17.6 The family perspective

The family, not just the patient, deals with and attempts to understand the meaning of cancer, and it is the meaning of cancer to the family that sets the context within which dynamic processes occur. (Lewis 1990, p. 759)

Reproduced from  

Lewis, F. M., Strengthening family supports—cancer and the family, Cancer, Volume 65, Supplement 3, pp. 752–759, Copyright © 1990, with permission from John Wiley & Sons, Inc. All Rights Reserved.

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More often than not, a person’s family background, over and above any other factor, influences the meaning they ascribe to a serious illness. Each person is shaped by, and in turn shapes, their world view. A major component of any person’s world view is their family, defined here simply as ‘those individuals considered as family by that person’ (Ferrell, 1998). The family provides the individual with their history, a strong pattern of beliefs (including those about serious illness and its treatment), traditions, and an identity. Each individual is inextricably linked to and affected by the life of their family, which in turn, responds to changes in the individual. In order to fully understand the impact of an illness on a patient then, we do a disservice to them unless the impact on and of the family as a whole is also considered.

If the health-care professional is serious about providing whole-patient care, it is imperative that the context in which patients live with their illness is understood. A family-centred approach to palliative care then, is crucial to any comprehensive service (Northouse, 1984; Quinn and Herndon, 1986; Pederson and Valanis, 1988; Zabora and Smith, 1991).

In addition to understanding the patient within their family context, it is also important to understand the impact of serious illness on the wider family. According to systems theory, family members are reciprocally affected by illness in each other. Thus, Northouse and (1993) described serious illness as an assault on the entire family. Indeed, throughout the illness trajectory, a family’s emotional, physical, and financial resources can be sequentially challenged by a series of medical crises (Jacobs et al., 1998). Failure to understand this impact leads to inadequate support for the complete range of people affected (Hacialioglu et al., 2010).

Moreover, families should be considered an important resource to the health-care team. Often providing the majority of home-based care for palliative patients, they form a crucial component of any programme. If patients are viewed in isolation, both the care provided to them and the resources that could be mobilized are limited. Consistently, the literature has strongly argued that in palliative care, treatment of the whole family is the optimal approach (Cassileth and Hamilton, 1979; Rait and Lederberg, 1989; Bluglass, 1991; Baider et al., 1996; Lederberg, 1998).

This chapter will explore the concept of the patient in context, the impact of serious illness on the family, and the family as caregiver. It will also consider the assessment of families and their needs and some of the interventions that clinicians can utilize to better assist the family in the setting of palliative care. Families who are well supported will, in turn, be better able to care for their loved ones.

The key to understanding the way illness impacts on the family as a whole is to make sense of two important characteristics of its overall system: (a) the sharing of suffering and (b) the homeostatic force within the family to maintain its usual patterns of relating and living.

Life with a beloved suffering from serious illness may be more difficult than having such an illness oneself (Hilton, 1993; Marshall et al., 2011). Firstly, there is what the Sutherland group (1956) described as the intimate reciprocity of suffering. Levels of despair or optimism in patients and family carers are interrelated and are a significant predictor of each other’s mental health (Given and Given, 1992; Kurtz et al., 1995; Wittenberg-Lyles et al., 2011). Relatives of the seriously ill thus have higher levels of depression and anxiety than the general population (Stuber et al., 1991). Rates of psychological distress for spouses of cancer patients, for example, have ranged between 18% and 35% (Buckley, 1977; Plumb and Holland, 1977; Maguire, 1981; Gotay, 1984; Ell et al., 1988; Northouse, 1989; Kissane et al., 1994a). In one Australian study, one-quarter of adult offspring of cancer patients exhibited significant distress (Kissane et al., 1994a).

The suffering of the palliative patient, especially in the face of poorly controlled physical symptoms, is a particular trigger for increased anxiety and physical concerns for family members themselves (Ferrell, 1998, Lewis, 1986; Northouse, 1988; Sales, 1991; Hilton, 1993, Kristjanson and Aoun, 2004). In fact, the anguish involved in caring for someone who is living with advanced disease promotes such a level of stress that one should think of close family members as ‘second-order patients’ (Rait and Lederberg, 1989). Hudson et al. (2011) reported that in a cohort of 302 family caregivers of patients with advanced, life-threatening disease, 44% had anxiety and/or depressive disorders.

