In palliative care, the genogram is a core assessment tool, not an add-on. The German Society for Palliative Medicine (DGP) provides its own form for this purpose — it records the care network, anticipatory grief, and "unfinished business" before death, and is fundamentally different from bereavement work after death.

Palliative ≠ Bereavement Work — The Pre-Final Perspective

The methodological dividing line is sharp, and it is clinically decisive: Palliative work takes place before death, with the dying person and their system; bereavement work begins after death, with the bereaved. Both use genograms, but they pursue different aims and work with different timeframes.

In the palliative context, the focus is on anticipatory processes: What still needs to be clarified, said, or settled? Who bears which responsibility — in terms of care, legal matters, and emotions? Which relationships need attention before the window of time closes? Bereavement work, by contrast, reconstructs what was and seeks ways to integrate what has been lost.

This distinction is not merely academic — it structures the setting. In the palliative genogram conversation, the dying person is ideally involved themselves, for as long as possible. This changes the tone, pace, and choice of topics.

The DGP Form

The German Society for Palliative Medicine (DGP) has published its own genogram guide, which is considered the de facto standard in German palliative care — from SAPV teams (Specialised Outpatient Palliative Care), inpatient hospices, and palliative care wards to community hospice services. The form structures the assessment into several mandatory fields:

  • Patient at the centre — typically larger and colour-marked, with diagnoses and prognosis timeframe, as far as can be communicated.
  • Multigenerational standard section — three generations, connections, deceased persons with dates. Here, the palliative genogram does not differ from the classical version.
  • Care network layer — a separate, often colour-coded level showing who actually provides care, support, and everyday help. This layer also includes people who are not family members (neighbours, volunteer hospice companions, care services).
  • Legal representatives — power of attorney, guardianship, advance directives with names of authorised persons.
  • Burden indicators — marking the main carer, notes on signs of overload.

The form is deliberately handwritten; many SAPV teams use a laminated template that can be updated with erasable pens. This materiality is intentional: It makes the genogram a shared tool at the patient’s bedside, not a hidden document on a computer.

Mapping the Care Network

Identifying the main carer is methodologically central and often surprising. The legally obvious person — spouse, adult child — is not always the one actually carrying the burden. Often it is daughters-in-law, siblings, or non-related significant others who organise daily life. The genogram makes this reality visible, without passing judgement.

Every functioning care system also needs backup structures — who steps in during holidays, illness, or crisis? The genogram explicitly asks about this second level, as it becomes crucial in acute situations. A care system dependent on a single person is high-risk; the genogram visualises this risk.

Limits of burden for the main carer are a topic in their own right. The DGP standard recommends explicitly recording signs of carer burden — sleep deprivation, social isolation, the carer’s own illnesses — so that the team can provide relief in good time. The Zarit Burden Interview (Zarit et al., 1980) and the Home Care Scale (Gräßel) are useful supplementary tools.

Anticipatory Grief and "Unfinished Business"

Therese Rando systematically developed the concept of anticipatory grief in Treatment of Complicated Mourning (1993) and subsequent publications. Her key insight: Grieving processes do not only begin after death, but often months or years earlier — at the diagnosis of a terminal illness, during the gradual loss of cognitive abilities in dementia, or at the transition to the dying phase. This anticipatory grief affects both the dying person and those around them, and is qualitatively distinct from grief after death.

In the genogram, topic markers can be set — small coloured circles or annotations — signalling where anticipatory grief work is needed: a deceased child whose death was never mourned suddenly resurfaces; an estranged brother with whom there has been no contact for 15 years; an unresolved issue from one’s own biography that needs to be settled.

Hospice pioneer Cicely Saunders coined the term "unfinished business" — unresolved matters that weigh on the dying process if left open, and provide relief when addressed. In the palliative genogram conversation, these topics can be deliberately invited, without being forced. Some dying people explicitly do not want to settle everything — this too is a stance to be respected.

Power of Attorney Constellations

Legal and emotional responsibility within a family often do not coincide. Here, the genogram serves an important function: It makes discrepancies visible before they turn into conflicts.

Typical constellations:

  • The person with legal power of attorney is a distant relative; the main care is provided by a neighbour who has no legal authority.
  • The wife holds power of attorney but is herself cognitively overwhelmed; the daughter makes all the actual decisions, without legal authorisation.
  • Several children are listed as equal legal representatives, but are in conflict — every decision becomes a negotiation.

