1 Introduction

The increasing reliance on informal family caregivers (“carers”) in today’s healthcare environment mandates families to be actively involved in patient care and advocate for best practice. The Institute for Patient- and Family-Centered Care defines family-centered care as an approach to planning, delivering, and evaluating healthcare in the context of mutually beneficial partnerships among healthcare providers, patients, and families. It emphasizes collaboration with families who define their own membership and roles in care and decision-making (Johnson et al. 2008). The aim of this chapter is to increase palliative care healthcare providers’ awareness of the needs of families to optimize their current and future well-being, including their bereavement outcomes.

After reading this chapter, you will be able to:

  • Describe the components of family-focused care

  • Discuss patient and family priorities for end-of-life care

  • Identify opportunities to strengthen the provision of family-focused palliative care

2 Defining Family

The family is the basic unit of care, yet it comes in all shapes and sizes, compositions, and origins. Contemporary connotations of family extend beyond just people related to one another by blood or marriage. Divorce, same-sex partners, cohabitation, and workforce globalization have ushered in a new era of family configurations that have superseded traditional nuclear family structures comprised of a husband, wife, and one or more children. Single parent families are increasing, and many children live with a stepparent or grandparent(s) at some point in their lives. In addition to traditionally termed extended family, close friends, companions, and others may all be considered to part of an individual’s family. Family members may live in close proximity or at great geographic distances from one another, and as a result of changing work and previous life events, an increasing number of older people live alone. Global mobility and changing demographics mean that many family members may not be physically available to provide care and support in the context of a life-limiting illness and may have limited contact with one another. In this situation, neighbors and friends or distant relatives often step in to fill this void. As a result, who and what constitutes “family” has been evolving. While, some people continue to define family as the group of people they were born into (family of origin), others will define family as the group of close friends chosen to surround themselves with (family of choice) (Lawton et al. 2014). In this chapter, “family” is defined as whomever the patient describes or considers to be family (Torenholt et al. 2014) and/or who they identify as important and who influences their care and well-being (Wright 2007).

3 Family’s Needs Throughout the Care Trajectory and Across Life Stages

The World Health Organisation (2018) has long championed the importance of assessing and addressing families’ palliative care needs, as reflected in their current definition. This definition centers palliative care on providing relief from pain and distress, normalizing the dying process, providing holistic support using a team approach, and facilitating good quality of life and coping at all stages of the illness for the patient and their family (World Health Organisation 2018). By positioning families alongside patients, this definition highlights the needs of families as recipients of care, particularly in the provision of adjusting, coping, and bereavement support.

A progressive life-limiting illness diagnosis is a life-changing experience , for not only patients but also their families. This type of diagnosis is associated with significant physical, emotional, and social support needs as well as access to timely clinical support and information. Most patients will call upon various family members, often a partner/spouse, to assist them with their decision-making in relationship to treatment preferences, advance care planning, and legal and financial issues. The quality of life of patients with palliative care needs and their families depends on various factors that can change over the course of the illness. These fluctuating needs often occur during the transitions from curative to comfort care as the disease progresses. With each transition, families will have different information needs, and if they are active carers, their contributions to various activities of daily living is likely to increase as the patient’s disease progresses, and they become less able to maintain their activity. The care and support that families require may differ according to their varied life stages and relationship to the patient. In some cases, patients are also carers for offspring, siblings, or older parents, which have implications for the family as the patients’ own care needs increase. There are also some different implications for the individual and their family depending on whether the patient or carer is of working age (under 65 years old), has young children and/or teenagers, or is post-working age (over 65 years) and living with in-house or more distant family support.

3.1 Diagnosis Affects Families’ Needs

Both malignant and nonmalignant diseases pose significant burden at the end of life. Some diseases, especially neurodegenerative conditions and/or primary or metastatic brain cancer, often cause more physical impairment and cognitive/personality changes. These devastating personality changes and disability also affect carers’ capacity to manage (Pace et al. 2009; Arber et al. 2010; Gofton et al. 2012) and indicate significant support needs for carers.

Age can play a role in determining the type and level of needs of both patients and their families. For example, younger patients (≤70 years) generally have higher levels of overall unmet needs (McIllmurray et al. 2001), yet middle-aged patients (31–60 years) consistently display greater unmet needs than those age 70 years or older (Sanson-Fisher et al. 2000). These different needs have been attributed to cancer and its treatment having more of a psychosocial impact on younger people and the increased acceptability of younger people disclosing needs as compared to older patients (Sanson-Fisher et al. 2000).

3.2 Needs of Younger Working Age Families

Faced with a premature death during working age (ages 24–65 years) has its own inherent challenges related to life-stage commitments such as family, work, and financial responsibilities. A life-limiting illness has a profound impact on the family life of patients, their partners, and children. Family dynamics are often changed and normal life interrupted, which can be particularly burdensome for any dependent children, as their reality and day-to-day life often changes as the illness of their parent progresses. Families of working age patients have a range of needs at different time points across the illness trajectory (Kochovska et al. 2017), including:

  • Supportive care needs, which vary according to disease (malignant or nonmalignant) but typically for working-aged families, include assistance to effectively manage the patient’s pain and other symptoms and dealing with feelings of loss (anticipatory grief), uncertainty, and fear of the patient and/or children suffering (Kochovska et al. 2017). The partner of working-aged person facing a premature death often have increased input into clinical, household, and financial decision-making and difficulty juggling multiple roles such as parenting, household duties, and family finances. This is all in addition to navigating the healthcare system, transporting the patient to/from hospital and/or appointments, maintaining family schedules, and minimizing the impact on other family members.

