Dtsch Arztebl Int. 2021 Apr; 118(17): 303–312. Continuing Medical Education Communication Strategies, Counseling, and Administrative Aspects Managing the last phase of life properly, i.e., taking care that a patient’s wishes are respected at the end of life
and beyond, is very important and can relieve the patient and his or her family of unnecessary burdens. This review is based on guidelines, reviews, meta-analyses, selected publications, and the authors’ own experiences from everyday clinical practice. Most patients want frank information from their physicians about their condition at all times over the course of
their treatment, from the moment of diagnosis to the end of their life. This has no lasting adverse effects, but rather enables patients to take decisions that are appropriate to their stage of disease. Early integration in palliative care can improve patients’ quality of life, symptom control, and mood. In helping to manage the last phase of life, the physician often serves as a provider of impulses, or else determines which other types of professional should counsel or support the patient.
Patients should be enabled to issue directives that reflect their wishes, as well as to choose representatives who are allowed to speak for them. Consideration should also be given to the patient’s emotional legacy, e.g., letters or video messages with personal content. In the care of patients with life-limiting diseases, more attention should be paid to the management of the last phase of life. Palliative-care physicians can
take over this task from other medical disciplines, and early integration in palliative care is recommended. In principle, it is always an important matter to make provisions for one’s own death, to consider the various questions associated with it, and to put one’s thoughts in writing. Death is not always brought on by a progressive illness that gives the sufferer the time to deal with the subject thoroughly. The physician’s task
of counseling patients about death becomes especially important in the case of a progressive illness or one that is already in an advanced stage. In such situations, the physician is often the patient’s main interlocutor, whose professional role establishes a relationship of trust. The physician’s task of counseling patients about final matters becomes especially important in the case of a
progressive illness or one that is already in an advanced stage. This article provides an overview of the final matters that must be considered in the last phase of an adult patient’s life. These final matters include everything that ensures the patient’s wishes will be respected up to the moment of death and beyond it, as well as everything that can support the patient’s family as they deal with their loss. The topic will be covered broadly here, and therefore, inevitably,
some individual aspects cannot be discussed in great depth. Final matters include everything that ensures the patient’s wishes will be respected up to the moment of death and beyond it, as well as everything that can support the patient’s family as they deal with their loss. This article should enable the reader to: understand the effect of candid information (once the patient has agreed to receiving it) and the fact that it does not harm the patient or the family as long as it is delivered appropriately. have an overview of the instructions the patient should communicate and the provisions that he or she should make. understand that the early integration of palliative care improves patients’ quality of life and does not shorten their life. Prerequisites for settling final mattersOpen communicationMost patients want to be informed openly about their diagnosis and prognosis. The consequences of open communicationFor most patients, open communication has no negative consequences; the withholding of information can sometimes do more harm. For many patients, receiving open and honest information from their physicians about their diagnosis and prognosis is a prerequisite for settling matters relating to the end of their lives. The question of truth at the bedside, i.e., whether physicians should be honest with their patients or not, has been discussed and debated in medicine for many years (1). Frank and open patient information was long considered harmful (2). There is now, however, a global trend toward more openness and honesty in discussions between physicians and their patients (2), partly because of the altered role of the patient. Respect for patient autonomy and the need to obtain the patient’s informed consent for all medical measures imply the need for comprehensive information from the physician (e1). Review articles on openness and truthfulness about medical diagnoses and prognoses have shown that the vast majority of patients with cancer and other life-limiting illnesses, along with their families, want to be informed truthfully and comprehensively. There is no evidence that openness causes any long-term harm; rather, positive effects have actually been shown (Table 1, [7, e2]). The withholding of true information sometimes causes serious problems for patients and their families, including anxiety and confusion (8). Patients want more openness even in countries and cultures where comprehensive information is not the norm (9). All patients should be asked about their preferences, as there is also a small group of patients who will cope better with not knowing (10). When assessing the patient’s wishes in this regard, the physician should pay attention not only to the patient’s verbal replies, but also to all other signals, to be sure that the desire for open information is not being expressed merely to conform with supposed social expectations, while the patient is in fact emotionally ill-equipped to deal with it. The physician can usually correctly gauge the patient’s readiness to receive candid information from his or her personality, nonverbal signals, and emotional responses to partial information, as well as from replies to the physician’s questions over the course of the discussion. Table 1Review articles on preferences about truth at the bedside
