An hcp who is caring for a terminally ill patient knows how the patient is feeling.

  • Journal List
  • Dtsch Arztebl Int
  • v.118(17); 2021 Apr
  • PMC8289964

Dtsch Arztebl Int. 2021 Apr; 118(17): 303–312.

Continuing Medical Education

Communication Strategies, Counseling, and Administrative Aspects

Abstract

Background

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.

Methods

This review is based on guidelines, reviews, meta-analyses, selected publications, and the authors’ own experiences from everyday clinical practice.

Results

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.

Conclusion

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 task of counseling the patient

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.

Learning objectives

Settling final matters

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 matters

Open communication

Most patients want to be informed openly about their diagnosis and prognosis.

The consequences of open communication

For 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 1

Review articles on preferences about truth at the bedside

Reference Goal Number of studies included Main findings Limitations
(3) Summarize the state of knowledge on patient preferences for dealing with the truth about the diagnosis and prognosis in patients with cancer 93 studies,
sample size 10–2331
Most patients in the early stage want prognostic information. The evidence on patient preferences about informing relatives is mixed (4 studies). only a few studies dealing with advanced illness, most dealing with early stages; small sample sizes, different measuring instruments, only level IV evidence and qualitative design for advanced illness
(4) Observe the consequences of truthfulness in patients with advanced, life-limiting illnesses 46 studies,
23 quantitative, 20 qualitative, 3 bothsample size 7–1046
Talking about the diagnosis and prognosis does not increase anxiety. Avoiding the truth can have adverse consequences.
Sensitive discussion helps patients adjust their goals and choose suitable supportive measures rather than bothersome and ineffective ones.
Most studies provided only level IV evidence. The findings are of limited generalizability because of the specific type of patients involved. Cultural aspects were not fully considered.
(5) Describe the communicative preferences of patients and caring relatives in advanced, life-limiting disease 47 studies, 22 quantitative,
24 qualitative, 1 bothsample size 4–9105
Patients and caregivers in various countries, in all stages of illness, want to be well informed about the disease itself, about their future problems and how they will be treated, and about how long they are expected to live.
As the disease progresses, the caring relatives need more information than the patient.
only descriptive studies, therefore low-level evidence; heterogeneous methods, specific patient groups and subgroups limiting generalizability
(6) Describe the effects of frank communication on patients with advanced cancer 18 studies
sample size 12–590
In summary: the doctor can tell the patient the truth if the patient wants this. The consequences of telling the truth are often not assessed directly, but rather retrospectively, which promotes bias.
There were limitations due to the design of the included studies: a non-experimental design enables no inferences about causality and there can be no control for the interactions studied.

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 2

The SPIKES model (13, e4)

S “Setting” the setting of the discussion good preparation for the discussion in a suitable environment where there will be no disturbances
P “Perception” the patient’s state of knowledge What does the patient know about the disease?
I “Invitation” the patient’s invitation to the physician to provide information How much information would the patient like to receive? Can currently available information and findings be discussed in this setting?
K “Knowledge” the imparting of knowledge imparting new information to the patient (new diagnosis and prognosis, changes in the treatment plan) introducing bad news with a warning that bad news is to come
E “Exploration of Emotions” perceiving and addressing the patient’s emotions and reacting with empathy joint bearing of emotions; the physician’s task is not to talk the patient’s feelings away, but rather to show empathy and understanding. This factor determines how much information (perhaps only partial) can be imparted. Some patients can only accept the new facts if they are imparted in a multistep process (14).
S “Strategy and Summary”summarizing and making plans for the future summary of the discussion, looking ahead to coming treatment, setting the next appointment

Table 3

Communication tips (from 3, 5, 7, 14, 15, e5– e7)

