreement. A thoughtful understanding of our Esthers would go a long way in taking us beyond mere information-taking and check-box ticking to getting patients involved in their own health and care.
It is indeed very timely that SingHealth has introduced the Esther Network, and I am proud to be one of the first graduates of the Esther Coaches training programme. The programme has reinforced my teams' views that each patient is unique and we need to explore alongside the patients so we can create a unique experience for each patient.
We have started to add patient-centered segments into the daily practice of our Palliative Radiotherapy Team to optimize patients' treatments. It is our hope that with support from NCCS and cluster leadership, such patient-centered approaches will be commonplace in other radiotherapy teams and departments.
It is easy to quote "Patients, at the heart of all we do." But we should take the next step to walk the talk, and do what is truly important for the patients, not what we, the healthcare team, think is important.
###Dr Daniel Quah is a Consultant with dual accreditation in both Radiation Oncology and Palliative Medicine. His sub-speciality is an amalgamation of both - Palliative Radiotherapy. In addition, he has a special interest in an emerging radiotherapy technique called Boron Neutron Capture Therapy.In January 2018, Dr Quah and 52 other healthcare and community care professionals graduated as Singapore's pioneer batch of Esther Coaches, trained to spearhead and support person-centred care initiatives within and beyond their organisations.