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Management model of caregiver’s grief in a tertiary
oncological center Hospice: from anticipatory
mourning to condolence conversation: preliminary
observations
Ivan Gallio
Istituto Oncologico Veneto
Marina Lorusso
Istituto Oncologico Veneto
Matilde Moscato
Chiara Miranti
Mirsad Pasalic
Istituto Oncologico Veneto
Fabio Formaglio
Istituto Oncologico Veneto
Alessandra Feltrin
Istituto Oncologico Veneto
Elena Ruggiero
Istituto Oncologico Veneto
Research Article
Keywords: palliative care; multidisciplinary, grief, anticipatory mourning, Hospice care, psychological
support
Posted Date: February 22nd, 2024
DOI: https://doi.org/10.21203/rs.3.rs-3969736/v1
License: This work is licensed under a Creative Commons Attribution 4.0 International License.
Read Full License
Additional Declarations: No competing interests reported.
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Abstract
Background
Bereavement is a physiological process of great importance in palliative care; grief-processing disorders
can be diagnosed after at least 6 months after death and have severe clinical or psychological
consequences. Aim of the study is to verify how adequate management of anticipatory mourning and
condolence conversation in the early grief stages can be protective.
Methods
Patients and caregivers are supported by the multidisciplinary team by semi structured interviews. In
condolence conversation within 1 month of the death, we identify elements of suspicion of psychological
fragility that require support for an adequate processing of the loss.
Results
From condolence conversation, only 3% of the caregivers who had been psychologically supported during
the hospital stay and demonstrated a good level of acceptance of their relative's end of life, showed
problems in grieving within 1 month of death; none showed excessive avoidance of memories, diculties
with trust and feelings of emotional loneliness.
Conclusions
Despite the limitations, the preliminary data of our study clearly suggests the protective potential of
multidisciplinary support, particularly in the risk of developing grief processing disorders. These
considerations encourage us to implement our model of clinical and psychological support system and
develop paths dedicated to caregivers in greater diculty.
Simple Summary
Processing the loss of a relative is a complex and painful experience, which can sometimes become
complicated, with the appearance of grief processing disorders. In palliative care and particularly in
Hospice a progressive path is possible to protect patients and caregivers, identifying their vulnerabilities.
This leads to correct management of anticipatory grief, taking advantage of all the skills of the
multidisciplinary team involved in taking charge. Furthermore, scheduling an interview within a month of
the death (“condolence conversation”) allows the team to identify those most at risk for complicated grief
and suggest strengthening strategies, directing the caregivers most in diculty towards a dedicated
psychological path.
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1. Background
Palliative care is an “
approach that improves the quality of life (QoL) of patients and their families,
address the problems associated with life-threatening illness, through the prevention and relief of
suffering by means of early identication and smart assessment and treatment of pain and other
problems, physical, psychosocial and spiritual
” [1, 2]. Global palliative care for terminal cancer patients
can be managed at home or in Hospice, that is dedicated to the patients with a prognosis of 6 months or
less: admission to Hospice allows greater support for the caregiver, who can also dedicate themselves to
the processing of anticipatory grief, supported by the palliative care team. [3–5].
Grief processing is a matter that the palliative care team deals with every day: in fact, mourning is a
natural response to the loss of a loved one and for most people the symptoms of grief begin to decrease
over time. Despite most individuals having sucient personal resources to adapt to this transition phase,
there are more vulnerable subjects who are at risk of complicated bereavements [6–8].
Classically, according to Elizabeth Kübler Ross, the mourning process is divided into 5 phases: rejection
and denial, anger, negotiation, depression, and acceptance [9, 10]. The acceptance phase represents a
crucial moment in the mourning process: during this phase, the grieving person begins to gradually
integrate the awareness of the loss into their reality and nd a new emotional balance. Acceptance of
death requires time and energy as an individual goes through the various stages of processing the loss
and must be correctly supported in case of need [10].
The literature clearly shows how, even in palliative care settings, guaranteeing an universal bereavement
service is neither necessary nor benecial and can sometimes be counterproductive in individuals with
adequate individual resources [11–18].