Setting – discussion in person,
– optimally with a physician whom the patient knows already
– appropriate atmosphere without disturbances
– enable the patient to have a trusted person present
– hold such discussions in the morning if possible, and not right before the weekend, so that the patient can ask follow-up questions in the afternoon or the next day
– if necessary, divide the information to be imparted into smaller portions and communicate these bit by bit
Attitude – sincerity
– empathy
– esteem, non-judgmental respect
– giving a feeling of trust and security
– active listening
– awareness of emotions and behaving in a supportive way by leaving room for the patient’s fears and uncertainties
– let the patient ask questions
Patient-centeredness – see each patient (and relative) with their own personality and deal with them accordingly
– respect the patient’s current preferences
Clarity – mention dying and death explicitly
– empathically and appropriately to the situation; this increases patient satisfaction and lessens mental stress in the dying phase, both for patients and for their relatives
– check continually that the imparted information has been understood and provide summaries
– avoid medical terminology, or explain it if necessary
Maintain hope, offer help – discuss multiple scenarios for the future (e.g., best, worst, and typical cases)
– if a cure is no longer possible, offer help nonetheless (e.g., give hope for the best possible quality of life, minimal symptom burden, and so on)
Culture-sensitive communication – take account of the patient’s cultural and religious conceptions
– make a connection with the corresponding local cultural and religious organizations for an exchange of ideas

Training communication skills

One 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 4

Early 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

Source Outcome parameters Number of study participants (RCTs) Diagnoses Results [95-%-KI]
(17) health-related quality of life 1028 (7 RCTs) cancer significant improvement with early integration of palliative care:standardized mean difference (SMD) 0.27; 95% confidence interval [0.15; 0.38] (weak effect, low evidence level)
(17) depressiveness 762 (5 RCTs) cancer no significant improvement with early integration of palliative careSMD –0.11; [−0.26; 0.03] (trend toward improvement with early integration of palliative care, very low evidence level)
(17) symptom burden 1054 (7 RCTs) cancer significant improvement with early integration of palliative careSMD –0.23; [− 0.35; − 0.10] (weak effect, low evidence level)
(17) survival 800 (4 RCTs) cancer no significant improvement with early integration of palliative careSMD 0.85; [0.56; 1.28] (no trend toward improvement with early integration of palliative care, low evidence level)
(18) health-related quality of life 2355 (15 RCTs) cancer, heart failure, other diagnoses significant improvement with early integration of palliative careSMD 0.46; [0.08; 0.83] (weak effect, low evidence level)
(18) symptom burden 1342 (10 RCTs) cancer, heart failure, multiple sclerosis, other diagnoses significant improvement with early integration of palliative careSMD −0.66; [−1.25; −0.07] (weak effect, low evidence level)
(18) survival 2184 (7 RCTs) cancer, heart failure, other diagnoses no significant improvement with early integration of palliative careSMD 0.90; [0.69; 1.17] (no trend for or against early integration, low evidence level)
(18) utilization of health-care resources 4794 (24 RCTs) various diagnoses 11 studies report lower resource utilization with early integration of palliative care
(19) survival 23,154 lung cancer 0–30 days after diagnosis:
adjusted hazard ratio (aHR) 2.13; [1.97; 2.30]
(increased risk of dying in the early integration group)*2 31–365 days after diagnosis:
aHR 0.47; [0.45; 0.49] (significant survival advantage in the early integration group)
365 days after diagnosis
aHR 1.00; [0.94; 1.07] (no difference between groups)
significant overall survival advantage with early integration of palliative care for patients with advanced lung cancer

Early integration of palliative care

The 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 1

Overview of important documents

Document Purpose Important points Example
Health care proxy (HCP) Who should speak for the patient when the patient can no longer speak for himself or herself? – The HCP should remain valid after death; only in this way can, for example, a mobile-telephone contract be canceled after the patient is deceased.
– Appointing multiple persons as health care proxies of equal status may lead to blocked decision-making in case these persons are of diverse opinions on what should be done.
– Another person should always be named as a replacement in case the designated person cannot serve.
– One can state, for the case that a legal guardian is needed, who should be named and/or who must not be named for this purpose. Doing so can obviate the need for a care directive.
– If there is no person in a position of trust with the patient who can be named for this purpose, the appointment of a guardian by the court offers the advantage of additional legal protection.
example downloadable at (20, 21)
Advance health care directive (AHCD) establishes preferences for situations that may arise in which the patient can no longer make decisions or express wishes (21) – responsibility of the physician: speak in detail with the patient about what situations can be expected over the further course of the illness
– establish treatment preferences for each of these situations
– as it is impossible to cover all potential situations, the AHCD can be supplemented by brief case illustrations or a statement by the patient of his/her fundamental attitudes toward life and death (eBox 21).
example downloadable at (22)
Emergency directive (ED) enables physicians to make rapid decisions in the patient’s best interest in case of unexpected acute events – can stand alone or as a supplement to an AHCD
– an ED is important, e.g., when health care proxies cannot come to the hospital in time or when acute triage decisions must be made, e.g., during the coronavirus pandemic
(23) (24)
PALMA (patient directive for life-sustaining measures) a supplement to the AHCD for patients in palliative care with limited time left to live – supplement to an AHCD
– must be made in cooperation with a physician and must be co-signed by the physician
downloadable at (25)
Care directive states who should and should not be called on to care for the patient – establishes the patient’s wishes for what should be done for him or her during care example downloadable at (26)
Custody directive states who should take care of the children after the parents’ death – A guardian can be named.
– It can be stated who should definitely not be granted custody. In case of death, the matter will be considered by the family court.
– Personal custody and property guardianship can be separated.
(e8, e9)
Spiritual advance directive provides help in decision-making in cases of severe illness or moribund state; enables dealing with spiritual topics – gives an impression of the patient’s values, convictions, and sense of the meaning of life.
– Patients often want to talk with a physician; this can lead to a better quality of life, to reduced depression, and to an improved physician-patient relationship (e10; e11)
example downloadable at (e12)
Putting together important data, facts, and access codes enables the family to find all of the impor‧tant information – assemble all of the important information inheritance checklist

