Patient empowerment in oncology: added value and concerns
You have cancer and you’ve been bothered by side effects of your treatment for a while? You should preferably talk to your doctor.
Patients make treatment decisions with their doctors. This is how it should be and how we, at the Anticancer Fund, want it to be.
Unfortunately, some patients who contact us, still find it difficult to openly discuss their condition with their treating oncologist, out of fear to jeopardise their relationship.
Although it seems universally accepted that effective patient-clinician communication and shared decision-making are key components of patient-centred care, several challenges make shared decision-making often less than optimal, impeding the delivery of patient-centred, high-quality cancer care.
Emotions prevent patients from communicating
A cancer diagnosis can lead to a state of crisis for an individual and his or her family because most people have no habitual, problem-solving mechanisms for cancer-related crises and are not immediately equipped to understand their diagnosis or how to identify options for moving forward. The emotional repercussions of a cancer diagnosis can prevent patients from engaging in effective communication with their clinicians about their diagnosis and treatment. Patients can become anxious, feel vulnerable, alone, fearful, and experience feelings of losing control when receiving a cancer diagnosis. Given these emotions, patients may be unable to retain important information regarding their treatment when speaking with their care team (NCCS, IOM).
A cancer treatment context is particularly challenging for patients and their families because there are multiple effective therapies that may be interconnected, and there is a complex interplay between their benefits and risk (Steven J. Katz et al., 2014). That’s why we, at the Anticancer Fund, offer assistance to patients by informing them about their treatment options and available clinical trials relevant to their specific situation. We do this to support the shared decision making process between them and their clinician.
Because they receive appropriate and scientific information from the Anticancer Fund many patients feel their oncology appointment is more relevant and informative. That’s a clear feedback we received from the patients we helped.
Many oncologists encourage our efforts to inform individual patients, some however are still somewhat sceptical. Importantly, we make it very clear to the patients that we don’t give medical advice and the information provided does not replace a medical consultation.
Patient empowerment is related to patient involvement
The European Patients’ Forum (EPF), on its website defines “Patient empowerment” as a “process that helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important”. Aspects of empowerment include health literacy, shared decision-making and self-management.
According to the EPF, patient empowerment and patient involvement are closely related: involvement (or participation) has both an individual and a collective dimension and both can take place at micro, meso and macro levels. For example, at individual (micro) level, patients participate as partners in the care process through shared decision-making and self-management. At organisation (meso) level, patients can be involved in quality improvement initiatives at hospitals. At policy (macro) level, patient organisations participate in shaping health policy.
An international reference point for patient involvement is the Alma Ata declaration (1978), which was adopted at the International Conference on Primary Health Care (PHC), in Almaty (formerly Alma-Ata), Kazakhstan (formerly Kazakh Soviet Socialist Republic), 6–12 September 1978. Important is point IV, which defined civic involvement in healthcare as both a right and a duty: “The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.”
The patient–doctor relationship is a partnership between equals
The patient-professional relationship should be seen as a partnership of equals. Empowerment does not happen in a vacuum: it is a two-way process. The patient needs a counterpart in the “empowered health professional” who welcomes the patient’s involvement and knows how to create an enabling healthcare environment.
Patient empowerment and involvement are part of the six principles of patient centred healthcare, developed by the International Alliance of Patients’ Organizations (IAPO) in 2005:
- Respect for patients’ unique needs, preferences, autonomy
- Choice of appropriate treatment option that best fits patients’ needs
- Patient empowerment and involvement in decisions that concern their health
- Access to safe, high-quality, appropriate services and support
- Information that is reliable, relevant and understandable
- Patient involvement in health policy to ensure services are designed with the patient at the centre
It is also important to recognise, according the EPF, that empowerment cannot be imposed “top down” - although it can be facilitated. A patient may choose not to participate in decision-making, delegating this to health professionals. The same patient, in different circumstances, may wish to be more or less involved in decision-making. Equally, a patient may opt not to receive any treatment, after a discussion of all the options. Some patients may also want to leave treatment decisions to the professional.
The EPF points out that equity of access and patient empowerment are closely interlinked. They are both system issues: Health systems and services should be designed to be empowering for all users, including disadvantaged or socially excluded patients. Application of patients’ rights and human rights generally should be ensured, such as meaningful informed consent focusing on the patient’s ability to make meaningful choice, rather than on legal protection of healthcare staff; effective mechanisms should be in place to ensure non-discrimination, both within and outside the health system.
Information is a key factor to empower the patient
In 2002, in the Lancet Oncology, it was made clear that patients with cancer have great informational needs. Furthermore, many patients wish to participate in decisions about their own care (Michael Jefford and Martin H N Tattersall, 2002). This has not changed in recent years.