Indeed, prolonged grief disorder (PGD) is characterized by this intense and persistent grief that causes
problems and interferes with daily life and an estimated 7%-10% of bereaved adults will experience the
persistent symptoms of prolonged grief disorder 19. The PGD is included in the International
Classication of Diseases, 11th Revision (ICD-11), with diagnostic criteria also accepted for inclusion in
the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5 TR) (identity disruption,
such as feeling as though part of oneself has died; marked sense of disbelief about the death; avoidance
of reminders that the person is dead; intense emotional pain related to the death; diculty with
reintegration, such as problems engaging with friends, pursuing interests, planning for the future;
emotional numbness ; feeling that life is meaningless or intense loneliness) [19–26]. To be signicant,
symptoms must be present nearly every day during the prior month and the relative’s death had to have
occurred for at least 6 months. The bereavement lasts longer than might be expected based on social,
cultural, or religious norms. Factors that may increase the likelihood of developing PGD include the high
burden of care on the part of the caregiver, social isolation, advanced age, the nature of the death, the
number of losses and the psychiatric comorbidity [19, 26].
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Adequate management of the anticipatory grief phases could signicantly reduce the risk of developing
PGD, especially in hospice care settings [12, 27], so monitoring for signs of severe grief in caregivers
could be fundamental to increase preparation for death and to reduce caregiver burden [12, 27–30].
The aim of our study is to demonstrate how, in the context of multidisciplinary management, offering
semi-structured psychological support from the early stages of hospitalization in the Hospice and which
continues during the condolence conversation can be useful and protective in developing mourning
disorders. The care model that we propose has the aim of allowing a correct and gradual processing of
anticipatory grief by the caregiver.
2. Methods
We considered the patients admitted to our Tertiary Oncological Center Hospice in the period 2021–2023:
144 patients admitted to the Veneto Institute of Oncology (IOV) Hospice from November 2022 to
November 2023; of the 144 patients, 30 were discharged with home care, while 114 died in Hospice.
The decision of Hospice admission was formulated by the attending physician (oncologist, palliative care
doctor, general practitioner) and approved by the palliative care team: according to the procedure in use,
before entering the Hospice, the patient and caregiver are involved in a multidisciplinary interview (the pre-
entry interview) to dene the objectives of hospitalization and share decisions. The pre-entry interview
involves the palliative care team composed by palliative physician, psychologist, and nurse. As part of the
care taking process for patients admitted to our Hospice, a psycho-oncological assessment and possibly
management of the patient, caregiver and family members is envisaged. The psychologist, starting from
the pre-entry interview and based on the clinical evaluation of the physician and the analysis of the
family's needs during the entry interview, proceeds with a specialized evaluation of the patient and the
family members who take care of him for a more in-depth analysis of any emerging problems and needs.
This evaluation will allow the setting up of a specic psychological-therapeutic intervention program for
the family unit evaluated.
During hospitalization, the patients and caregivers are supported by the multidisciplinary team and some
semi-structured psychological interviews are offered to identify any critical issues and vulnerabilities, in
the management of anticipatory grief. During the psycho-oncological interviews, the levels of awareness
of diagnosis and prognosis (of the patient, caregiver, and family members), the type of functioning of the
family and any fragility of the family context are assessed. All those elements that allow the team to
understand whether a good job of anticipatory mourning processing is underway are also explored.
For all caregivers of patients who died in Hospice, a condolence interview is planned within 1 month of
the death, which can be performed in person or remotely based on the needs of the subjects. The timing
and contents of the condolence interview are evaluated on the ndings made thanks to the use of
"observation grids”, as well as on the quality and necessity of the interventions carried out during
hospitalization.
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The team warns the family members that they will receive a condolence phone call from the psychologist
and/or palliative care doctor every few weeks to evaluate their emotional state and the emergence of any
needs/frailties related to the loss. Alternatively, a condolence conversation in person with the entire
palliative care team is agreed upon immediately.
