Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany

Purpose The availability of psychosocial support measures has a significant impact on the quality of life of terminally ill and dying patients and the burden experienced by their relatives. To date, no intervention has specifically focused on promoting interaction within the dyads of the following: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. A national Delphi study was conducted to provide appropriate recommendations for dyadic psychosocial support measures. Methods Recommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility. Results A total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants’ comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations. Conclusion The Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent–adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research. This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206). Supplementary Information The online version contains supplementary material available at 10.1007/s00520-021-06452-x.

The illness situation and resulting dependencies are perceived as role reversal or contrary to the "natural order." In a psycho(onco)logical conversation, meet the perceived role reversal in a non-judgmental way, name it, and address that the feeling of role reversal is common. Explore whether the role reversal is subjectively perceived as burdensome and to what extent it can represent an opportunity. If appropriate, initiate support measures (e.g. delegating tasks to other relatives or friends; offering support from a hospice service).

R-1.3 1
The parent wants to be closer to the patient, whereas the patient wants more freedom.
Offer a psycho(onco)logical conversation to the patient and parent to support them in openly communicating to the dyad partner their respective understanding of and need for autonomy in relation to the current situation and the care provision. In advance, the palliative care team or family doctor clarifies with the patient whether s/he is willing to have a joint conversation with the parent, if the parent also agrees. If appropriate, offer patient assistance in verbalizing to the parent the need for rest. Discuss together, in a psycho (onco)logical conversation, what can be shared and what connects, underlining that this is not a general criticism or rejection of the parent.

R-1.4 1
The patient perceives a strong burden or excessive demand on the parent and feels the need to build up the parent, so that the relationship is experienced by the patient as tense or lacking understanding.
The palliative care team or family doctor determines whether an individual discussion or clarifying family discussion is desired and, if so, whether this might have a relieving effect. If appropriate, offer a family discussion with psychologically trained staff to make different needs transparent and to articulate expectations and wishes. In the conversation, reduce possible tensions between dyad partners by allowing any emotions experienced in the situation to be expressed and by addressing fears and concerns. Offer other support measures (e.g. socio-legal counseling, referral to self-help groups) to distribute the perceived burden.
On the one hand, the patient and the adult child share childhood memories; on the other hand, the adult child gets to know the patient from a new side.
Create space for sharing (childhood) memories through psychology/pastoral care/volunteer accompaniment. Offer psychological support if the sharing of (childhood) memories or the experience of getting to know the parent from a new side is perceived as burdensome or gives rise to historical conflicts. If appropriate, encourage a change of perspective to promote understanding and trust in the current situation. Facilitate psycho(onco)logical support for the patient and adult child, helping them to accept and express reproach.

R-1.6 2
The patient and the adult child experience a new or re-established intensity of the relationship in the current illness situation.
In conversation with the palliative care team or family doctor, clarify the extent to which intensity is appreciated or perceived as burdensome. If desired, enable intensive encounters (e.g. joint activity of the dyad partners; if possible, by admitting the adult child as an inpatient). Offer the adult child sociolegal counseling on topics including caregiver and job leave. Offer support from hospice or social services.

R-2.1 1+2
The parent or adult child wants to talk to the patient about the patient's passing and things that will need to be settled after the death.
The palliative care team or family doctor elicits whether the patient is ready for a joint conversation with the caregiver about dying and anything that needs to be settled after death. If desired by the dyad, the palliative care team or family doctor promotes intra-family communication by encouraging open exchange and mediating the conversation between patient and caregiver. Offer socio-legal and psychological counseling about what might be settled before the patient dies and how the process of clarifying anything that needs to be settled after death can be relieving for both dyad partners. Offer a separate conversation with the caregiver if the patient does not want to talk about dying and death. Broach concerns and fears with the caregiver and, when appropriate, provide flyers on advance directives and health care proxies, and extend offers for further conversation (and, if necessary, bureaucratic procedures).

R-2.2 1+2
The patient does not talk (or avoids talking) about his/her illness or death, also to spare the parent or adult child. Offer the patient and parent support from the palliative care team (e.g. joint consultation with the physician). If applicable, find out why the parent does not want to talk to the patient about his/her illness. Professional caregivers can try to encourage the family caregiver to talk to the patient by intercepting possible fears and worries, but also addressing the patient's and family caregiver's right to remain uninformed.