While family members can provide a type of ‘buffering’ to protect and sustain patients (Wilson and Morse, 1991; Sabo et al., 1986), this support is not necessarily mutual in that the patient may have a diminished ability to reciprocate. Their carers may thus find they are responsible for the majority of the emotional support in the relationship. Conflict and greater family disharmony can grow from dissatisfaction with these relationships.

The second important characteristic to understand in relation to the family system in the setting of illness is that in most cases families gravitate towards maintaining equilibrium in its structure. This homeostatic pull promotes the maintenance of a structure of predictability, security, and cohesiveness (including both positive and negative traits), and will often struggle when faced with uncertainty (Lederberg, 1998). The family affected by serious illness must maintain itself through many changes. These include adoption of the role of the ill member (breadwinner, mother, or patriarch), adjustment to loss, meeting the emotional needs of members in crisis, and continuing to perform standard family functions.

The structure that the family strives to maintain is informed by its unique culture, values, attitudes, norms, roles, and the beliefs peculiar to each family. There are unspoken, yet powerful, regulating actions and relationships, based on a power structure whereby decisions are made and consequences enforced. The family’s attitudes towards autonomy, desired medical communication, explanatory models of illness, and the roles of its members all influence its harmony and well-being (Gotay, 2000, pp. 99–101).

Family traditions are translated into a ‘script’ (Byng Hall, 1988), a subtle yet definitive influence on each member, in varying degrees, throughout their lives. These manifest like a tape recording that is played in each individual’s mind to guide their choices. An example is the patient who still hears their father’s voice saying, ‘Don’t trust doctors’. Clinicians need to consider that there are specific traditions for each patient and family when providing information and discussing decision-making. The following vignette illustrates how the family’s culture can impact on the medical consultation process:

Joseph Ramirez was a 68-year-old man, newly diagnosed with end-stage prostate cancer. He had been married to Maria for 49 years and they had three sons: Michael (aged 48), Marko (45), and Frederik (40). Since Joseph had retired, his health had deteriorated and, as weakness increased, he had begun to hand over his position of ‘head’ of the family to Michael—asking him to make financial and lifestyle decisions. Maria had always been quite passive in her marriage and she was comfortable with whatever her son decided.

When Joseph was diagnosed, Michael felt quite anxious about the additional burden placed on him—especially given his own responsibilities as a husband, father, and with work. When he and his father attended the first consultation with his specialist, Dr Sinclair, Joseph constantly turned to Michael for advice, causing Michael to take a lead role in the meeting, pre-empting questions and pressing for definitive answers about treatment and prognosis.

Dr Sinclair found this consultation disconcerting and was worried that Joseph was being held back from directing his own care. He tried to redirect questions back to Joseph asking ‘Well what do you think, Mr. Ramirez?’

At the end of the consultation, all parties left feeling frustrated. Joseph felt confused and pressured; his son Michael felt offended, stressed, and was contemplating getting a second opinion for his father. Dr Sinclair felt annoyed that Michael was interfering with his care of his father.

If Dr Sinclair had taken some additional time to understand the family’s dynamics, he may have found it easier to work with them. Recognizing the potential relevancy of the son’s attendance, he could have started by asking Joseph about his family and his feelings regarding his illness and then enquired of Michael, asking him about his concerns prior to launching into the medical issues of the consultation. Often a short time taken to get to know the family background will save time in the future and avoid both confusion and anger. Clinicians ought not impose their own value systems but be curious about those of the family. Although Dr Sinclair presumed that patients would make their decisions autonomously, he may have foreseen how consultation within the Ramirez family could also work.

This vignette raises a common dilemma in the palliative setting which is worth special mention. Truth telling, or relaying bad news to a patient, one of the most challenging and complex areas of patient/doctor communication, can be further complicated by the request from a relative to not tell the patient specific information such as diagnosis, prognosis, and/or treatment plans. In Western countries, it is generally accepted that it is the patient’s right to be told the truth about their diagnosis and prognosis in a manner in which they can fully grasp its consequences and be a full participant in decision-making. Indeed, breaking bad news is a growing aspect of training in both undergraduate and postgraduate medical education. Yet, the idea that full disclosure is ‘best’ for the patient is not necessarily shared in all cultures or all families (O’Kelly et al., 2011).