Through a semi-structured interview, dened as a "condolence interview", we try to identify early elements
of suspicion of psychological fragility that require support for an adequate processing of the loss. If the
need for a therapeutic path is identied, family members are helped to activate competent local services
in an appropriate manner (Fig.1).
Figure 1. The gure shows the mourning process, starting from the anticipatory mourning phases up to
the management of any mourning disorders. In the phases of anticipatory mourning, the support of the
multidisciplinary palliative care team is essential for both the patient and the caregiver, to provide the
appropriate tools also for the management of actual mourning. The mourning process is divided into 5
phases, not necessarily consequential but all indispensable: denial, anger, negotiation, depression,
acceptance. The diagnosis of mourning disorder occurs at least 6 months after the loss of a loved one, in
the presence of disturbing and persistent symptoms, which compromise the normal functioning of daily
life. Condolence conversations, a natural continuation of taking charge of palliative care during the
hospice stay, can make it possible to identify elements of vulnerability early and direct people to the
competent local services for a targeted psychological path.
In particular, the semi-structured psychological interview is based rst of all on the clinical and
demographic data shared with the palliative care doctor, who plays a fundamental role in the all-round
management: the origin of the patient (home vs. hospital or other structure), the reporting methods and
the gures involved in the interview prior to the proposal to enter the Hospice.
During the pre-entry interview and any subsequent psycho-oncological interviews, the following are
assessed for both the patient and the caregiver:
adaptation diculties: diculties in accepting and dealing with the changes associated with illness,
alterations in behavior and relationships due to the illness, problems relating to the state of
information on the diagnosis, problems relating to the state of information on the prognosis,
unrealistic expectations regarding the treatment process;
emotional fatigue expressed in relation to the disease.
We then go on to consider the types of family functioning:
functional, i.e. elastic in its internal organization, good adaptation skills;
mute or frozen: use of silence as a defense mechanism; asks not to inform the patient of his
condition; tendency towards relational isolation;
rigid: unable to express emotions; also controlling the therapies administered; poor tendency to
adapt; asks for continuous explanations and reassurances;
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conict
• ual: aggression internal and external to the family context; diculty relating and expressing requests;
broken up: weak intra-family ties; puts the needs of individuals before those of family members and
the patient; absent in providing assistance and company to the patient);
rejecting: not cohesive; distrustful; devaluing the professionalism of the treatment team.
As regards the management of anticipatory mourning, during the interviews with the patient, the patient's
fears are assessed (fear of physical pain, of the unknown, of judgment, of separation from loved ones, of
dependence on the help of others, of feeling of burden, of disgurement, of loss of control, mental or
physical, of loneliness and the fear of them being forgotten).
The sense of fragility, anxiety and fear linked to the continuous questioning of one's health conditions,
the general sense of helplessness and emotional loneliness are also explored. The patient's degree of
acceptance is then assessed, with specic reference also to his wishes regarding the dying process and
the post-mortem.
Similarly, during the interview with the caregiver, the degree of awareness and acceptance is assessed, in
particular in relation to the caregiver's attitude: actions of "premature abandonment", with delegation of
all care and care to healthcare personnel, symbiotic attitude, denial of the reality of death, hope in the
patient's death and feelings of guilt).
As part of the condolence conversation, the timing of which is evaluated with the team based on the work
done and the problems that have emerged, the presence of disorders that may indicate a diculty in
processing is assessed, partly borrowed from the items indicative of PGD of DSM V:
● Persistent longing/pervasive nostalgia for the deceased person;
● Sadness and intense emotional pain;
● Concern about the circumstances of the death;
● Marked diculty accepting death;
● Feel disbelief;
● Diculty in indulging in positive memories regarding the deceased;
● Bitterness or anger;
● Negative self-evaluation;
● Excessive avoidance of memories of the loss;
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● Desire to die to remain close to the deceased;
● Diculty trusting others;
● Feeling of being alone or detached;
● Feeling that life is empty or meaningless without the deceased;
● Confusion about one's role in life, or a diminished sense of one's identity;
● Diculty or reluctance in pursuing one's interests or making plans for the future;
● Impairment in occupational, social, or other important areas of functioning.
