Mr Bok

When a new colleague joins the team, others may show him the ropes: here is a good place to get lunch, this is how the records system works – and these are the patients and families to watch out for. Dr Kumar receives a lot of this sort of advice from his new colleagues. As she hands him Mr Bok’s chart, Dr Kumar’s supervisor, Dr Vijaya, presents Dr Kumar with a readymade way to think about the patient he has not yet met: as a ‘problem’, a ‘difficult’ patient who has missed appointments, whom staff perceived as a drain on their time, to the extent that they had devised a system for sharing the load of dealing with Mr Bok. Later in the week, at a staff meeting, Dr Vijaya and others offer some explanation of why it has been so frustrating to care for Mr Bok. His pre-transplant care plan has fallen apart several times before. He does not seem to want to do the work needed to get a new liver. And if he cannot stick with the pre-transplant regimen, how will he possibly manage the post-transplant regimen?

This team cares exclusively for transplant patients, so they observe how different patients face similar medical problems and adhere or do not adhere to similar treatment regimens. It is reasonable for the members of this team to think about which patients could be at risk for ‘death by transplant’ – the rejection of a transplanted organ – because they do not adhere to the lifelong post-transplant regimen of immunosuppressive medications. It is also reasonable to think about whether a patient with a history of nicotine, alcohol, or drug addiction will be able to avoid the very behaviours that contributed to organ failure and could jeopardise the transplanted organ. And it is reasonable for this team to think about the extreme scarcity of transplantable organs: getting Mr Bok ready to be ‘matched’ with a donor means some other potential recipient must stay on the list.

Characterising patients in ways that suggest moral judgment – ‘good’ or ‘bad’, or the common clinical euphemisms ‘compliant’ or ‘non-compliant’ – is of ethical concern. Reducing a patient to a label makes it hard to see this patient clearly as an individual and in their family and social context, even when, in this case, Mr Bok is offering Dr. Kumar lots of clues to why he has missed appointments. A single parent may put his children’s needs before his own needs; a family caregiver may consider the health of another person before his or her own health. However, a transplant patient must, for a considerable period, put his or her own needs first, and look to family members or others for essential support. That Mr Bok may be having trouble adopting this view – or perhaps, understanding that he will need  to rely on his family and others to care for him before, during, and after a liver transplant – does not make him unique, or uniquely ‘difficult’. The clinical team’s friendly advice to their new colleague, Dr Kumar, could perpetuate the same pattern that hasn’t been working, including shuffling the patient among different physicians. There is an opportunity here for Dr Kumar to try to establish a rapport with Mr Bok – to focus on what the patient wants to live for, and to try to show the patient the steps that will be necessary to reach that goal – but first, he must question his new, in some cases, senior colleagues.

The shorthand of ‘difficult’ patients and ‘difficult’ families presents ethical challenges in other healthcare settings. In some settings, a patient may be perceived as ‘difficult’, in the sense of frustrating to care for, when his or her needs exceed the clinician’s available time or cannot be definitively resolved. Patients with chronic psychiatric conditions and, often, medical and social problems, who may return again and again to a hospital emergency department, are frequently perceived as ‘difficult’, for reasons that may include not only their behaviour, but also the difficulty of resolving their problems. Families who disagree among themselves, or with medical professionals, are frequently characterised as ‘difficult’, particularly in the stressful context of decisions about the care of incapacitated patients. Patients can suffer, and potentially productive courses of engagement and action can be overlooked, if clinical perceptions reduce the complexity of illness to whether a patient is ‘good’ or ‘bad’ – or whether a patient’s family is a source of compliments or complaints.

Dr Hamid suggests that the transplant programme should not recommend Mr Bok as a candidate for a liver transplant because they cannot trust Mr Bok to abstain from drinking alcohol, keep his medical appointments , or adhere to the necessary anti-rejection medications after the transplant. Offering this patient a new liver, Dr. Hamid argues, would waste a scarce resource that could benefit another, more adherent patient who is more likely to benefit from it. By making this suggestion, Dr Hamid is encouraging Dr Kumar to engage in what is often called ‘bedside rationing’. Bedside rationing is when a physician withholds potentially beneficial medical services to a patient in order to make them available to other patients who may be perceived as more ‘deserving’. These perceptions may be driven by a clinical assessment of the relative benefits the service may provide to different patients or they may be shaped by a clinician’s views about the behaviour or other characteristics of the patient.

