Mr Lim

The principle that physicians should not harm their patients (non-maleficence) is well established in medical ethics. Dr Fan is distressed because by providing Mr Lim with prescriptions for prednisolone and NSAIDs, she believes she is violating this principle. Unfortunately, both she and her colleague at the polyclinic, Dr Balakrishnan, do not feel as though they can provide the care their patients need because these patients cannot afford more effective treatments.  Although the cost of care often influences the decisions that patients, particularly lower income patients, make about their care, Dr Fan and Dr Balakrishnan were uncomfortable having conversations about these issues. They were probably not trained to discuss healthcare financing, and felt more comfortable focusing on clinical issues. In Dr Fan’s case, it was easier for her to offer a short-term solution – a referral – and pass the more difficult problem on to other clinicians and to Mr Lim himself. These issues were complicated further by language barriers.

Understanding financial barriers faced by patients

Despite the factors that can make it difficult to discuss costs with patients, clinicians, and the healthcare organisations for which they work have an obligation to discuss this issue openly and help their patients overcome financial barriers when possible. When it is not possible to address financial barriers, and it becomes necessary to make difficult decisions about rationing care, it is important for the process to be as transparent as possible, so that clinicians and patients will understand their options.

What should clinicians do when they believe their patients are making poor decisions on the basis of cost? Mr Lim implores Dr Fan to provide him with the drugs because he is desperate to get back to work. Missing work will almost certainly harm Mr Lim’s well-being because he cannot afford to lose income. We are also told that Mr Lim, who does not have any family, regards his customers as his family; work may be important to his psychological well-being too. It is also easy to understand why Mr Lim might be frightened by the surgery, and its physical and financial consequences.

Discussing costs with patients

Because their conversation is so brief, we don’t really know whether Mr Lim fully understands the long-term implications of his decision. We also don’t know whether Dr Leong has discussed these options with him during previous visits. Dr Fan is worried that she passed this problem back to him, but they may both be guilty of passing Mr Lim’s problems on to clinicians at the hospital. Has anyone from the polyclinic discussed the possibility of a hip replacement with Mr Lim, or the possibility of financial assistance in the form of either Medifund, or private charity?

Healthcare organisations have an obligation to discuss the costs of medical care. Although physicians should not have full responsibility for providing this information to their patients, they should be prepared to address the issue of cost, and to involve social workers and other professionals in their organisation who are more knowledgeable about public assistance and charity care in such conversations. Polyclinics in Singapore employ medical social workers and financial counsellors who can explain the options available for financing care when patients have difficulty paying for their care.  However, these professionals may not be able to provide information about patient access to Medifund at the hospital. If patients need expensive hospital care, there are committees at each hospital that review applications for Medifund. While clinicians, social workers and financial counsellors at polyclinics may not be able to provide detailed information about hospital policies, they should refer their patients to appropriate professionals at hospitals. Similarly, hospital Medifund committees should be as clear as possible about the criteria they use to make funding decisions. While these committees will always require a degree of flexibility, the criteria should be clear enough that physicians caring for patients in the community can know when financial assistance is possible so that they may develop realistic care plans.

Resource allocation in healthcare

The conversation between Dr Fan and Dr Balakrishnan also raises the question of allocating scarce resources. It is tempting to address the concerns by asserting that Medifund ought to pay for relatively costly treatments for patients who need them. Although that may indeed be a feasible solution for such patients, the questions raised by this conversation are often not easy to solve. There are, and should be, limits to how much money any society spends on healthcare. Even if health is the only thing we value, it makes little sense to spend all of our resources on medical care because other things influence our health as well. As a result of scarcity, patients who may benefit from additional healthcare services may not be able to receive them. What criteria should be used to determine who receives medical services?

Finally, many people argue for allocating medical care on the basis of need, but determining need can be complicated. Mr Lim and Dr Balakrishnan’s patient are both in pain and could benefit from different types of interventions: in one case, a one-time surgical procedure plus rehabilitation, in the other case, lifelong drug therapy. Should the hospital attempt to compare their current pain or function? If so, what measures should they use? Should the cost of the treatment be the major factor? What about the patients’ family circumstances – should the fact that Mr Lim has no family and is self-supporting, or that the other patient’s income helps support other people, be taken into account, or should the criteria be limited to medical need and hospital resources? There is disagreement about these issues within bioethics, but there is broad agreement that the decision-making process ought to be fair and open. It is important for healthcare organisations to establish clear policies so that clinicians will be able to provide patients with the information they need to make better decisions.

Practical difficulties arise for doctors when developing and negotiating relationships with patients within clinical encounters, and these difficulties are accentuated when providing care to people who are living with chronic conditions. It is important that doctors continually reflect on how to manage these difficulties in their consultations with patients.

In Dr Fan’s discussion with Dr Balakrishnan, she is reflecting on a difficult encounter and seeking to improve her professional practice. This form of self-reflection, undertaken in consultation with colleagues, is the first step in developing an ethical awareness and concern for practising good medicine.

Decision-making and the patient

The influences of recent writings about patient-centred care have led the ‘right’ decision to be understood as the one that is right according to the patient. This might then suggest that Dr Fan’s role is to merely seek out and draw upon information about Mr Lim’s desire to continue working, in light of his subjective experience of illness, as one component of an evolving life-plan.

