Palliative care: what it is, when the time comes and what it does to a family

“Does this mean they’ve given up on him?”

A daughter said it in a hospital corridor, a few minutes after the doctor mentioned that he would like to introduce her father to the palliative care team. She said it quietly, but with anger in her voice, as if someone had just signed a document she had not wanted to see. Her brother, standing beside her, was very quiet. Later he said that when he heard the word he had felt a secret sense of relief — and then felt like a traitor because of it.

The scene is a composite, but it holds three things I come across again and again when people talk about seriously ill parents: a word that frightens us because we do not know it; two siblings who feel opposite things at the same news; and guilt that attaches itself to each of those feelings. In this post I will explain what palliative care really is, why it often makes sense much earlier than we think, and what happens in the family around it. I am not a doctor and I will not give advice about treatment — that is a conversation for the doctor. I am writing as a marriage and family therapist in training under supervision, interested in what this decision does to relationships.

What palliative care is — and what it is not

The World Health Organization describes palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with incurable or life-threatening illness. It does this by recognising problems early, assessing them carefully and relieving them — physical, psychological, social and spiritual.

There are three things in this definition that most people do not expect. First, palliative care is not the same as care in the last days of life. That is part of it, but not the whole. Second, it does not rule out treating the illness: a person can receive chemotherapy, dialysis or other treatment and palliative support at the same time. Third, the family is not a visitor at the bedside; it is itself part of what is being cared for.

The English doctor Cicely Saunders, who founded St Christopher’s Hospice in London in 1967 and with it the modern hospice movement, used the term total pain for this. She noticed that a patient does not suffer only in the body. They are also hurt by fear, by the loss of their role, by worry about their children, by an unresolved quarrel with a brother, by the question of whether their life has meant anything. If we treat only the physical part, the other three keep hurting — and often make the physical pain worse too.

Early, not only at the end

The most common misconception I hear is that palliative care is for when “there is nothing more to be done”. Research shows the opposite: it brings the most when it comes early.

In 2010, Jennifer Temel’s group published a study in the respected New England Journal of Medicine in which patients with advanced lung cancer were randomly assigned to two groups. One received standard cancer care; the other, alongside it, had regular meetings with a palliative care team from the time of diagnosis. Patients who received early palliative care reported better quality of life and had fewer depressive symptoms, received less aggressive treatment at the end of life — and lived longer on average: median survival was 11.6 months compared with 8.9 months.

We must not read that figure as a promise. It is one study, one type of cancer and one group of patients in an American hospital. But later research, including a large Canadian study by Camilla Zimmermann and colleagues in 2014, confirmed at least the first part: early palliative care improves quality of life. And none has shown that it makes people “give up sooner”.

So why do so many families reach palliative care only in the last weeks? Partly because of the system, partly because of the word. When we hear “palliative”, we hear “the end”. And because we do not want the end, we avoid the word as well.

When is the time for it

When the right moment has come is something doctors judge together with the patient. But there are signs that make it worth raising the question yourself — with the family doctor or with the specialist treating your parent:

• your parent has an incurable illness that is progressing — cancer, heart failure, chronic lung disease, advanced dementia, kidney or neurological disease;
• they end up in hospital or A&E more and more often;
• problems such as pain, breathlessness, nausea or restlessness dominate everyday life more than the illness itself;
• your parent says they are tired of treatment, or asks what lies ahead;
• you or someone else in the family can no longer cope and you do not know who to turn to.

If you recognise any of this, it does not mean the end is near. It only means things are hard enough to deserve the help that exists precisely for this. I have written more about finding your feet when illness changes all your plans in Loss of health: when a diagnosis changes your whole future, and about cancer specifically in When a parent has cancer: what happens in the family.

What happens in the family

In relational family therapy we see the family as a system: when one part moves, they all move. A parent’s serious illness is one of the biggest shifts a family goes through. Roles that were taken for granted for decades start to wobble. A father who always sorted everything out can no longer manage a phone call. A mother who looked after everyone has to accept being looked after.

Alongside this, new roles often get handed out in the family — rarely by agreement, usually by habit. One of the children becomes “the one who knows everything about the medication”. Another becomes “the one who lives nearby and comes every day”. A third becomes “the one who lives far away and rings on Sundays”. These roles are not random: they often repeat the ones the siblings had as children. You can read about how roles get shared out in a family in the knowledge base under family roles, and more broadly about caregiving under caring for an ageing parent.

Palliative care can lighten these roles, because it brings in people whose job is exactly what one child has been carrying alone so far: monitoring symptoms, explaining what is happening, advising on care at home. But it can also expose them. When someone from outside joins the conversation, it becomes visible who has been carrying what — and who has not.

Siblings and the word “giving up”

Let us go back to the sister and brother in the corridor. She heard “they’ve given up on him”. He heard “at last someone will make sure he isn’t in pain”. Both love the same father. The difference is not in the love, but in how each of them expresses it.

The Hungarian-American family therapist Ivan Böszörményi-Nagy wrote about invisible loyalties: the unwritten obligations we feel towards our family, which guide us even when we are not aware of them. For one person, loyalty to a parent means fighting to the end. For another, loyalty means sparing the parent suffering. When these two loyalties meet at the bedside, each sibling can experience the other as a traitor.