All patients and caregivers gave their consent to the collection of clinical and psychological data
emerging during hospitalisation; the study was conducted in accordance with the principles of the
Declaration of Helsinki. The Ethics Committee of IOV approved the study and the virtual consultation.
Clinical data reported in eCRF were collected anonymously. Continuous data were reported as mean and
standard error; proportions and rates were calculated for categorical data. Groups were compared with
the chi-square test for categorical variables (the raw P values were adjusted with the Bonferroni method
for multiple comparisons). The SPSS 24 software package for Windows (SPSS, Inc., Chicago, IL, USA)
was used to manage the database and perform the statistical analysis. The signicance level was set at
p < 0.05 for all tests.
3. Results
In the period November 2022-November 2023, our Hospice welcomed 144 patients, of which 30 were
discharged home with the activation of an exclusive home palliative care programme.
Of the 114 patients followed until death in our Hospice, 60% were male and 40% female. Table1
describes the patients: malignancies of admission, age and the length of stay in the Hospice.
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Table 1
Neoplastic conditions of patients that died during Hospice recovery, their age class and duration of
stay in Hospice. CNS: Central Nervous System.
CANCER (n) % AGE range (n) % DURATION OF STAY (n) %
CNS (7) 6,1 31–40 years (1) 0,9 < 7 days (51) 44,7
Lung (21) 18,4 41–50 years (6) 5,3 8–10 days (19) 16,7
Genitourinary (12) 10,5 51–60 years (12) 10,5 11–15 days (14) 12,3
Female genital system (5) 4,4 61–70 years (18) 15,8 16–20 days (10) 8,8
Gastrointestinal (31) 27,2 71–80 years (37) 32,5 > 21 days (20) 17,5
Pancreas (11) 9,6 > 81 years (40) 35,1
Skin (3) 2,6
Breast (6) 5,3
Blood (11) 9,6
Regarding caregivers, the majority were female (66%) moreover the 34% were male. The Fig.2 shows
their distribution based on role in the family unit: most caregivers were sons (51%) or spouses (31%).
Only 9% were not rst-degree relatives or did not belong to the nuclear family (2%). No signicant
differences in mourning emerge in relation to the family role or the gender of the caregiver.
Figure 2. The gure shows distribution based on role in the family unit: most caregivers were sons (51%)
or spouses (31%). Only 9% were not rst-degree relatives or did not belong to the family (2%)
None of the caregivers who had not participated in the pre-entry multidisciplinary interview showed
diculties in grieving during the condolence interview carried out within 1 month of the death of the
relative. Instead, the 29% of caregivers who had participated in the pre-entry interview showed diculties
in grieving. Particularly, by evaluating the pathological mourning items according to the DSM V,
signicant correlations emerge with pervasive nostalgia and disbelief.
From the analysis of the condolence conversation, as shown in the Fig.3, among the caregivers who had
been psychologically supported during the hospital stay and demonstrated a good level of acceptance of
their relative's end of life, a small minority showed problems in grieving (3%) within 1 month of death. The
4% expressed pervasive nostalgia, intense emotional pain, disbelief, 2% perplexity about the
circumstances of the death, lack of positive memories, feeling of an empty life, confusion about their role
in life, maintaining their interests or identifying their role in the community. None showed excessive
avoidance of memories, diculties with trust and feelings of emotional loneliness.
Figure 3. The gure shows the presence (blue columns) or absence (orange columns) of potential
prolonged grief disorders in caregivers with good acceptance of relative's end of life phase, investigated
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one month after the death with the condolence conversation. Among caregivers with a good level of
acceptance of their relative's end of life, a small minority showed problems in grieving (3%) within 1
month of death. The 4% expressed pervasive nostalgia, intense emotional pain, disbelief, 2% perplexity
about the circumstances of the death, lack of positive memories, feeling of an empty life, confusion
about their role in life, maintaining their interests or identifying their role in the community. None showed
excessive avoidance of memories, diculties with trust and feelings of emotional loneliness
4. Discussion
Processing the loss of a loved one is a complex experience and always represents a moment of great
fragility. Although everyone can count on their own personal resources and on the support of their own
family, the risk of developing a mourning disorder must always be considered [3–5, 19, 27].
