Building your support team: five roles, rarely one person

This longread describes the five roles that families typically distribute around a person in the palliative or terminal phase, how they tend to be assigned in practice, and where Dutch volunteer and professional support can take over when the family alone cannot keep up.

Why one person cannot carry it

The Netherlands counts more than 5 million mantelzorgers (informal caregivers) [MantelzorgNL]. The most consistent finding in surveys of caregivers of seriously ill family members is that the burden, when it falls on one person, is unsustainable beyond a few months. Sleep deprivation, social isolation, and the double load of caring and grieving lead to physical illness in the caregiver — sometimes serious enough to interrupt the care.

The Dutch palliative system, in its design, assumes a network. The huisarts (general practitioner) coordinates the medical side. The wijkverpleegkundige (district nurse) handles in-home nursing care. VPTZ (Vrijwilligers Palliatieve Terminale Zorg) provides trained volunteer presence — 13,000 volunteers nationally [vptz.nl]. The geestelijk verzorger (spiritual counsellor, free since 2024 through the huisarts) supports existential questions. But around all of this, the family still has to organise itself.

The five roles below are the ones that, in our reading of MantelzorgNL and VPTZ materials, recur most often.

Role 1: Primary contact

This is the person who is on the phone with the huisarts, the wijkverpleegkundige, the hospice intake team, the pharmacy, the insurance helpline. They keep the medical chronology in their head: which medication was changed when, what the doctor said on Tuesday, which scan is scheduled for next week. They are the first call when something changes.

In families with several adult children, the primary contact is often the one who lives geographically closest to the patient, or the one with the most flexible work. The risk of the role is invisibility — the work happens on the phone, in the waiting room, in the WhatsApp group, and is rarely seen by the wider family. The primary contact is the person most likely to be told they are "doing nothing" while doing the most.

What helps: a single shared place for medical information — a notebook, a simple shared document, or the readiness folder discussed in the journal — so that the role can be handed over for a weekend without losing the thread.

Role 2: Medical decision proxy

Different from the primary contact. The medical decision proxy is the person formally authorised to make medical decisions if the patient cannot — through a levenstestament (living will) or a written volmacht (power of attorney). In Dutch terminology, this is the gevolmachtigde voor medische zaken or, more broadly, the gevolmachtigde.

The role is legal. It is named in a document, sometimes drafted with a notaris, and it activates only when the patient is no longer wilsbekwaam (mentally competent) for the decision in question. Until then, the patient decides; the proxy waits.

The proxy is not necessarily the closest relative. Many people choose, deliberately, someone who is calm under pressure, who can read a wilsverklaring and act on it, and who is not so emotionally close to the patient that the decision becomes unbearable. A spouse may be the obvious choice; an adult child or a long-time friend may be the better one.

Crucially, the proxy needs to know they are the proxy, what the patient wants, and where the documents are kept. A volmacht in a drawer that no one can find at the moment of need is, operationally, no authorisation at all.

Role 3: Logistics and household

The least glamorous role and one of the most necessary. Logistics and household covers: who does the shopping, who cooks, who manages the cleaning, who arranges the laundry, who picks up and drops off the children if there are children, who handles the pets, who pays the bills that still need to be paid, who deals with the post.

In a long illness, the household side of life does not pause. It piles up. Families that ignore it for the first few weeks often find themselves drowning in unwashed clothes and unanswered letters by the second month — at exactly the point when the patient's needs are increasing.

What works in practice is a written rota — even a rough one. Friends and neighbours are often willing to help and often do not know what to do; "could you bring a meal on Wednesdays" is a far easier ask than "let us know if you can help." Apps like Mealtrain or simple shared calendars are used for this in many Dutch families. The gemeente in some cases provides huishoudelijke hulp (household help) under the Wmo (Wet maatschappelijke ondersteuning), particularly when the patient is the household manager.

Role 4: Emotional support

The person, or people, who hold the emotional weight. They sit with the patient; they listen; they hold the family's anxiety; they receive the calls at midnight from the relative who cannot sleep.

In many families, this is one of the spouse's roles. In others, it is a sister, a close friend, a hospice volunteer, the geestelijk verzorger. Often it is shared between several people, each holding a different piece — one person for the existential conversations, another for the everyday mood, another for the children.