  • Information needs , for families are also significant and include diagnostic and disease information, financial and legal information, as well as end-of-life and spirituality information (Kochovska et al. 2017). This information is required at different stages in the illness trajectory, and healthcare providers should be both aware and prepared to meet families’ specific information needs in a timely manner. Disease and prognosis information is most often sought at the initiation of treatment and transition from curative to palliative care but least wanted as death approaches. Financial and legal information from the time of diagnosis can help to manage anticipated reduced employment capacity for both the patient and carer. Financial advice is least wanted when completing treatment and when returning home from hospital. The need for financial/legal information related to death notification requirements and funerals is greatest immediately after the patient’s death. End-of-life and spirituality information is most desired during a final hospital or hospice admission and least desired at the commencement of treatment.

  • Carers needs are significant, as most will need access to support services (such as respite and day care) and practical support (e.g., picking up children, preparing a meal, and other household tasks), especially in rural and remote areas (Kochovska et al. 2017). Balancing these competing demands while trying to maintain normality (especially when children are involved) is challenging, particularly for employed carers and/or those with young children.

  • Anticipatory grief and bereavement needs are experienced by patients, partners/spouses, and their children at various junctures and require an individualized and empathetic response that recognizes grief as normal but provides timely access to professional help for the minority who need it. Spending quality time with the deteriorating and/or dying person is important and can positively influence bereavement outcomes (Kochovska et al. 2017).

3.3 Maintaining Normality and Balancing Multiple Roles

For both the parent living with the terminal illness and their partner/spouse, maintaining normality is of paramount importance, as it acts as a coping mechanism that limits the adverse effects of the parent’s illness on their children. Maintaining this delicate balance is challenging, and most families need practical advice about how best to describe in simple terms the patient’s diagnosis, prognosis, and impending death; cope with their partner’s/spouse’s deterioration; and access practical help and resources, so as to minimize the impact on their children (Kochovska et al. 2017).

The interruption of family dynamics and the need to be able to maintain children’s normal routines while managing escalating care demands is a frightening and stressful experience for many families (Kochovska et al. 2017). This is primarily because it requires the healthy parent to assume new roles within the family, deal with uncertainty and feelings of loneliness, balance everyone’s needs (including the children, the patient, and themselves), and support their children. Access to specialist palliative care can mitigate many of these challenges and contribute to positive short-term and long-term effects, especially for carers of cancer patients (Kochovska et al. 2017).

Although dealing with a life-limiting illness is a demanding and stressful experience for everyone, there are some positive aspects for both parents with terminal illness and their children, which include strengthening the relationship and shifting perspectives on valuing the family and the important things in life (Kochovska et al. 2017). It is particularly important that children and dying parents remain connected during the terminal illness, and clinical care and support should be tailored to facilitate that (Kochovska et al. 2017).

3.4 Balancing Being Honest with Children , but Not Overburdening Them

Children of parents diagnosed with advanced cancer and/or who are dying need access to timely, age-appropriate information about their parents’ disease that is sensitively communicated by people they trust both within and outside of the family (Kochovska et al. 2017). Children with parents living with a life-limiting illness (e.g., advanced cancer) display significant distress but also remarkable awareness and understanding of their parent’s illness. While children of dying parents need support, they should not be protected from the truth of the situation, but rather, given accurate information as sensitively as possible (Kochovska et al. 2017).

Adopting a transparent approach helped children to make sense of their parent’s impending death in their own way and grow through the experience. They also need an opportunity to spend quality time alone with their parent. While some children may welcome the opportunity to help care for a dying parent, they also need to have opportunities to engage in “normal” activities outside of their caring role both with their family and in contexts where they can temporarily “forget” their home situation (Kochovska et al. 2017).

Where children bear a significant caring responsibility, this may require respite care for the dying parent while the child takes a break. Similarly, adolescents and young adults are often required to assume more household responsibilities and have decreased social activity outside the home (Beale et al. 2004; Kennedy and Lloyd-Williams 2009) which can contribute to increased stress (Huizinga et al. 2003). Older children often take on more practical responsibilities, including picking up their younger siblings from school (Phillips and Lewis 2015). Adolescents also report feeling alone and alienated as family priorities shift and family roles are renegotiated within the family unit (Phillips 2015) and rely on routines to maintain a semblance of normality (Dehlin and Reg 2009). For adolescents, self-management and managing emotions through talking, thinking positively, and creating distractions and social support are also important (Phillips and Lewis 2015). Most adolescents try to maintain a positive attitude and facilitate communication within the family (Phillips and Lewis 2015), viewing the experience as something that helps them mature and change their way of thinking about life, and reassess their values and relationship with other people (Dehlin and Reg 2009).

There are a growing number of adolescent and young adult carers, so considering their needs is crucial as they often have significantly poor quality of physical health (Hanly et al. 2015) and could be considered to be doubly disadvantaged because their carer role impacts on their educational opportunities and future earning capacity. Australian statistics show that the premature death of a parent can have a detrimental effect on the future wealth and employment of their children as adults (Australian Bureau of Statistics 2010).

