| | A Process to Facilitate Decision Making in Pediatric Stem Cell Transplantation: The Individualized Care Planning and Coordination ModelReceived 11 October 2006; accepted 13 November 2006. Abstract Providers of care for children undergoing stem cell transplantation (SCT) skillfully combine the roles of scientist and clinician. As scientists, they apply scientific methods and disease theory in the creation and testing of new therapies and in the careful observation and exploration of treatment outcomes. As clinicians, they are capable of intuitively delivering care in a patient- and family-centered context of meaning and life values. The specialty of SCT has inherent aspects that make treatment decision making complex and potentially contentious. Having a strategy ready to implement in advance or at the time when treatment decisions need to be made will facilitate and enhance the decision making process for both the health care team and family members. Here we introduce the individualized care planning and coordination (ICPC) model as a practical approach to facilitate ethical and effective decision making in pediatric SCT settings. The ICPC is a 3-step model comprising (1) relationship—understanding the illness experience from the perspective of the patient and family, sharing relevant information, and assessing ongoing needs; (2) negotiation—prognosticating, establishing goals of care, and discussing treatment options; and (3) plan—generating a comprehensive plan of care that includes life and medical plans. Based on a foundation of a care of competence, empathy, compassion, communication, and quality, the ICPC model aims to diminish contentious family–staff interactions that can lead to mistrust and help guide treatment decision making. The ICPC model enhances communication among patients, families, and clinicians by revealing patient and family values and medical and quality-of-life priorities before reaching or even during critical decision points in the transplantation process. Introduction  Health care providers of children undergoing stem cell transplantation (SCT) have the difficult task of skillfully combining the roles of scientist and clinician. As scientists, they apply scientific methods and disease theory when creating and testing new therapies and while observing and developing explanations for treatment outcomes. As clinicians, they apply intuition-based knowledge to clinical situations to foster patient- and family-centered care. These simultaneous roles require the SCT clinician to be a humanist practitioner who is skilled in treatment decision making, competent in clinical care practices, and compassionate and empathic in human interactions while maintaining the ability to theoretically explain therapeutic and person-specific care outcomes. Although cure rates in pediatric SCT have improved, children undergoing this treatment modality experience a great deal of suffering, their quality of life is significantly threatened and families must often deal with uncertainty about outcomes and loss [1, 2, 3]. In patients with childhood acute lymphocytic leukemia or acute myeloid leukemia (AML) treated with first allogeneic transplantation, survival at 5 years ranges from 40% to 60% [4, 5, 6]. Survival rates for patients with acute leukemia of any sort who relapse after SCT is poor, with leukemia-free survival after a second allogeneic transplantation of only approximately 25% [7]. Morbidity during the immediate transplantation period is significant, with patients experiencing mucositis, pain, veno-occlusive disease, and respiratory complications. These children are also more likely to die of treatment-related complications than are those who die secondary to a malignancy but without transplantation as part of their treatment [8]. Furthermore, patients, family members, and their clinicians experience significant physical, emotional, and spiritual distress. Clinicians for these seriously ill children will likely face difficult and at times urgent treatment and care decisions that require or benefit from the participation of both the child and family [9, 10]. These may be decisions about indications for procedures (eg, transplantation), withholding of certain invasive therapies (eg, painful procedures), or withdrawing of life-prolonging measures (eg, mechanical ventilation). Other scenarios may present ethical challenges, such as those encountered in the care of children with inescapable suffering or in dealing with families who have unrealistic expectations and ask for interventions considered medically inappropriate. Treatment decision making in SCT can be complex, potentially contentious, and sometimes required promptly in response to changing clinical conditions [11, 12, 13, 14, 15, 16]. Having a strategy ready to implement in advance will facilitate and enhance the decision making process for the health care team, family members, and, when possible, the patient. A clinical decision making strategy also could help reduce contentious family–staff interactions and help guide decision making by enhancing communication among the patient, family, and clinicians, revealing patient and family values and priorities before reaching or even during critical decision points in the transplantation process. The individualized care planning and coordination (ICPC) model is a practical clinical strategy designed to facilitate ethical and effective decision making in the pediatric SCT setting. Because the ultimate goal of SCT