This is how a conversation between them might begin a few days later (a composite, not a real person):

“You just agreed. As if you didn’t care.”
“I do care. I just saw him at night when he was in pain. You were at home then.”
“So it’s my fault for not being there?”
“No. I mean we saw different things. And that we’re both afraid of losing him.”
A long silence. “I’m afraid he’ll think we abandoned him.”
“Then let’s ask him. Together.”

A conversation like this does not settle who is right. It settles something else: both stop defending their loyalty against the other and start sharing it. I have written about how alliances and coalitions form between siblings in Siblings, alliances and coalitions: the invisible geometry of the family.

And one more thing: in this kind of dispute, the person being talked about is very often forgotten. Your parent has their own will, their own fears and their own wishes. Talking about what they themselves want is hard, and most families put it off — which is why I have given it a separate post, The conversation about last wishes we all put off — and how to begin it.

Where to start in Slovenia

Slovenia has a national palliative care programme, but in practice access varies from region to region. So I will not list the names of services or eligibility conditions, because they change. I can, however, say where it makes sense to start:

• The family doctor or the treating specialist — say that you are interested in palliative care and ask who provides it where you live. In some areas there are also specialist palliative care teams that visit people at home.
• The community nursing service (patronažna služba) — community nurses are often the first to see how things are at home, and they know what is available locally.
• The social work centre (center za socialno delo) — for questions about home help, care and the rights the family has.
• The Slovenian Hospice Society (Slovensko društvo hospic) — offers free support for people who are dying and their relatives, as well as support for the bereaved.

You do not need to know everything in advance. It is enough to ask the question. Often that is the hardest part — saying the word “palliative” in front of a doctor, because it feels as though you are admitting something.

Exercise: before you see the doctor

Conversations with doctors are short, and relatives often leave feeling they did not ask what they wanted to ask. This exercise takes twenty minutes and you can do it today.

1. Write down what you see. Not the diagnosis, but everyday life: how your parent sleeps, eats, moves, what troubles them most. Three to five sentences.
2. Write down what you are afraid of. One line. “That he’s in pain and won’t tell us.” “That she’ll die in hospital.” You do not have to tell the doctor this, but it helps you know what you are looking for.
3. Choose three questions. For example: “What can we expect over the coming months?” “Would palliative care help Dad, and who provides it here?” “Who do we turn to at night or at the weekend?” You will find more ideas in the knowledge base under questions for your doctor.
4. Ask your parent what they would like to ask. If they are able to, they should come along, or at least know that you are going. If they are not, write down what they have said at some point about what matters to them.
5. After the conversation, write down the answers and send them to your siblings in one message. That way everyone hears the same thing and no one is left as “the one who knows more”.

The last step seems technical, but it is really relational. Many disputes between siblings arise not from different opinions, but from different information.

When palliative care works, something often changes that is hard to measure: the family stops living from one test result to the next and has some room again simply to be together. For a chat over coffee, for an old photograph, for a silence that is not empty.

Where this view falls short

I do not want this post to sound as though palliative care is the answer to everything. It is not.

Not every choice of active treatment is denial. Some people want to fight to the end, and that is their right. If your parent says clearly that they want to try everything, then palliative care is not instead of that but alongside it — and it is not the family’s job to talk them out of it.

Access is not the same everywhere. If there is no palliative team in your region, or the wait is long, that is not your failure. In that case it is often the family doctor together with the community nursing service who can do the most.

Palliative care does not mend old wounds. If your relationship with your parent was difficult, illness will not make it simple. Sometimes it even opens things that had long been closed. Then the support of siblings and professionals does not replace having a space of your own where you can say what you feel — including anger and relief.

A therapist is not a doctor. When it comes to pain, medication, nutrition or treatment decisions, the right person is the doctor. Therapy can help with what is happening inside you and between you.

And if you ever find that you cannot cope any more, that your thoughts are growing darker or that you cannot see a way out, do not wait. In Slovenia, call the mental distress helpline Klic v duševni stiski on 01 520 99 00 (every day from 7 pm to 7 am) or the Samaritans helpline on 116 123 (24 hours a day). In an emergency, call 112.

Grief that begins earlier

When a family accepts palliative care, something else often begins that has a name of its own: Anticipatory grief: grief that begins before death. You grieve for your parent as they were, for a future that will not happen, for the role you had beside them. This is not betrayal. It is the way the mind prepares for loss.

Palliative teams therefore also look after relatives, and by definition the support does not end at death. But even when the care is good, the loss will hurt. I have written about why those around us often underestimate the death of a parent in adulthood in The death of a parent in adulthood: a loss others underestimate.

To return to the daughter in the corridor: palliative care did not give up on her father. It only gave up on the illusion that everything can be fixed. And it left room for what can still be put right — that he is not in pain, that he is not alone, and that his children beside him are not set against each other.

What to remember

• Palliative care is not the same as end-of-life care: it relieves physical, psychological, social and spiritual problems in incurable illness and can run alongside treatment.
• Research shows that early palliative care improves quality of life — it does not mean the family has given up.
• The family is part of the care. Siblings can experience the same news very differently, because each expresses loyalty to the parent in their own way.
• Start with the family doctor or the treating specialist; the community nursing service, the social work centre and the Slovenian Hospice Society can also help.
• Share information equally between siblings, and do not forget to ask your parent what they want.