4 Defining Family-Focused Care

A family-focused care approach recognizes the fundamental role of families and includes the following core concepts, namely, dignity and respect, information sharing, participation, and collaboration (Johnson et al. 2008). This method of care delivery supports the family in their carer roles and includes them in treatment decision-making. It positions the family as key members of the care team and privileges collaboration as a vehicle that increases trust and promotes more open communication between patients, families, and healthcare providers. When individuals perceive open communication, they are more likely to perceive fair processes, cope, and feel less frustration and confusion. Through collaboration, care provided to patients and families can be tailored to their individual needs, thereby demonstrating recognition of the uniqueness of each patient and family. Furthermore, the family is a valuable source of support for a patient and information on behavior and coping strategies of the individual (Bamm and Rosenbaum 2008). Preferences for communication, degree of involvement in caregiving activities, information provision and education, visiting, and counseling inform the way in which the family is supported and cared for by the palliative care team (Wright 2007).

5 The Most Important Elements of End-of-Life Care from the Family Perspective

Recent work undertaken by Virdun and colleagues (2015, 2017) synthesized 24 studies that described self-reported needs of palliative care patients and families in relation to end-of-life care in the hospital setting, with nearly all of these studies (n = 21) including a focus on family participants. This work included a systematic review of the quantitative studies, which included 3117 family members (Virdun et al. 2015) and a meta-synthesis of qualitative studies which examined 278 interview quotes from participating family members (n = 672) detailing what families considered the most important aspects of end-of-life care in hospital (Virdun et al. 2017). The 11 resultant themes of these studies structure the remaining sections of this chapter.

5.1 Expert Care (Good Physical Care, Symptom Management, and Integrated Care)

Family-focused care for the domain of expert care centers around concepts of excellent nursing care, excellent symptom assessment and management, holistic care delivered from a multidisciplinary team integrated in their care planning and delivery, and the need for healthcare providers to be knowledgeable about the patient they are caring for. While patients perceived many of these aspects of care provision as highly important for optimal end-of-life care, families specifically noted the importance of the following key aspects of care provision to enable quality end-of-life care:

  • Careful attention to the personal hygiene and care needs of the patient both when family are and are not present in the hospital

  • Excellence in core nursing as well as the ability to manage specialist patient requirements (e.g., colostomy care)

  • Ensuring rapid and comprehensive assessment and management of symptoms with a particular focus on staff prioritizing the patient’s description of their symptoms

  • The specific need to manage pain and agitation well

  • Multidisciplinary care to support the patient physically, emotionally, and/or spiritually

  • Integrated care inclusive of effective discharge planning and ensuring the patient could die in their location of choice

  • That healthcare providers were knowledgeable about the specific condition of the patient and that it was clear who was in charge of care (Virdun et al. 2015, 2017)

5.2 Effective Communication and Shared Decision-Making

Family-focused care requires healthcare providers to have effective communication skills to be able to engage multiple members in different aspects of care. The ability to interview or converse with family members together is important to understanding interactions between family members (Denham 2016). Healthcare providers must ensure families understand the medical issues and clarify any technical language used. Plain language materials and providing opportunities for discussion and questions are recommended to address health literacy needs (Wittenberg et al. 2017). Effective communication is necessary to ensure that the patient, family, and healthcare providers have a shared understanding, which is dependent upon the compassionate delivery of understandable and honest information (Virdun et al. 2015, 2017). Being provided with the necessary information is important for families involved in end-of-life decision-making, because they want to understand the medical complexity and the emotional and financial implications of any decisions and be provided with sufficient and timely information to make the decisions that best reflect the patient’s preferences (Virdun et al. 2015, 2017). Being actively involved in day-to-day care planning and having regular planned discussions with the healthcare team, including discussions with physicians, are considered by families to be essential for effective communication and shared decision-making (Virdun et al. 2015, 2017).

Families are equally responsible to provide accurate information to healthcare providers including medical and treatment history, patient preferences, and subtle changes in the patient that the provider may not see. Families, likewise, have an important and active role within the healthcare team as they have experience, insights, and knowledge about the patient that can contribute to their overall health and well-being (Johnson et al. 2008). Further, the family, as the unit of care, provides information about group values, supportive interactions, decision-making, relationships, caregiving, and health habits.

The delivery, content, and timing of end-of-life prognostic communication has a significant impact on the quality of life of spousal carers of patients with palliative care needs who have dependent children (Park et al. 2015). Families’ preferences for honest and clear information communicated using nonprofessional language and with compassion help to foster a shared understanding of the clinical situation. The provision of adequate information throughout the admission helps support decision-making, decreases the families stress, and minimize surprises (Virdun et al. 2015, 2017).

An important outcome of family-focused care is patient and family coping, which can be facilitated by incorporating elements of family-focused care in practice (Wright 2007), such as:

  • Information Sharing. The healthcare team communicate comprehensive, accurate, and balanced information for families in a timely, affirming, and useful manner to enable effective participation in both care planning and care provision.

  • Collaboration. Valued collaboration with families in relation to policy and program design, implementation, and evaluation, the design of health facilities, and professional education and planning and delivery of care.

  • Participation. Valued and supported participation in care planning and provision, inclusive of decision-making, to the level of the family member’s choosing.

DiGiacomo et al. (2013) reported an example of how communication gaps can lead to protracted grief in a qualitative study of recently widowed older women. In the following excerpt, one woman described missed opportunities for healthcare providers to communicate with her regarding her husband’s prognosis (refer Box 1). This is further confirmed by data reported by Virdun et al. (2015) where families noted the importance of being able to receive straightforward information about tests, treatments, and prognoses, as well as stating that being sheltered from honest information did not contribute to quality end-of-life care.