In the genogram, legal and emotional responsibilities can be entered on two layers — for example, legal representation with a special symbol (legally binding document), emotional main responsibility indicated by line thickness. Where constellations do not match, the team should address this early, ideally with the patient’s involvement, as long as they can communicate.

Application in Different Settings

SAPV team: Here, the genogram is part of the initial assessment. The SAPV coordinator creates it during a home visit; the entire team (doctor, nursing, psychosocial support) has access. Updates are made at least monthly, or ad hoc if changes occur.

Inpatient hospice: The genogram is created during the admission interview, usually with relatives if the patient is no longer able to participate. It remains in the patient’s file and at the bedside (to be handled in compliance with data protection).

Palliative care ward in hospital: Due to the often short length of stay, a focused version is created here, often recording only the key significant others and the current care network.

Community hospice services: Volunteer companions benefit from a condensed form — who are the most important contacts, what are the key issues, where are there conflicts that should not be addressed by volunteers?

Practice Vignette

A 78-year-old patient with advanced pancreatic cancer is referred to SAPV care. During the initial interview, the coordinator creates the DGP genogram. The patient has granted power of attorney to a distant niece who lives in Hamburg and visits every few months — legally clear. However, the genogram reveals a different picture of actual care: a 65-year-old neighbour visits daily, organises shopping, and is listed as the primary contact. The son lives in Munich and calls weekly, but has a strained relationship with his mother due to an inheritance dispute ten years ago. The coordinator addresses the discrepancy early: with the patient’s consent, the neighbour is included in the distribution list for medical information (with signed confidentiality release), and the niece is informed about the actual care situation. When a crisis arises two months later, the team can respond quickly via the neighbour — and anticipatory grief work with the son begins, facilitated by SAPV psychosocial support, while the mother is still alive.

Research Status & Discussion

The DGP recommendation is methodologically conservative but widely accepted — it has crystallised from the practical work of the German palliative movement since the 1990s and is part of the relevant curricula (palliative care training according to §§ 39a/132d SGB V). Sara Lena Lückmann and colleagues have advanced methodological reflection in the Zeitschrift für Psychodrama und Soziometrie (2015) and subsequent publications.

The European Association for Palliative Care (EAPC), in its guidelines — for example, the White Paper on Standards and Norms for Hospice and Palliative Care in Europe (Radbruch et al., 2009/2010) — has formulated similar recommendations, without prescribing a specific genogram format. At the European level, there is a trend towards greater standardisation, but also acceptance of national practices.

A current debate concerns the transition to digital patient records. How can the traditionally handwritten genogram be integrated into electronic SAPV documentation? Pilot projects (including at Charité and University Hospital Bonn) are experimenting with tablet-based solutions that allow handwritten input. GDPR-compliant storage of genogram data — as a special category of personal data under Art. 9 — is a challenge in itself (see Lesson 16).

Effectiveness research specifically on the genogram in palliative care is limited. Indirect evidence comes from research on family conferences in palliative medicine (Hudson et al. 2008, Powazki et al. 2014): Structured family meetings improve symptom control, reduce conflicts in the care system, and increase satisfaction among patients and relatives. In these settings, the genogram is routinely the preparatory and structuring tool.

The role of the genogram in anticipating complicated grief — that is, identifying bereaved persons at increased risk of pathological grief reactions after death — is a subject of controversy. Some authors argue for identifying at-risk families already in the palliative setting and preparing follow-up offers; others warn against pathologising normal grief reactions. There is consensus that a transition from palliative to bereavement support should be possible, without routinely pathologising it.

An ethical question remains as to how far into the system the genogram should reach. The DGP recommendation is measured here: Only what is relevant for care is recorded, not a complete family biography. The maxim "as much as necessary, as little as possible" (data minimisation) is especially important in palliative care, since the time-limited nature of the situation usually does not allow for extensive systemic exploration.

Cross-References

  • Module 3 "Medicine" — interprofessional collaboration
  • Module 3 "Bereavement Work" — follow-up after death
  • Module 4 Lesson 6 "Chronic Illness" — Rolland’s model, caregiver patterns
  • Module 4 Lesson 16 "Digital Genogram and GDPR" — data protection in health data

Further Links