is to cure the child’s illness, care decisions are likely to be both disease-directed and informed by family and patient preferences. A strategy designed to facilitate treatment decision making in SCT needs to be conceptually consonant with the cure-oriented focus of transplantation while simultaneously attending to the physical, emotional, and spiritual suffering that these pediatric patients and their families can experience [10]. The likelihood of significant suffering, the high incidence of morbidity and mortality, and the need to make frequent difficult decisions in an ethical and effective manner make the candidate pediatric SCT patient population eligible for the ICPC model. In this article we use a contrived case presentation and specific decision point questions to outline and inform each of the 7 components of the individualized care planning process for patients undergoing SCT. Case study Steve is an 11-year-old white male diagnosed with acute myelogenous leukemia (AML) who underwent transplantation with a matched sibling donor approximately 2 years ago. He has received news that his leukemia has relapsed. He tolerated the previous transplantation with few complications. The patient and the family have requested a conference to discuss treatment alternatives. Questions: 1.What significance does understanding the illness experience through the patient and family’s perspective play in recommendations that you will make? 2.What weight do the patient and family’s values have in the decision making process? 3.When communicating prognosis, what information do you provide? After weighing the options of aggressive pain and symptom control only, palliative chemotherapy aimed at life prolongation, and second allogeneic SCT, Steve and his family decide to enroll in an SCT clinical trial for patients with relapsed AML after first transplantation. Shortly after engraftment, Steve sustained multiorgan failure necessitating intubation and admission to the intensive care unit. In the face of worsening multiorgan failure, the care team has a conference with the family. Questions: 1.How do you help integrate comfort care and the child and family’s values into the care plan? 2.Is there a point at which you would recommend withholding or withdrawing treatment with curative intent? 3.How would you proceed if the family requested an intervention that you consider medically inappropriate? The family agrees to withhold further escalation of treatment with curative intent. After this decision, however, Steve’s status stabilizes, and he is able to undergo extubation and transfer to the floor. He remains anuric, necessitating continued daily dialysis, and his ascites continues to worsen, necessitating periodic paracentesis for comfort. Steve begins to complain of increasing pain. Because of his grim prognosis and poor quality of life, another care conference is held. The family decides to focus on comfort care. They feel that life-sustaining medical treatments (LSMTs) are “prolonging death rather than prolonging life.” The family agrees to place a “do not resuscitate” order in Steve’s chart. Question: Would you want to discuss the issue of withdrawing LSMTs, such as dialysis? The next day, Steve’s symptoms increase, but the medical team is able to keep him comfortable. Later in the day, he dies, surrounded by family and friends. Question: What is the physician’s role in the care of the imminently dying patient and in this family’s subsequent experience? The ICPC model The foregoing case helps illustrate the need for a framework that can enhance the process of decision making, care planning, and care coordination [17]. Hammes et al. [18] recently identified that advanced care planning can be helpful in ensuring the best care, providing time and information to make decisions, communicating desired care, and offering peace of mind. The ICPC model involves a full spectrum of care, from understanding the child and family’s unique illness experiences (ie, their perceptions, expectations, hopes, wishes, and preferences), to sharing of upsetting information (including conversations about potential care scenarios created in the context of prognosis, realistic goals, and treatment options), and finally establishing an effective care plan that reflects careful consideration of all elements relevant to the decision making process and balances the use of treatments with curative intent and supportive care interventions designed to enhance the child and family’s quality of life [19]. Conceptual Foundation of Care in the ICPC Model The conceptual bases of the ICPC model are compatible with pediatric palliative care practices directed to attend suffering, promote healing, and improve quality of life from the time of diagnosis of a life-threatening illness [10]. The ICPC has a concomitant focus on disease-directed care (medical plan) and relationship and quality-of-life care planning (life plan). It involves essential, interactive, and continually evolving concepts of treatment decision making: competence, communication, compassion, empathy, and quality (Figure 1) [20, 21, 22, 23, 24, 25]. Table 1 provides definitions of these and other key terms. In SCT, where patient morbidity and mortality rates are high, these foundational concepts are a part of every patient, family, and team interaction. | | |  | Term | Definition | |