Box 1: Unintended Consequence of Ineffective Communication: Julie’s Story

Family carer quote:

I definitely would have liked a realistic view. If somebody had said to me, “Julie, the end is nigh,” you know? Nobody ever said that. The only thing was the young doctor and only about 3 weeks before he (my husband) died; he (the doctor) was in the room and he was always so lovely, and he said to me, “Julie, have you ever heard of sepsis?” And I said, “Yes, I have.” End of conversation. Maybe if I’d answered no, he might have expanded. I remember thinking, “He hasn’t got sepsis,” but thinking, “Why did he ask me that question?” I thought about that as I drove home that night. I thought, did he know something more than I knew? Maybe I should have followed up on it. At that stage of an illness, I was waiting for them to give me information, not to have to solicit it. That’s what I was waiting for. I actually really did think, why wasn’t I given more information? All these doctors were coming around and nursing staff, but nobody was telling me anything. To go through the same thing again, I’d be asking a lot, lot more questions. I think I was a bit reticent to ask. I’d keep thinking, they’ll tell me if there’s something that I should know. I would have liked somebody to have come to me who knew the situation wasn’t going to be good and sort of alerting me to what I was going to face. I think that would have been helpful to me…

I was coloured by what happened. I thought, what if I’d said more? I don’t know in my case whether it would have altered the outcome, but I think I could have made things a little bit better for him. (Julie, age 71, wife and carer of patient who had cancer and died 12 months prior to interview)

Commentary: These excerpts reflect the interactions and the inner dialogue Julie experienced during her husband’s final days in the hospital. Although her carer role had partially acclimated her to her husband’s condition, she did not have enough knowledge to understand his illness trajectory. Julie was left ruminating over the experience after her husband’s death with feelings of guilt and anger that culminated in a formal complaint to the health service. She had an expectation that information would be provided without necessarily having to seek it out. She wondered whether emphasizing her lack of understanding would have facilitated more and better information provision. This excerpt from an interview with a bereaved spouse depicts an example of the damage inflicted on family caregivers when they perceive that their loved ones have not received adequate care. Self-blame and sorrow for her husband’s experience persisted.

Reprinted from DiGiacomo et al. (2013), Copyright 2013 with permission from Elsevier.

5.3 Respectful and Compassionate Care

Families have identified that respectful, compassionate care that preserves the patient’s dignity and supports both the patient and family is vital. Family-focused care enables a welcoming environment where healthcare providers deliver tailored care for the unique needs of each patient and their family unit. Families desire helpful, empathic, affectionate, appreciative, comforting, gentle, considerate, and capable staff. They also spoke of the fact they want to be able to have physical contact with their loved one. Finally, individualized care provision is hugely important in enabling quality care with families noting the need for patients to remain a person and not become a number or illness within the healthcare system (Virdun et al. 2015, 2017).

5.4 Trust and Confidence in Healthcare Providers

Families consistently ranked trust and confidence in their healthcare providers as highly important. Therefore, family-focused care needs to explicitly focus on developing trust and confidence for both patients and families with their treating team. An explicit focus on the principles of person-centered care provision will support this aspect of care (McCormack and McCance 2016) (refer to Chap. 33, “Nursing and Palliative Care”).

5.5 Adequate Environmental and Organizational Characteristics

Family-focused care respects the integral role of the family in care provision for patients with end-of-life care needs. In doing so, care providers should ensure hospital rules and processes both make sense and support optimal patient care. For example, families have described being asked to move their car while they were visibly distressed, patients not being given symptom relief while waiting formal admission, and visiting hour restrictions for dying patients (Virdun et al. 2017). Families also note the importance of privacy, cleanliness, and quiet within the care environment. Indeed, families noted that lack of privacy led them to feel disconnected from their loved one, unable to talk openly, and like they were simply observing. Family-focused end-of-life care ought to ensure these environmental and organizational characteristics are explicitly reviewed for each patient’s care to identify which family members may require alterations to usual care practices. For example, alterations may include changed visiting hour allowances, quarantined time for privacy where staff do not disturb the patient/family member, and innovative thinking for enabling privacy in open-plan environments such as the intensive care unit. Finally, a family-focused care environment will also consider the availability of space to support cultural practices such as congregating family, chanting, or other rituals.

5.6 Recognizing and Supporting the Family Role in Care Including Valuing Their Expert Knowledge of the Patient and Advocating for Patient Needs

Families have outlined the importance of being recognized and respected as having expertise in the care of their loved one. It is essential that healthcare providers understand and respect that many families have been providing expert care to their dying family member long before palliative care is involved, so we need to draw upon their expertise and include them as authentic partners in care. Valuing and honoring families’ contribution to care would ensure families were included as equal partners in care planning and provision and would enable their role as patient advocates to succeed. Failing to do this leads to family’s feeling they are simply being an observer to care and their contribution is not valued. This challenges healthcare providers to consider approaches to communication and care both within usual care and also at times where care may be distressing with some data showing that removal of family members at times of distress may cause long-term harm into bereavement (Virdun et al. 2015, 2017).

5.7 Financial Affairs

Ensuring that the patients’/families’ financial needs are identified and addressed in a timely manner is an often overlooked element of care. Families desire and need healthcare providers to proactively provide them with information about available financial supports, which helps to enhance comfort and decrease stress. They also want healthcare providers to create opportunities for financial issue discussions, at all stages of the patient’s illness trajectory, not just during the final days of life (Kochovska et al. 2017). Taking the lead to initiate these conversations is important, as many patients avoid starting these conversations during the early stages of the illness, as they focus on understanding their diagnosis, treatment, and planning their recovery.