If people are informed and engaged in all phases after a cancer diagnosis, they will be more adherent to therapies and have more opportunities to bear the uncertainty (Cutica et al., 2014). In this framework, people are encouraged to take an active role in the care process, to be aware and responsible, to gather relevant information and to adopt a strategy for the management of chronic conditions (Chiara Marzorati et al, 2018).
In a crisis situation, such as a cancer diagnosis, it is important to have someone able to comprehend all the information regarding treatment options and prognosis and also to help the patient in day-to-day life (Ahmad et al., 2016).
Odai-Afotey A et al (2020), refer to research that has shown that oncology patients want emotional support from physicians, their families involved in their care, accessible information sharing, and to participate in the decision-making during the treatment process.
In their study, Chiara Marzorati et al. (2018), assessed if the level of knowledge and awareness about cancer disease and treatment, and patient participation and assistance differs between caregivers and patients. They conducted a descriptive, cross-sectional study across five countries (Italy, United Kingdom, Spain, France and Germany) on a total of 510 participants who directly (patient) or indirectly (caregiver) faced a cancer diagnosis. They found that consistently with the literature, participants expressed a great interest in receiving high-quality information, which is a key factor to empower the patient, improve health literacy and improve awareness on their condition in order to make informed decisions.
Poor communication has a cost
Doctors don’t always have or take the time to explain all the symptoms of a disease or all the side effects of a drug and patients don’t always remember all of the details given during a doctor’s appointment. According to Thorne et al. (2005), poor communication in cancer care may also have an economic impact. In their paper, they described three types of costs because of poor communication: the cost of psychological distress, the cost of unnecessary treatment and the cost of indirect system distress (e.g. distress by healthcare providers).
Thanks to the Internet, patients are often better informed and able to take a more active role in their care. If a patient goes to see a doctor having already picked up some information online, in theory, that person will get more out of the consultation and better understand what the doctor is talking about. Unfortunately, the Internet can also cause anxiety or encourage dangerous behaviour. The order in which search results are displayed on the Internet does not reflect the quality of the information. Patients also click on links to ads listed at the top of the search results page. Several of these ads are designed to sell them dubious or even illegal treatments.
The majority of cancer patients favour active patient participation in decision making as do oncologists. Both the oncologist and the patient have an important role in the shared decision- making process, and these roles complement each other.
Important to note is that time outside consultations is an essential part of shared decision-making in oncology and not merely a facilitator. That is, shared decision-making extends to the world of the patient and is not confined to the space where oncologist and patient meet. Outside the consultation, patients can consider their options, consult others, or search for information, all as part of the shared decision-making process (Hanna Bomhof‐Roordink et al., 2018).
The key objectives of shared decision making (SDM) in oncology, are achieved when (1) patients are fully informed of the treatment options and the trade-offs between risks and benefits, and (2) patient values and preferences are incorporated into treatment decisions (Steven J. Katz et al., 2014).
- (NCCS), www.canceradvocacy.org
- Patricia A. Ganz (2014), Institute of Medicine Report on Delivery of High-Quality Cancer Care Journal of Oncology Practice 10, no. 3 (May 01, 2014) 193-195.
- Steven J. Katz, et al. (2014), Shared Decision Making for Treatment of Cancer: Challenges and Opportunities. J Oncol Pract. 2014 May; 10(3): 206–208.
- European Patients' Forum (EPF), www.eu-patient.eu
- Michael Jefford and Martin H N Tattersall (2002), Informing and involving cancer patients in their own care. Lancet Oncol 2002; 3: 629–37.
- Cutica I and Vie GM, Pravettoni G. (2014), Personalised medicine: The cognitive side of patients. European Journal of Internal Medicine 25(8): 685–688.
- Ahmad FS et al. (2016), Comparing Perspectives of Patients, Caregivers, and Clinicians on Heart Failure Management.J Card Fail. 2016 Mar; 22(3):210-7.
- Odai-Afotey A et al. (2020), Defining the patient experience in medical oncology. Support Care Cancer. 2020 Apr;28(4):1649-1658.
- Chiara Marzorati et al. (2018), Health Psychol Open. 2018 Jul-Dec; 5(2).
- Thorne SE et al., (2005) Psycho-oncology. 2005 Oct;14(10):875-84; discussion 885-6.
- Hanna Bomhof‐Roordink at al., (2018), Shared decision making in oncology: A model based on patients', health care professionals', and researchers' views. Psycho-Oncology Volume 28, Issue 1