Mdm Lee

The impact of changing healthcare practices

Advance care planning (ACP) is a new development in Singapore’s healthcare landscape, and this case features common problems centred on the management of a change in care practices and the often steep learning curves that healthcare professionals must navigate in the process. The ethical value of ACP lies in the recognition of the right of competent persons to participate in decisions concerning their healthcare and well-being if they should later lose their ability to decide on these matters for themselves. ACP encompasses advance medical directives (AMDs) regarding medical treatment or decisions to limit treatment, and also broader goals of care that can guide care planning over time.

Advance care plans are not limited to treatment decisions, but contain information relevant to care such as a person’s values and ideas about what makes his or her life worth living. They should also record a person’s decisions about care arrangements in the event that she loses the capacity to decide for herself. They often include a person’s designation of a certain individual or a number of persons as his or her decision-maker. While there is no fixed format or approach for framing advance care plans, they may often be categorised as one of three types: general, disease-specific, and preferred plan of care.

Mdm Lee suffered from diabetes and eventually also Alzheimer’s disease. She had written an advance care plan that was specific enough to include her choosing to “not be hospitalised, resuscitated, or tube-fed should her condition deteriorate seriously and irreversibly”; and she had given “consent to receive certain medical treatments, such as antibiotics and her diabetes-control regimen, within the nursing home.” She had also appointed Mrs Yong as her decision-maker or ‘donee’. While an advance care plan aims to prevent problems with decision-making, confusion can arise if there is uncertainty among professionals or family members about how to implement an advance care plan.  Healthcare professionals who are unfamiliar with how to use advance care plans may grapple with uncertainties over the interpretation of the previously recorded intentions of seriously ill and incapacitated patients. Furthermore, changes in healthcare practices have not only case-specific but systemic implications, requiring organisations implementing changes to be responsive to their expected impact.

Conflicting preferences within a care plan

Nurse Ang and the junior nurses face a conflict between continuing the medical treatments that Mdm Lee had requested (medications for diabetes and occasionally antibiotics), and her refusal of the NG tube through which nutrition, hydration and medicines were being administered. They also know that withdrawing nutrition and hydration from patients who will no longer benefit from their continued administration, including those in Mdm Lee’s current condition, courts controversy and conflict with patients’ families. They know that causing stress to Mdm Lee’s loved ones would not have been among her considered wishes, but they currently lack the relevant knowledge and communication skills to manage, ameliorate, or resolve such conflicts by discussion and consensus.

The skills required for facilitating ACP are eminently teachable, and many training programmes and web resources are available to healthcare professionals in Singapore. Clinicians and other healthcare professionals should deploy these skills as part of good practice in the care of seriously ill patients. Trained ACP facilitators should be able to recognise potential conflicts in treatment and other preferences during the ACP process. The conflict inherent in Mdm Lee’s preferences would have been flagged at that time and reconsidered. Conflicts cannot always be avoided but facilitators should be mindful of how to take steps to minimize them.

Uncertainties about the impact of interventions on patient health and well-being

It is foundational to successful ACP that healthcare professionals are knowledgeable about disease trajectories, available treatments, healthcare support services, the risks and benefits of various procedures, and the patient’s overall well-being.  When professionals are uncertain about empirical findings, how to modify care plans to respond to a patient’s changing condition, or how to work with families, (all challenges that Nurse Ang and her staff experienced), it will be difficult for them to use advance care plans as designed.  Opportunities to learn from empirical research, best-practice guidance, and clinical specialists should be part of their professional education.

 Unclear formulations of patients’ instructions and their legal status

An advance care plan will often cover requests regarding cardiopulmonary resuscitation (CPR), the preferred place of death, and state preferences for additional medical interventions such as intubation, ventilation, comfort measures, dialysis, and use of antibiotics and other medications. The interventions that should be identified and discussed with the patient are those that are foreseeable given the patient’s disease and condition. However, it is not easy to “cover all the bases” in the initial version of an advance care plan because there will often be unanticipated circumstances or developments.  Reviewing and updating advance care plans periodically with patients and other decision-makers helps to ensure that the documents reflect the patient’s current condition as well as their preferences.