For most working-aged patients, an advanced cancer diagnosis is associated with loss of employment and/or their working partner/spouse also having to reduce their working hours. Studies consistently reveal few patients diagnosed with advanced cancer return to work after active treatment and consequently experience significant economic disadvantages, especially in the absence of universal healthcare or health insurance coverage (Kochovska et al. 2017). Cancer-related financial burden has adverse psychological consequences for both patients and their families, increasing the risk of depression, anxiety, and distress (Kochovska et al. 2017). Healthcare costs and out-of-pocket expenses add to financial stress, sometimes forcing families to reduce their discretionary spending and often affecting their medical treatment (Kochovska et al. 2017).

Taking on a caring role adversely impacts employment with many carers having to reduce their work hours and/or having to stop work. In working-aged families, the spouses/partners are often also caring for an aging parent and/or a young family. In this situation, taking on an additional carer role often impacts adversely on child care costs (Kochovska et al. 2017). Patient care cost and limited access to financial assistance are additional concerns of Australian carers, while unexpected costs, bereavement costs, and legal expenses also contribute to the financial burden (Kochovska et al. 2017). As well as imposing a significant financial strain (Gott et al. 2015), a carer role is associated with significant negative impact on quality of life (Williams et al. 2014). Younger patients and those with larger families are at greater risk of financial burden, while those without income seem to have significantly lower quality of physical health (Hanly et al. 2015).

5.8 Maintenance of Patient Safety and Prevention of Harm

Families identified the need for optimal end-of-life care to prevent harm and a feeling of being unsafe within a clinical environment. Aspects of care perceived to lead to a lack of safety included poor communication, lack of person-centered care, lack of identification of unique needs of people at the end-of-life, poor nursing care, lack of timely attention, and families feeling unsure of how to be involved in their loved one’s care (Virdun et al. 2017). A recent study articulates that concepts of patient safety for those who are dying, and their family members, continue to focus on correct treatment, timely interventions, and appropriate infection control, just as would be the case for any patient, and therefore, careful attention to this is important for all patients (Collier et al. 2015). However, this same study asserts that patients with palliative care needs and their families also define patient safety quite broadly, inclusive of approaches to care, interpersonal communication, and the sociocultural context of care. Therefore, consideration of patients at the end-of-life and their families within usual patient safety parameters is required (as this patient population is not routinely considered within this forum) as well as consideration of broader contexts of safety, as articulated above. Finally, family-focused care also works to enable support and a feeling of safety for family carers to speak up without repercussions, as required (Virdun et al. 2015, 2017; Kochovska et al. 2017).

5.9 Preparation for Death

Family-focused care ought to ensure optimal communication and, in doing so, ensure families are aware of and prepared for a patient’s imminent death so as they are able to say goodbye and assist their bereavement outcomes. Honest communication, delivered compassionately, is imperative as several family members described not understanding the extent of their loved one’s illness or that they were imminently dying (Virdun et al. 2017). As healthcare providers, we need to ensure such conversations have been held and understood by families and to plan for and/or facilitate their support throughout this time.

5.10 Duty of Care Extending to the Family After Patient Death

Families have described their need for follow-up after a family member’s death so as to avoid their feeling disconnected and rushed away from the hospital at such an important time (Virdun et al. 2017). If the healthcare provider team truly partner with family members in care provision, then it stands to reason that the duty of care would extent to them, following the patient’s death. Systems and processes may hinder this aspect of care, and therefore, needs should be considered within a policy and quality improvement framework.

While the majority of palliative care services focus on contacting the decedents’ family, usually their documented next of kin, this approach may fail to identify informal caregivers, who, despite their intensive caregiving role are not listed as the patient’s next of kin because their relationship falls outside of these parameters. Given the complexities and nuances of modern relationships, an important area of inquiry is to develop the evidence base for palliative care services to systematically determine more broadly the patients’ kinship network (Phillips et al. 2018).

Grief is a normal response to loss during a period of bereavement. Spousal bereavement has been associated with increased mortality and longer hospital stays and negative effects on employment (Stephen et al. 2015). Psychological or social support (e.g., talking to family members and friends during the grieving process) and practical support (e.g., with funeral arrangements, legal and financial help) are commonly identified needs of bereaved persons (Stephen et al. 2015). When the bereaved prefers to speak to others or when family networks are dysfunctional, help is sought from professionals closer to the time of death and shortly after (Benkel et al. 2009). Children and teenagers who experienced the death of a parent to cancer have a range of psychosocial anticipatory grief and bereavement needs (Macpherson and Emeleus 2007a, b). These include maintaining contact with the dying parent; being prepared for their death; holding on to meaningful memories; maintaining privacy, normality, and continuity in family and school life; escaping the intensity and stressfulness of the home situation; being understood and supported by others; and better understanding death (Macpherson and Emeleus 2007a, b). Children and teenagers desire support and understanding from others to help them cope with feelings of grief, anger, and depression and need access to information and opportunities to talk with others who have had a similar experience (Patterson and Rangganadhan 2010).

Although grief is a normal response to loss, a subset of bereaved individuals may experience “persistent complex bereavement disorder.” It affects approximately 10–20% of bereaved people and causes significant functional impairment and symptoms that last 6 months or longer (Lobb et al. 2010; Shear et al. 2011). Complicated grief requires early intervention (Lobb et al. 2010).

5.11 Enabling Patient Choice at the End of Life

Family-focused care requires healthcare providers to be aware of and follow the patient’s advance care directive. Given recent debates about legalized euthanasia for people with advanced and critical illnesses, legal support in relation to enabling patient choice (both in relation to advance care planning/directives and legalized euthanasia) needs to be understood within each care jurisdiction with global variances notable within this aspect of care. However, the principle of care ought to remain focused on supporting patient choices, within legal parameters, is fundamentally important and forms an important aspect of family-focused end-of-life care.

