Ute Goerling (ed.)Recent Results in Cancer ResearchPsycho-Oncology201410.1007/978-3-642-40187-9_5
© Springer-Verlag Berlin Heidelberg 2014
The Oncological Patient in the Palliative Situation
(1)
University Center for Palliative Care, Inselspital Bern, Bern, Switzerland
(2)
Department of Oncology, University Hospital Basel, Bern, Switzerland
Abstract
Palliative care approaches the patient and his or her suffering with a biopsychosocial-spiritual model. Thus, it is the strength of palliative care to complement the diagnosis driven approach of medical cancer care by a problem and resources-based assessment, participatory care plan, and patient-directed interventions. Interventions need to reflect timely prognosis, target population (the patient, the family carer, the professional), and level of trust and remaining energy. In palliative care the relevance of psycho-oncological aspects in the care of the terminally ill is considerable in the understanding of the overall suffering of patients approaching death and their loved ones and in their care and support. There is little evidence to date in terms of clinical benefit of specific psycho-oncological interventions in the last months or weeks of life, but there is evidence on effects of stress reduction and reduced anxiety if locus of control can stay within the patient as long as possible. One major difficulty in psychosocial research at the end-of-life, however, is defining patient relevant outcomes.
A Patient’s Journey: Mrs. B
Mrs. B. is a 58 years formerly very active and athletic woman whose husband died some years ago from cardiac arrest. We, the palliative care inpatient consult team and the patient, met for the first time on a surgical ward where she was hospitalized for abdominal pain and vomiting both due to progressive cholangiocarcinoma. Unintendedly, she broke out into tears when telling about the recent months: after primary surgery she underwent chemotherapy, and despite experience of fatigue she felt pretty well, continued to play tennis, and meet with friends and family. She did not at all expect her cancer to grow during this treatment, and now she feels dramatically disappointed; not only that her cancer was growing again, but also that she misjudged her body’s condition. The sudden change in body condition and the new perspective lead to an overall weakness and break down. The former nurse saw herself for the first time in a new role as a patient, dependent on the help of others and most of all as being a burden for her daughter.
We discussed her preferences (“going home, no additional chemotherapy”), her worries (“becoming a burden for her daughter and the whole issues of dying”), her network at home (“nice home, living on my own, daughter with small children living closed by, son abroad for work”), and potential support needs for the future (“most important, providing psychological support for my daughter”). It was proposed to discuss the issues such as role changes in the family and the fear of being a burden and not being able to support others anymore, respectively, together with the psycho-oncologist.
After referral to the palliative care ward we organized a family conference including “skype-link” to her son. Abdominal pain and vomiting improved through medication, complementary therapy, and nutritional counseling. It was the patient herself who finally lead the family conference based on a structured problem-based prompt sheet (“SENS”-structure, i.e., discussion regarding Symptom management, End-of-life decisions based on individual preferences, Network-organization issues for the future care at home, and Support needs of family carers).
Mrs. B. returned home, stayed for several weeks managing symptoms by herself, with little support by her general practitioner, managing her household with external support twice a week, and—most important—meeting regularly with her daughter and grandchildren. Several sessions with the psycho-oncologist lead to open and honest discussions between mother and daughter about family roles, needs, fears, and finally to a better acceptance of role changes and support. The daughter herself wished for further psychotherapeutic support and was referred to a psychotherapist in private practice.
Three days before Mrs. B. died she returned to our palliative care ward accompanied by her entire family, asking for professional help for these last days, recognizing that no energy was left to survive any longer. She was greatly satisfied to have the opportunity to spend valuable time together with her family, experiencing security through the “net” around her and “the final growth, the completion of her life’s symphony” even if the end was far too early.
