Mdm Wu

Why Family Caregivers Count

Population ageing in many countries has meant that states depend on families to share in caregiving and also financial cost burdens in the provision of healthcare for elderly and disabled patients who are unable to cope on their own. In the UK, it has been estimated that 3 in 5 people will in their lifetime become caregivers.

Increasingly, societies are quantifying the value of family caregiving. In 2011, policy research in the UK found that the value of this care, based on the unit cost for adults and older people receiving home care and an estimate of the number of unpaid caregivers in 2011, exceeded total spending on health and social care in the UK National Health Service (NHS). This represents a large and measurable benefit to society that family caregivers informally provide, and their needs, which include dedicated healthcare support and various equal opportunities protections, should be addressed. Figures for Singapore are not presently known, but caregiver needs are beginning to gain greater visibility in healthcare practice, law, and economic policy.

The invisibility of caregivers in healthcare practice

Details are sketchy about Pamela Kuo’s personal circumstances, except that her mother lives with her and is in her care. It is not apparent that Pamela’s attempts to persuade her mother to undergo surgery for a hip replacement were solely for the sake of Pamela’s own interests; they could well be meant for her mother’s sake. Pamela may have surmised that if Mdm Wu were to be immobilised for long periods at her age and in her condition, she would be susceptible to misery, depression, and recurrent pneumonias. In that eventuality, what Mdm Wu least wanted for herself (being “in intensive care, hooked up to lots of machines”, like her late husband) might then emerge as a major risk.

Further, her assessment of her mother’s best interests is shared by Dr Sen. But it appears that Dr Sen neither discussed his assessment of Mdm Wu’s prognosis directly with Pamela, nor included her in the discussion he had with her brother Robert. Pamela herself was not regarded as having interests as a primary caregiver that deserved support and protection by Dr Sen and his healthcare team. Other than the patient’s best interests, however, healthcare practice needs to give voice to the interests of caregivers as collaborators in a care team.

Pamela had hopes that Robert would support her in her views, and that he would persuade their mother to consent to the operation. This did not happen for reasons that were unclear, but Pamela hints that her brother who lives apart from them was not in the best position to understand past histories, daily challenges, and long-term issues that she and their mother faced. The kind of support Robert has provided – mainly financial support for engaging a domestic helper – has clearly failed Pamela, since we know that she became quite exhausted and increasingly desperate about her mother’s deteriorating condition.

The complexity of family caregivers’ needs

Family caregivers like Pamela are often selfless in giving (uncompensated) care to sick family members, but their own needs are all too easily forgotten. Burgeoning research on caregiver needs reveals that unpaid family caregivers face serious problems of personal financial loss, curtailment of future opportunities for advancement, injuries to both physical and mental health, loss of personal time, and the need of respite care. In the face of this complex range of issues, Robert’s solution for his mother and sister was woefully inadequate. Introducing new live-in helpers into the domestic situation involves new dynamics that not all families can cope with well. Pamela’s selflessness may have been a problem in itself, if her expectations of herself are unrealistic, or if others are willing to take unfair advantage of it. Some of what his sister needed was clearly beyond Robert’s ability to provide. But where could Robert have gone to for help?

Help for families and family caregivers

Disagreements within families about the care of a seriously ill relative come in many forms. Part of the problem for Robert and Dr Sen was how to support Pamela. Pamela faced issues that she could barely articulate, for fear of seeming less than filial, and of harming a parent-daughter relationship.

Like his sister, Robert grappled with how best to fulfil his filial obligations. Robert considered it his duty to act as decision-maker, protector of his parent’s wishes, and family provider. But he may have ignored harmful patterns of cultural stereotyping, including gender biases, that unfairly disadvantage certain persons (his sister), or silence their interests.

In addition, Mdm Wu’s delegation of decision-making responsibility to her son may well have rested on Robert’s accepted authority in that family, or because he was paying for her care.

Nonetheless, the family member who has just arrived on the scene is not likely to be well-placed to make the right decisions without drawing upon the primary caregiver’s knowledge. Pamela’s welfare and interests deserve protection as a matter of justice. Dr Sen has an important responsibility to take Pamela seriously as a caregiver, and to communicate this responsibility he has to Robert, while keeping the needs of his patient (Mdm Wu is now in the intensive care unit) at the forefront. Dr Sen might offer to convene a family conference between Robert, Pamela, and himself to get them on the same page. A hospital social worker is normally a helpful person in such a conference. Hospital social workers would also have been able to inform Pamela and Robert about state-funded self-care training for caregivers and other caregiver support programmes.