5.12 Summary

The above domains of care have been consistently reported by families as contributing to optimal end-of-life care for more than 30 years, yet few healthcare systems and services have been able to effectively address these priorities (Virdun et al. 2017). However, services currently lack the ability to measure the quality of such care provision which hinders careful and targeted quality improvement strategies. Strategies focused on education, quality improvement, policy development, and research are required to truly see family-focused care realized for all patients with end-of-life care needs, irrespective of care setting (Virdun et al. 2017).

6 Strategies to Optimize Outcomes for Families

There are a number of important and cost-effective strategies that healthcare providers can implement to optimize palliative care outcomes for families, as detailed below:

6.1 Need for Healthcare Provider Self-Awareness

It is important for healthcare providers to be aware of assumptions they may have about families. Common assumptions may involve the perceived altruistic nature of family members, such that they always have the best interests of the patient at heart, when this may not be the case and/or that the family is close, supportive, and loving. Another assumption is the belief that children, particularly female children, are obliged to care for chronically ill or older family members. We all bring our own assumptions about the structure and function of families, but not all families are the same, and they all bring their experiences from the past. Activities to facilitate self-awareness can help healthcare providers to acknowledge and reflect on their own assumptions and biases to facilitate their ability to provide family-focused care (Acquaviva 2017).

6.2 Interdisciplinary Team

A key strategy underpinning the provision of family-focused interventions is the active engagement of a cohesive team of healthcare providers who are able to respond to the needs of patients and their families during the palliative phase of the patient’s illness. It is important to recognize that the focus of care should be on an interdisciplinary approach that enables and supports shared decision-making that includes the family as a core team member. Using this approach, all members of the team are able to contribute and to share their expertise in providing care to the patient’s family and in making decisions that are responsive to family issues and concerns (Haugen et al. 2015). The team’s focus should be on responding to the family’s needs, issues, and care, rather than basing their decisions on the imperatives of healthcare providers (Speck 2006).

6.3 Effectively Engaging and Supporting Families

One of the most important aspects of engaging and supporting families is to respond to them with respect and compassion, in a manner that is nonjudgmental and preserves the dignity of their personhood. It is important to recognize the unique qualities of each individual and their unique ways of behaving and responding in the palliative care phase. Chochinov (2007) outlined key elements of preserving dignity for the patient, which could equally be used in the care of families. He emphasized the importance of attitude, behavior, compassion, and dialogue. He describes each element with examples. Attitude focuses on the healthcare providers’ attitudes and assumptions so that they do not adversely affect the rapport that needs to be created and maintained with the patient. Behavior can include the necessity for honest, open, and easily understood communication, with the availability of time to answer questions and clarify information provided. Dialogue encompasses the individuality of a person and seeking to gain an understanding of the person beyond their disease or circumstances. Chochinov poses a key question in relation to the patient:

“What should I know about you as a person to help me take the best care of you that I can?” (Chochinov 2007)

This same question and the key components of the dignity-preserving model can be equally applied to the family. These principles can provide the foundation for engaging in a relationship with the family to provide effective support during the palliative care phase. Effective engagement of the family using this framework will guide the support that families require. Information about the patient’s condition, what to expect at this time, explanations of what a service provides, and the roles of the different healthcare providers are fundamental to families. Information needs to be tailored to the needs, language, and culture of the family. It is important to understand the family’s current understanding of the patient’s condition and their degree of acceptance or denial of the situation, so that information can be provided in non-threatening and empathic manner. Information that may seem self-evident to healthcare providers concerning dying and death may be totally foreign to a family who has never previously experienced the death of someone (Kristjanson and Aoun 2004).

Acknowledgment of the physical demands and caregiving roles of families is important in providing adequate support. Practical issues such as ensuring that families have access to sustenance can be provided with overnight facilities toward the terminal phase of the patient’s illness; gentle reminders to take “time-out” or obtain some relief for their caring roles are also important.

Support for the emotional needs of the family members is also critical. The witnessing of a relative’s deterioration, the impending loss, and a sense that they may be relatively alone in confronting this existential challenge require careful assessment and appropriate emotional, psychosocial support, and spiritual support (Cahill et al. 2017). Attending to these needs and preparing the family for the impending loss may alleviate some of the distress of bereavement (Fineberg and Bauer 2011). Engaging the family in preparatory grieving can be ultimately therapeutic for individual family members and the family unit as a whole.

6.4 Undertaking a Family Assessment

A thorough understanding of the patient’s family is fundamental to providing family-focused interventions. To ensure that this occurs, a comprehensive assessment of the family should be undertaken (Fineberg and Bauer 2011). This assessment will involve both psychosocial and other healthcare providers on the team. The assessment should include the identification of key family members and any other people considered “family” by the patient. To ascertain the important family member(s) to a patient, a healthcare provider can ask the patient who is important to them or who they consider their family to be and who they want at the bedside or to have present at a meeting about care. The way a healthcare provider asks this question can convey the provider’s openness to different family configurations. To normalize this phenomenon of bringing an accompanying person, the healthcare provider can explain that patients often find it helpful to invite one or more people to participate in the meeting with healthcare providers (Acquaviva 2017).