Today, the question is hardly ever whether to tell the patient the truth; rather, the question is how (11). Yet the truth is still not told in many cases, for various reasons. Many physicians fear inducing or worsening depressive symptoms, destroying hope, shortening the patient’s life by initiating palliative-care measures, or saying something that will turn out to be factually wrong because the prognosis is uncertain. All of these fears have been shown to be ungrounded (12). Discussions about diagnosis and prognosis, or about death and dying, still require high communicative competence from the physician (e3). As medical education has largely ignored the development of communicative skills to date, some physicians feel poorly prepared for such discussions and try to avoid them (13). One way to help physicians become more competent in breaking bad news is to use communication models such as the SPIKES model (table 2); further communication tips are summarized in Table 3. The time factor is another important consideration. The physicians treating the underlying illness often lack the time to interrupt their clinical routine to talk with the patient, even though good communication, in the overall context of treatment, actually tends to save time and prevent misunderstandings. The early integration of palliative care can also be helpful. Palliative care specialists lighten the treating physicians’ task by bringing their communicative skills, time resources, and complementary substantive competence into the process. Table 2The SPIKES model (13, e4)
Table 3Communication tips (from 3, 5, 7, 14, 15, e5– e7)
Training communication skillsOne way to help physicians become more competent in breaking bad news is to use communication models such as the SPIKES model. For many years, palliative medicine simply meant the care of dying patients in the last days of their lives. Increasing efforts are now being made to offer patients palliative care as early as possible in the course of a life-limiting illness, e.g., within two months of the diagnosis of metastatic disease, according to the German AWMF-S3 guideline for lung cancer (14, 16). Palliative medicine can complement the treatment of the underlying illness by the primary medical discipline, or it can be the sole therapeutic approach, depending on the stage of disease. Studies have shown that patients receiving palliative care along with care from a primary medical discipline have a better quality of life and a lower risk of developing depressive symptoms; they also use fewer health-care resources, giving rise to lower expenses overall (18). Moreover, some studies have shown that patients receiving palliative care tend to live longer, even several months longer (table 4). Palliative medical consultation and care give patients an early opportunity to consider “plan B”: what should be done if the treatment stops being effective? Patients can deal with such stress-inducing questions much more easily when they are still in relatively good condition and can think of palliative care as an option that might be needed much later on. For the settling of final matters, palliative medicine offers a multiprofessional team giving patients and their families help with their physical, emotional, social, and spiritual needs. The team includes doctors, nurses, and professionals from the psychosocial field, e.g., psychologists, social workers, and creative therapists (music therapy, art therapy) (14). Table 4Early integration of palliative care; data from a Cochrane analysis (17)*1, a systematic review and meta-analysis (18), and a recent study involving more than 20 000 patients (19)*1
Early integration of palliative careThe early integration of palliative care can lead to better symptom control, lessen depression, and improve the quality of life. There is no evidence that it shortens patients’ lives. Final matters—what is important?Physicians should sensitize, motivate, and empathically support patients in establishing their preferences for treatment in various hypothetical clinical situations, and in documenting these preferences in case they become unable to communicate them personally (14). Discussions between the physician and the patient can be supplemented by written information; the involvement of other persons with authorized custodial responsibility is recommended (14). eTable 1 contains an overview of the appropriate documentation. eTable 1Overview of important documents
