Effective communication crucial in cancer care

Outcomes of a patient’s treatment, prognosis depend a lot on this, according to findings from SPOKE 2021

THERE are many studies that prove effective patient-doctor communication can help regulate patients’ emotions, facilitate the comprehension of medical information and allow for better identification of patients’ needs, perceptions and expectations.

Therefore, this should lead to better outcomes, especially in the healthcare system involving patients with cancer.

According to Chris Cheng, the organising chairman of Sarawak Patient’s Organisations Knowledge Exchange (SPOKE) 2021, the outcomes of a patient’s treatment depend a lot on effective communication.

“The physician who encourages open communication may obtain more complete information, enhance the prospect of a more accurate diagnosis and be able to facilitate appropriate counselling; thus, potentially improving adherence to a treatment plan that should benefit health in the long-term.

“In reality, however, there can be many barriers throughout. We should look at the challenges in our own local setting where the contributing factors may be due to local culture and beliefs, socio-economic status, level of education, languages and demography.

“The differences between patients’ and physicians’ perceptions of illness could also result in poor communication and unsatisfactory treatment results,” said Cheng.

Organised by the Society for Cancer Advocacy and Awareness Kuching (SCAN), SPOKE 2021 was held virtually in August and it gathered representatives of some 30 cancer-related organisations as well as other guests.

The online workshop programme involved discussions and exchanges of knowledge between the participants regarding various issues affecting cancer patients.

Based on the output from the discussions in SPOKE 2021, a report had been compiled and published – now available for access by all the participants.

Amongst the topics highlighted is the patient-doctor communication, under which 11 relevant issues have been identified: misinterpretations and misunderstandings; taboos and local cultural beliefs; patients holding back information from doctors for fear of being labelled or judged; patients not capable of verbalising their concerns or speaking the same language as the doctors; patients being afraid that getting a second opinion would make their current doctors unhappy and thus, choosing to hide things from them; patients not knowing what to ask, or are fearful of talking to the doctors; patients forgetting to address their concerns during follow-up appointments or not getting explicit instructions about medication needs; rare opportunities of seeing the oncologist, and seeing different medical officers (MOs) at different clinic appointments; lack of communication with the doctors on topics related to coping strategies for life after treatment, survivorship and prevention of recurrence; long waiting hours at Sarawak General Hospital (SGH) due to high patient load, causing stress and agitation; and some doctors lacking the skills in breaking bad news.

Misinterpretations and misunderstandings

Cancer patients generally feel frightened and lost, being overwhelmed by negative emotions (denial, sorrow, anxiety, or fear) once they are diagnosed with cancer, which could lead to them not fully comprehending their diagnosis, treatment plans and prognosis during the consultation with the doctors, or post-discussion.

· Recommendations to patients: Patients should not leave the hospital immediately after the consultation or discussion, but to take some time to sit down and attempt to understand or reflect on what has been informed. Check with the nurses if they could explain the doctor’s diagnosis in more details.

· Recommendations to doctors: Doctors can help by first being reassuring, putting the patients at ease, assessing the patients, getting to know them at the very initial stage – i.e. to read their medical history and records and make efforts to know them better. Doctors ought to be mindful and observe the patients. If the patients get detached and not interested or break down during consultation, allow some short breaks and come back to them later. Encourage patients to speak to a support group and offer to give contacts of non-governmental organisations (NGOs) either themselves or through the nurses.

Taboo, cultural beliefs not well understood

Malaysian patients come from diverse cultural backgrounds and inevitably, there would be a diverse range of practices related to health, wellbeing and medicines that may not conform to the standard scientific medical care.

Taboo and cultural beliefs amongst the population in Malaysia are not well understood by all healthcare professionals. For example, the Chinese do not like to talk about ‘cancer death’ as this is perceived as bringing them bad luck; married Indian women are very apprehensive about taking off their ‘mangalsutra’ (‘Sacred Thread’ worn around the neck, connoting the sanctity of a woman’s status as a wife) during surgeries.

Sometimes, the patient’s concept of good and ill health could be very different from their doctors’ scientific knowledge and skills. For example, the Chinese use the concept of ‘heat and coolness’ to explain many of the causes of illness, while some local communities have the belief that ‘angin’ (wind or breeze) could be the cause of a number of ailments.

So when a doctor is not aware of these background influences and imposes his scientific concept straight on the patient without much consideration, the line of communication would fail to develop.

· Recommendations to patients: It would be good for the patients to share their beliefs so that the doctors and nurses could understand them better.

· Recommendations to doctors: Doctors need to be open-minded about the patients’ understanding of their illness before trying to convince them of the diagnosis and the recommended treatments. Some understanding of the community’s background should help bridge the gap between the patient and the doctor.

Patients holding back information from doctors for fear of being labelled or judged

Examples – having lung cancer and the patient is a smoker, or having cervical cancer but the patient is not married.

· Recommendation to patients: Being honest is the best way. Then, the doctors could gather all the information and consequently, recommend the best options.

· Recommendation to doctors: Doctors should practise tactfulness and diplomacy, and be more approachable, warm and caring towards patients.

Patients not good at verbalising their concerns to, or speaking the same language as the doctors

The language barrier may cause a lack of confidence in patients to ask questions and may also become an obstacle towards a better understanding of their disease, health condition and prognosis.

· Recommendation to patients: If language is a barrier, bring a family member or a friend who can sit in during the consultation, to query the doctor or interpret the information on behalf of the patient. Patients should write down a list of questions that they may want to ask as very often, they are forgotten once in the consultation.

· Recommendation to doctors: Doctors can help check if other healthcare professionals could speak the same language as the patients. Request from hospital management to have their own interpreters’ services (public relations department), which is highly recommended and of great value in Sarawak.