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| Competence | Safe, appropriate, and effective care that reflects professional excellence in SCT and a certain level of expertise in palliative and end-of-life care, and the ability to function well as a member of an interdisciplinary care team; an ongoing process of ensuring clinical excellence. | | | Communication | A therapeutic tool involving verbal and nonverbal skills that can help reduce patient and parent suffering and is central to a trusting clinician–patient relationship. | | | Compassion | A deep feeling of sharing the suffering of another coupled with a desire to help. | | | Empathy | Identifying and understanding the feelings, situation, and motives of another. | | | Quality | Care that meets or exceeds all standards of approved practices | | | Relationship | A connection between people, facilitated between clinician and patient and family by understanding the illness experience from the perspective of the patient and family, sharing relevant information, and conducting ongoing assessments of patient and family needs. | | | Negotiation | A mutual discussion and arrangement between the patient, family, and care team with the goal of reaching consensus about care goals; often involves use of care scenarios. | | | Consensus | Agreement about primary care goals in the negotiation process reached by the care team, patient, and family, and is an essential step before developing a plan of care. | | | Plan | Generation of a comprehensive approach to care that includes a medical plan, designed to address disease management alternatives, and a life plan, designed to achieve the child and family’s personal goals. | | | | |
In what follows, we use the case study of Steve and his family to detail the 3 steps of the ICPC model (Figure 2). Step 1: Relationship There are 3 components to this step: understanding the illness experience from Steve and his family’s perspective, sharing relevant information, and a comprehensive needs assessment of Steve and his family. Addressing all 3 aspects of the relationship step will allow for balanced insight into their care. This step will inform the recommendations and care scenarios that a clinician can provide Steve and his family as they work through this difficult illness trajectory and contemplate decisions regarding proceeding with transplantation or forgoing cure-oriented interventions. Understanding the illness experience Central to the treatment decision making process is the clinician’s ability to comprehend and appreciate the illness experience from the perspective of the patient and family without judgment. Achieving this perspective is facilitated by learning from the child and family about their, wishes, perceptions, fears, preferences, beliefs, and values and how these contribute to their personal realities. The clinician’s ability to be comfortable with silence and create a safe, nonjudgmental atmosphere conducive to open and honest communication helps patients and families share their experiences. Listening and empathic presence are powerful tools in the transplantation clinician’s arsenal that can affect patient and parent outcomes [26, 27]. Questions and statements that can help elicit the patient’s and family’s personal experiences are listed in the left column of Table 2. The interdisciplinary care team approach helps elicit these insights, which often are too difficult for any single member of the team to elucidate. Sharing relevant information Patients and families value clear, concise, and accurate information to guide their decision making [28]. Using guided conversations to ensure that the patient and family’s educational needs are met by sharing specific information, SCT clinicians ensure their participation to the fullest extent possible. There can be significant barriers to consistently communicating clearly and concisely with patients and families. Findings from several studies indicate that the bearer of bad news can elicit strong negative reactions, such as anxiety and fear, in family members [26, 27]. Anticipation of such reactions can contribute to a clinician’s reluctance to deliver bad news, termed the “MUM effect” [29]. This effect is particularly strong when the recipient of the news is perceived to already be significantly distressed [30]. A second barrier is the lack of any formal training in communication among pediatric oncologists, including SCT clinicians. Only approximately 10% of subspecialty-trained oncologists have received formal communication training [31]. Careful planning facilitates sharing difficult information during face-to-face conversations [32]. Taking an individualized yet systematic approach as is used in the ICPC model can diminish clinician and family apprehension and contribute to improved communication. The International Pediatric Oncology Society (SIOP) working group on psychosocial issues also supports the use of a protocol for communication while tailoring information in patient- and family-specific ways [33]. Examples of exploratory questions, empathic statements, and validating responses useful in difficult conversations are given in Table 2. Conducting an interdisciplinary needs assessment An assessment of needs is patient- and family-centered, comprehensive, and completed at regular intervals and during times of crises. These assessments are conducted in a way that considers the child and family’s time, effort, and emotional burden and preferences. The needs thereby identified are then linked to both the plan of care and to indicators that measure patient and family outcomes [34]. One study of parents