Palliative care stems from the recognition of the potential at the end of life for discovering and for giving, a recognition that an important dimension of being human is the lasting dignity and growth that can continue through weakness and loss (Saunders 2006).
KeywordsPalliative Medicine Palliative Care Supportive Care Early integration Final phase
To care for incurably affected patients with advanced progressive disease, beyond causative (i.e., curative or at least life-prolonging) therapy, had been neglected in modern medicine until the 1960s and 1970s, when Dame Cicely Saunders and colleagues especially from UK, USA, Canada, and other countries investigated the needs of severely diseased patients and made the required expertise and supportive structures explicit. Since then, hospice care evolved as a global civil movement, and palliative medicine (or “palliative care,” with respect to its multi-professional self-conception) developed as both an independent general medical approach, and even as a specialist field and expertise in medicine.
No matter whether “palliative care” is understood as a general attitude/approach or as a specialist expertise, it refers to a concept that aims to improve or at least preserve the best possible quality of life for patients with burdensome disease, in order to keep related actual or possible complex symptoms and needs endurable, − endurable for patients, relatives, and carers. Symptom control, expertise in nursing and wound care, supportive care of oncological side effects, physiotherapy, psychological support or psychotherapeutic interventions, ethical expertise, good communication, advance care planning, spiritual care, social services (for instance, looking after financial problems or technical aids), may all be necessary and integral parts of this concept.
Involvement of several medical disciplines, like medical oncology, radiation oncology, family practice / general practice, palliative medicine, general / specialist surgery, nuclear medicine, and many more (interdisciplinarity)
Involvement of several professions, like nurses, physicians, social care workers, psychologists, physiotherapists, pharmacists, hospice volunteers, spiritual care workers, and many more (multiprofessionality)
Specialized palliative care structures that act in hospitals, nursing homes, and at home
A 24/7 access to telephone and bed-side support, also at home (including home visits)
An early approach and integration of this concept, in order to act before symptoms, needs, and crises develop, i.e., long before the dying phase begins
Despite its overall successful “attitude change” and structural implementation during the last three decades, the term “palliative” often leads to negative assumptions and connotations especially in the general society and may be understood in different ways by the patient, his/her relatives, doctors, nurses, and other health care professionals. Also, other commonly used and prognostically highly relevant terms such as “curative” or “supportive” bear numerous opportunities for severe misunderstanding. Therefore, it is worthwhile to have a closer look at these terms and their definitions before coming back to their practical implications.
Confusion About Definitions
What Is “Palliative”?
The World Health Organization (WHO) has initially defined palliative care as “the active total care of patients whose disease is not responsive to curative treatment” (WHO 1990). Despite its useful description of the conceptual contents that palliative care should deliver, it was not defined what “curative” treatment meant in this context – for instance, treatment interventions that are aimed at the complete, sustained absence of the disease (“cure”) or causative treatment interventions that aim to reduce disease manifestations, i.e., any cancer-specific therapies. If the latter understanding of “curative” would have been meant, palliative care would then have to be understood as a concept applicable to patients only if their causative therapies have been completely exhausted – this means, extremely late in the course of the disease. In 2002, the WHO definition was revised: “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness,…” (WHO 2002). Obviously, the attempt was to overcome the (mis)understanding that palliative care was applicable only to patients in the very last days of their life. On the other hand, the term “life-threatening illness” can be interpreted to comprise any severe illness, regardless whether there is a context of incurability or not (Sepulveda et al. 2002). The European Association for Palliative Care (EAPC) used even both interpretations in one and the same paper (Caraceni 2011): “Palliative care is the active, total care of the patient whose disease is not responsive to curative treatment.” … “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness….” The EAPC even continues: “Palliative care is appropriate for any patient and/or family living with, or at risk of developing, a life-threatening illness due to any diagnosis, with any prognosis, …” and “Some aspects of palliative care may also be applicable to patients at risk of developing an illness and their families.” This extremely broad understanding of what palliative care should potentially comprise, and the obvious contradictions in the above-named statements, impedes proper and unambiguous communication, no matter whether “not responsive to curative treatment” is understood here as a situation where all disease-directed treatment is exhausted, or when cure is no longer an option.
What Is Curative?
So, the understanding of the word “curative” has in turn enormous implications on the understanding of the term “palliative” and on the conception of palliative care services. An ASCO position paper (Smith et al. 2012) on palliative care in oncology might increase the confusion even further: “Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.” If “curative treatment” was understood here as any disease-directed (anti-cancer) treatment, it is certainly helpful that it has been clarified that (palliative) anti-cancer therapy is no contradiction to the implementation of palliative care. If “curative treatment” was meant as a treatment intended to cure the disease completely, then palliative care consequently would be applicable also in early, curable stages of cancer disease and in the adjuvant setting. The specific therapeutic (and ethical) circumstances of incurability would then fall away, and a broad overlap to (oncological) supportive care concepts would result (see below).