Some patients afraid that getting a second opinion would make the doctor unhappy, and choose to hide from them

The fact is getting a second opinion is very common, and it is also a patient’s right before making any final decision, whether for surgeries or other treatment options. Seeking a second opinion has nothing to do with a doctor’s credibility or competence.

· Recommendation to patients: Patients need to be open and share with their doctor the intention to seek a second opinion.

· Recommendation to doctors: Doctors should let patients know their right to a second opinion, especially when facing life-threatening situations.

Patients not knowing what to ask, or are fearful of talking to doctors

Lack of awareness or knowledge about cancer among patients and the ‘power-distance’ prevalent in the Malaysian context, can hinder a conducive two-way communication.

· Recommendation to patients: Patients should request a family member or a caregiver to accompany them to consultations, treatments, and follow-ups to support with the communication process with the doctors and obtain the required information.

· Recommendation to doctors: Doctors need to explain any medical or technical terms using simple words to aid patient’s understanding – jargons must be avoided. Doctors can refer newly-diagnosed patients to cancer NGOs and support groups to help them understand more about the disease.

Patients forgetting to address their concerns during follow-ups, or not getting explicit instruction about medication needs

Sometimes patients may forget to ask, and they realise it only after having reached home.

· Recommendation to patients: Patients should (or should ask family members to help) write down all the questions in a small notebook, and bring it along to clinic appointments.

· Recommendation to doctors: Before ending the consultation, doctors can wrap up and summarise the information and make it a point to ask the patient if they have any other questions for the doctor. Ideally, ask nurses to explain further to the patients to aid understanding.

Rare opportunities to see the oncologist, and see different MOs at different clinic appointments

MOs may not have the time to review patients’ medical records, which could trigger frustration at the patients’ end when they are being asked again for their medical history – making it difficult to build up a good rapport between the patients and the doctors.

· Recommendation to the head of department: The head can introduce the team within the department so that patients can get to know the doctors working there. The SGH and the Radio Therapy Unit (RTU) might need to look into the possibility of patients seeing the same MOs at different appointments.

Lack of communication with doctors on topics related to coping strategies for life after treatment, survivorship and prevention of recurrence

· Recommendation to doctors: Provide a general list of frequently-asked questions (FAQs) translated in various languages to help patients get started in having the conversation post-treatment.

Long waiting hours at SGH due to high patient load, causing stress and agitation

This may cause doctors to work under high pressure, and patients being tired upon seeing the doctors — hence, the difficulty towards achieving an effective communication and consultation process.

· Recommendation to patients: Always adhere strictly to the given appointment time and date to avoid the long wait.

· Recommendation to SGH management: Provide refreshments to patients as they wait to see the doctor, to help calm them down and also improve engagement between the nurses and the patients. Management should look into a better clinic appointment system to avoid the long, stressful wait.

Doctors lacking skills in breaking bad news to patients

Bad news may refer to initial cancer diagnosis, recurrence of cancer, unexpected clinical findings, the current treatment or therapy that is no longer working for the patients to achieve the desired outcome, or the progression to the terminal stage. It is understandable that doctors need to reveal the actual medical condition and speak the truth so as to not create false hope in patients when the prognosis is poor.

· Recommendation to doctors: Doctors need to establish a patient-centred approach rather than disease-centred in treating the patients. Doctors should deliver bad news clearly, but tactfully. Be sensitive and understand the acceptance level – the doctor may need to give out the bad news in small doses.

· Recommendation to hospital management: Incorporate courses or workshops on improving communication skills into the ‘Continual Professional Development Programme for Doctors’. The Malaysia Medical Association (MMA) can be a good resource. Hospital management may consider setting up a patient feedback system or process so as to help identify the areas of improvement required.

Moreover, the roles of the NGOs in improving and enhancing the patient-doctor communication are crucial as well, and there are the processes that could be considered:

· help patients overcome their issues and barriers by developing guidelines to help them address the needed questions;

· promote cancer awareness by providing the basic knowledge and information about a particular disease in multi-languages towards improving literacy in cancer. The media could be in the forms of pamphlets, leaflets or simple infographics, and;

· place peer counsellors (cancer survivors) at hospitals to assist the newly-diagnosed cancer patients during their visits to the doctors.

Additionally, NGOs can also educate the community about the importance of early detection by giving practical guidance such as doing self-breast examinations, and providing self-test kits in the rural areas, as well as running more talks on disease, the treatment options, diet management, exercise, emotion management.

SCAN president Sew Boon Lui said good patient-doctor communication had the potential in helping to regulate the emotions of patients, facilitate the comprehension of the medical issues faced by them, and allow for a better identification of their needs and expectations.

“This would definitely lead to patient’s satisfaction. It would also increase the doctor’s job satisfaction and at the same time, reduce stress and prevent burnout.

“Since the implementation of PNP (Patient Navigation Programme), timeliness to cancer diagnosis and primary treatments, including surgeries, has improved significantly.

“However, to address early detection, the PNP in primary care and community is required and is about to be implemented – starting with the towns near Kuching such as Serian in the following months, and working with local community leaders including village headmen and ‘tuai rumah’ (longhouse chieftains),” she said.

In SPOKE 2021, participants also talked about the PNP, where Cancer Research Malaysia (CRM) had updated it at the Pink Ribbon Centre (PRC) for breast cancer patients.

The PNP has a three-phase model and thus far, Phase 1 on hospitals has been implemented in Kuching, where the ‘patient navigators’ from CRM would attend to the breast cancer patients at the PRC to identify their needs and barriers to access, help them out with addressing financial barriers and the occasional logistic issues, as well as to manage defaulters.