Thinking about “plan B”Palliative care gives patients an early opportunity to consider “plan B”: what should be done if the treatment stops being effective? Patients can deal with such stress-inducing questions more easily when they are still in relatively good condition. Studies have shown that most patients want to discuss end-of-life matters (27, e13). If a patient does not actively request such a discussion, this should not be interpreted as a decision not to deal with the issue; rather, the physician should actively and empathically ask about the patient’s needs in this respect, early on in the course of disease, and repeatedly if necessary (14). By doing so, the physician can ensure that the patient sets appropriate goals and maximizes the chance of dying in the way that he or she would want (e13). On the other hand, the physician must also be prepared to accept that the patient cannot (yet) face the (whole) truth, reacting, for example, with denial (14). The patient must not be put under pressure (5). Well-informed patients make different decisions from incompletely informed patients. Patients who estimate their remaining lifespan too optimistically tend to request aggressive, invasive, and medically futile treatments rather than what palliative care has to offer (28). Up to 38% of patients receive treatments at the end of their lives with little or no expected effect (29). This is due, among other things, to physicians’ fear of informing patients fully. Physicians must keep the principle of doing no harm in mind (worsening the patient’s quality of life and, in some situations, unintentionally shortening the patient’s life by overtreatment at the end of life without any medical indication). A further major factor is that both physicians and patients very often estimate the remaining lifespan much too optimistically (table 5). The use of standardized prognostic instruments (e.g., the Palliative Performance Scale [a modification of the Karnofsky Index], 32) can improve assessment of the prognosis (33). Table 5Publications on Evaluation of the Quality of Life
COPD, chronic obstructive pulmonary disease The burden on the patient’s family is lightened by knowing what the patient wants to be done in case he or she can no longer communicate. Aside from an advance directive on medical treatment, certain elementary practical matters can be addressed as well: does the patient want uninterrupted company, or periods of rest in between? To be touched, or not? To hear music in the hospital room, or not? Who should be told of the situation, and who should not be told? Certain matters relating to the patient’s last days should also be discussed with the patient and the family and are best documented in writing: How does the patient wish to be cared for? At home, on a palliative care ward, in an inpatient hospice? Most people want to die at home (34), but this is not always possible (overburdening, fears, or work commitments of the family). If care cannot be provided at home during the last days, it is important to discuss an appropriate “plan B.” Ineffective treatment at the end of lifeUp to 38% of patients receive treatments at the end of their lives with little or no expected effect (29). This is due, among other things, to physicians’ fear of informing patients fully. In principle, the more information the patient has made available in advance and the more he or she has communicated his wishes on various matter, the lighter the burden on the patient’s family. Even a statement from the patient that certain things are of no importance can afford the family great relief. Many family members are deeply troubled, for example, by the need to plan the funeral according to the patient’s wishes without knowing what these are. This can lead, in the worst case, to guilt feelings that promote emotional complications in the grieving process. PrognosticationThe use of standardized prognostic instruments (e.g., the Palliative Performance Scale [a modification of the Karnofsky Index], 32) can improve assessment of the prognosis. Spiritual topicsPatients’ desire to talk with a physicianMost people want to discuss matters relating to the end of life with their physician. Another responsibility of the physician is to know and take consideration of the patient’s spiritual convictions (14), ensuring, for example, that religious practices of personal importance can still be carried out (e16), as spiritual well-being averts despair at the end of life (e17). This can be accomplished in a simple discussion or with a more sophisticated instrument, such as the semistructured interview known as SPIR (e18):
Last will and testamentThe physician’s steering rolePhysicians should empathically motivate patients to deal with the settling of final matters, playing an advisory and steering role. The involvement of other persons with authorized custodial responsibility is recommended. The writing of a will is another final matter that must be settled properly. A survey in Germany revealed that just under 74% of the persons surveyed aged 18 and older had not written a will or made any agreement as to succession (35). This situation often leads to disputes, to unfair distribution of property, and to loss of property (36). Of course, encouraging a patient to write a will is not the physician’s special responsibility; nonetheless, the physician can provide an important impulse by bringing this sensitive matter to the patient’s attention. Spiritual convictionsAnother responsibility of the physician is to know and take consideration of the patient’s spiritual convictions, ensuring, for example, that religious practices of personal importance can still be carried out, as spiritual well-being averts despair at the end of life. Writing a will is often a reasonable thing to do (ebox 2). In principle, a will must be in the individual’s own handwriting and should bear his or her name, date of birth, location, date, and signature on every page. If the patient is no longer able to write a will out by hand, the help of a notary must be obtained (e19). A will can be deposited with the local district court for a small fee so that it cannot be lost. eBOX 2Will and inheritance checklists (modified from [e19])A will should be written if any of the following questions are answered in the affirmative.