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 5

Publications on Evaluation of the Quality of Life

Source Object of study Number of studies included Main findings Limitations
(e14) Accuracy of physicians’ estimation of incurably ill patients’ time left to live 8 studies included, 1563 data sets (estimated survival vs. actual survival) – the clinical estimate was generally overly optimistic (mean estimated survival 42 days, mean actual survival 29 days).
– In 27% of cases, the physicians erred by four weeks or more
– The included studies were markedly heterogeneous, precluding meta-analysis.
– There were no follow-up studies.
(e15) Accuracy of self-estimation by chronically ill patients of their time left to live: heart failure, COPD, end-stage renal failure, chronic renal disease.
In part, physicians’ estimates compared with estimates from computed models
9 studies included, 729 patients, 20–135 patients per study – self-estimates of survival were longer than observed survival
– patients with heart failure estimated their time left to live 40% than a validated prognostic model
– patients with heart failure and COPD died within one year almost three times as often as they had estimated
– The heterogeneity of the evaluated studies precluded meta-analysis.
– Only a few diagnoses were studied.
– The studies were of low to medium quality.
(30) Accuracy of doctors’ and nurses’ responses to a “surprise question” about the time patients with kidney disease, cancer, heart failure, sepsis, COPD, and other diseases have left to live (Is this person so ill that you would be surprised if they died, e.g., in the next 12 months?) 26 studies included, 25 718 survival estimates with the surprise question The surprise question is helpful.
– pooled accuracy 74.8%
– doctors estimated the time left to live more accurately than nurses did
– the surprised question seemed to be more reliable in an oncological setting
– The informative value of the analysis is limited by the fact that only 16% of the patients died, and the accuracy of prediction could only be judged in these cases
– the small number of high-quality studies is a further limitation.
(31) Accuracy of doctors’ assessment of the time patients in palliative care have left to live (58% cancer, 2% liver disease, 40% cancer plus other diseases) 42 studies included,
> 12 000 estimates
– The accuracy of estimation varied in the range of 23 –78%.
– Physicians overestimated survival time by a factor of two: median estimated survival 44 days, median actual survival 25 days.
– There was a medium to high risk of confounder bias.
– The findings are of limited generalizability because of the heterogeneity of the included studies.

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 life

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.

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.

Prognostication

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.

Spiritual topics

Patients’ desire to talk with a physician

Most 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):

  • S – spiritual and faith convictions

  • P – the position and role of these convictions in the life of the patient

  • I – integration in a spiritual or religious group or community (church, mosque, synagogue, temple, etc.)

  • R – the role of the physician: how should the physician address the patient’s spiritual expectations and problems?

Last will and testament

The physician’s steering role

Physicians 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 convictions

Another 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 2

Will and inheritance checklists (modified from [e19])

A will should be written if any of the following questions are answered in the affirmative.

  • According to inheritance law, would your spouse and children constitute a community of heirs after your death?

  • Do you have children from a previous marriage?

  • Do you have children born out of wedlock?

  • Do you want to make provisions for a disabled child?

  • Do you have a minor child or children?

  • Is your child (or are your children) heavily indebted?

  • Do you want to prevent your inheritance going to your stepchildren?

