Advocating for the Advocates

A smile is the chosen vehicle of ambiguity,” a thought-provoking quote by the poet Herman Neville. After all, what could be more inviting and comforting than a smile? Yet, when the underlying intent behind the smile is unclear, its consequence may be anything but positive. And so the same goes for patient advocacy. Patient advocacy necessitates physicians to lend a voice to those without one – their patients. Advocacy by itself is simple enough to describe, and there is general consensus regarding advocacy as a professional obligation in healthcare.

However, synonymous with the ambiguous smile that belies its intent, the ambiguously defined “patient advocacy” does not fulfill its role of representing the patients’ best interests.

Thus, in order to determine the best approaches for doctors to act as patient advocates, we first need to establish a working definition of patient advocacy, demarcate clearly its scope and practice, and  draw the line between patient autonomy and paternalism. Building on the initial definition by the American Medical Association, Earnest et al defined advocacy as an act for ‘social, economic, educational, and political changes that ameliorates suffering and threats to human well-being’.

Subsequently, Dobson parsed the definition into two; ‘agency’ – working on behalf of a specific patient’s best interests, and ‘activism’ – treating patients as a community, by changing social conditions affecting health.2 While most physicians are comfortable with advocating for a patient under direct care (‘agency’), the collective social responsibility (‘activism’) is sometimes neglected. This leads us to question, “What is the intrinsic value behind patient advocacy?”

Ideally, ascertaining patient wishes should involve consulting the patient directly.

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Unfortunately, this is not always possible, as patients who require advocates are frequently compromised due to their being vulnerable, incompetent, ignorant, or unconscious – thus explaining the need for an advocate to act on their behalf. However, critics argue that in certain situations doctors assume they know better than the patients themselves as to what is in the patients’ best interests. This represents the starting point for paternalism, which was typical of the doctor-patient relationship in the past, but has subsequently shifted towards patient autonomy (“the right to decide one’s own treatment and care”). Thus the question becomes, “Could we achieve adequate patient representation without resorting to paternalism?” To answer this, doctors first need to be cognizant of the occasional conflict between patient wishes and professional opinion.

After receiving all the necessary information and knowledge to make an informed decision, should the patient still insist on an option which – from the physician’s point of view – is a poor one, then the patient’s wishes is to be respected and upheld regardless. If the patient is unable to make a decision, advocates need to act according to their patients’ wishes, rather than by using their own professional judgement. From a legal standpoint, Fried compares the patient-practitioner relationship with that of a lawyer-client one, where lawyers occasionally compromise themselves and others to help their clients.3 Extending this notion to patient advocates is essential if we are to uphold the patient’s right to autonomy, a fundamental clinical ethic. Agency and Activism In keeping with the definition, patient advocacy begins with ‘agency’ – when physicians individually advise patients on their health.

The first step towards positive advocacy is to understand the patient’s needs, wants, and desires. Only after identifying these can the physician advocate by recommending healthy lifestyle changes, specifying diagnostic tests, writing referrals to specialists, and providing advice on important health-related issues such as hygiene, vaccination, and infection control. As the saying goes, “Medice, cura te ipsum”(Physician, heal thyself). Doctors best act as patient advocates when they lead by example – exercising regularly, not smoking or drinking, eating a balanced diet, and getting enough sleep – before advocating for their patients to do the same. Besides, doctors help patients navigate their way through the healthcare system, by assisting them in accessing the appropriate care that they are entitled to, without a compromise in quality.

This could involve writing to Social Welfare Services, requesting for patient priority to be given if urgent, or acting as representatives for their patients in dealing with external agencies, which include justice systems, insurance companies, and financial institutions. Overall, doctors ensure their patient’s rights are protected, and stand behind their right to autonomy when making difficult choices. ‘Activism’ can be sub-categorised based on scope. At regional level, doctors can advocate by campaigning for local services or establishing their own. This can take the form of out-of-hours service or even health clinics for the homeless. Furthermore, doctors should highlight important yet often overlooked health issues during community meetings, in an effort to raise public awareness, and to ensure further measures are taken by the relevant authorities. Moreover, doctors can apply their medical and first aid knowledge at local events.

For instance, doctors can take on an advisory role by providing professional input from a health and safety perspective, especially in sporting events where the risk of injury is higher. At national level, physicians drive advocacy by engaging in health-related discussions on various mass media. Some choose to become actively involved in national health conferences, while others – preferring to adopt a less public approach – opt to help by answering medicine-related questions on the various online forums, threads, or blogs. In addition, doctors could actively involve themselves in the development of national associations in line with their specialty, and lobby for minimum standards and guidelines in healthcare practice. On a global scale, doctors can advocate by volunteering their knowledge and expertise, in support of international bodies targeting healthcare in crises-stricken countries and/or developing countries.