The role of family members in relation to the patient’s illness and his/her care should also be delineated, for example, caregiving duties. Identifying all the people who constitute the patient’s family ensures that no family member is excluded from the support needed during the palliative care phase (Kristjanson and Aoun 2004). It is also prudent to obtain information about any estrangements in the family, and to identify family members who are not readily available to the patient, or for the important interactions that need to take place. Documenting the family structure in the form of a genogram may help to ensure that this information is easily accessible to the entire interdisciplinary team. In the course of the patient’s care, different family members will often encounter different members of the interdisciplinary team. Recognition by the team of all family member(s) provides a context that is most likely to enhance communication and good relationships between the family and team members. It is also important to gain an understanding of the patient’s current illness and its impact on the family as whole and on individual family members (Lethborg and Kissane 2015). Previous significant life events, as well as important events likely to occur in the future (e.g., the birth of a child), should be documented. Particular note should be made of any history of mental illness, substance abuse, or any intra-family abuse (Fineberg and Bauer 2011). In addition, the possible impact of the patient’s illness, according to the life stage of individual family members should be considered. Social aspects of the family unit such as culture, language, financial, and employment issues should also be recorded (Lethborg and Kissane 2015). Religious practices and an understanding of spiritual beliefs should be assessed. The particular sources of meaning and purpose for family members will be relevant, given the context of dying and death of their family member.

6.5 Identifying and Understanding Family Patterns of Communication and Cohesiveness

A specific area for family assessment relates to an understanding of how family relationships work, the sources of strength within the family structure, and the family members’ preferred communication style(s). Previous ways of relating to each other, and managing challenging family situations, may influence and provide the team with guidance as to how the family might respond and confront the life-limiting illness of their family member (Lethborg and Kissane 2015). Any previous or current issues that have provoked conflict should be identified, particularly those affecting the patient at this final phase of his or her illness. This information and any major concerns articulated by individual family members, or by the family in its entirety, will assist the interdisciplinary team to respond with suitably family-focused interventions (Lethborg and Kissane 2015). The resolution of family conflict may not be possible. However, appropriate family-focused interventions and support may improve family relationships. Such interventions may also foster more open communication and enhance decision-making so that the family’s cohesiveness is optimized at this time (King and Quill 2006).

6.6 Engaging Families in Decision-Making

Decision-making in the palliative care context will be influenced by the communication styles of the family and the family’s previous ability in making decisions. It may be that the family do not routinely make joint decisions or they may have a preference for one family member to make decisions on their behalf (Wellisch 2000). In addition to understanding previous decision-making patterns, the interdisciplinary team requires an understanding of the degree to which the family unit and individual family members wish to be involved in this process. Some families are content to forego input into decision-making and to allow all decisions to be made by the healthcare team. Alternatively, other families and family members require regular information, consultation, and involvement in decision-making (Isaac and Curtis 2016). It is important to elicit from the family where they are placed on this continuum of decision-making and which decisions are of particular concern to them. For instance, the family may be comfortable for the interdisciplinary team alone to make decisions about the patient’s care. However, they may require the team to consult with them about all decisions that affect both the patient and the family. Families may often have a preference to engage with specific team members in the decision-making process. This preference should be shared with other team members. It is essential to establish and document to what degree family members are surrogate decision-makers for the patient or if one particular family member is the primary spokesperson and surrogate decision-maker (Isaac and Curtis 2016). Patients and families also value the naming of a decision-maker as a contingency plan for situations in which the patient may be unable to make decisions (Cahill et al. 2017). Recognition of these key factors will guide the team to respond effectively and will enable the provision of family-focused care in relation to decision-making.

The processes required for decision-making are likely to involve sharing of information with families and individual family members, in either one-on-one conversations, informal consultations around the patient’s bedside or at home, or during a family meeting. Decision-making is likely to be an iterative process and although it is time-consuming, it is integral to family-centered care. In the era of enhanced communication, telephone and electronic devices can facilitate discussions and decision-making when family members are not physically available (Fineberg and Bauer 2011).

Evidence supports the importance of decision-making by family members in the palliative care setting, not only from the family perspective but also for the patient (Cahill et al. 2017). It should be recognized that decision-making may not only focus on clinical issues. Decisions about everyday activities such as going to the hospice garden or having a pet visit may be just as vital for the patient and family. This type of decision-making enables the patient and family to experience some degree of control in their life at a time when this may be limited. It is incumbent on the interdisciplinary team to recognize and support such decision-making to ensure family-centered care (Cahill et al. 2017).

6.7 Undertaking a Family Meeting: Purpose, Roles, and Responsibilities

Cahill et al.’s (2017) systematic review of family meetings highlighted research indicating effective communication is essential to understanding and responding adequately to family needs and concerns. Bringing together patients, family, and interdisciplinary team members for a focused discussion has been advocated as a method to facilitate effective patient-family-team communication in the specialist palliative care setting (Cahill et al. 2017). These formalized conversations are usually referred to as a “family meeting” or a “family conference,” and these terms are often used interchangeably in clinical and research settings. In the palliative care context, a family meeting may be defined as a one-off meeting that includes the patient (when possible), family members, and healthcare providers to discuss an issue related to the health and care of the patient and family (Fineberg et al. 2011).

Family meetings can provide a forum for sharing of information concerning the illness experience, goals of care, current treatment, and end-of-life care. The adoption of an open style of communication by the interdisciplinary team members can help build consensus about the goals of care and management plans and promote a shared understanding of the current clinical situation and its uncertainties. These meetings can also increase the patient’s and family’s involvement in decision-making. Facilitating expression of family concerns, issues, and needs provides the family with a sense that their concerns are being heard and addressed (Cahill et al. 2017). Discussion at these meetings will inevitably include clinical issues; however, psychosocial issues, preparation for death, and other key areas of importance for that patient and family may be paramount and should also be addressed. It will be an important task to establish the best way to communicate with the patient, family, and the clinical team, and with whom, during this phase of the patient’s care.