It is important to emphasise that making advance care plans with patients and families is not mere paperwork. Practising medicine with a care plan based on careful discussion with patients about their preferences and values is ethically sound.  In this case, Mdm Lee and her caregivers appear to have made a disease-specific advance care plan tailored to a known progressive and life-limiting condition. The plan seems to have worked, until Mdm Lee developed the swallowing difficulties associated with the final stage of Alzheimer’s disease. The staff members were uncertain how to reconcile this development, the advance care plan’s specific instructions about the interventions the patient did not want, and their own concerns about how to ensure that the patient received the medication that, as far as they knew, they should still be administered. Training staff to use advance care plans should encompass how to respond, working from the patient’s preferences, when conditions change, even if the advance care plan has not spelled out every detail. In this case, an intervention the patient did not want had been hastily started due to concerns about how to administer a routine medication; specifically, staff members were concerned about family complaints. However, staff should have been prepared, as part of their training, in how to adapt a care plan as a patient nears the end of life. The family should have been updated promptly on the patient’s changing condition and its implications for routine medications that might no longer reflect a patient’s preferences or be consistent with the patient’s best interests.

Conflicts over the decision-making authority of donees

Finally, the scope of the donee’s authority to make decisions is limited in this case, since healthcare decisions involving life-sustaining treatment are vested with clinicians under the Singapore Mental Capacity Act (MCA); clinicians have a legal duty to make decisions in the patient’s best interests. Because Mdm Lee has an advance care plan, the clinician making a best interests judgement is required to take account of her express preferences and wishes. Mrs Selvaratnam needs to make clear to Mrs Yong and Mr Heng that even though they have a right under the MCA to be consulted about Mdm Lee’s wishes, they are collaborators with clinicians in decisions about the patient’s best interests.

System-wide and organisational ethics

Given the expected challenges of introducing new practices such as ACP, Mrs Selvaratnam has an obligation to build up an organisation that patients can trust to respect their choices. The health ethics literature describes the values of humanity, dignity, service, stewardship, and trust, which can guide her in considering her organisation’s relationships to key stakeholders in ACP, including patients and their families, employees, the wider community, and its expectations of good healthcare.

To understand what is going on in this case, it is important to keep in mind that a nasogastric (NG) tube is a life-sustaining, invasive medical treatment. A patient’s right to refuse medical treatment includes the right to forgo interventions such as artificial nutrition and hydration (ANH). Because feeding tubes, like antibiotics or routine medications, can seem so common, their ethical dimensions can be overlooked. Mdm Lee did not overlook these important considerations when she had the capacity to make medical decisions, nor did her loved ones or her other caregivers. During the advance care planning process, she was able to ‘translate’ her preferences – to avoid invasive procedures and hospitalisation – into a document intended to guide her future care so that it was consistent with her preferences. Mdm Lee’s ‘family members’ are not her biological or legal relatives – her loved ones are also her employers – but the case suggests deep, traditional, decades-long ties of trust and knowledge between the ‘amah’ and other family members. When Mdm Lee expressed her preferences, no one who knew her well raised any questions or objections.

So what happened? Four further questions may help in answering this question.

What are all of the factors that led to Mdm Lee receiving an intervention she did not want and that is unlikely to benefit a person with her underlying condition?

Mdm Lee has Alzheimer’s disease. As the case notes, during the end stage of this terminal disease, it is common for patients to lose the ability to swallow. Failing to adapt a patient’s care plan in response to this sign of disease progression puts the patient at risk for choking and aspiration pneumonia. These are foreseeable developments in the care of a patient with this progressive disease. However, the nursing home staff were not prepared to deal with these developments in at least two ways: with respect to how Mdm Lee’s care plan would need to be changed to accommodate her changing condition; and with respect to how this change in her condition would need to be explained to her loved ones.

Healthcare workers who care for patients with Alzheimer’s should be familiar with the extensive evidence-based recommendations now available on how to provide good care when a patient is losing the ability to swallow due to disease progression. The evidence shows that a feeding tube will fail to benefit, and may harm, a patient in Mdm Lee’s condition, that is, an Alzheimer’s patient near the end of the disease process.

So why did Ms Ang, a senior nurse, resort to an intervention that was more likely to harm than to help her patient? The case notes that the staff was ‘frustrated’: it was hard to get ‘the nightly meal’ into Mdm Lee. But Mdm Lee’s condition was clearly changing. A patient with Alzheimer’s disease who is losing the ability to swallow should have been recognised as a patient nearing the end of life, a patient whose nutritional (and other) needs were changing. The routine of the ‘nightly meal’ would need to change in response to the developments. However, it is difficult to change routines. To do so requires a clear, realistic alternative, leadership, and a lot of practice. That evening, Nurse Ang resorted to expediency, either without checking Mdm Lee’s advance care plan, in which she explicitly refused artificial nutrition and hydration, or ignoring it. Even if Mdm Lee had not explicitly refused ANH, Nurse Ang was acting against current medical guidance concerning this precise situation. Was she aware that what she was doing would not work, would not change the underlying disease process, and would not protect Mdm Lee from harm? Or was her fear of complaint and her desire to help her staff get back to their routine so strong that it overrode the ethical obligation to do no harm?