Despite appearing attractive, this approach to determining the correct form of the doctor-patient relationship is problematic. First, it is patients’ wants rather than their needs that are driving the medical encounter. This might cause a patient to be harmed by the decision that they themselves make, and is likely to involve allocating health resources in ways that are not in line with general principles of justice. It is also at odds with practice in healthcare systems, where doctors’ competence is often interpreted in terms of their ability to drive the medical encounter and recommend options to the patient. Second, understanding autonomy as a mandate places very great responsibility on patients. Active participation by patients could be distressing or onerous for those patients who are not used to making decisions, or who wish to delegate information-gathering and decision-making responsibility to others whom they trust. Mr Lim may have been open to serious negotiation with Dr Fan on the relative benefits and risks to his livelihood of the plausible treatment options, had Dr Fan explored this important concern of Mr Lim’s more deeply with him, and discussed a plan for his treatment in that light.

How could Dr Fan and Mr Lim better share in decision-making?

Sharing decision-making occupies a middle ground between patient choice and medical paternalism, seeing the patient and doctor as collaborative partners in each and every healthcare encounter. As partners, each takes an active and participatory role in determining how the relationship functions.

As a first step, Dr Fan should focus on managing her treatment relationship with Mr Lim, rather than focusing narrowly on making medical decisions. To do this, she ought first to ascertain the role that Mr Lim would like to play in the healthcare encounter. Mr Lim could choose to make decisions, to delegate responsibility for decision-making to Dr Fan, or to request the involvement of others in the decision-making process. Assuming that Mr Lim chooses to play an active rather than passive role, Dr Fan should then ensure that she and Mr Lim are able to share their views on which care regime or treatment pathway they think would be best – and negotiate between their views when they conflict. Both Dr Fan and Mr Lim are invested in the relationship because of interlocking values: Mr Lim because his health is at stake, and Dr Fan because of her concern for Mr Lim’s welfare. A shared decision is possible where each agrees with and appreciates some part of the other’s values and interests.

How could Dr Fan improve her relationship with Mr Lim?

Dr Fan’s consultation with Mr Lim was brief, and one-off encounters are not conducive to sharing values and perspectives. However, even in a short, one-off encounter with a patient, Dr Fan has a responsibility to offer the patient a way to make a shared decision. If the circumstances of a truncated consultation make the approach outlined above unrealistic, Dr Fan should still aim to balance Mr Lim’s personal preferences with what would in her judgement benefit rather than harm him, and to collaborate with her patient on a more effective treatment plan. Dr Fan’s resolution might also have been more explicit about continuity of care in the polyclinic setting, in view of Mr Lim’s resistance to changing the flawed plan, and his likely need for assistance in pursuing a better way to manage his condition.

Accepting continuing care as the ethical basis of the doctor-patient relationship in this case, Dr Fan should work with Dr Balakrishnan and her other colleagues to tackle some of the structural limitations that can undermine shared decision-making with patients.

Continuing care is especially important when managing long-term conditions in the polyclinic. This is because continual changes in prognosis, life planning or experience can subtly alter both the patient’s and the doctor’s perspective, placing additional emphasis on the importance of continuing to share and negotiate values. In contrast to medical evidence or treatment decisions, this type of knowledge and understanding cannot easily be communicated between professionals via patient notes. In addition to the specific obligations falling on Dr Fan, the healthcare team and managers in the polyclinic should work together to begin the process of reforming operating procedures that prevent Dr Fan and her colleagues from maintaining continued, long-term contact with their patients.

Among common inflammatory rheumatic diseases, ankylosing spondylitis (AS) has the longest diagnostic delay, with a period of 5 to 10 years between the onset of symptoms and diagnosis. AS is characterised by inflammatory back pain and restricted spinal mobility. Up to 50% of patients with AS develop hip arthritis, and many will undergo hip replacement surgery. It affects people at an early stage in their working lives. Symptoms may persist throughout adult life, although some patients report an improvement later in life.

The consequences of active spinal disease – including spinal rigidity and increased risk of spinal fractures – are irreversible. Impacts of AS on the patient include pain, stiffness, fatigue, sleep problems, treatment side effects, worry about the future, interference with leisure activities and activities of daily living, high rates of unemployment, early retirement, and lost work days. There is no cure for AS. The goal of long-term management is to keep pain and inflammation under control.

Mr Lim, who has been suffering from AS for many years, is now trapped in the vicious cycle of survival, dependent on NSAIDs and steroids to keep his pain and stiffness at bay, which allows him to work. This in turn allows him to function in society as his customers are like family to him. His job, therefore, not only provides him financial but emotional support. Like many people who live with long-term chronic illness, he may rely on what is familiar to get him to work, and into the world, every day. The idea of surgery may not look like a solution, but a disruption and a risk. However, his present situation is that of living with pain and making do with minimal available resources. Until someone at the polyclinic (also a familiar part of his world) intervenes to offer him a clear explanation of what hip replacement surgery at the hospital would entail, and how it could alleviate his symptoms, thereby enabling him to continue working, he is stuck in a rut. At the polyclinic, someone – a physician, a social worker, or both – will need to take the initiative to have a different kind of conversation with Mr Lim, about the benefits of seeking a specialist opinion, about physical therapy, and about the practicalities of paying for treatment, arranging appointments, and getting back to work.

Changing Mr Lim’s mindset and partnering with him in shared decision-making will free him to move from his firmly entrenched and understandable stance; his dependency on a care plan that is causing harm has been emplaced by professionals, and it is now up to professionals to offer Mr Lim realistic options to empower him to manage his AS better and improve his quality of life.