Conflicting perspectives may emerge between the patient and family members, especially when certain family members are not able to be present. Family participants (or significant others) may also raise contentious issues and unresolved concerns or indicate pre-existing family conflict. In all cases, it is important to address the specific issues (if possible) or to give voice to concerns as expeditiously as possible so that the meeting’s focus remains on the patient and the family (Cahill et al. 2017). In some cases, it may be prudent to acknowledge these concerns but to offer an alternative time to deal with them more fully, either with both patient and family present or with the family in the absence of the patient. Significant conflict between the patient and a family member, such as the existence of an abusive relationship, is not conducive to the patient or family member being able to honestly discuss their concerns and issues. In such situations, a family meeting may not be possible or may even be contraindicated.

The practical aspects of arranging, organizing, and convening a family meeting are important if one is to achieve the maximum benefits for all participants in terms of communication, information sharing, and decision-making (Kissane and Hempton 2017). Key components include who will participate and where and how the family meeting will be conducted. The patient and the primary family support person including any additional family members who wish to participate or whom the patient requests to attend. The patient’s palliative care consultant and/or registrar and social worker should routinely attend the meeting. Other members of the team, including pastoral care, nursing, and allied health staff attend as required according to the agenda or the specific issues to be discussed. Patients and families may also request the presence of particular team members during the preparation phase of the meeting. Prior to the meeting being convened, one of the attending healthcare providers will be designated to facilitate the meeting based on mutual agreement with other team members. A co-facilitator of the meeting may also be considered (Kissane and Hempton 2017). Ideally, the lead healthcare provider should have had prior experience in facilitating family meetings in the palliative care setting. All participants should be informed in advance of the date, time, and place for the meeting and commit to being present for the entire meeting, with the exception of unanticipated crises. This will ensure that the “flow” of conversation and discussion are not disrupted nor are participants distracted. The meeting focuses on the patient and the family.

Given that the agenda will influence the goals of the meeting, it is important to recognize that the process by which the agenda is set varies considerably in the reported literature. Some authors suggest that healthcare providers set the agenda. However, the Australian Guidelines for Conducting Family Meetings in Palliative Care (Hudson 2004) recommend that the primary family carer should be the one to identify the main issues and concerns; if the patient attends, he/she also should attempt to identify key issues. Whichever method is used, a prearranged agenda shared with all participants is preferable to an ad hoc arrangement.

A private, comfortable space with adequate seating and ventilation is preferred for the meeting. Meetings should not be held in a shared room within inpatient units unless there is no other option physically possible. The space for the meeting should be prepared in advance so that the meeting can commence in a timely and unrushed fashion. The family meeting begins with the facilitator ensuring that all participants introduce themselves and indicate their relationship to the patient and to each other. The participating healthcare providers are reminded of the importance of “open listening” and to refrain from interrupting the patient and family discussion or directing the discussion away from those issues raised by the patient and family members. Occasionally, however, clarification of an issue or point will need to be made to provide information requested by the patient and/or the family. Kissane and Hempton (2017) describe specific details of communication skills required in the context of family meetings.

The agenda should guide the family meeting, although it is likely that the patient and/or their family may raise additional issues or concerns. It is important that the facilitator acknowledges and facilitates discussion about the issues raised. However, clarification of information about the patient’s illness, prognosis, goals of care, and management plans will usually be required (Kissane and Hempton 2017). Patients and family members should be supported when raising anxieties or fears so that these can be heard by all present and addressed in a timely manner (Cahill et al. 2017).

Once the discussion has been completed, the facilitator summarizes the agreed goals of care. Other key points that have been discussed or agreed to, any matters of disagreement, and any actions required to be undertaken following the meeting are confirmed. Endorsement for the decisions made and the actions to be undertaken is sought from the patient, family, and healthcare providers (Hudson et al. 2008; Kissane and Hempton 2017). The facilitator concludes the meeting by emphasizing the positive results from the meeting; acknowledging the patient, family, and clinical contributions to the meeting; and thanking all the participants.

Guidelines for Conducting Family Meetings in Palliative Care were developed in Australia (Hudson et al. 2008) based on available literature, various theoretical models, expert opinion, and the results of focus groups. These consensus guidelines provide a planned approach for preparing, conducting, and documenting the agreed decisions resulting from a family meeting. An evaluation to assess the effectiveness of these Guidelines (Hudson et al. 2009) demonstrated a significant increase in families’ unmet needs being satisfied as a result of participating in such meetings. Family members also reported that the meetings were useful because they gained a better understanding of the patient’s illness and what to expect in the immediate future.

7 Conclusion and Summary

While caring for a family member with a life-limiting condition can be distressing, it can also be a positive and rewarding experience. Carers have reported positive experiences from caregiving to include a strengthened relationship between carer and care recipient, personal growth, increased self-efficacy, and recognition of personal strength through adversity, acceptance, and necessity (Hudson 2004; Wong et al. 2009). However, family-focused care is critical in supporting positive care experiences and more healthy adjustments to grief and bereavement, where possible. Challenges to family-focused care include individual healthcare provider practice that fails to prioritize working in partnership, a lack of policy and infrastructure support with often-exclusive focus on patient needs, and a lack of open, innovative, and creative thinking to facilitate and partner with families caring for people at the end of their lives. Meeting these challenges through education, policy reform, quality improvement initiatives, and research provides enormous opportunity for improved family-focused end-of-life care into the future.