Some families believe that full disclosure of a poor prognosis to patients places an unacceptable burden on them, reducing hope and the will to fight their disease. In some cases, the family perceives that the patient will ‘give up’ and die because of the words of the physician. The family expects to be told the diagnosis and prognosis and make decisions for the patient to ‘shield’ them (Hook, 2000). These situations raise difficulties for the health-care team and families alike and it is important to develop guidelines to manage this sensitively. The following broad principles can be helpful:

Keeping these concepts in mind, it is clearly prudent to aim to prevent the situation where the family is at the patient’s door asking the physician to not enter and reveal the results of diagnostic and/or prognostic tests. There is benefit, whenever possible, in talking to all patients about how they would like to be told the outcomes of various tests prior to undertaking them—this would include where and when they would like to be told, the complexity of the information they would like revealed and who they would like to be present (Clayton and Kissane, 2010). When present with the patient, it is always pertinent to start with what the patient already understands and to again ask what they want to know about specific aspects, before launching into giving any information (Kissane, 2010). Families who have raised concerns about truth-telling should be advised that this will be the manner in which the information will be shared, proportional to what the patient requests and with sensitive delivery.

At the same time that family members are adjusting to the impact of serious illness and its uncertainty, many are also expected to take on the complex role of primary caregiver (Given and Given, 1992) and, indeed, many see this role as their duty (McLaughlin et al., 2011). Moreover, the medical system is often funded on the premise that patient care will occur as much as possible in the home to reduce the cost of inpatient services.

Increasingly sophisticated treatments such as chemotherapy are now being offered in the home and the philosophy of hospice care emphasizes patient support in this setting. Given the complexity involved, one could argue that never in history has as much been demanded of family members as carers.

In this context, direct care tasks for the family include dispensation of medications, assistance with nausea, vomiting, and pain relief, washing and other personal care tasks, meal preparation as well as tending to laundry, visitors, and answering phone calls from concerned friends. These tasks would require in the inpatient setting a range of staff, but they are provided by the family on a 24-hour basis, often including support during the night.

While the toll from these tasks could be overwhelming even without complications, there are certain activities that are especially complex: (a) provision of medication for pain, (b) maintenance of nutrition, (c) provision of emotional support for the patient, and (d) the practical nursing and care-provision tasks. For example, the introduction of morphine could be wrongly viewed as the beginning of the dying process and the development of cachexia can cause conflict as the caregiver pushes food as a means towards increasing strength (Reid et al., 2009). In addition, regular roles, such as being husband or wife, mother or daughter are easily lost, when intimacy is crucial. However, families generally make a valiant effort and, in the process, often display great courage.

The longer the caregiving role, the more difficult it is to sustain energy to provide both physical as well as psychological care. Psychological symptoms may increase proportional to the length of illness (Lederberg, 1998). In the article titled, ‘Sleeping with one eye open’, Hearson and associates (2011) described the extent of the impact of sleep deprivation on family caregivers in palliative care, illustrating that almost 40% experienced excessive daytime sleepiness. The sustained effort, compounded by anxiety, adds to the exhaustion that comes with the burden of care in the palliative setting, and the reluctance of many to ask for help for themselves (Richards et al., 2011).

Yet, though the role of carer is clearly stressful in many ways, it is important to remember the positives involved for both patient and caregiver. There is consistent evidence linking successful family-based support with increased psychosocial adaptation for all concerned (Bloom, 1978; Woods and Earp, 1978; Northouse and Swain, 1987; Northouse, 1988; Mishel and Braden, 1989). Families serve as the primary referent and emotional support base for their members who become medically ill (Litman, 1974). Families also provide essential, instrumental functions that enable patients to adhere to arduous treatment protocols and manage the debilitating side effects associated with modern cancer treatment. The effectiveness of symptom control in palliative care is greatly enhanced by the presence of the family as caregiver (Schachter and Coyle, 1998). Families, in turn, also report a number of positives in their own lives and relationships as a result of their experience (Folkman, 1997).

Much of the suffering of families in the palliative setting results from being ill prepared and struggling with uncertainty and helplessness (Cherny et al., 1994). Family carers often state that they wish they had been taught some of the skills required for their caring role by health-care providers rather than having to work them out for themselves through ‘trial and error’. There are a number of unmet needs among caregivers. Some of the most commonly reported needs include:

In addition to these psychological and physical needs of the family, there are considerable costs involved with caring for a loved one with serious illness. These can be both direct and indirect, with at least 25% of family carers being unable to continue employment, thus suffering substantial losses of income (Schofield et al., 1998). Many carers also find they lose friends (though others are surprised by those who are supportive), and are unable to continue prior levels of involvement with sport or other interests. Given the wide ranging effects of the caregiving role, comprehensive assessment is required when considering supportive care of these families.