of dying children pointed to their desire for honest and complete information, ready access to staff, care coordination, emotional expression and support by staff, preservation of the integrity of the parent–child relationship, and faith [35]. Patient needs will vary by age of the child and potentially by their clinical situation [36]. In a study of pediatric cancer patients participating in a phase I clinical trial, adolescents reported that their relationships with others were the primary factors influencing their treatment decision making, and, furthermore, that their motivation to participate in the trial was rooted in altruism and a desire to benefit others [37]. Without an ongoing needs assessment, care outcomes may be compromised and the ICPC process left incomplete. This component of the process incorporates ongoing assessments of the patient, family members, clinicians, and care system. Table 3 lists examples of each domain of a comprehensive interdisciplinary needs assessment [38]. | | | | Assessment Domain | Examples | |
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| Structure and process of care | •Specialty-level trained symptom management experts available. •The setting of care should meet the preferences, needs, and circumstances of the patient and family. •The care plan is based on a comprehensive interdisciplinary assessment. | | | Physical aspects of care | •Symptoms and side effects are assessed and managed in a timely, safe, and effective manner. •Symptoms and side effects are assessed and managed in a manner that is patient and family-centered. | | | Psychological/psychiatric aspects of care | •Psychological/psychiatric needs are assessed and managed in a timely, safe, and effective manner. •Grief and bereavement program is available to assess and manage patient, family, and staff grief. | | | Social aspects of care | •Comprehensive interdisciplinary assessment identifies the social needs of patients and families. | | | Spiritual, religious, existential aspects of care | •Spiritual and existential dimensions are assessed and responded to based on the best available evidence. •Spiritual and existential dimensions are approached in a manner that is acceptable to the patient and family as they pertain to the patient’s illness. | | | Cultural aspects of care | •Needs are assessed in a culturally sensitive manner. •Specific patient and family cultural needs are assessed. | | | Care of the imminently dying | •During this stage of the illness trajectory, the comprehensive needs assessment continues. •Signs and symptoms of impending death are assessed, recognized, communicated, and treated as needed. | | | Ethical and legal aspects of care | •Healthcare professionals assess and attempt to incorporate the values, goals, and preferences of each patient and family. •Need for ethics consultation should be assessed based on the comprehensive needs assessment and discordant steps in the process (eg, cure as primary goal in end-stage cancer). | | | Educational aspects of care | •Comprehensive interdisciplinary assessment identifies the informational and educational needs of patients and families. •Specific patient and family information is provided in a timely manner. | | | Relational aspects of care | •As a part of the generation of a life plan, the relational needs of the patient and family are assessed. •Relationships are assessed and augmented throughout the illness trajectory. | | | | |
Step 2: Negotiation Because of the trust that has been created and the relationship that has been established between the care team and Steve and his family, specific care scenarios can be provided and the process of negotiation can begin. This step combines prognosticating and discussing goals of care and specific treatment options for Steve and his family to consider, in an attempt to achieve consensus before moving on to create a comprehensive care plan. These discussions are intrinsically difficult because they include conversations about emotionally charged events that are future possibilities. Contrasting possible care scenarios is a pragmatic and particularly useful strategy for guiding these difficult conversations by presenting available treatment options within the framework set up by the prognosis and an overreaching goal of care. This step will encourage informed decision making for Steve and his family as they work through the difficult illness trajectory and contemplate decisions at each of the key time points in the case. Establishing prognoses and communicating them effectively Developing a prediction of the probable course and likely outcome of an illness and then conveying this to both the patient and the family can help them cope with the inherent uncertainty of treatment. This may help them develop an accurate understanding of the clinical realities while also maintaining a sense of hope. Technology in the pediatric SCT setting continues to advance and evolve, and new approaches are constantly under investigation, making prognostication quite difficult for health care providers. Yet it is precisely this kind of information that patients and families find helpful in their decision making [39, 40]. A thoughtful discussion of prognosis allows clinicians, patients and families to begin finding common ground related to patient and family goals. In one study of prognosis in pediatric oncology patients, children whose parents understood the seriousness of the clinical situation earlier in the process had better