1 Introduction
“Palliative care” or “palliative situation” is still poorly defined and the concept remains vague. Ellen Fox wrote in 1997 a remarkable editorial in the JAMA highlighting the “predominance of the curative model of medical care,” as a “residual problem” (Fox 1997). Mrs. B’s last weeks could have been easily filled with several medical interventions, which would have resulted in spending most of her remaining lifetime in the hospital. She was in a “palliative situation” and chose the model of care provided by palliative care. Fox continued: “…on a basic level, the curative model conflicts with the notion of a good death.” There is a certain danger to omit individual values and goals and the “tendency to perceive patients in terms of their component parts.”
Thus, it is the strength of palliative care to complement the diagnosis driven approach of medical cancer care by a problem-based assessment, participatory care plan, and patient-directed interventions. Consequently, palliative care approaches the patient and his or her suffering with a biopsychosocial-spiritual model. It is the aim of palliative care to give back as much self-control as possible to the patient and to provide support wherever and whoever is needed. The target of such care is less a cell or an organ, but the patient and her or his carers—or by words of Dame Cicely Saunders—the unit of care. Collaboration within the palliative care team and among professionals with different backgrounds is a frequent term when discussing and planning patient care. In palliative care the relevance of psycho-oncological aspects is considerable in the understanding of the overall suffering of patients approaching death and their loved ones and in their care and support. Psycho-oncology and palliative care share the view of seeing the patient as a whole and the suffering not only as a medical problem. Both include in their definitions the psychosocial aspects of somatic illness. Both regard the nonmedical aspects as essential part of suffering. Psycho-oncology and palliative care are both frequently involved in the care of patients with advanced cancer, but there is little evidence about “dosage,” best time for involvement and process of interaction of these two fields.
There is a substantial overlap of the two definitions of psycho-oncology and palliative care, a fact that explains potential conflicts but which also how they complement each other in daily clinical care. There may be side effects of palliative care and psycho-oncology that need to be recognized early if used alone or in combination. One is adding distress to the patient and family by an overdose of support and/or insufficient coordination of care. Another is to disregard the patient’s own resources even in a clinical situation of weakness and frailty, and to focus—as we do in medicine in general—on deficits rather than strengths and resources. In addition, it is of highest importance to distinguish three levels of interaction and reflection: The patient, the patient’s surrounding or family, and finally the professional team.
In 2003, Breitbart edited for the first time the journal “Palliative & Supportive Care,” “the first international journal of palliative medicine that focuses on the psychiatric, psychosocial, spiritual, existential, ethical, philosophical, and humanities aspects of palliative care” (Breitbart 2003). In a personal reflection Breitbart (2006) challenges one of the most significant values in palliative care and in psycho-oncology: time. Time is of the essence—for reflection, creating trust, and a relationship, doing “unfinished business,” coping, communicating, but also for setting priorities: how would I like to spend my remaining lifetime, with whom and where?
This chapter will discuss and highlight recent advances in palliative care with particular focus on psycho-oncological aspects. The authors attempt to focus on data derived from specific studies in a “palliative care” population (which is still difficult to define!): from assessment to interventions having in mind a common “credo”: professionalism in palliative care and psycho-oncology relies on the capability to continuously evaluate if treatment and care allow and give back a certain sense of control to the patient and family, of coherence, as Antonovsky defined, even in a “palliative situation”—and provides space and time for essential issues at the end-of-life.
2 Assessment
2.1 When
Possibly THE major issue in palliative care is late referral. In psycho-oncology and palliative care access to this kind of support and care is still lacking clearly defined “red flags,” thus the recognition of needs remains unsystematic.
Today, recognition or “diagnosis” of important psychosocial and spiritual distress and palliative care needs in patients with advanced cancer has been highlighted in several guidelines, e.g., (Network 2003). In clinical practice, however, staffing, scientific recognition, routine screening, and financial reimbursement still pose significant barriers for early integration of palliative care in standard oncology care.
There is growing evidence that early integration of palliative care—several months prior to death—not only reduces distress and improves quality of life, but also decreases health care utilization and lastly costs (Temel et al. 2010, 2011; Zhang et al. 2009). Evidence seems to be sufficient for the American Society for Clinical Oncology (ASCO) to recommend early palliative care as best practice in some cancer diagnoses (Smith et al. 2012).