While the impact of serious illness can be considered to be catastrophic enough to argue for an evaluation of each family, this is clearly not a practical option (Zaider and Kissane, 2009). It is more common for staff to develop concerns for family members when they are not providing expected practical or emotional support (Jacobs et al., 1998). This is also not an effective basis for decisions about resource allocation. What is necessary is the ability to screen for those families who are at greater risk of maladaptive outcome, so that scarce resources can be allocated to those in greater need (Kissane et al., 2007–2008).

An interesting approach to the identification of those families in most need of supportive intervention grew out of empirical observations about the significant association between family functioning and psychosocial outcome during palliative care and bereavement (Kissane et al., 1994). Dysfunctional families carried significantly more psychosocial morbidity among their members, such that screening for family functioning provided a method of recognition of those in greater need. Indeed, the 12-item Family Relationships Index (FRI) (derived from the Family Environment Scale; Moos and Moos, 1981) provides information on the family’s cohesiveness, shared expression of thoughts and feelings, and conflict, and thus serves as a simple pencil-and-paper screening test. Well-functioning families are cohesive and score more than 9 out of 12 on an FRI. Families at risk of poorer outcome have been termed hostile, sullen, or intermediate, reflecting varying levels of conflict, poor communication and lack of any sense of togetherness Kissane et al., (1998, 2003). A model of intervention that targets enhancing these dimensions of family functioning has been described as family-focused grief therapy (FFGT) (Kissane et al., 2006). It is initiated during the stage of advanced disease, as the family becomes more involved with care, and is continued into bereavement to maintain continuity of care. Such an approach to screening families, with preventive intervention for those at risk, will become the necessary working model for the future.

Family assessments should be aimed at leading the health professional to an increased understanding of the medical and psychosocial situation of the family system (Schachter and Coyle, 1998). Developing an understanding of the major concerns of individual members and the family as a whole empowers planning of appropriately focused interventions. We find a checklist as portrayed in Box 17.6.1 helpful to ensure that family assessments are thorough in their detail.

Understanding the impact of practical issues on the family is also important for effective functioning. Practical issues include the financial impact of serious illness on the family, the impact on work and home life, division of labour in the family, availability of family members to provide the care needs required, and the appropriateness of the physical surroundings to care for someone.

In addition to the specific concerns of the family, the clinician needs to consider each family’s ability to adjust to change that is inevitable during palliative care. While a normal grief response is expected following each change in disease status, the level of intervention required will depend on the ability of family members to comfort and support each other.

In general, interventions for families in the setting of advanced disease are provided in two broad areas: (1) those that are preventive, supportive, and focus on enhancing coping; and (2) those that deal with actual dysfunction in the family. However there are a number of general principles of family-centred therapy that apply to all interventions (Kovacsa et al., 2006). Box 17.6.2 outlines the key goals and principles in conducting family meetings.

Open communication from the health-care team is crucial in attempting to include the family in the treatment plan. To begin with, the provision of information is empowering to the family. Knowledge relieves family anxiety, improves problem-solving, and enhances both emotional and physical well-being (Stewart, 1996). Yet in response to encouraging open discussion of the family’s experience, the practitioner must go on to provide emotional comfort and legitimization of their feelings and concerns.

All information about palliative care and advanced disease is value-laden for those living with the disease. Specific discussion about deterioration and dying can be difficult to process. Clinicians need to proceed sensitively, respectfully, and also model the openness that is possible. Some families grow closer as a result of this challenge (Bloom, 1982; Neuling and Winefield, 1988), but others get stuck in awkwardness and avoidance (Reiss et al., 1993). Prior patterns of intimacy, comfort, and support can be fostered during this time if information is shared in a sensitive way to promote understanding and teamwork (Griffith and Griffith, 1994).

Families develop patterns of relating and coping that influence the way they subsequently handle the impact of serious illness (Sales et al., 1992). Past stress and loss affect the attitude and resources a family brings to this experience (Bloch et al., 1994). Recognition and acknowledgment of transgenerational patterns of relating can empower adoption of new choices for mutual support (Kissane and Bloch, 2002).