The reactions of Dr Hamid and his colleague Dr Vijaya toward Mr Bok are understandable. Not only are they concerned about the health of other patients who may need a liver transplant, they are frustrated with Mr Bok and other patients at the clinic who are difficult and engage in behaviour that damages their health and undermines efforts by the healthcare system to help. It is easy to empathise with the reactions of the clinic physicians in this case. Furthermore, their assessment of Mr Bok’s capacity to change his behaviour and adhere to an appropriate treatment regime may be accurate. Despite this, their solution to this problem is not ethically sound.

Using a complex set of criteria to allocate scarce resources like organs for transplant, including the probability of success and the willingness of patients to agree to certain conditions, is common. All healthcare resources are finite, and organs are a particularly scarce resource. In Singapore, as in other parts of the world, the demand for organs is greater than the supply, so providing an organ to one patient means that it will not be available for another in need. In some cases, withholding an organ from a patient is consistent with the principle of beneficence because the patient is unlikely to benefit from the transplant. Although most liver transplants are successful, when there is evidence that a patient’s body will reject the transplant, even with the use of immunosuppressive medicines, it may be appropriate to offer the organ to another patient for whom the transplant has a greater probability of success.

In most cases, however, allocating organs for transplant involves ‘tragic’ choices in which people who might benefit from an available organ must wait, and some may die, before an appropriate organ is available. An issue that often comes up is whether the length of time a patient is likely to live with the new organ, or the quality of life that a patient is likely to enjoy after the transplant, should be factored into the decision.

Mr Bok’s case raises a related, but different concern. His inability to adhere to treatment and take necessary medications, coupled with the strong possibility that he will continue drinking alcohol, mean that even if the transplant is successful, he may damage his new liver and end up with similar health problems at some point in the future. This is a foreseeable problem and it is reasonable to factor this into the decision about offering him a liver transplant. Before withholding the transplant, however, it would be helpful for the team to better understand the circumstances that have led to his repeated failure to adhere to treatment in the past, so that they can develop a plan that might increase the chance of success.

One approach that is used in some transplant centers and that may be helpful here is for the medical care team to take a more structured approach to informed consent, through a document known as a ‘behavioural agreement’ in which the patient agrees to adhere to the behavioural changes needed to prepare for organ transplantation and for the transplant to succeed. This document is not legally binding but aims to give appropriate consideration to the special responsibilities of a patient who is a candidate for a scarce resource – a transplantable organ – in view of others likely to be waiting for this same resource. A behavioural agreement for a transplant patient would, for example, describe the family support that the patient will need before and after the surgery, and name the people whom the patient has identified as capable of providing him with the help he will need. It would also state the behaviours that the patient must avoid before and after the transplant. The process of constructing, discussing, and signing a behavioural agreement may help strengthen Mr Bok’s commitment to the transplant regimen. It will also provide the clinic team with a reference point for future discussions should Mr Bok appear to have difficulty adhering to the regimen.

It is difficult to reach consensus on how to identify and weigh different, and at times competing, criteria for allocating organs and other scarce resources. A fair process for deciding on these criteria should be transparent, and the application of these criteria should be consistent across patients and healthcare institutions. The bedside rationing solution suggested by Dr Hamid is a problem because decisions about how to weigh considerations about costs and benefits, including the potential consequences for other patients, should be made at the policy level, not at the individual level. If individual clinicians are given the responsibility for making these decisions, it is likely that the criteria adopted will vary widely and it will be difficult, if not impossible, to make these criteria transparent. Furthermore, there is a danger that negative attitudes towards difficult patients like Mr Bok may influence the decision about treatment in ways that are inconsistent with the social consensus about relevant criteria. Individual clinicians should and will be involved in this process and may advocate on behalf of their patients, but decisions about what criteria to use for allocating organs should not be made at the bedside. Making these decisions at the policy level allows a clinician to respect the principle of beneficence and focus on providing the best care possible for their patient within the parameters of what is available in that society. Providing high quality medical care is hard enough; we should not make the jobs of clinicians even more difficult by asking them to take sole responsibility for how to allocate medical resources.

