Preparing isn't giving up: how anticipatory acts help

This article is about that question. It draws on Dutch palliative care literature, the experience of VPTZ volunteers and geestelijk verzorgers (spiritual counsellors) who sit with thousands of dying people each year, and on the published work of palliative researchers including Ira Byock and the Dutch Pallialine guidelines on existential and spiritual care.

It is not a piece arguing that everyone should prepare. Some people choose not to, and that is a valid response to mortality. It is a piece about what hospice professionals actually see when people do prepare, and why preparation is one of the more counterintuitive acts of hope.

The paradox

The intuition that preparation equals surrender is strong because it points at something real. To plan for the end is to admit, in writing or in conversation, that the end is approaching. It is to say a sentence — "when I die" rather than "if I die" — that the body has been working hard to avoid. The avoidance is not weakness. It is the protective work of the mind under threat.

But the same body, given the chance, also does the opposite. It rehearses. It imagines. It plans. The Dutch palliative tradition recognises both impulses and treats them not as opposites but as two faces of the same instinct: to maintain agency in the face of what is happening.

Preparation, in this reading, is not the surrender of hope. It is hope redirected — from a hope that the situation will not be true, toward a hope for what can still be done well in the time that remains.

What hospice professionals see

Across multiple decades of palliative care literature, a consistent observation appears. People who have prepared — practically, emotionally, relationally — describe their final months differently from those who have not. The pattern is not universal, and the studies are not all of equal quality, but the direction is steady.

Three findings recur in the Dutch and international palliative literature.

Less anxiety in the final weeks. When practical things are organised, the mind is freed to be present to what is happening. The Pallialine guidelines on existential care describe this as a reduction in the "background noise" that competes with the work of meaning-making at the end of life.

More agency, not less. People who have made decisions about treatment intensity, about resuscitation, about where they want to die, about who they want present, report a stronger sense of having authored their own ending. The KNMG and NVVE materials on advance care planning frame this explicitly as a restoration of patient autonomy.

No evidence that preparation shortens life. This deserves emphasis because it is the unspoken fear behind much resistance to preparation. The clinical literature is clear: writing a wilsverklaring does not bring death closer. Talking about a funeral does not make one happen sooner. The studies that have looked for such effects have not found them.

What the research does suggest is the opposite of the fear: in some cohorts, palliative-care patients who engage in advance care planning live somewhat longer than those who do not. Why is debated. The simplest hypothesis is that lower anxiety, better symptom control, and clearer communication with the medical team produce better physical outcomes.

The reframe: preparation as hope

It helps to make explicit what people are actually preparing for.

A person writing a wilsverklaring is not preparing to die. They are preparing for the days, possibly years, when they may no longer be able to speak for themselves. The document is for those days. It speaks on their behalf when they cannot.

A person planning a funeral is not preparing to be dead. They are preparing for an event that will happen to the people they love, and they are reducing the burden those people will carry on the worst day of their lives.

A person recording stories for their grandchildren is not preparing to be absent. They are preparing for the moments when a fourteen-year-old will want to know who their grandfather was, and there will be a voice to answer.

Each of these acts is forward-looking. Each is for someone — a future self, a family, a community. They are acts of love in the present that anchor themselves in a time after the present has ended.

Concrete acts that increase agency

The following are taken from the standard practice of Dutch palliative care, VPTZ volunteer training, and the wensenboekje materials produced by NVVE and Patiëntenfederatie.

Writing letters. Short or long, to a partner, a child, a friend, an estranged sibling. Letters can hold what conversation cannot. They can be read once, or kept and re-read. The act of writing is often more useful to the writer than the letter is to the reader.

Recording stories. A voice memo on a phone is enough. A grandparent reading a children's book aloud, the story of how you met your partner, your favourite recipe, the year you started your job, what your mother used to say at the dinner table. The recording does not have to be polished.

Choosing how the room looks. People dying in hospice or at home can have considerable influence over the space they die in. Light, music, smell, who sits in the chair. The Pallialine guidelines on care in the last days encourage caregivers to ask the patient about these preferences explicitly.

Naming who decides what. The levenstestament names a person to act on your behalf for finances and care. The wilsverklaring names treatment preferences. The decision of who to entrust is itself an act of agency, regardless of when or whether the document is invoked.

Writing the funeral instructions. Music, words, who speaks, burial or cremation, what is read. In Dutch funeral practice, the more specific the wishes, the more closely the family can honour them. The lack of wishes is not freedom for the family; it is uncertainty under pressure.

Each of these is concrete. None is ceremonial. Each requires an evening, perhaps a weekend, not a months-long project.

The Five Conversations: preparation that lives in the present

The American palliative physician Ira Byock identified five sentences that, in his observation across many years of hospice work, people most often want to say before they die. He called them the Four Things That Matter Most, later expanded to five.

• "Forgive me."
• "I forgive you."
• "Thank you."
• "I love you."
• "Goodbye."

Byock's observation is that these sentences are not deathbed performances. They are the unfinished business that, when left unfinished, makes dying harder. When they have been said, often more than once, in normal circumstances, the dying person has more room for everything else.

What is striking about the Five Conversations as preparation is that they are not future-tense. They happen now, in the relationship as it is, between two people who are both alive. The "preparation" is the conversation itself. The benefit, if there is one, is felt immediately, not posthumously.

This is one of the strongest answers to the "preparing means giving up" intuition. The Five Conversations are preparation in the sense that they prepare both people for what is coming, but they are also fully alive in the present moment. They are not about endings. They are about the relationship in the time that is.

Stories from palliative care

Dutch palliative literature is careful with anecdotes — the privacy of dying people is protected, and clinicians are trained not to tell stories that identify individuals. But the published case studies in Pallialine, in VPTZ training materials, and in the work of geestelijk verzorgers contain consistent threads.

A man who completes his wilsverklaring describes a sense of "having finally said it." A woman who writes letters to each of her three children describes the writing itself as the meaningful act. A couple who plan the funeral together find that they are also planning the months between now and then. A patient who chooses the music for the room in which they will die finds that they listen to it in the meantime.

The pattern is repeated enough that VPTZ training names it explicitly: preparation, when chosen freely, often becomes its own form of meaning. The dying person is not waiting. They are making something.

Acknowledgement: not everyone wants to prepare

There are people who choose not to prepare, and the choice is theirs. Some have no need. Some find the planning more frightening than the unknown. Some have a worldview, religious or otherwise, in which planning interferes with how they want to meet the end. Some are too tired.

Forcing preparation on a person who does not want it is its own kind of harm. The Pallialine guidance on existential care is explicit: the patient sets the pace. A geestelijk verzorger or a VPTZ volunteer will offer the conversation, and step back if it is declined.

The point of this article is not that everyone should prepare. The point is that the assumption "preparing means giving up" is not supported by what palliative professionals actually see. For those who want to, preparation is an act of presence, not absence — of authorship, not surrender.

In the app

In the Personal Portal, Stages 6 (Words That Stay) and 7 (Your Story) are not about preparing for an end — they are about leaving a beginning for the people who continue. (A writing companion is in development and will be available later in the beta.)

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Sources

1. VPTZ Nederland — Vrijwilligers Palliatieve Terminale Zorg, training materials and observations from volunteers in palliative home care. https://www.vptz.nl
2. Pallialine / IKNL — Richtlijnen Zingeving en spiritualiteit in de palliatieve fase, clinical guidelines on existential and spiritual care. https://palliaweb.nl
3. Centrum voor Levensvragen — geestelijke verzorging thuis, free since 2024 via huisarts. https://www.centrumvoorlevensvragen.nl