  • Are you unmarried, or do you have no children?

  • Are you widowed or divorced?

  • Do you have a life partner to whom you are not married?

  • Do you want to reward a member of your family for special services rendered to you (nursing care, helping with the building of a house, etc.)?

  • Do you want to pay back sums of money that you accepted during your lifetime?

  • Are you, or is a member of your family, a citizen of a foreign country?

  • Do you have assets abroad?

  • Does your property include a business or company?

  • Would you like to leave all or some of your property to a charitable, scientific, or cultural institution or institutions?

Checklist: inheritance (modified from [e8])

  • make a will if desired or necessary

  • tell a person whom you trust where the will is located, or deposit it with the local district court

  • put important documents together and tell a trusted person where they are:

    • identity card and/or passport

    • family tree

    • lease

    • current credit or leasing contracts

    • tax documents

    • insurance documents

    • documents relating to savings and checking accounts, stocks and bonds, building loan agreements / mortgages

    • an overview of all Internet service providers with the corresponding access data; or else, delete the accounts that you do not want to pass on

  • make a list of all of your memberships and subscriptions

  • Who has the keys to your apartment or house?

  • if you own your own business, be aware of the type and nature of your duty to maintain documentation, and inform others of this

  • state your wishes about funeral and type of burial, wake (if any), and obituary

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 legacy

More 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 situations

Minors as family members of terminally ill patients

Dealing with minors

Minors 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 2

Conceptions of death in children and adolescents of different ages and developmental stages, based on [e8, e21]

Conceptions of death and dying Typical reactions to loss Appropriate support of grieving person
Children under age 3 – children under age 3 cannot grasp dying or death
– the finality of death is not understood
– death is equated with temporary absence
– change in sleeping or eating habits
– rage, frustration
– waiting and seeking (e.g., the child looks under the deceased mother’s blanket every morning to see whether she has come back)
– Children sense the grief of the people around them. They need closeness and physical attention.
– Rituals should be maintained as much as possible (bedtime stories, fixed mealtimes).
Ages 3 to 6 – conceptions of death are vague– death is temporary, conceived of as darkness and motionlessness
– death always happens to somebody else
– there is little fear of death, as its permanence is not appreciated and it happens to others anyway
– seeking to understand death–state of confusion after a loss
– regression after a loss (e.g., renewed bedwetting)
– as in children under age 3
– Cognitive processing becomes increasingly important. The child’s interested questions should be answered in clear, age-appropriate language.
Ages 6 to 9 – gradual understanding of the finality of death
– death is personified – death is perceived as a punishment (childish interpretation of Christian teaching)
– may be considered in relation to one’s own person
– fears of loss and separation
– reality and imagination are mixed
– guilt feelings: did Mommy get cancer because I wasn’t nice to her?
– inclusion in farewell and grieving rituals (e.g., with a letter or self-made drawing)
– clear explanation of the circumstances of death
– take the child’s magical thinking into account (e.g., imagining anger at the mother to be the cause of her death) and absolve the child of guilt feelings proactively
Age 10 and above – death is perceived as final, as a conclusion – somatization tendency (e.g., headache, abdominal pain)
– preoccupation with the meaning of one’s own life
– thinking about the matter of life after death
– the loss collides with the detachment process
– offer discussion repeatedly, but do not compel discussion
– support contact with peer group
– help the grieving child continue with activities that might seem “improper” (birthday parties, going to the movies, etc.)

Creating an emotional legacy

Digital legacy

Since 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 wishes

The 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 legacy

Aside 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.

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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?

  1. They want these things presented as optimistically as possible

  2. They want a presentation based on the facts, but with the outcome left unclear

  3. They want a scientifically oriented presentation, but with the time they have left to live being deliberately overstated

  4. They want true and comprehensive information

  5. They want a pessimistic presentation, so that they can take comfort when things turn out better than they expected

Question 2

When a physician discusses the goals of treatment with a patient, what condition or framework for the discussion is to be preferred?

  1. The discussion should preferably be held standing

  2. Adequate time should be available for the discussion

  3. The discussion can take place in the corridor of the hospital ward if no room is available

  4. The use of many specialized medical terms reinforces the patient’s confidence in the physician as a skilled professional

  5. The discussion should preferably be held only with the patient’s relatives, because the patient is under enough stress already

Question 3

Which of the following effects has been documented in studies of patients who received palliative care?