The model that we propose emphasizes the importance of a multidisciplinary approach: the palliative
care physician and the psycho-oncologist co-participate in taking charge of the patient himself and his
family unit, actively involving the other assistance gures (nurses and social-health workers). Especially
in Hospice, the caregiver, in fact, can count on multidisciplinary support in the processing of anticipatory
grief, regardless of the length of hospitalization. Our data support the hypothesis that, faced with the
privilege of saying goodbye to relatives, denied to those who are faced with sudden death, everyone's
personal resources can however be exhausted in the attempt to offer as much support as possible to the
patient while they are alive [31, 32]. Specic staff training, in a delicate and multifaceted context such as
exclusive palliative care, represents the key to adequately taking care of the patient.
Our preliminary data indeed, highlights how a specialized psychological support allows the team to focus
on the problems of anticipatory mourning, signicantly minimizing the caregivers' risk of pathological
mourning. It will then be the team intervention that allows the patient and family to feel welcomed and
listened to; furthermore, the possibility of interfacing with multiple professional gures allows us to
highlight different facets and grasp a greater number of symptoms, taking advantage of different specic
skills.
The proposal of a condolence conversation within a month of death, borrowing a more classically used
model in the management of sudden death, allows us to identify those most at risk and direct them
towards specialist support. On the other hand, as evident for the caregivers who did not participate in the
pre-entry interview without showing acceptance problems, psychological support must not be offered to
everyone without distinction, but only to those who demonstrate the need for it.
In summary, our model was created to evaluate the protective potential of psycho-oncological caregiver’s
care from the early stages of hospitalization in the Hospice with respect to the risk of pathological
bereavement. As suggested by our data, thanks to the support received from the entire team during the
course of hospitalization, many families show excellent coping strategies at the time of death. We then
proceed with reinforcement and, if necessary, a review of skills or anything else necessary to face the rst
days in the absence of your loved one.
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In the model we tested, each caregiver is offered psychological support through semi-structured
interviews during the hospitalization of their family member, without however making the interview an
obligatory moment or in which the family member must feel obliged to share their feelings and problems.
This engagement system, which where possible starts before entering the Hospice with the pre-entry
interview, allows coping skills to be assessed and greater support to be offered to those in greater
diculty. Furthermore, the analysis of the problems inherent to anticipatory mourning, conducted with
evaluation interviews but without the use of predetermined scales, makes the interview perceived as more
informal and therefore more spontaneous.
Although the assessment with a condolence conversation within 1 month is not in itself sucient to
diagnose mourning disorder, it allows family members to maintain a channel of communication with the
staff who assisted them in a delicate period such as that of the end life of their loved one. It also allows
the team to identify the greatest diculties or vulnerabilities, directing those at risk to competent external
psychological support.
As evident in our sample, the diculty in formulating the prognosis explains why nearly 30% of hospice
patients die in 7 days or less, so a fundamental step is certainly involvement in the care path right from
the phases of life prolonging therapies, with early palliative care. From the perspective of early palliative
care, in line with international literature [33–35], we hope to be able to expand this model of care also to
patients in active care, also in relation to the diculty of formulating the prognosis and the care burden
growing of the caregiver. Our institute already offers dedicated support to family members, but not strictly
connected to the outpatient palliative care unit, a context in which it would be desirable to have a
dedicated psycho-oncologist.
The involvement of the caregiver in the pre-entry interview is certainly an important step to allow an
adequate process of anticipatory mourning [30, 36]. Although our Hospice procedure, in the pandemic
and post-pandemic period there are many factors that may have contributed to reducing these
possibilities, in accordance with national and international regulations for the prevention of COVID. In
accordance with the demographic distribution [37] the majority of patients of our Hospice are over 70
years old and the caregivers are in most cases the patients' sons, often with an active job and heavily
burdened by assistance in the patient care process. This is a factor that could partly explain the greater
diculty in participating in pre-entry interviews.