What are the consequences, for Mdm Lee’s quality of life, and of failing to respect her preferences; and why does this matter to her and to others?

Mdm Lee is deeply immersed in generations of life in her family. Clearly, Mdm Lee is respected and beloved, and while she can no longer recognise visitors, she has been able to take pleasure in their visits. Even with advanced Alzheimer’s disease, Mdm Lee has still been socially connected to her environment, and in particular, to the family members whom she has cared for and who now care for her. Sedating and restraining Mdm Lee to accommodate a medical intervention that she did not want and that is not medically indicated fails to respect her as a person and as a patient. It also greatly diminishes her remaining capacity for pleasure and for the most basic social bonds connecting her to her family.

What should the nursing home director and Mdm Lee’s family discuss and do now to ensure her comfort for the remainder of her life?

The first thing Mrs Selvaratnam should do, after reviewing Mdm Lee’s care plan and talking with her medical and nursing staff to understand the incident, is to explain what happened and why it was wrong, offering an apology to Mr Heng and Mrs Yong on behalf of the institution. The apology is really owed to Mdm Lee, but offering an explanation and apology to her family members will help to clarify that the feeding tube was an inappropriate and unwanted intervention, and that efforts to accommodate the tube failed the patient further.

The very next thing Mrs Selvaratnam should do is to explain Mdm Lee’s changing condition, so that both family members receive clear information about choking as a sign of the progression of her underlying disease and the medical evidence concerning how this development should appropriately be addressed. It is immensely important for the nursing home director to explain that a patient with advanced Alzheimer’s disease who can no longer swallow the same ‘nightly meal’ as other patients without choking should not be force-fed, whether by mouth or by medical interventions. Mdm Lee may still enjoy eating smaller amounts of food, or specific favourite foods, and ‘comfort feeding’ (hand feeding experienced as comfort, not to the point of provoking distress) may be an appropriate part of her care plan at this point.

Mrs Selvaratnam should directly address common fears and concerns, expressed by Nurse Ang and Mrs Yong, namely, that a patient near the end of life who is no longer able to eat as she did previously is ‘starving’ or being deprived of ‘food and water’. Carefully explaining what is known about the nutritional needs of a patient like Mdm Lee, and how Mdm Lee’s comfort can best be ensured at this point in her life, can help allay these fears. Like the nursing staff, families also need to understand when it may be necessary to change a routine to promote a patient’s well-being and protect them from harm. Mrs Yong’s concern about what ‘the superstitious relatives’ might say about ‘hungry ghosts’ – a reference to the Chinese folk belief that a dying person should be fed to ensure a peaceful transition – should also be addressed. Mrs Yong may literally be concerned about how to explain Mdm Lee’s care to the larger family in a culturally appropriate way. As a nursing home director in a multicultural city, caring for elderly Chinese residents and perhaps elders from other cultures, Mrs Selvaratnam should, as part of her job, be familiar with common local beliefs and practices about the care of the sick, the dying, and the dead. There may, for example, be symbolic ways to address cultural concerns about food and feeding, while explaining why tube feeding, a medical intervention, is not appropriate for some patients near the end of life. Mrs Yong’s remark about superstitious relatives may also reflect her own confusion and concerns: what is the right thing to do for Mdm Lee as she is dying? It may help Mrs Yong to be reminded that Mdm Lee, a Chinese elder who, no doubt, knew about the hungry ghost tradition, did not herself believe that tube feeding was necessary at the end of life; she said she did not want this.

What should nursing home staff do to provide good care when they encounter challenges in the care of frail elderly patients nearing the end of life?