Checklist: inheritance (modified from [e8])
Especially when minor children are affected, it is very important to settle certain matters in advance. For example, a single parent with sole custody who is suffering from a life-limiting illness can try to establish, by means of a testamentary provision, what person will be responsible for the care of the child (or children) after his or her own death. In such situations, it is important to state a valid reason why, for example, the other currently non-custodial parent is not suitable for taking over custody. It is useful for the person who is to take over custody to sign the provision as well. In the best case, the matter will be considered before the parent’s death by the youth welfare office, which can provide help even at this stage. In these and similar situations, competent professional advice is always desirable. Digital legacyMore and more aspects of everyday life are now to be found in the digital world. According to a law that has been in effect in Germany since 2018, the heirs also inherit the deceased person’s digital property. All online content becomes accessible to them after the individual’s death, just as analog documents do (37). For a Facebook-account, for example, several possibilities exist: it can be canceled (if the access data are not available after death, only immediate relatives equipped with a certificate of inheritance can do this), or it can be maintained further, e.g., as a memorial website. A dead person’s digital trace can also be altered in complex ways (e.g., advertising data for a law office can be deleted, while a person’s scientific data can be retained) (37). One can make provisions for one’s own digital legacy with a power of attorney that remains valid after one’s death. Provisions for the digital legacy can also be included in the will (37). A study from England showed that, in 2017, the question of digital legacies received no attention at all in the setting of hospice care. 96% of the persons surveyed stated that they had never discussed a digital legacy with a patient (38). Special situationsMinors as family members of terminally ill patientsDealing with minorsMinors must be included, in age-appropriate fashion, in the processes of coping with disease, death, and grieving. Minor children are often not included in physicians’ discussions with the family or in the grieving process, and this “non-information” can cause them additional distress (e20, e21). Moreover, they may receive less attention than usual from other family members who are preoccupied with their own grief. Children absolutely need to be informed; they have the right to be included, to ask questions, and to grieve along with the adults (14). Children, like adults, often can only come to terms with a loss when they can grasp it, in the most literal sense. No child is too young to be with a dying person, to see a dead person, or to participate in a ritual such as a funeral. Due attention must be paid, however, to the child’s developmental state and special needs, which must be considered on an individual basis (etable 2). The exclusion of children, supposedly for their own good, tends rather to reflect the inability of the adults to cope with the situation (parents and other family members, but also the treating personnel). Children of severely ill parents have an elevated risk of mental illness that can be lowered by giving them age-appropriate information (e22). For such situations, specially trained therapists are recommended, as a preventive measure as well (14). Ways to find qualified specialists or regional support offerings for children of a parent with cancer can be found in the References (e23, e24). eTable 2Conceptions of death in children and adolescents of different ages and developmental stages, based on [e8, e21]
Creating an emotional legacyDigital legacySince 2018, German law provides that the heirs also inherit the deceased person’s digital property. All online content becomes accessible to them after the individual’s death, just as analog documents do. In addition to the legal provisions, orderly settling of the inheritance, and clarification of the patient’s wishes and conceptions, a so-called emotional legacy can be created that will be highly valued by those left behind (adults as well as children). Such legacies can be of many kinds, including a farewell letter, a video message, or a postcard with a brief greeting. Even if the things written in it have been said before, their being written down in this way lends them a new and different significance; but it is particularly when certain things are hard to say that an emotional legacy provides an opportunity to do so by another route. Many patients are very grateful for this idea and for the raising of the option in discussion. There are also more specific opportunities for support, e.g., dignity-centered therapy, as described by Chochinov, in the hands of specially trained therapists (39). This type of therapy was developed specifically for persons at the end of life; it is a manual-based, short-term intervention in which the therapist and the patient, in