Late referral to psycho-oncological services too is a major issue in cancer care. Psychological disorders like adjustment disorders, anxiety disorders, or depression, only represent a portion of the reasons why cancer patients and their family members should be offered psycho-oncological care. The more general term, distress, is more appropriate for describing the psychosocial difficulties—whether they fulfill the criteria for a psychiatric disorder or not—experienced by many patients and their family members. Estimates are high regarding the number of patients and family members who do not fulfill the formal criteria for a psychological disorder according to the ICD or DSM but they do suffer from clinically relevant psychosocial distress (Bultz and Carlson 2005; Herschbach and Heusser 2008; Holland 2006).
International guidelines also reflect the urgency to quickly and efficiently identify (according to a predefined cut-off) individuals who may require more intense diagnostic and potentially psycho-oncological care (Holland et al. 2007). The standards for care of patients exhibiting psychosocial distress described by the NCCN are of particular importance in this area (National Comprehensive Cancer Network 2003).
Early diagnosis and referral of patients for psychosocial support are especially important with respect to psycho-oncological care, because comorbid psychiatric and psychosocial symptoms not only complicate treatment, but also negatively impact the quality of life of patients and their family members, adversely affect compliance, and lead to poorer medical treatment results (Colleoni et al. 2000; Faller et al. 1999; Ganz 2008; Parker et al. 2003).
2.2 What
Assessing and documenting complexity are one of the big challenges in palliative and end-of-life care. This is also true for the organization of tasks and responsibilities in an inter-professional care team, but also for financial/reimbursement issues. Comprehensive cancer care is one of the attempts to organize such tasks and responsibilities through a shared care model. One of the challenges in highly complex situations as we encounter them in palliative care can be seen in the fact that medical diagnoses alone may not reflect sufficiently individual problems and suffering.
The MASCC Psychosocial Study Group recently published a conclusive paper on main psychosocial concerns and needs of cancer patients and families throughout all phases of the disease (Surbone et al. 2010). In this document we find a call for action in terms of systematic assessment, training and even a “new paradigm of supportive care that addresses psychosocial issues from diagnosis through treatment and post-treatment phases, up to end-of-life or long-term survivorship,…”
Thus, multidimensional assessment of problems or stressors is regarded as highly relevant in palliative care. For the purpose of providing a problem-based assessment system in palliative care, with symptom assessment as only one part of it, the “SENS”-system has been developed (Eychmuller 2012). Adding the problem-based SENS system as a parallel system to medical diagnosis in clinical practice has provided guidance for planning, prevention, concrete care, and coordination of care not only for the patient but also for the family system around him/her. Expectations and hope can be redirected toward actual goals and daily activities instead of medical procedures with sometimes questionable or unclear outcomes.
Other multidimensional or rather multiple-symptom-assessment systems in palliative care are commonly used in clinical practice but all rely on the patient’s cognitive function which can alter dramatically even within days or hours. Based on NCCN Clinical Practice Guidelines for Supportive Care, the Edmonton Symptom Assessment System (ESAS) or single item tools for various symptoms (Butt et al. 2008) can be used. As for other tools a score of 4 or more on such screening instruments signifies at least moderately severe symptoms. Most studies on multi-symptom assessment tools are developed and tested mainly in ambulatory patient populations except ESAS.
It is for this reason that assessment in palliative care must be tailored to the patient’s situation. Burden and length of the assessment must be minimized and the type of assessment must be related to concrete implications. This means that assessment instruments should have a screening tool character and serve as a foundation to support or enable further communication not necessarily linked directly to the patient but to family and team about the components of despair and possible resources of support. Going back to our patient example, Mrs. B., her distress at the beginning of the contact with the palliative care professionals was the loss of control and her fear to burden her daughter. Her distress did not correspond to symptoms of depression or anxiety nor was it the pain only which made her suffer most. A sensitive and focused dialog only could reveal needs and potential sources of support.
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