Communication with patients, families, and other caregivers: Why is this ethically important?
Saying the right thing, doing the right thing
‘Difficult’ decisions in healthcare are not always technically difficult, although sometimes they are. They are difficult as personal, family, and professional experiences. It is hard to face a life-threatening diagnosis, a painful course of treatment, or an uncertain prognosis. It is hard to witness the suffering of a family member, or of a patient under one’s care. It is hard to face death, or to endure grief and loss. It is hard to worry about how to pay for medical care. Resolving disagreements, whether with families or among colleagues, can also be difficult. It can be difficult for people with less authority, such as nurses, or junior physicians, or home care workers, to bring problems to the attention of people with more authority.
Ethical healthcare is based on communication that is truthful, respectful, clear, and compassionate. Ethical communication supports and advances the patient’s goals of care, while inattention to communication may result in confusion, conflict, failure to address suffering, and even error and harm. Ethical communication can also be challenging. This backgrounder describes some of the common challenges clinicians may face when communicating with patients and others.
Communicating with patients
Telling the truth is one of the earliest moral lessons taught to very young children, and is consistent with most people’s understanding of what it means to act ethically. Truth-telling is also constructive: truthfulness builds trust between people or groups, while lying or evasion undermines trust and makes it hard for different parties to work towards common goals. Truth-telling is fundamental to medical ethics. Healthcare professionals have a duty to deal honestly with their patients, and the concept of informed decision-making is premised on the provision of accurate information that is clearly presented.
The duty of disclosure is a duty owed directly to the patient. Even when family members wish to ‘protect’ the ill person from medical information, the healthcare professional should explain that it is the patient’s right to receive this information. It is also the patient’s right to decide whether another person (such as a ‘donee’ appointed under a Lasting Power of Attorney) should receive some or all medical information. Other care planning measures, such as the documentation of the patients’ preferences for end-of-life care through an Advance Care Plan, also involve direct communication with the patient.
All patients are not alike in how they prefer to receive medical information. When a patient has been determined, following clinical evaluation, to have decision-making capacity, the healthcare professional responsible for this patient’s care should talk directly with the patient about what level of medical detail the patient wants, and what information the patient may want the professional to share with family members. One patient may express a general preference for treatment and may also ask that detailed information about his or her diagnosis be provided to a specific family member. Another patient may want detailed information.
Talking directly with the patient also demonstrates respect for the patient as a person. In some cases, a patient may disclose information to a healthcare professional that he or she has never shared with family members. For example, some elderly Singaporean patients may never have talked about painful wartime or other early experiences, and yet knowing something about these experiences may be helpful to a professional who wants to understand what a patient may find particularly stressful.
Dealing truthfully with patients about their health, appropriate to their level of understanding, also helps the professional to elicit information about a patient’s preferences, which may include non-medical aspects of life. Learning from an adult or child about what he or she likes to do, and what experiences he or she prefers to avoid, may provide immense insight into this person’s best interests.
Communicating with the patient who lacks decision-making capacity
Patients who lack the capacity to make informed decisions about their own healthcare include those who temporarily lack capacity (for example, because they are undergoing short-term sedation as part of a medical treatment, or because they have a thought disorder that periodically impairs their capacity), who have irrevocably lost capacity (for example, because they have dementia), who have not yet attained capacity (for example, because they are young children), and who will never attain capacity (for example, because they have a lifelong cognitive impairment). In all of these cases, communication should proceed in a way that respects the patient, even though the patient is incapable of making informed choices and may not be capable of full understanding in other respects. Patients who lack decision-making capacity may have and be able to communicate preferences about their healthcare and their lives, and they should have opportunities to share these preferences with others.
Communicating with the patient whose capacity is developing or whose ability to communicate is impaired
Communication with older children and adolescents whose decision-making capacity is still developing, and with patients with conditions that affect their ability to communicate, requires special attention. In these situations, a patient’s ability to understand and express preferences about their own healthcare is at risk of being overlooked. Healthcare professionals may need to clarify the patient’s current decision-making capacity, and to explain to family members why it is important to try to include the patient’s preferences, even if another decision-maker (typically but not always a family member) will be needed to make medical decisions.
Communicating with families
It is common in Singapore (and in many other societies) to use the term ‘the family’ to represent a large number of individuals with some relationship to a patient: spouse, siblings, young children, adult children, nieces and nephews, grandchildren. Those whom a patient considers part of his or her family may also include people who are not biologically or legally related to the patient. These relationships should be respected, although not every family member can (or should) be involved in medical decision-making.
Patients are members of their own families, and their preferences for their own lives and healthcare may reflect their concern for their own families. For example, a healthcare professional may perceive that a patient knows or suspects his or her diagnosis and is worried about burdening family members with this information. These same family members may also know or suspect the patient’s diagnosis and worry about burdening the patient with this information. Situations like these, in which people who care about each other are understandably trying to protect each other, can lead to confusion about how (and with whom) to communicate when treatment decisions must be made or a patient’s condition is changing.