The emotional cost to the caregiving family is seldom raised by members themselves, whose focus is so clearly on the patient, their relative. It is not surprising, therefore, that families underutilize support programmes and assistance from health providers (Davis-Ali et al., 1993). In one Australian study, Schofield and colleagues (1998) found that 38% of carers reported problems with coping, one-third health concerns, and over half, unmet needs. However, a meagre 12% received counselling! An important challenge may be to get these families to accept outside help.

Struggling to manage the caregiving role without support can bring about a sense of burden, which family members may feel guilty about, but unable to articulate (Given et al., 1993). A comprehensive appraisal of carer needs can ameliorate the fatigue experienced by family members (Jensen and Given, 1991). Community support in the form of respite provided by volunteers, home nursing, or cleaning services are examples of support that may make the difference between families coping with home-based care or not. Careful matching of services to needs and encouragement of their acceptance is critical.

Use of a family meeting is crucial to family-centred care and should be considered a routine component of care today. Box 17.6.3 outlines a useful schema for clinicians to follow in running this meeting (Guergen et al., 2009; Coyle and Kissane, 2010). The presence of all important members of the patient’s family (including the patient) in one room allows the clinician to see how the family relates and provides a multitude of data about who influences decision-making, how open the family as a group is to discuss difficult issues, what their view of treatment is, and so on. This type of information can only be gained by experiencing the family in action.

Many clinicians avoid family meetings as they consider them to be too time-consuming and likely to open up difficult issues with which the team must deal. In reality, a family meeting can be time-saving and allow for many issues to be considered in a short time. Often the clinician finds that the family meeting prevents them from having to answer phone calls from numerous family members repeating the same questions over and over. Such meetings deal with what information can be shared with whom, as the patient is present to provide permission for each topic to be covered. Many issues are resolved in a family meeting more swiftly than when pursued individually. Summarized agreements of these meetings can be included, with the family’s permission, in the patient’s records to enhance communication throughout the team (Hudson et al., 2008). In addition, a family genogram (Barker, 1986) can be completed and added to records for a succinct visual overview of the family structure. For example, Fig. 17.6.1 illustrates a genogram of the previously mentioned Ramirez family.

Such a family meeting empowers allocation of tasks among family members and the clinician can understand the impact this will have on each. When roles can be shared among members, so that the family becomes a team, there is reduced burden (Given and Given, 1994). Many of the everyday tasks, exemplified by housework, shopping, and transport, can be sorted out through problem-solving during the session, while the family grows in mutual understanding. On the other hand, when decisions about task allocation are made individually and without full consultation within the family, plans can be unconsciously sabotaged by those who do not feel they were included in the decision-making.

The family meeting also provides opportunity for the expression of genuine feelings individual members may have, both positively and negatively. For example, the chance is created for adult offspring to reassure their parents about the gratification they derive when reciprocating some of the love and attention they received during childhood (Hinton, 1994). Disagreement about plans or task allocation can be safely raised in this setting and appropriately problem solved. Box 17.6.4 outlines some key skills that clinicians need to facilitate routine family meetings (Dumont and Kissane, 2009). A more detailed coverage of these skills is found in a series of useful articles by Karl Tomm (Tomm, 1988).

Family meetings may need to be arranged at each juncture of the treatment programme. As the goals of treatment change, or new information is ascertained, the family should be reconvened to review the situation.

There is much distress and suffering that arises from caring for a seriously ill family member, which cannot be prevented or relieved. Though there appears to be an expectation or belief that modern medicine can prevent all suffering, this is an often unrecognized myth (Callahan, 1995). Support throughout the illness that includes frank discussion of side effects and tempering of unrealistic expectations can lessen any consequent emotional impact, but sometimes suffering can only be assuaged Ferrell et al., (1991a, 1991b, 1991c; Kissane, 1998).

Most well-functioning families who have become carers benefit from a single family meeting that mobilizes their inherent strengths and resources. Such consultative interventions aim to assist families expand and adapt their own successful problem-solving methods (Jacobs et al., 1998). They would begin where the family is at and provide additional encouragement to enhance coping.

Serious illness often provides a timely opportunity to intervene with a dysfunctional family. Indeed, such transition points in the life cycle are fertile occasions to effect change. Hence families that oncology services find challenging because of their long term dysfunction may become amenable to help at exactly this point in their lives—the threat of death of a loved one.