Moreover, given the heterogeneous basic training of physicians who deal with palliative care (oncologists,
general practitioners, internal medicine specialists, geriatricians, neurologists and others), it is also worth
considering the possibility that different basic trainings, despite the targeted specialist training, underlie
different sensitivities and attitudes which may or may not lead to the valorization of the interview as a
moment of care and therefore to push for the interviews to be as multidisciplinary as possible and involve
the caregiver, even in the face of the organizational diculties that may arise.
The heterogeneity of the outcomes of the procedures based on specialist training is a fact already known
in other settings, which would also be interesting to study in palliative care [38].
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Surely, the objective of our working group is to make the care of the patient and his family as
homogeneous as possible, to guarantee adequate support for everyone.
5. Conclusions
Despite the numerous limitations (such as the small sample, the reduced involvement of caregivers in the
pre-entry interview, the percentage of patients with hospital stays of less than a week) the preliminary
data of our study clearly suggests the protective potential of multidisciplinary support, particularly in the
risk of developing grief processing disorders. These considerations encourage us to implement our model
of clinical and psychological support system and develop paths dedicated to caregivers in greater
diculty. Further studies are underway to create an ad hoc form for psycho-oncological management in
Hospice and we hope there will be the possibility of implementing this model by also extending it to
management in simultaneous palliative care, adequately preparing patients and their caregivers in the
perspective of a shared path.
Declarations
Author Contributions: Conceptualization, I.G. and M.L; methodology, I.G, M.L, A.F.; software, M.L.;
validation, M.L, A.F.; formal analysis, M.M.; investigation, I.G, M.L. M.M, C.M.; data curation, M.L and E.R;
writing—original draft preparation, E.R, I.G, M.L.; writing—review and editing, E.R, A.F F.F; visualization, I.G,
M.M, C.M, M.P.; supervision F.F.; project administration, E.R.; funding acquisition, M.P. All authors have
read and agreed to the published version of the manuscript.
Funding: This research received no external funding.
Ethics approval and consent to partecipate:The study was conducted in accordance with the Declaration
of Helsinki, and approved by the Institutional Review Board (or Ethics Committee) ofVeneto Institute of
Oncology IOV–IRCCS, Padua, Italy (L04P10). informed consent was obtained from all subjects and/or
their legal guardian(s).
Consent for publication:all subjects and/or their legal guardian(s) give their informed consent for
publication of identifying information/images in an online open-access publication
Conicts of Interest: The authors declare no conicts of interest.
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Figures
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Figure 1
The gure shows the mourning process, starting from the anticipatory mourning phases up to the
management of any mourning disorders. In the phases of anticipatory mourning, the support of the
multidisciplinary palliative care team is essential for both the patient and the caregiver, to provide the
appropriate tools also for the management of actual mourning. The mourning process is divided into 5
phases, not necessarily consequential but all indispensable: denial, anger, negotiation, depression,
acceptance. The diagnosis of mourning disorder occurs at least 6 months after the loss of a loved one, in
the presence of disturbing and persistent symptoms, which compromise the normal functioning of daily
life. Condolence conversations, a natural continuation of taking charge of palliative care during the
hospice stay, can make it possible to identify elements of vulnerability early and direct people to the
competent local services for a targeted psychological path.
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Figure 2
The gure shows distribution based on role in the family unit: most caregivers were sons (51%) or
spouses (31%). Only 9% were not rst-degree relatives or did not belong to the family (2%)
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Figure 3
The gure shows the presence (blue columns) or absence (orange columns) of potential prolonged grief
disorders in caregivers with good acceptance of relative's end of life phase, investigated one month after
the death with the condolence conversation. Among caregivers with a good level of acceptance of their
relative's end of life, a small minority showed problems in grieving (3%) within 1 month of death. The 4%
expressed pervasive nostalgia, intense emotional pain, disbelief, 2% perplexity about the circumstances
of the death, lack of positive memories, feeling of an empty life, confusion about their role in life,
maintaining their interests or identifying their role in the community. None showed excessive avoidance
of memories, diculties with trust and feelings of emotional loneliness