symptom control at end of life and greater access to quality-of-life services, such as hospice [41]. Although research on prognosis in children with cancer is limited, the existing data are helpful in certain situations. For example, the response rate for patients enrolled in phase II clinical trials is < 20%, and their progression-free survival is 12.9% at 2 years and 9.2% at 5 years [42]. Furthermore, the response rate in patients with advanced disease who receive phase I experimental drugs is < 7.9% [43]. Estimating prognosis accurately and then communicating this information empathically and compassionately to the patient and family is an advanced skill that requires sincerity and clinical sophistication. These discussions include the possibility of cure, of improvement or death, and the likelihood that the patient’s life may be shortened or prolonged with the use of certain care interventions. In addition, information about the likelihood of the interventions adding to patient suffering, comfort, or improved quality of life is a part of prognosis discussions. The clinician’s role also includes assessing the patient and family’s understanding of the information about prognosis, their hopes, and how they use the information conveyed to make decisions about care. Discussing goals of care A thoughtful discussion of prognostic information precedes establishing goals of care [44]. Figure 3 shows a useful model for guiding these often-difficult conversations. The primary goal of cure may be agreed on when the evidence suggests this as a realistic possibility or when a patient or family’s hopes for cure are high (ie, phase III clinical trial or its equivalent). Here most, if not all, patients, families, and clinicians work under the assumption that care includes the use of artificial LSMTs and other invasive procedures, because these interventions are considered necessary for cure. When cure is the primary goal, the psychological stance is “to conquer disease;” this stance will direct treatment decision making that will include invasive care interventions that can be associated with higher morbidity. At differing points during treatment, and for diverse reasons, patients and their family members may begin to experience a quiet, gradual realization that the once-primary goal of cure is no longer a realistic possibility. Instead, the goal may become life prolongation, and conversations at this stage may be guided toward questions of how this goal may be achieved, the quality of the life being prolonged, and the patient and family’s goals during the time remaining. The psychological stance at this stage is “to fight.” Patients and families are likely to consider treatments with mild to moderate toxicity that offer the possibility of tumor response, including temporary arrest of growth, while also focusing on symptom relief. Guided conversations about the benefits and burdens of each viable intervention includes the possible effectiveness of each as a life-prolonging measure, along with the potential positive or adverse affect on the patient and family’s suffering and quality of life. The outcome of these conversations is whether and which interventions can or should be withheld or initiated. These conversations tend to include discussions about resuscitation preferences, as well as whether or not to use LSMTs, with a careful consideration of the impact of each option on patient and family comfort and their quality-of-life goals. Understandably, clinicians have reported a desire to forsake such conversations for fear that patients and families will react with feelings of hopelessness or abandonment [45, 46]. These conversations about life prolongation are most effective when they convey respect for the hope for cure that most families will continue to experience regardless of the child’s present status [45, 46, 47]. Farther along in the disease process, significant suffering combined with an increasing awareness of the likelihood of death may steer the patient, family, and clinician to consider comfort as the primary goal in the child’s care. Patients and families gradually and unevenly begin to perceive a need to prevent further interventions that contribute to suffering and poor quality of life. Families will likely need the clinician’s support and ongoing reassurance that they do have an accurate grasp of their child’s clinical situation, with cure or life prolongation no longer the primary goal of care. The psychological stance as comfort becomes the primary goal is “to protect from suffering.” Guided conversations at this point in the illness trajectory may include more exploration of personal values (ie, faith, prayer) or complementary and alternative medicine [41]. The purposes of conversations regarding primary care goals are to facilitate communication about treatment decision making, to establish a common language around care issues and care priorities, and to solidify a trusting relationship between the family and clinicians. The goal of providing comfort is a constant care priority, but when cure is the primary goal, the potential benefit of an intervention such as SCT will override the risk of potential adverse side effects. The overlapping care priorities that constitute the clinical context of the SCT trajectory is depicted in the overlapping circles in Figure 3. Thoughtful consideration of an overreaching goal does not imply a simplistic view of a complex process, but rather aims to suggest a framework within which