R-2.4 2
It is important for the patient to discuss with the adult child arrangements concerning death, burial or inheritance, also in order to prepare the adult child. The patient was the primary caregiver for the parent or adult child prior to the current illness situation, and wants to continue to support the family member; he or she is concerned about leaving them behind.
Elicit, together with the patient and caregiver, the extent to which the caregiver is dependent on the patient. If appropriate, support the patient in compiling useful information and recommendations for the time after the patient's death. Offer a clarifying conversation about what additional resources are available to the caregiver and activate the appropriate resources. Offer professional support (e.g. social work) if the situation results in organizational or financial problems for the caregiver. Create confidence and trust that the caregiver can develop his/her own resources to cope. Allow for the experiences of pain and regret.

R-3.2 1
Because of the special qualities of the parentchild relationship, the parent provides care more naturally and accurately than other relatives.
Address role advantages and disadvantages in conversation with the palliative care team/psycho(onco)logy. Explore who fulfills which support role for the patient. Encourage the parent to practice self-care. Point out the advantages of distributing caregiving responsibilities among others in order to maintain the parent's strength.

R-3.3 1
The patient perceives limits in the support provided by the parent or wants to spare the parent because the parent has little endurance due to advanced age; supporting the patient is exhausting for the parent due to age and goes beyond the parent's own strength.
Clarify, through conversation, which tasks the parent can and wants to take on. Encourage the parent to take responsibility for him/herself and show how this will benefit the patient. Ensure a realistic (self-)assessment of the patient's strengths in order to offer suitable help and relief (e.g. professional ambulatory or inpatient care). If appropriate, integrate other professional service providers or relatives to ensure comprehensive care.
The physical care required goes beyond that which was provided in the previous parentchild relationship; this can create new intimacy, but the patient or adult child may also reject it.
Clarify, in conversation with the palliative care team/social work, the extent to which physical care for the patient is perceived as a support or burden. To give the adult child space to discuss physical care, explicitly address that nursing tasks can generate feelings of aversion and are sometimes taken on, in part, due to a perceived social obligation. Determine with the adult child which care activities are "authentically" offered and which trigger inner rejection. Discuss the individual limits of the dyad partners and the danger of losing previous roles when the adult child takes over care, as well as feasible forms of support. Offer solutions for tasks that cannot be fulfilled, such as socio-legal advice on care levels, care leave and the provision of professional support services (e.g. from a home care team). Provide practical guidance from an experienced professional nurse to adult children who want to perform nursing tasks.

R-3.5 2
The adult child can only provide limited support to the patient due to (spatial) distance. The adult child negotiates distance differently (e.g. through sustained faceto-face presence, by coordinating visits with siblings, or by making him/herself available at a distance at all times).
Explore, in a family discussion, the patient's needs and the adult child's resources. In the event that criticisms or feelings of guilt are acknowledged, encourage the adult child to maintain his/her daily routine, even in the present crisis situation. Assist the adult child in developing routines that are relieving and reassuring. Offer socio-legal advice on caregiver leave and special leave, and discuss alternative support and accommodation options (e.g. support from other relatives or friends; home care services and hospice services; or, if applicable, specialized palliative home care, 24-hour emergency support and hospice care). In the event of spatial distance, discuss the possibilities of digital communication.
Where appropriate, determine whether the patient might explore moving closer to the adult child.

R-3.6 2
The patient appreciates the adult child's commitment but does not want to overburden him/her and is understanding of the adult child's other responsibilities.
In a conversation accompanied by a psychological team, encourage open communication about the actual burden and clarify with the adult child whether s/he is truly as burdened as the patient perceives him/her to be. Determine the needs of the adult child with regard to the frequency of contact. Offer further support options (e.g. hospice care, specialized palliative home care and self-help groups for relatives).

R-3.7 2
The adult child feels guilty if he/she can only provide limited support to the patient.
In a psycho(onco)logical conversation, give the adult child space to address his/her fears and feelings of guilt, as well as possible criticisms, and embed them in the current situation. Support the adult child in developing a different attitude towards his/her feelings of guilt. If desired by the adult child, address the patient's feelings of guilt in a psycho(onco)logical conversation. Encourage the adult child to seek sociolegal advice and a home care service. Advise the adult child that exchange with other affected persons or self-help groups can also be supportive.
The adult child's desires take a back seat in the illness situation.
In conversation with the palliative care team, emphasize the importance of self-care to the adult child, and possibly put into perspective overly high expectations that the adult child may have of him/herself. Work out with the adult child what will help him/her maintain his/her strength. Activate resources (e.g. own well-being and sources of strength) and encourage the adult child to create free space or take time out. Encourage exchange with others (e.g. in self-help groups).

R-3.9 2
The patient worries about the future of the adult child after his/her death. Appendix: Consented Delphi statements with underlying hypotheses.
Legend: Dyad 1: terminally ill adult children and parents; Dyad 2: terminally ill parents and adult children. Italics indicate modifications following round 1.