Helping families to understand patients’ rights
When family members are present, in the hospital or during medical appointments, the professional should always address the patient. It may be necessary to explain to family members why a physician and patient should be able to communicate with one another, to share information and to build trust. Because the healthcare professional’s first obligation is to the patient, the professional should not avoid speaking directly with a patient simply because a family member objects.
Working with families as part of best-interests decision-making
Healthcare professionals should expect to work closely with families, including those family members who are knowledgeable about the values and preferences of a patient who currently lacks decision-making capacity. In many cases, it will quickly become clear whether a particular family member has been serving as the patient’s primary caregiver. Professionals should keep in mind that the family member who is responsible for paying for a patient’s care may or may not be knowledgeable about the patient’s own values and preferences. They should avoid deferring to the opinion of ‘the payer’. Rather, they should help this family member (and others) to understand both what is known about the patient’s preferences for care, and what treatment options are consistent with these preferences or, if these are unknown, with the patient’s best interests. Professionals should also be prepared to deal with disagreements between family members who may hold different views on how a patient should be cared for.
Communicating with foreign domestic workers as caregivers
In Singapore, many families employ foreign domestic workers, often known as ‘domestic helpers’ or ‘maids’. The typical foreign domestic worker is female, and may or may not share a common language with her employer. Healthcare professionals may meet foreign domestic workers when a patient is hospitalised, or during discharge planning. They may also meet foreign workers when the workers themselves are in need of healthcare.
When it is clear that a patient’s care plan will involve a foreign domestic worker in addition to family members (and may, in fact, depend heavily on the domestic helper), the professional should make every effort to include her in communication about the care plan. In some cases, a foreign domestic worker who has been caring for a chronically-ill patient may have insights into a patient’s preferences or into how a non-verbal patient communicates, and should have opportunities to share these insights.
Some foreign domestic workers have been trained to provide home care, or more specialised care for post-stroke patients or patients with dementia, while others have not. Healthcare professionals responsible for discharge planning or involved in the care of patients at home should be familiar with training opportunies available to foreign domestic workers, so that these caregivers are well-prepared to follow a care plan and to bring problems with the care plan (perhaps due to the patient’s changing condition) to the attention of family members and healthcare professionals.
Communicating about culture and language
Cultural values and practices concerning illness and health may shape how, or whether, people tend to talk directly about issues such as death and dying. A healthcare professional in Singapore may, for example, take notice of Chinese customs concerning death. These customs may include the belief that talking about death is inauspicious for the living. This should not mean that talking about medical decisions, or the prospect of dying, is impolite or impossible with Chinese Singaporean patients or their families. Rather, it means that the professional should be attentive to how the individual patient may prefer to talk about these issues in the context of other values (including cultural values) that are meaningful to him or her. A Chinese-speaking healthcare professional who is aware of these beliefs, and also knows that these traditional beliefs form part of a patient’s values, may, for example, ask a Chinese elder, ‘What instructions will you have for us when you have lived to a hundred years?’, as this phrase may be an acceptable and welcome way for this patient to talk about end-of-life preferences.
Many different cultural factors shape individuals and families in Singapore. Healthcare professionals should aim both to be attentive to cultural values in the lives of their patients, and to keep an open mind, so as to avoid myths and stereotypes. Giving each patient an opportunity to talk about cultural, religious, or other personal needs and concerns that are relevant to their healthcare is a good practice. Some patients may want to talk with a counsellor from a particular faith tradition, while others prefer to talk about these issues with family members or with social workers or other professionals. Some patients may prefer not to discuss these matters.
In Singapore, patients may not have a common language with healthcare professionals. For example, Chinese elders may speak Cantonese or a different dialect, rather than Mandarin or English. In these cases, it is preferable to involve a professional interpreter or another healthcare professional, rather than to rely on family members as interpreters. This better assures the patient’s privacy and confidentiality and avoids inaccurate translation of medical information.
Suggested further reading
Berlinger, Nancy, Bruce Jennings, and Susan M. Wolf, SM Part Three, ‘Communication Supporting Decision-Making and Care,’ in The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition (New York and Oxford: Oxford University Press, 2013), 131-86 and Selected Bibliography for these and other sections.
Berlinger, Nancy, 'Communication with patients, families, and other caregivers: Why is this ethically important?' in Chin, Jacqueline, Nancy Berlinger, Michael C. Dunn, Michael K. Gusmano (eds.), A Singapore Bioethics Casebook, 2 vols (Singapore: National University of Singapore, 2017), http://www.bioethicscasebook.sg.