Nursing home staff need guidance in how to provide good care to residents near the end of life while also providing good care to other residents, who may have quite different needs. As part of her review of this incident, Mrs Selvaratnam should aim to find out what her staff know about advance care plans, including why they are important as well as how to use them in providing care. The nursing home director should also encourage her staff to talk candidly about their own needs and concerns when a patient whose condition is deteriorating begins to either have difficulty eating, or shows little interest in eating. Addressing staff fears of complaints or reprimands should also be part of this discussion, as improvised action taken to prevent a complaint or keep a routine on schedule can have disastrous consequences for patients who, due to their condition, are unlikely to be able to advocate for themselves. The nursing home director should also ask her staff if they themselves have concerns similar to those expressed by Mrs Yong. Airing these concerns (which may include legal, religious, cultural, or personal concerns) and following up with education on how to provide good care to Mdm Lee and others like her at this stage in their lives will support nursing staff on every shift.

The case of Mdm Lee, the much-loved family amah, represents an aspect of the ‘silver tsunami’ that Singapore will face as our society ages, and as numbers of dementia patients increase. It also illustrates a common problem with advance care planning, which is that discussing and documenting one’s wishes is only the start of the process. Unless those wishes are honoured, all the effort will come to naught.

The challenging issue with this particular case is that it involves the inability to eat, which we have been conditioned to think of as a human act so basic, even newborns instinctively suckle. Beyond the notion of its physiological role, eating and drinking have social, philosophical, emotional and spiritual meanings that influence how we view nutrition at the end of life.

Thus I would like to discuss two issues: ACP, and eating or drinking at life’s end.

Why doesn’t ACP work as it should?

The idea of the ACP has been around for years, but it is still not part of routine care in most clinical settings. The basic premise is simple: when a person is well and has capacity, he (or she) makes a statement about wishes and preferences, and about treatments related to specific conditions that may crop up in the future. That is the ‘advance’ part – planning for the future. Then, sometime in the future, when that person is ill and unable to express his wishes, that statement of wishes is retrieved and (ideally) acted upon.

But there are many pitfalls along the way, which include: not being aware of the document; inability to retrieve the ACP; the treating medical team or the next-of-kin disagreeing with the document. Some of these may be ameliorated by developing robust systems and by raising overall awareness, but many barriers remain.

Even if the treating doctors pay attention to the document, there may still be instances of uncertainty. For example, Mdm Lee may have made an ACP document stating that she did not wish to be admitted to hospital. What if she then develops a urinary tract infection that will only respond to intravenous antibiotics? Going by the literal interpretation, she would not have any treatment at all. But if she were to go to hospital for a course of antibiotics, she might well recover to her baseline state.

Thus some have advocated that an ACP should not state specific scenarios – because there is no way to predict every possibility – but perhaps emphasise goals and values. They are a valuable guide to what the patient might want were she able to communicate. Hence ACP frameworks such as Respecting Choices® have at their core the ‘Living Well question’, which is “What does it mean to you to be living well?”

Eating and drinking at the end of life

There are few issues more emotive then eating and drinking. Even the AMD Act (Advance Medical Directive Act) in Singapore states that while extraordinary life sustaining treatments may be withheld or withdrawn from the terminally ill, there still needs to be “reasonable provision of food and drink.” The question then arises, what is meant by ‘reasonable’?

There is good evidence now that reduced appetite and intake of food and drink is common at the end stage of many illnesses, and that artificial nutrition or hydration – whether by tube or intravenous drip – does not significantly prolong the life of the actively dying person.

There is also widespread acceptance that while assisting someone to feed orally – and this includes bringing food or drinks to their mouth – is basic care, and indeed a human right, once we resort to using tubes and drips, this becomes a treatment. All treatments should have a purpose, and be assessed on their merits in terms of risks vs benefits.

For patients with dementia, reduced food intake is universal in the advanced stage. It is well known that nasogastric (NG) tube feeding, while facilitating nutrition, does not prevent aspiration pneumonia. Moreover tube feeding is associated with its own set of risks; when physical restraints have to be applied in order to prevent the person from removing the tube, then the risks are multiplied. So even in situations where tube feeding has the potential to achieve the physiological aim of providing nutrition and hydration, it may do so at the expense of individual comfort and dignity.

Too often, frail and ill patients are given treatments without careful consideration of the goal of care, of what we are trying to achieve. As people near the end of their lives, there is often a preference for quality of life over quantity of life, and less willingness to endure uncomfortable interventions for a non-meaningful outcome. The reality is that by this stage, patients are often too unwell, or cognitively impaired, to be able to participate in decision-making; the medical team has to rely on previously expressed wishes, or on relatives or proxy decision-makers.

The problem of what to do for a frail, incapacitated person will not go away; rather, it will grow in the years to come. The best preparation is to encourage ACP discussions early and to appoint a trustworthy decision maker. That is advice we would do well to heed ourselves.