a joint discussion, create a legacy consisting of important messages from the patient. Illustrative questions include: Are there particular things that your family should remember about you? Do you have concrete recommendations that you would like to give your family to prepare them for the future? Once this document has been generated, the patient agrees to its release, and it is determined how the legacy will be given to family (for example, it can be delivered to them by the treating physician, by the patient himself/herself, etc.). Studies have shown that this type of biographical work heightens feelings of dignity and significance (e25) and lessens sadness and depression in the participating patients (40). The Universitätsklinikum Bonn has initiated a “family audio book” as a pilot project for young parents who are in palliative care because of cancer. The patient’s life story is recorded as an audio book for the children and other relatives. The project is accompanied by scientific research concerning the effect of the family audio book on the course of treatment and the grieving process (flyer at [e26]). Even without professional equipment, valuable legacies can be created, for example, a mother’s lullaby recorded as an audio file on a mobile telephone. Fulfilling the patient’s last wishesThe physician can speak with the patient about his or her last wishes and, depending on the circumstances, assign the task of fulfilling them to particular people. Many palliative care units have “wish fulfillment teams” that try to do this, with the aid of donated funding. There are also various supraregional offerings of this type (e27– e29). Many families are not informed about this option, do not think about it, or need an initial impulse from the physician or other treating professional. Often, it is the physician’s manner of dealing with the truth that first gives the patient an opportunity to settle final matters. Aside from topics within the scope of the physician’s professional counseling, he or she also has a steering function. The physician should identify important elements and see to it that the appropriate experts work with the patient in an interdisciplinary, multiprofessional approach. In the real world, palliative topics are often avoided for too long; physicians too rarely address the issue of settling final matters, and patients and their families lose valuable time. The creation of an emotional legacyAside from the important documents, an emotional legacy should be thought about as well. This could be a farewell letter, a video message, or a postcard with a brief greeting. Further Information on CME
CME credit for this unit can be obtained via cme.aerzteblatt.de until 29 April 2022. Only one answer is possible per question. Please select the answer that is most appropriate. Question 1 How do most patients confronted with a life-limiting illness want their treating physician to deliver information about their diagnosis and prognosis?
Question 2 When a physician discusses the goals of treatment with a patient, what condition or framework for the discussion is to be preferred?
Question 3 Which of the following effects has been documented in studies of patients who received palliative care?
Question 4 According to the German AWMF guideline, when should patients with a diagnosis of lung cancer optimally begin receiving palliative care?
Question 5 Which of the following is an important consideration regarding the writing of a will?
Question 6 What percentage of patients receive treatments with little or no expected benefit at the end of their lives?
Question 7 What is the legal status of a digital legacy?
Question 8 According to a pertinent study, what can spiritual well-being at the end of life help prevent?
Question 9 How should you react as a physician if your mentally competent patient does not actively want to discuss matters concerning the end of life with you?
Question 10 What effect on patients in palliative care can be achieved by dignity-centered therapy, as described by Chochinov?
► Participation is possible only via the Internet: cme.aerzteblatt.de eBOX1Fundamental attitudes toward life and death (e8)
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Which of the following is important to remember when dealing with angry patients?Provide angry patients and families personal space and do not touch them. Allow them to vent from a comfortable distance, and refrain from even a gentle touch. When possible, get eye-level with them and lean in towards them slightly. This non-verbal gesture shows them respect and care.
What is therapeutic communication quizlet?Therapeutic Communication. Communication that is goal directed and focused dialogue between nurse and patient, specifically fitted to the needs of the patient.
Why is the problem solving tone more effective than the expressive tone when discussing a patient's skin rash?In the case of a skin rash, the problem-solving tone allows the HCP and the patient to focus on the cause of the rash and treatment without allowing the discussion to become embarrassing.
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