  1. shortened survival

  2. better quality of life

  3. reduced analgesic use

  4. greater health-care costs

  5. increased depressive tendency

Question 4

According to the German AWMF guideline, when should patients with a diagnosis of lung cancer optimally begin receiving palliative care?

  1. within 2 months of receiving the diagnosis

  2. within 3 months of receiving the diagnosis

  3. within 4 months of receiving the diagnosis

  4. within 5 months of receiving the diagnosis

  5. within 6 months of receiving the diagnosis

Question 5

Which of the following is an important consideration regarding the writing of a will?

  1. It should be either handwritten or notarized.

  2. It is only valid if it has been deposited with the court.

  3. It is only needed if large sums of money or real estate are to be inherited.

  4. It expires unless confirmed in writing within 5 years.

  5. A joint spousal will (“Berlin will”) is a bad idea, as it is often not legally valid.

Question 6

What percentage of patients receive treatments with little or no expected benefit at the end of their lives?

  1. up to 38%

  2. up to 48%

  3. up to 58%

  4. up to 68%

  5. up to 78%

Question 7

What is the legal status of a digital legacy?

  1. Social network operators can deny the heirs access to the account of the deceased even if they present a certificate of inheritance.

  2. The digital legacy is not part of the inheritance and must therefore be claimed in a separate legal process.

  3. Any money contained, e.g., in a PayPal account is not part of the inheritance.

  4. The contents of the digital legacy are by law accessible to the heirs in the same way as the analog legacy.

  5. Even if they present a certificate of inheritance, the heirs have no access to digital content unless they also know the password.

Question 8

According to a pertinent study, what can spiritual well-being at the end of life help prevent?

  1. despair

  2. loneliness

  3. severe pain

  4. anxiety disorders

  5. panic attacks

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?

  1. I should repeatedly ask about this, actively and empathically, as the circumstances permit.

  2. I should see whether the patient has a health-care proxy and orient any further medical discussions and interventions accordingly.

  3. I should discuss these matters with the patient’s next of kin from now on.

  4. I should leave such discussions to the nurses.

  5. I should discuss any further measures exclusively with the patient’s other treating physicians.

Question 10

What effect on patients in palliative care can be achieved by dignity-centered therapy, as described by Chochinov?

  1. reinforcement of the will to live

  2. prolongation of progression-free survival

  3. improvement of sleep disorders

  4. alleviation of tumor-related pain

  5. reduction of depression

► Participation is possible only via the Internet: cme.aerzteblatt.de

eBOX1

Fundamental attitudes toward life and death (e8)

I would like to live … Agree Do not agree
- as long as possible
- as long as I am basically healthy
- as long as there is a chance of recovery
- even if I will remain unconscious permanently
- even if my mind is no longer functioning well
- even if I need other people�s help all the time
I would like my physical and emotional suffering and pain to be relieved to the greatest possible extent,
- even if taking medications for this purpose
might impair my ability to think clearly
- even if taking medications for this purpose
might make me drowsy or put me to sleep
- even in the unlikely case that taking medications
for this purpose might unintentionally shorten
my life
In case I have an incurable disease,
- I want to be fully informed about it
- my proxy or caregiver should be informed about it
- my family should be fully informed about it
If my death is imminent, I would like …
- to be in a familiar environment, preferably at home
- to be with my family
- to be in a place where maximal medical and nursing care can be provided

In case I have an incurable disease,

If my death is imminent, I would like …

Acknowledgments

Translated from the original German by Ethan Taub, MD.

Footnotes

Conflict of interest statement Prof. Gottschling has received reimbursement of travel expenses and/or lecturing or consulting fees from the following companies: Archimedes, Baxter, Bionorica, Bionorica Ethics, Boehringer Ingelheim, Grünenthal, Kyowa Kirin, Lilly, Mundipharma, Novartis, Pfizer, Roche, Spectrum Therapeutics, Teva, Tilray, Vertanical.

Dr. Welsch has received reimbursement of travel expenses and/or consulting fees from Kyowa Kirin.

Both authors state that they have no conflict of interest relating to the present article.

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When communicating with a patient who is terminally ill the HCP should?

When communicating with a patient who is terminally ill, the HCP should: allow the patient to maintain hope. Patients with intellectual disabilities may have difficulty understanding or complying with treatments or recommendations.

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.