A dynamic, non-linear process

For a group of people to become a team they must share a common purpose, be strongly committed to the achievement of specific tasks, and value teamwork through which they expect to accomplish more by cooperating. Setting a clear task that is owned by each member and sharing outcomes are central to the transition from a group to a team.¹³

Another characteristic that distinguishes groups from teams is their size and leadership.¹³ While groups vary in size, teams contain no more than a few members who share leadership in clinical practice, although at an administrative level they are led by a senior member. Depending on a child’s condition and family’s situation, for example, different professionals may take the lead at any time and make a special contribution in order to achieve the team’s goal and tasks. Regardless of whether the team uses a manager to facilitate the coordination of actions or it chooses to be self-managed, the importance is that responsibility for outcomes be shared. By contrast, in a group, leadership is assigned to one person who imposes his or her leadership style that usually remains unchanged despite the changing focus or work activity.¹⁴

We view teams as dynamic systems that have the potential to evolve, grow, and function with increasing degrees of openness, communication, and collaboration among care providers. A team’s development is not linear. It is characterized by cycles of forward vs. regressive movement, as well as by periods of stability, disorganization, being stuck, and growth. What determines a team’s level of development is related to the ability of its members to establish and maintain collaborations that ensure quality care and are enriching to both families and team members.

Among the available models for understanding team development, and especially applicable to palliative care, are those proposed by Papadatou and Morasz.^9,15 They take the position that over the course of development, team members experience periods of co-existence, mutual acknowledgment and parallel collaboration, and of collaborative alliance with concomitant changes in disciplinary boundaries^7,9,15,16 (Fig. 6-1).

Fig. 6-1 Dynamics of Team Development.

Redrawn from Papadatou, D. In the Face of Death: Professionals Who Care for the Dying and the Bereaved, New York, Springer Publishing; 2009.)

When functioning in the mode of co-existence, professionals work more as a group than as a team. Goals are generally shared, specific roles are identified, and tasks are divided among care providers who provide services that are fragmented and compartmentalized. Not infrequently a predetermined package of medical, nursing, psychological, social, and spiritual services is offered to families of seriously ill children, who are then introduced or referred to different experts. Transactions among professionals tend to be rigid and communication limited. They rarely report to their colleagues about the nature and outcomes of their intervention or observations—information that could be useful to others in their interactions with the families. Each care provider is focused on his or her field of expertise and communicates achievements through brief reports that are usually included in the patient’s file.

In the mode of parallel collaboration, care providers begin to work as a team. They acknowledge each other’s knowledge and skills, and work in parallel yet independent ways toward shared goals and tasks. Transactions are richer and communication is more open, but it remains superficial. The team members accomplish their job, but lack the ability to integrate the richness of existing services into an explanatory and comprehensive framework.

In parallel collaboration, teamwork is often multidisciplinary and team members do not necessarily adapt their roles and responsibilities to those of other professionals. Information is usually communicated via the patient’s file or in staff meetings where each provider reports his or her work that is added rather than integrated into the plan of care that is offered to a child and family.

In the mode of collaborative alliance, emphasis is placed on effective and open communication among professionals who plan, offer, and evaluate their collective services. Information circulates and team members learn from each other, broaden their horizons of understanding, and critically review their work by acknowledging their strengths and limitations. A reflective process is central to their collaboration and evaluation is periodic both with regard to the outcomes as well as to the process by which services are provided and goals are achieved.

Teamwork now becomes interdisciplinary in nature and is based upon the close collaboration among professionals who set clear goals, decide upon a course of action, and assume the responsibility of care as a team—not as individuals. Team members are characterized by a high degree of interconnectedness and a sense of belonging. The identity of the team is set above their personal identities. Mutual support becomes essential in the pursuit of collective goals and in coping with challenges and difficulties that are inherent in care. Leadership, responsibility, and accountability in interdisciplinary teams are usually shared.

In well-balanced and experienced teams, teamwork often takes the form of a transdisciplinary alliance. Care providers train one another in some domains of their expertise to broaden the horizon of knowledge and skills and become competent in assessing and responding to a wide range of needs without necessarily duplicating their services. This is particularly important when caring for children who are terminally ill and whose families choose to limit the number of relationships with professionals, and focus on the dying child and themselves.

For a collaborative alliance to develop, care providers must spend time working together, sharing experiences, exploring different points of views, and developing a common language that does not exclude any member. Interdisciplinary and transdisciplinary teamwork require interdependent collaboration and are possible only if the team functions as an open system that makes use of relevant information. Relevant information is any information that helps members to understand how they operate as a system, how they manage suffering and adversities, and how they make use of their resources.^9,17 Such information helps team members learn from experience, consider alternative ideas and coping patterns, embrace new initiatives, take risks, implement changes, and grow as a team. Unless there is opportunity to share information about what is happening in the day-to-day work, how things are accomplished, and how professionals think, feel and behave, team members cannot be in control of the quality of services they provide, and the system cannot be self-correcting.¹⁸ Such openness is not simply limited to the disclosure and airing of feelings and thoughts, but demands a reflective openness that enables team members to challenge their own and others’ thinking, suspend a sense of certainty, and share experiences with a receptiveness to having them challenged or changed.^16,19

In such a team, care providers derive satisfaction from both the provision of services that are helpful and meaningful to patients and families, as well as from their collaborations with one another in the pursuit of a common purpose.