Making caregivers count

Family caregiving is extremely common in healthcare. Clinicians should give serious consideration to the critical role of family caregivers, and include all caregivers in appropriate discussions about the patient’s needs and well-being. The flow of information needs to be carefully managed and sometimes limited to those with a stake in informed decision-making. Both payers and caregivers have stakes. It is ethically inappropriate to defer to one stakeholder over the other.

In healthcare, determining whether a patient is making a good or bad decision is done in advance of the outcome of that decision. Judging a decision to be a ‘bad’ decision usually comes with the ethical caveat that action should be taken to protect a patient from making this decision. In some situations, we might think that the patient should forgo the right to make that decision.

Pamela is adamant that her mother’s decision not to have a hip replacement is a bad decision because of the negative and avoidable health outcomes that will result. Is Mdm Wu’s decision to refuse treatment a bad one? Should Mdm Wu’s decision be respected if Pamela’s judgement is correct? Has Dr Sen managed the situation correctly?

What is a ‘bad’ decision?

There are different ways to judge whether a decision is good or bad. In a professional setting underpinned by doctors’ duty to benefit patients, it is common to evaluate decisions in terms of the expected health outcomes. On this account, the bad decision would be the one that did not lead to optimal health outcomes for the patient.

However, this is to presume a settled, universal and practitioner-driven account of the duty to benefit patients, rather than one that is shaped by a patient’s own values. A patient might say: “Thank you, doctor, for advising me that continuing to smoke would not be good for my health, but smoking is good for me.” If we accept a person-centred account of the value of healthcare, a decision is judged good or bad by reference to the patient’s own account of the value of the options available.

A bad decision is different from an uninformed decision. Unlike bad decisions, decisions that are not fully informed do not involve making value judgements. If a patient has not understood all the relevant information the decision is not a fully autonomous one. It is unclear whether Mdm Wu is fully informed about the decision she is making. She misattributes clinical facts about her late husband’s situation to her own. In her conversation with Pamela, her views on invasive medical treatment are clear, settled and articulated in relation to her decision not to undergo a hip replacement. Dr Sen ought to clarify the clinical options to Mdm Wu such that he is satisfied that she can distinguish her treatment from that which was required by her late husband.

Should patients be allowed to make ‘bad’ decisions?

We have identified that Mdm Wu’s decision is bad in the sense that she is refusing treatment that will likely lead to the best health outcome. We have also identified that Mdm Wu may not understand all the facts that are relevant to her situation, and so Dr Sen should ensure that she is fully informed about the choice she is making before a final decision is made.

When fully informed and able to make the decision, intervening to do good for Mdm Wu by giving her a hip replacement against her explicit wishes would be an example of hard paternalism. Under the law, patients have the right to make ‘unwise’ decisions, for reasons that are rational or irrational, or for no reason at all.

The fact that Mdm Wu’s reasons for refusing the hip replacement may be irrational or poorly articulated does not provide a justification to not respect her decision. In ethical terms, the defence of this position would centre on the duty to respect patients’ autonomy. Even if Dr Sen is uncertain whether the reasons underpinning Mdm Wu’s refusal of treatment reflect her own values, ethical considerations point towards respecting her refusal of treatment. These include obligations to respect patients’ bodily integrity and the value of maintaining trust within the doctor-patient relationship.

How should ‘bad’ decisions be responded to in clinical encounters?

Because of their professional duty to benefit patients, doctors are not neutral, technical experts tasked with providing care that is tailored only to their patients’ wishes. This means that Dr Sen’s decision to step back and simply endorse Mdm Wu’s refusal of treatment is problematic. Instead, Dr Sen could endorse a shared decision-making framework in his interactions with Mdm Wu, taking an active role in shaping her decisions. This would require him to negotiate with her when she chooses a course of action that goes against his view of what would be best for her.

In adopting this approach, it would also be important for Dr Sen to attend carefully to any distress that these interactions cause to Mdm Wu. He must engage with her in a sensitive manner, such that her reasons for choosing a particular course of action are accorded appropriate respect. Trust would be crucial to this engagement being successful. It is important that Dr Sen remains aware that Mdm Wu might not want to play such an active role in all medical decisions involving her care. He should ascertain whether she would like to delegate decision-making responsibility to him or to invite Pamela or Robert to participate in the decision-making process.

Are alternative approaches for managing ‘bad’ decisions justifiable?

Manipulating the information given to the patient or attempting to pressure her into making a particular decision raises questions about the validity of her consent. Actions that are justified by recourse to benefitting patients might actually cause harm or distress to those patients. Finally, there might also be concerns that such strategies exploit Mdm Wu by trading on the doubts and fears that she has in her life. Dr Sen should be careful not to impose such pressures on Mdm Wu. He should actively discuss the options with her, presenting clinical information about the benefit of the different treatment options clearly and in ways that are sensitive to her views and interpretations.