We therefore performed a survey, addressing international authors involved in palliative care definitions and guidelines in the context of oncology and asking for their understanding of “curative,” and demonstrated that there is no common understanding of “curative treatments” (as a semantic basis for their understanding of palliative care), especially when it came to differentiate between “curative” and “disease-modifying” therapies (Gaertner et al. 2014).
What Is “Cure”?
From an oncology perspective, the confusion about terms like palliative and curative treatments is even more increasing, as often enough, it is unclear whether there can be a realistic hope for cure (in a sense of absence of disease for the rest of life). How many years of disease free survival (DFS) are demanded in order to define a realistic hope for being “cured”? Patients suffering from locally advanced head and neck cancer or locally advanced non-small cell lung cancer may be offered multimodal aggressive therapies in order to cure the disease, although the overall prognosis of these patients remains dismal (for instance, a 36% 5-year survival rate in stage IIIA NSCLC patients (Goldstraw et al. 2016)). How bad must a prognosis be to a priori refrain from aggressive multimodal therapy and to pursue QoL-adjusted (palliative) systemic therapy instead?
This discussion is fuelled by new multimodal concepts for “oligometastasized” patients – patients demonstrating only few, resectable metastases where a survival benefit can be expected by aggressive multimodal therapy, as opposed to palliative systemic therapy (Ashworth et al. 2013). But the practice to denote this multimodal concept as “curative,” in an attempt to cure the patient completely, has to be questioned, though, with regard to the present, still dismal overall survival data, demanding for a realistic understanding of the term “cure.”
From a palliative care perspective, it would be highly problematic if palliative care would be restricted to those situations where all “curative” (i.e., disease-directed) treatment would have been exhausted.
What Is “Supportive”?
Also, the term “supportive” is being used in several implications. Often, the term supportive therapy is reserved to all interventions used to relieve side effects of medical treatment and of complications of the disease. The term “supportive care” might be interpreted even broader, including the contributions of social services or psychotherapy (psycho-oncology in the context of cancer). Jean Klastersky has recently outlined an even more comprehensive “umbrella” understanding of supportive care and has outlined the emerging confusion with the concept of early palliative care (Ashworth et al. 2013; Klastersky 2016). Interestingly, there is also a definition overlap in the WHO definition that describes palliative care as a “support system” (WHO 2002).
The term “best supportive care” (BSC), though, is derived from clinical studies, and refers to a concept that is “neither well-defined nor standardized” (Zafar et al. 2008). Van Cutsem et al. defined BSC as “the best palliative care per investigator excluding antineoplastic agents,” to make confusion in terminology even greater (Van Cutsem et al. 2007). In a clinical trials scenario, the clarification of what BSC constitutes is of utmost importance also from methodological reasons, as previous years have provided enough evidence confirming the clinical and prognostic implications of structured, early-onset palliative care approach, thereby confounding study results within an undefined BSC arm. Nevertheless, in clinical day to day work, the term “best supportive care” is quite often used and requires immanent clarification in order to avoid further communication problems.
If “supportive care” includes the treatment of the complications of the disease, there is an immanent overlap to the concept of palliative care, where pain and other symptoms and needs are understood as sequelae and complications of the disease (whereas treating complications of the disease also belongs to the self-conception of supportive care). This overlap becomes increasingly more relevant, as disease-directed therapies in all fields of medicine expand into the very late stages of the disease, due to the wealth of new therapeutic substances, and as palliative care intends to address patients earlier during the course of the disease, sometimes as early as from the time of diagnosis of an incurable disease.
Therefore, the overlap between the terms “palliative” and “supportive” is multifaceted. Pragmatically and consequently, the MD Anderson Cancer Center in Houston, Texas, performed a departmental name change from palliative to supportive care, in order to successfully implement palliative care earlier during the course of disease (Dalal et al. 2011). Also in Germany, the first supportive care unit has opened in Berlin (http://www.havelhoehe.de).
In sum, these quite theoretical considerations may illustrate the confusion on definitions in oncology, palliative, and end of life care and its numerous opportunities for mislead and failed communication. Numerous guidelines, definitions, or position papers have not substantially contributed to clarification. Although it would highly desirable to have clearly defined terms, for instance, with respect to departmental or structural offers, quality management, the reimbursement of efforts, or the quality of clinical studies, the most important aspect in patient care should not be lost out of sight: to thoroughly assess the patient’s and the family’s symptoms and needs, and to offer any comprehensive, therapeutic, and supportive help the patient and the family requires – no matter how we name this kind of help and the according therapeutic institutions.
Early Palliative Care and Palliative Anticancer Therapy
Preserving best possible quality of life
Keeping an eye on relatives and psychosocial needs
Realization of patient’s wishes for end of life care
Avoiding mis- and overtreatment and costs (The observed life-prolonging effect of early palliative care as described by J. Temel et al. (2010) has not been reproduced so far.)
Routine outpatient counseling for all incurably affected patients that have been identified as having a burdensome and complicative course of their disease (that may be, for instance, all stage IV NSCLC patients, or all glioblastoma patients at first relapse, or all head and neck cancer patients without surgical options). This counseling may comprise: establishing rapport to palliative care services, a symptoms and needs check, a psychosocial assessment including family resources, aspects of “advance care planning,” agreements on what to do in critical situations and crises, handing out the 24/7 telephone number, and many more aspects.