secondary goals may be reviewed and the intent of medical and supportive care interventions can be negotiated. The overlapping circles also represent the ongoing effort in SCT to reassess goals at regular intervals and during crises. Discussing treatment options One standard in medical ethics is shared treatment decision making involving the patient, family or designated surrogate, and clinicians [48]. The assumption is that these conversations will yield a medically and culturally appropriate, effective, and ethical plan of care that is in the best interest of the child and family. Participants in the treatment decision making process will consider the burdens and benefits of proposed medical interventions in light of existing clinical realities (prognosis) and of the patient and family’s values, beliefs, and preferences. Contrasting potential clinical care scenarios linked to each primary and secondary goal is a pragmatic strategy during these difficult conversations. When care options such as not escalating, withholding, or withdrawing treatment with curative intent are being discussed, supportive care alternatives need to be delineated. Families are less likely to fear discontinuation of certain therapies if they perceive that supportive care is readily available to help them achieve their personal goals [49]. Seasoned clinicians prepare themselves for these discussions because they know that these topics can challenge exhausted coping mechanisms relied on by patients and families. The clinician’s sensitivity, availability, and ability to respect the reactions from patients and family members to these discussions will help achieve a consensus when considering care options. Step 3: Plan Once the clinicians, Steve, and his family have arrived at a consensus approach to care through negotiation and based on their interpersonal relationships, a comprehensive care plan can be generated. The ICPC process guides the development of a care plan that takes into account their needs, values, and perceptions, as well as the medical care that would benefit Steve’s illness. Creating a comprehensive care plan: Integrating a medical plan and a life plan A total or comprehensive care plan integrates the medical plan, designed to address disease management alternatives, and the life plan, designed to address personal goals and values. The medical plan reflects decisions about disease treatment, such as whether or not to use LSMTs, administer transfusions, collect blood samples for anlaysis, or initiate intrusive procedures. The life plan addresses relational needs and personal goals, such as a plan to attend an important social event or embark on a family trip that may entail some health risks. Commonly, the life plan also addresses sibling and family needs. Easy access to the comprehensive care plan by members of the interdisciplinary care team facilitates implementation of the plan. Effective documentation of the plan using a decision making tool for pediatric palliative care patients and their families has been previously demonstrated [50]. A guide for documenting the ICPC process is included as an Appendix to this article. The weight given to each component plan of the comprehensive care plan will shift depending on decision point [51]. The medical plan, with its emphasis on disease, likely would be given more weight during the curative phase of therapy, whereas the life plan, with its emphasis on personal values, would prevail in cases of incurable illness. The concurrent use of both plans is a strategy for generating a comprehensive care plan. Maltoni et al. [52] have developed evidence-based clinical recommendations addressing how these needs can be extracted in conversation with adults with advanced cancer, but no such recommendations have been made for children. Individualized Care Coordination The individualized care coordination component of the ICPC model is a strategy for implementing the comprehensive care plan. As a medical home for children living with life-threatening illnesses, SCT programs provide family-centered comprehensive care [53]. Fragmentation in the care of patients undergoing SCT can result from barriers in communication and collaboration among the interdisciplinary team members, as well as between the tertiary care center and outside care settings. The ICPC model may be used as a quality improvement strategy in this setting to address such priority areas as end-of-life care, pain management, and care coordination [25]. Individualized care coordination can limit fragmentation by orchestrating the delivery of services while advocating for the goal-directed therapies and supportive care interventions established in the comprehensive care plan. The plan is designed for implementation across the multiple settings in which the child and family receive care. Having a designated team member assigned to ensure coordinated implementation of the care plan across settings is a particularly helpful approach. Responsibilities for this designated team member could include facilitating the child and family’s participation in the decision making process, participating in conflict resolution, and advocating for the child and family according to their preferences as documented in the medical and life plans [54]. Conclusion Formally incorporating individualized care planning into SCT program policies and procedures will facilitate treatment decision making in the care of patients with progressive disease after transplantation, and