Challenging families include those that are rigid in their structure and processes, and find it difficult to accept change, or where their relationships are chaotic and unstable, with distress generating psychiatric disorder such as major depressive episode. Concern for these families develops when (a) their conflict and behaviours prevent members from providing effective care-provision, or (b), when the negative impact on the family becomes disruptive and unbearable, producing mental illness. Such difficult families warrant referral to psycho-oncology services for ongoing family therapy. For example:

Wartime separation had led the parents of this family to be raised in an orphanage during their childhood, challenging their ability to later cope with stress in life. The subsequent illness with advanced breast cancer of the mother brought great worry to the family. Her children teamed reasonably but the father’s aloof and retreating manner created a gulf that interfered with effective communication. In family sessions, the construction of a transgenerational genogram and sharing of narrative about the deprivations of war helped this family to better understand and tolerate their father’s solitariness. Thereafter, his children made renewed endeavours to include him in family activities and provided improved support for him during his bereavement.

Supporting a family through the chronic phase of advanced disease is largely a matter of maintenance and different to the kind of support required when the patient is dying. Yet a common mistake made by the treatment team is in not being clear about the shift from cure or maintenance to palliative care. While the presence of hope is crucial to all families, and, indeed, many hold onto this hope in the face of extreme deterioration, it is important that it is balanced with some sense of realism, which often needs to come from the health care team (Parkes, 1972). There can be hesitancy in giving an honest appraisal about prognosis because of the emotional response involved with anticipatory grief. Yet there are two important reasons for clinicians to be brave and open in this setting.

To begin with, the time that the family spends together when a member is dying can be one of extreme intimacy and poignancy. This period involves finishing-up for the patient and those around them (Lethborg, 1994). As Hinton (1981) suggested, saying goodbye, while often perceived to be a final act, in practice evolves gradually as a temporal process. Finishing-up can include a period of life review, of completing projects, and of saying farewell. Equally, for the family, there can be review of relationships with the ill member, affirmation of the contribution of each person, completion of unfinished business, and expression of gratitude for the good times shared (Meares, 1981).

This period can also be one of great stress and emotional pain, especially when excessive anticipatory grief occurs. With skilled guidance, this existential pain can be processed through reminiscence and externalization, eventually leading to increased acceptance (Yalom, 1980; Kissane, 1998; Breitbart, et al., 2010; Chochinov, 2011; Lethborg, et al., 2012). The tasks involved in saying goodbye can easily be postponed by well-intentioned families, motivated to protect their dying member from distress. Guidance is distinctly helpful so that families do not misjudge the time remaining for this farewell.

Secondly, successful management of this palliative phase is a form of preventive therapy in relation to the mental health of the family during bereavement. Care provided to families during the course of a terminal illness has a profound influence on bereavement following the death (Ferrell, 1998). The experience of a family member dying at home thereafter becomes part of the narrative of the whole family (Coyle, 1996).

By screening palliative care families to identify those ‘at some risk’ for maladaptive outcomes, randomized trials of family intervention starting during palliative care and continued into bereavement have shown the ability to prevent complicated grief and depressive illness in the bereaved Kissane et al., (2006, 2012). Palliative medicine presents a unique opportunity to establish a therapeutic alliance with families in need, in a manner that does effectively support their transition through this stressful experience (Kissane et al., 1998). Through a focus on enhancing family functioning, families are helped to support one another, communicate more effectively, tolerate differences and deal with conflict adaptively. This approach is a preventive model that offers therapy through a brief and empirically driven technique, and sustains continuity of care to the family across a period of major change in their lives. While very chaotic families decline to meet, accepting distance and separation as the practical solution to their differences, many other families with more mild to moderate disturbance in their relationships welcome the help delivered through this family-centred model of care. Through this FFGT approach, bereavement care actually begins during palliative care.

Serious illness should be viewed as ‘a bio-psychosocial and spiritual problem that occurs in the context of an intense interpersonal relationship that affects, and is affected by, the disease process in reciprocal circularity’ (Northouse, 1993, p. 70). Never is this truer than for the family of a patient with advanced disease. The serious progression of this disease towards terminal events inevitably involves the family in key relationships with the health team and their dying relative. These relationships are pivotal in determining the ultimate outcome of the experience for all. Families are second-order patients in their own right, and the bearers of the burdens and joys of loving relationships. Family-centred care is challenging as a paradigm but a useful harness to improved quality of life, one that warrants the effort involved to ease the suffering of all.