The situation

Mdm Wu made a decision against surgery that Dr Sen and the main caregiver, the patient’s daughter Pamela, did not agree with. The reason Mdm Wu gave for her decision appeared to Pamela and Dr Sen to reflect a problem with how Mdm Wu was perceiving the risks of surgery and what her condition would be like following this decision.

Robert and Pamela, the two children, were not in agreement regarding the ‘need’ for mum to undergo surgery.

It is now one month later. Mdm Wu’s health has deteriorated. Pamela is still hopeful for her mother to have her surgery. What should Dr Sen do?

The risk–benefit ratio for surgery is different now

Before Dr Sen advises Pamela, he would have to be clear about the various treatment options, their risks, and benefits.

It is recommended that hip fracture surgery should be performed as soon as possible after the fracture. Dr Sen may consider consulting an orthopaedic surgeon colleague regarding the benefit of the surgery, since the fracture occurred quite a while ago, and also Mdm Wu’s health has deteriorated.

Apart from discussing the case with a surgical colleague, Dr Sen may want to consult with other colleagues such as his seniors, plus medical, nursing, and social work specialists in geriatrics and family medicine, to better understand the care plan for someone like Mdm Wu if surgery is no longer a viable option, or if Mdm Wu still refuses to undergo surgery.

When someone asks a question, endeavour to address the issue, and not just answer the question

Dr Sen might also want to take the opportunity to better understand Pamela’s own perspectives and concerns. Caregiver stress is multi-faceted. It would be simple to assume that Mdm Wu’s refusal of surgery is the cause of Pamela’s stress. Other issues, such as resentment about the caregiving role, missed career opportunities as a result of the role, or angst about other issues related or not related to the caregiving, could also be contributing to the stress Pamela is experiencing in relation to her family. Discussions with the social worker and other colleagues who customarily work with family caregivers can also help Dr Sen understand the sources of caregiver stress.

When a patient trusts the doctor, make use of the trust to gain mileage in the healing process

Mdm Wu is likely to be under the care of an internal medicine team, rather than the orthopaedics department, during this hospitalisation. Dr Sen, having prior knowledge of her situation, could offer what he knew about the patient and her family to the current care team and facilitate a well-informed discussion of the care plan that includes the main caregiver. Mindful that Mdm Wu might not be a suitable candidate for surgery now, and that the medical care team is focused on treating her pneumonia, Dr Sen could, in collaboration with the current team, help all participants gain a fuller understanding of Mdm Wu’s condition and options. This could include advocating for a geriatric consultation and assessment, and/or a review by rehabilitation specialists, such as a rehab physician, an occupational therapist, and a physiotherapist. He could also suggest exploring possible long-term care options such as community-based health and social care after the discharge, or, if there should be rehabilitation potential, a short period of rehabilitation to render Mdm Wu wheelchair independent.

Because Pamela reached out to Dr Sen, he should help pave the way for the patient and her daughter to collaborate with her current care team, so that communication among all parties – between mother and daughter, between family and team – is supported and Pamela’s isolation is diminished. Even though Mdm Wu is not currently his patient, Dr Sen could also pay a visit to her bedside, reintroduce himself and make a personal connection, and, as she is able and willing, seek to explore her current fears and distress, if any.

Timely communication might have prevented the dilemma

Earlier, when Mdm Wu decided against surgery, and both Pamela and Robert failed to convince Mdm Wu to change her mind, a family conference could have been convened whereby both children – or if Mdm Wu was willing, all stakeholders including Mdm Wu and other clinical team members – could be brought to the table for a face-to-face discussion. Dr Sen or a social worker could have served as facilitator. In this conference, everyone hears the same information from the doctor, also hears from the patient and the family members, in their own words.

If Mdm Wu’s reasons for her decision had sounded faulty, the medical team would have been able to correct any misinformation, and the children could have done their best to challenge their mother’s reasoning. Talking about Mdm Wu’s experiences with her husband’s illness, hospitalisation, and death would have offered opportunities to identify her concerns about her own situation. Perhaps a deeper appreciation of Mdm Wu’s worldview could even have been acquired in the process!

If Mdm Wu had decided against the surgery even after hearing all the facts and recommendations from the doctor as well as the concerns of the children, then Pamela would have had to ‘agree to disagree’, and accept her mother’s decision.

Even after such a decision, it would have been the prerogative of Pamela not to ‘give up’ and still to persist in trying to convince her mother to have surgery. It would also have been her prerogative to ‘check out’ and not be involved in her mother’s subsequent care. However, if she had chosen to continue her care for her mother (as she in fact did), her sacrifices should have been acknowledged and supported. The community-based care team in this situation needs to address all these issues.