also provide care for patients who are likely to suffer from treatment-related morbidity and mortality [55]. Implementing and evaluating the ICPC model will help ensure patient- and family-centered care before, during, and after the difficult decision making regarding care and treatment inherent to SCT. Affected by the impact of disease theory in modern medicine, the success of bone marrow transplantation as a science may be measured in terms of increased cure rate or disease-free survival, limited toxicity, and decreased complications. We do not have the equal ability to measure the success of SCT in terms of its less tangible, more subjective aspects of care, such as the processes involved in attending to suffering, promoting healing, supporting the dying child and family, and effective decision making [56]. The ICPC model is likely to have a significant impact on these important care processes as well. Quality indicators that demonstrate the benefit of the ICPC model must be identified and evaluated. Acknowledgments This work was supported in part by Cancer Center support core grant P30 CA21765 and the American Lebanese Syrian Associated Charities. Appendix. Guidelines for documenting the ICPC Process Step 1: Relationship Understand the child and family’s unique illness experience •Listen to the illness experience from the child’s and family’s perspective. •Encourage the child and family to describe their perceptions of illness, sources of hope and suffering, and possible death and to express their end-of-life care preferences and expectations from health care professionals. •Identify the child and family’s fears and outline their coping mechanisms. •Note the child and family’s belief and value systems. •Use caring presence and empathy as tools to help facilitate the process. Share relevant information •Recognize the child and family’s need for information to guide the decision making process. •Identify the main decision maker(s) within the family unit. •Evaluate the child’s role in the decision making process. •Note specific information shared with the child and family. Needs assessment •Conduct a comprehensive assessment of the child and family’s needs. •Describe the needs according to the domains of the illness experience, including the structure and process of care, physical, emotional, social, spiritual, cultural, ethical and legal, educational and relational aspects of care, as well as the needs of imminently dying children and their families. •Use an interdisciplinary team approach. Step 2: Negotiation Prognoses •Establish specific prognoses as outlined in the literature and/or based on clinical experience. •Communicate the prognoses effectively to the child and/or family. •Describe and document estimates of prognosis for survival and/or death, comfort and/or suffering, and life expectancy and/or clinical improvement. •Note the specifics of who the information was given to: child, parent, and/or surrogate. •Assess the child and/or family’s understanding of the prognoses. •Note how information on prognosis is used in the decision making process. Goals •Consider an overreaching goal of care suitable to the child’s prognosis and the child’s and family’s personal illness experience. •Describe the child’s and family’s perceptions of an overreaching goal of care in the context of their personal realities and value system. •Outline secondary medical goals. •Outline personal and life goals. Treatment options •Create a case scenario most consistent with the child’s and family’s personal realities and value system to illustrate the treatment options. •Outline consensus about treatment options that may support the achievement of goals. Step 3: Plan Document a comprehensive care plan; document the plan for each domain •Disease management, for example, chemotherapy, radiotherapy, surgery, antibiotics, supportive care, artificial LSMTs, hospitalization, and emergency room visits. •Physical aspects of care, for example, pain control, symptom control, rehabilitation. •Psychological aspects of care, for example, emotional, grief, bereavement, anxiety, depression, maladaptive behavior. •Spiritual aspects of care, for example, hope, meaning, faith, religious practices. •Social aspects of care, for example, sibling and parent support, self care, financial support. •Cultural aspects of care: a specific plan based on cultural needs. •Care of imminently dying, for example, symptoms, coping, anticipatory guidelines, communication, grief, funeral arrangements. •Ethical and legal aspects of care, including ethics consult, risk management, staff education, inescapable suffering, and so on. Document whether the plan includes withholding or withdrawing specific treatment with curative intent. •Educational aspects of care, such as death and dying, anticipatory guidelines, home health, hospice, and other. •Relational aspects of care, such as the opportunities for expression of love, gratitude, forgiveness, and farewell. •Structure of care, such as utilization of resources, care coordination plans, and discharge planning. References 1. 1Apter A, Farbstein I, Yaniv I. Psychiatric aspects of pediatric cancer. Child Adolesc Psychiatr Clin N Am. 2003;12:473–492. Full Text |
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PII: S1083-8791(06)00772-5 doi:10.1016/j.bbmt.2006.11.013 © 2007 American Society for Blood and Marrow Transplantation. Published by Elsevier Inc. All rights reserved. | |
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