Routine structured screening and assessment of symptoms and needs
Participation of palliative care physicians at interdisciplinary tumor boards
Low threshold access to palliative care consultation (or liaison) services
A “double awareness” communication (“hoping for the best, but preparing for the worst”), especially in prognostically equivocal situations.
Also, anticancer therapies may well support the therapeutic aims in palliative care: the analgesic properties of palliative radiation therapy are described elsewhere in this book. But also the analgesic effects of radioisotope application in patients with bone metastases are well assessed, and surgical procedures may be indicated primarily in order to relieve suffering. Surprisingly, symptom relief by chemotherapy and other systemic anticancer treatment is rarely the focus in literature and in clinical studies, though, even when they are applied in “palliative” intent (Alt-Epping et al. 2012, 2018).
The Dying Phase
To care for a dying patient is not only one of the main tasks in specialized palliative care, but should be an integral mandate for all medical services and institutions that care for cancer patients. Therefore, all professional team members in non-palliative-care institutions (like in radiation oncology) should be aware of the specific needs and demands of patients (and their families) who are within their last hours or few days of their life, irrespective of existing palliative care (PC) services that work as MDTs in- and outside the hospital setting.
Categories of changes indicating the dying process (Domeisen Benedetti et al. 2012)
Consciousness / cognition
Intake of fluid, food, others
Non-observations / expressed opinions / other
Nevertheless, dying remains a dynamic process with changes in diagnostic appraisal and corresponding needs, and bears challenges with respect to physical, psychosocial, and/or spiritual demands of the patient and his / her family. Therefore, diagnosing dying should be preceded by a multidisciplinary team discussion, in order to align the clinical perceptions of different professions (Kennedy et al. 2014).
The perspective of dying in the course of an incurable cancer disease urges comprehensive communication with the patient and his / her relatives, addressing different clinical scenarios and issues of advance care planning (ACP) early in the course of the disease, in order to prevent unwanted readmissions, cardio-pulmonary resuscitation, or other interventions. For this, advance directives, power of attorney, ACP forms, or other DNR forms might be helpful tools, facilitating early communication about end-of-life decisions and clinical decision-making in emergency situations.
Place of Death
The majority of patients want to die at home, but this preference ranges in studies from 31% to 87% (Gomes et al. 2013). Relatives that are able to take over nursing activities contribute substantially to realize this preference to die at home successfully. Therefore, counseling, support, reassurance, and encouragement of relatives should be a major component of psychosocial care for patients and their families (Leitlinienprogramm Onkologie 2015). Also, ACP should contribute to realize these patient preferences (Wright et al. 2008; Zhang et al. 2009; Mack et al. 2010a, b, 2012).
Patient preferences might change in about 20% of patients during the course of the disease (Gomes et al. 2013). Nevertheless, 60–80% of all patients will die in institutions like hospitals, nursing homes, residence homes, and hospices.
Treatment and Prevention of Symptoms
When dying occurs, moist breathing (“death rattle”) and confusion belongs to the most relevant symptoms (Nauck 2001). In delirious states, haloperidol is recommended (Perrar et al. 2013). Death rattle is quite disturbing for the relatives (and the team), although in most instances it may be assumed that the comatose patient will not experience suffering by moist breathing. Positioning techniques and the administration of anticholinergics may help, but efforts to suck tracheal secretions mostly remain unsuccessful and incriminatory (Leitlinienprogramm Onkologie 2015). These likely symptoms should be anticipated and communicated as soon as dying is impending.
Fatigue, pain, dyspnoea, fear, and social isolation are further characteristics, also in patients dying from non-cancer disease (Pantilat and Steinle 2004; Small et al. 2009; Kim 2006; Stewart 2001; Nordgren and Sörensen 2003).
All diagnostic, therapeutic, and nursing interventions that do not contribute to the aim of preserving best quality of life should not be initiated or discontinued, respectively (Leitlinienprogramm Onkologie 2015). This also includes the timely deactivation of ICDs, as unwanted ICD shocks denote profound suffering for the patient and all bystanders. In such situations, a magnet should be applied immediately (Carlsson et al. 2012; Fromme et al. 2011; Padeletti et al. 2010; Waltenberger et al. 2017). Also, during the dying phase, artificial nutrition and hydration should be stopped: fluid administration is not superior to placebo in avoiding symptoms of dehydration (Bruera et al. 2013).
To die remains the expected outcome for about half of our cancer patients (https://www.who.int/ncds/management/en/; www.gekid.de). Defining therapeutic aims, communication, a needs-oriented approach and care planning should implicate this overall prognosis. All members of the therapeutic team should gain expertise and attitude in caring for dying patients, no matter whether specialized PC is available or not. Clinical guidelines and management programs might be helpful guidances for all specialized and nonspecialized institutions that care for incurably affected and dying patients.
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