Organizational culture and context

A team’s development is not solely determined by its members.^9,20 The social and organizational context in which it provides services has a major impact on how it develops and functions. For example, in some places pediatric palliative care services are delivered by teams in the community through home, respite, or hospice programs.^21–24 In others, they are introduced in the hospital and offer consultation services to professionals, families, and other teams.^4,25 In many countries that lack resources or are reluctant to acknowledge the needs of dying children and grieving families, palliative care teams are either non-existent or encounter major social, institutional, and legal obstacles in the provision of interdisciplinary services. Even in resource-rich countries that acknowledge the needs of dying children and grieving families, provision of interdisciplinary and palliative care services may be hampered by the country’s healthcare system.

The value system of a given social context affects the culture of the organization or service to which a team belongs, which, in turn, influences the services it provides. The organization’s culture plays a major role in how seriously ill children are perceived, how they are cared for, and how they are integrated into the organization or service. Organizational culture also has an impact on how suffering is regulated, hope is instilled, and time is managed when a child’s life is threatened.

Some organizations that assume a cure-oriented approach tend to dismiss or downplay the role of palliative care services, and instead adopt a protective approach by concealing the possibility of death from the child and occasionally from parents. Other organizations strive to integrate curative, life-prolonging and palliative care services and create a space for mutual collaborations among several teams and family members who are actively involved in the decision-making process.

Hence, the culture of an organization or service may promote or hinder different forms of teamwork, depending on its philosophy of care, its values, goals, and priorities. This does not mean that teams do not shape their own course of development, rather, some are helped and supported through this process, while others have to work harder to fully develop and pioneer their approach through the healthcare system.

Indicators of team development, functionality, and effectiveness

We take the position that teams are active and dynamic systems with potential to change, develop, and grow. Teams, like the individuals who compose them, are not passive agents. Teams, like their members, are active agents who both shape and are shaped by their individual and collective responses to life-threatening illnesses, loss, suffering, and those whom they encounter in their work. Teams, like their members, are both subject to and react to internal and external stressors associated with the care of seriously ill patients and their families. Affected by the wider social and organizational context of work, team members, consciously or unconsciously, decide how to operate and collaborate with each other in order to meet the challenges of life-and-death situations. The team’s development, functionality and effectiveness are reflected in the patterns by which its members manage team boundaries and team operations as well as suffering and time.⁹

A partnership in care

Most parents want to assume a central and active role in the care of their ill child. They acquire in-depth knowledge of the child’s condition and treatments, and develop appropriate skills in order to meet their complex needs.^27,28 Parents of seriously ill children are faced with challenges and crises that are different from anything they have ever encountered in their lives.²⁷ In their desire to be effective in this new parenting role, they have to interact with the professionals who can help them develop strategies and skills in order to manage present situations and anticipate future needs in both their sick and healthy children.^27,28 This close involvement often leads to the erroneous assumption that parents are members of the team. Contrary to some clinicians who have written about teams and palliative care, we take the position that parents and patients are not members of the team.^8,29

To speak of a patient or parent as a member of the team works best at a metaphorical level, and even then it is misleading. No parent or child can ever be a member of a multidisciplinary or interdisciplinary team in any real sense. They do not share the team’s history, its achievements and failures, its traumas and successes, or its trajectory through time. Nor do they necessarily have the same goals, values, and priorities that a team holds for itself and the families it serves. And not insignificantly, to view parents and patients as members of the team is to demean the unique relationship not only between ill children and their parents, but also between teams and those they serve.

A more appropriate way of conceptualizing the patient and parents’ place with and around the team is to consider that all share a symbolic space in which care is offered and received. This space belongs neither to the family nor to the team, but to their unique relationship.

It is hoped the relationship develops into a partnership. As partners, professionals and families define goals of care, which may change over the course of the illness, and rely upon each other in order to achieve them. While team members assume the responsibility of providing information, guidance, advice, and specialized care, family members are responsible for participating in decisions and communicating their needs, concerns, values, and preferences. The family’s responsibility should be taken into consideration when developing a care plan.

In this partnership, children’s views, concerns, and desires must be considered and approached with sensitivity and skill. This requires awareness of the differences in the ways children express both directly and symbolically, their physical, psychosocial and spiritual needs, preferences, and concerns; children and parents’ positions in the family; the rights, duties, and obligations each has to the other; and the impact of team’s actions on the patient’s and parents’ futures.³⁰

Teams that are well-balanced and well-developed function as open systems. They have flexible yet stable boundaries that enable families of seriously ill children to move in and out, according to need. Team members are not threatened by becoming overwhelmed by the family’s grief, confusion, disorganization, despair, or suffering. They are able to contain these experiences. They assist parents and children in acknowledging, expressing, and accepting their feelings as well as in assimilating their experiences, and adjusting to a reality that is often filled with challenges, uncertainty, and surprises. They accompany families in their trajectory through the child’s illness, cure, or death and in some instances maintain enduring bonds throughout the long period of bereavement.

Teams that experience difficulties with various aspects of boundary maintenance, goal setting, or time management are more likely to establish enmeshed or avoidant relationships with the patient and family.⁹ An enmeshed relationship develops when both the team and the family are unable to contain suffering, as well as the threat or reality of death. They become one, and remain undifferentiated, sometimes even after the child’s cure or death. For example, a team may need families that adore and glorify it, while at the same time some families need the team to maintain the memory of their deceased child to avoid moving on with life. An avoidant relationship between a team and a family, on the other hand, transforms their partnership into a strictly bureaucratic affair, a consumer-provider business that aims to manage practical issues without addressing the emotional and spiritual aspects of living with a life-threatening illness. Avoidant or enmeshed relationships are often reflective of the team’s and family’s inability to effectively manage the challenges of living with or dying from a life-threatening illness.