This role is especially exhausting because the person doing it absorbs the grief of others and frequently has nowhere to put their own. The Richtlijn Rouw of Pallialine recommends that informal caregivers in this role be offered their own access to a rouwbegeleider (grief counsellor), POH-GGZ (mental health practice nurse via the huisarts) or peer support such as Humanitas. The geestelijk verzorger, since 2024 free through the huisarts, is one of the most underused resources in this category.

A specific risk: the emotional support role often overlaps with the primary contact role. The same person ends up holding both the medical chronology and the family's feelings. Where possible, separating them — even partially — protects the person doing both.

Role 5: Children, extended family, and outside communication

If there are children in the household, someone needs to hold their experience: explaining what is happening at an age-appropriate level, keeping their routines as stable as possible, noticing when they need attention and when they need space. This is often a parent, sometimes a grandparent or aunt or uncle, sometimes — particularly for older children and teenagers — a school counsellor or Stichting Achter de Regenboog volunteer trained in childhood bereavement.

Beyond the immediate household, someone needs to be the contact for the wider family and friends — the cousin who calls weekly, the colleague who wants to send flowers, the friend abroad who needs to know whether to fly in. Without this role, the primary contact ends up answering each of these calls personally; with it, the wider circle is updated through one person, and the primary contact can stay focused on the medical side.

This is also the role that fields the complicated relationships — the sibling who has been estranged, the ex-spouse, the adult child who lives far away. Holding the door open for these people without taking on the full weight of their reactions is its own kind of work.

How families typically distribute the roles

There is no single right configuration. A few patterns recur in the Dutch palliative context.

Spouse + one adult child. The spouse takes emotional support and primary contact; the adult child takes logistics and acts as proxy. This works well when the adult child lives nearby and has flexible work. It overloads the spouse if the illness runs long.

Two or three siblings. The eldest, or the closest, takes primary contact and proxy; the others rotate logistics and emotional support; one takes responsibility for outside communication. This works well when the siblings communicate well and badly when they do not. Old family dynamics tend to surface.

A patient who lives alone. Often a close friend or neighbour takes the primary contact role; a more distant relative takes the proxy role on paper; logistics and emotional support are filled by a combination of friends, the wijkverpleegkundige and VPTZ volunteers. This configuration is more common than people think; the Dutch system is set up to support it.

An expat patient. Family abroad cannot easily fill any of the roles requiring physical presence. A Dutch friend, neighbour, or colleague often becomes the primary contact and sometimes the proxy; the embassy and the uitvaartondernemer (funeral director) take parts of the outside-communication role; family abroad fill the emotional role from a distance, often supplemented by a stervensbegeleider (death doula) or rouwbegeleider locally.

The principle shared across configurations: the roles are explicit. Implicit assignment — where it is "obvious" who will do what — is where families come unstuck. Even a brief, awkward conversation about who is doing which is worth more than the assumption that it will sort itself out.

When to bring in volunteers

Many families wait too long to ask for VPTZ volunteer support. The training materials are explicit on the point: VPTZ is not a last-resort service. A volunteer can come in for a few hours a week early in the palliative phase to give the family a regular break, then increase presence as the situation evolves, including night watches (nachtwaken) in the terminal phase.

Indications that it is time:

• The primary caregiver has not slept a full night in more than a few days.
• No one in the family can leave the house without anxiety.
• The patient is reaching the point where being alone for any length of time is no longer safe.
• The family is having to choose between the patient's care and the children's needs.

Requests are made through the local VPTZ-organisatie or via the huisarts and wijkverpleegkundige, who know the volunteers in the area. The service is free.

For families whose needs go beyond presence — coordination, life review, vigil planning, emotional preparation for the loss — a stervensbegeleider (death doula) is the equivalent paid role. The profession is not yet formally regulated in the Netherlands; rates are typically €40–€85 per hour [unverified 2026]; some hours may be reimbursed via PGB (persoonsgebonden budget) where there is a Wlz "palliatief" indication.

In the app

In the Personal Portal you map your support team by role — primary contact, medical proxy, logistics, emotional support, outside communication — and record contact details for the professionals and volunteers involved. The map is visible to the people you choose, so the team knows who is doing what before it has to.

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Closed beta — access by invitation.

Sources

1. VPTZ Nederland — volunteer presence in palliative care, 13,000 volunteers nationally. https://www.vptz.nl
2. MantelzorgNL — information, advice, and support for informal caregivers in NL. https://www.mantelzorg.nl
3. Pallialine / IKNL — Kwaliteitskader Palliatieve Zorg and Richtlijn Rouw. https://palliaweb.nl