‘So you’re the latest doctor who’s going to tell me how to live my life?’ This was the first of a series of confrontational statements Mr Bok made when he met his new doctor. It is not surprising that most healthcare professionals may feel threatened by his hostile behaviour and be inclined to retaliate with the message, ‘You have no right to your anger. You have brought this upon yourself because you have a drinking problem’. However, we cannot overstate the importance for the healthcare provider to first address the anger in the room and respond assertively and empathically to the presumably ‘difficult’ patient. Otherwise, communication tends to disintegrate, affecting the level of care that is being delivered.

Addressing the anger in the room may also provide an opportunity for the healthcare provider to explore and identify the nature of the event(s) that provoked the hostility. Mr Bok’s anger could have stemmed from any or all of the following: (1) past and perceived negative experiences with other healthcare providers; (2) frustration with his life circumstances, including a failed marriage, caregiving responsibilities to his elderly mother and three children, financial difficulties, and stress from work; (3) exasperation at unsuccessful attempts in managing his alcohol and nicotine dependence; (4) anxiety over declining health and increasing mortality concerns; and (5) poor psychosocial support. Any attempt to persuade Mr Bok to adopt the view of the healthcare provider without first establishing rapport will likely result in a power struggle. By arguing with his patient, Dr Kumar ignores Mr Bok’s emotions and experiences, focusing instead on his duty to care as a doctor and being right. This may instead exacerbate feelings of resentment, alienation, and hostility in the patient. Such efforts are both unethical and ineffective.

Effective doctor–patient communication is central to clinical function in building a therapeutic doctor–patient relationship. Mr Bok’s presenting concern is that of late effect of advanced viral hepatitis, which is exacerbated by alcoholism. He also struggles with the issue of nicotine dependence. There is a need to first understand Mr Bok’s psychosocial circumstances – in particular, his substance use – in order to better strategise an intervention plan which would enable him to work towards his readiness for transplant.

This would require understanding the psychosocial triggers, the onset and pattern of his substance use, and other perpetuating and influencing factors. In the aspect of alcohol dependence, there would be a need to understand if Mr Bok engages in psychological or social drinking, or both, each having separate implications for treatment strategies. Mr Bok’s insight and motivation for change, specifically in the management of his substance use, need to be better assessed and understood. This should then be followed through with a plan, agreed between Mr Bok and the treatment team, to manage his addictions over a specified time period. Patients with substance use may be motivated for change. However, without the necessary support, structure, and psychosocial intervention and treatment, their ability to change how they manage their addictions could be limited. Expecting them to change overnight and on their own is neither realistic nor ethical. Providing the care and structure to facilitate change should be the way to go. As substance use is also associated with psychiatric co-morbidities, such as depression and anxiety disorders, there is a need to assess for psychiatric symptoms in Mr Bok, and ensure he receives the necessary treatment and support for those as well.

In addition, Mr Bok will need a committed and reliable caregiver for his recovery after a liver transplant, as well as a plan to care for his family during that time. The caregivers will in turn need to have social support, both informal and formal. Before any operation can proceed, the team will need to work with Mr Bok to make sure these are in place.

Every potential transplant candidate presents unique issues and challenges to the transplant team. Every hospital encounter requires effective communication skills for assessment and intervention in order to achieve excellent clinical outcomes and patient care. What appears clear in this instance is that Mr Bok wants help, but is unsure how he should go about getting it, given his psychosocial circumstances. His experiences and psychosocial context may explain in part his maladaptive coping in the form of substance use, which may have presented as barriers in his ability to manage his health circumstances. An individually-tailored psychosocial intervention plan, through effective communication with Mr Bok, would enable him to work towards his treatment goals.