Barriers and Solutions While patient advocacy is inherently linked to the professional role of physicians, its multifactorial and complex nature represents a major hurdle for some physicians. An example of a contentious issue would be the uncertainty regarding the extent of advocacy deemed appropriate. This issue is further exacerbated by the lack of consensus among the views and opinions of other parties that also claim to have the patient’s best interests in mind. Such cases may precipitate accusations of overstepping boundaries, negligence, or irresponsibility on the part of the doctor in charge. Besides, some doctors are unsure of how to approach a particular issue, citing a lack of experience in the sociopolitical or legal aspects of healthcare. As such, they fear a wave of backlash from their colleagues or employers, which may mar their reputation. Yet other doctors may feel that their efforts are futile or unwarranted.

Overall, the inability to effect positive change through advocacy is cause for frustration, and may drive physicians to become complacent or pessimistic. Ultimately, these barriers need to be addressed. In order to ensure successful advocacy with minimal backlash, some strategies and suggestions could be adopted. These include presenting opinions based upon factual evidence, and being clear and unambiguous when commenting online or in interviews. Regarding the issue of possible retribution, doctors should obtain hospital clearance before partaking in activities where the hospitals are implicated, and discuss at length with the relevant parties before engaging in public advocacy activities. Moreover, doctors have a duty to respect patient autonomy and confidentiality, and should strive to maintain a balance between patient expectations and limited resources.

As part of a larger community that presents itself as patient advocates, physicians should approach any issue with transparency and integrity, and welcome other suggestions and ideas from external parties, whilst simultaneously expanding on common ground. The IMO Guidance on Public Advocacy4 outlines six methods for physicians wishing to act as advocates for their patients. Firstly, carrying out the necessary research. Background review of the literature is crucial to prevent misappropriation of facts, and to justify a certain action or stance. Secondly, identifying the target audience and redirecting all efforts towards them. Thirdly, knowing the audience. By becoming acquainted with their needs and desires, doctors can decide the best way to approach and reach out to their target audience. Fourthly, keeping the message short and simple.

This can be achieved by repeating and reinforcing key points only. Fifth, being cognizant of one’s limitations. Physicians should be able to profess uncertainty regarding an issue beyond their scope, and consult with an expert for their opinion. Lastly, evaluation and follow-up. This is essential in determining efficacy, and as a form of critique to improve future efforts on public advocacy. Acknowledging Other Advocates While physicians are at the centre of patient advocacy, other facilitators exist as well – their role should be given due recognition. For instance, nurses’ duties frequently complement and overlap that of a doctor’s; they play an essential role in patient care, and by extension, in patient advocacy. Professional bodies and government agencies – some outside the context of healthcare – also aim to represent patients’ wishes.

The Alliance of Professional Health Advocates (APHA) and National Patient Advocate Foundation (NPAF) are two such examples. In addition, family members frequently claim to know what is in the best interest of their loved ones. These may not tally with those of the physician. Recognizing the role that these various parties play in patient advocacy – simultaneously leveraging the strengths that it confers ( “many hands make light work” ), while navigating around the existing limitations ( “too many cooks spoil the broth” ) – is in itself a form of patient advocacy. Subsequently, less conflict, more tolerance, compromise, and mutual respect with other parties are paramount in ensuring that patient wishes and desires are best represented.

Unfortunately, more often than not, solving a contentious issue – where all parties genuinely believe they are acting in the best interests of the patient – is anything but easy. DNR and Assertiveness: A Textbook Example Who makes the final call in patient advocacy? With respect to patient autonomy, the individual should have the final say regarding any treatment, procedure, or medical decision. However, in some cases where a Do Not Resuscitate (DNR) order has been issued, families have been known to override the patient’s own wishes. In their moment of despair, the family members request resuscitation for DNR patients, in the hopes that they can “go out with dad one more time, or see mom knitting by the fireplace again” . This – while understandable – is selfish behaviour, as it does not respect their loved one’s wishes.

It also creates more confusion for the physician, whose hands are completely tied. Unfortunately, the laws and legislations in many countries are unclear as to who ultimately decides, and proponents argue that if family members can override a competent patient’s wishes, then the use of a DNR order is redundant. It is in this instance where doctors need to reprise their role as advocate for their patients, and be firm on carrying out the patient’s final wishes. Doctors should subsequently refer these cases to the Ethics Committee for their perusal. A proposed solution would be via a legally binding document to be made upon admission, when the patient is deemed competent to make the decision for him or herself. Family members should be consulted, and once the patient has made up their mind, their decision is final.

This has to be agreed upon and upheld by all parties. Conclusion In summary, doctors can best act as advocates by recognizing the intrinsic need to advocate for patients – both as individuals and as a community; ascertaining patients’ wishes directly; giving them the required information to make an informed decision; respecting their right to have their wishes fulfilled – even if it goes against their perceived needs; acting as a representative of their patients’ wishes, if they are unable to decide for themselves; representing their collective wishes in community, state, and international organisations, and  keeping patient autonomy sacrosanct at all times, even when in conflict with acting beneficially. In many ways, patient advocacy is analogous to fishing in a pond – each fish (patient) moves ever so slightly differently (has their own needs, wishes, and desires), but with the proper fishing rod (legislation, policies and strategies) and correct technique (physician’s knowledge, expertise, and experience), any fish can be caught (patient advocacy can be improved).