The Transition to Palliative Care: Facing the Question "Is There No Hope Left?

What does the transition to palliative care mean, and how can families cope? A warm guide to hope, guilt, talking with the patient and differences by age.

You are sitting in the doctor's office. In a calm voice, the doctor explains that from now on the focus of your relative's care will be on comfort and easing symptoms, and that they will move forward together with the palliative care team. You hear some of what is said and miss some of it. When you step out into the corridor, a single sentence goes round in your head: "So there is no hope left." For many families, news of the transition to palliative care is one of the hardest moments of the whole illness. Shock, fear, anger, guilt and a sadness that is hard to describe can all arrive at once. In this article I look at what palliative care is and is not, the feelings families commonly experience during this transition, how you can talk with the patient and with one another, and how you can carry yourself through this period.

What Is Palliative Care, and What Is It Not?

Palliative care is an approach for serious and progressive illnesses that aims to ease a person's pain and other distressing symptoms, protect their quality of life and support their family as well as the patient. It may be provided by a team of doctors, nurses, social workers and psychologists. In Turkey, many hospitals have palliative care units; in some cases support can also be provided through home care services.

The most common misconception about palliative care is that it means "nothing more will be done". In fact, palliative care is a period in which a great deal is done for the patient: controlling pain, easing breathlessness, regulating sleep, reducing anxiety, and keeping the family informed and supported. In some illnesses, palliative care can also be given at the same time as treatments aimed at the illness itself. Always ask the treatment team exactly what palliative care means in your relative's case, which treatments will continue and what will change.

This information will not on its own take away the feeling that "they've given up". But it can help the family see that their loved one is still someone being cared for with great attention.

What Feelings Does the Transition to Palliative Care Stir Up in the Family?

Shock and disbelief

Families can be taken aback by this news even when they have been expecting it. Thoughts such as "He was fine only last month" or "The doctors might be wrong" are the mind's attempt to accept a heavy reality gradually. This first reaction is entirely understandable given the scale of what is happening. Some family members turn to seeking other opinions at this stage; this too is part of the effort not to lose the person they love.

Anger

Anger can be directed at the doctor, the hospital, the health system, God, even the patient: "Why wasn't it noticed sooner?", "Why didn't they try harder?" Anger is often helplessness and the fear of loss turned outwards. Noticing your anger can help you carry it without unloading it at the bedside or in arguments with your siblings.

Guilt

Thoughts such as "If only we had taken her to another hospital" or "If only I had pushed him to see a doctor sooner" can wear family members down deeply. At the same time, the feeling "I want her to be at peace now that she's so tired" may arise, and this creates a separate kind of guilt. Wanting the suffering of someone you love to end does not mean you do not love them; on the contrary, it is a form of love.

Anticipatory grief

Grief that begins before a loss has happened is called anticipatory grief. Thinking about your loved one's absence while they are still with you, and imagining future festivals and weddings without them, brings a heavy sadness. This grief does not remove the pain at the moment of loss; but knowing that what you are feeling has a name can help you feel less alone. I have discussed the general course of grief in the article on the grieving process.

Relief

After a long and exhausting period of treatment, some families feel an unexpected relief with the transition to palliative care. No longer waiting every day for a new test or a new treatment decision, and knowing the patient's pain will be better managed, can create some breathing space. This relief, too, is nothing to feel guilty about.

The Question "Is There No Hope Left?"

The transition to palliative care changes the shape of hope; it does not remove it altogether. At the beginning of an illness, hope is usually directed at recovery. In this period, hope can attach itself to different things: a day without pain, a visit from a grandchild, a film watched together, being able to say something that needs to be said, seeing the garden of the house in the village one last time, tasting a favourite dish.

Making room for these different hopes is meaningful for both the patient and the family. "How much time does he have left?" is a very natural question; but it is one that even the doctor cannot answer with certainty. Instead, the question "How can we make today, this week, better for her?" can bring the family back to the present and to closeness. I have written separately about the balance between hope and realism in illness in the article on hope in illness.

The transition to palliative care is not the end of hope; it is hope changing direction, from recovery towards closeness, meaning and comfort.

How Should You Talk With the Patient?

In Turkey, many families prefer not to tell the patient how serious the situation is: "Better he doesn't know, so he won't be upset." This choice comes from love and a wish to protect. But many patients already sense what is happening in their own bodies, and the silence of those around them can leave them even more alone. How much a patient wants to know varies from person to person. The most respectful way to find out is to ask them.

The sentences below are fictional examples.

Sentences you may want to avoid saying to the patient:

• "There's nothing wrong with you, you'll be home soon." (When the patient senses their condition, their trust is shaken and the chance of a real conversation is lost.)
• "The doctors said there's nothing more they can do." (It conveys the meaning of palliative care wrongly and deepens the feeling of being abandoned.)
• "Don't let your spirits drop, be strong." (It closes off the patient's chance to express their fear and sadness.)

Sentences you might try:

• "The doctors said that from now on they'll focus on easing your pain and discomfort. What do you think?"
• "If you have any questions, let's ask them together. We'll talk about as much as you want to know."
• "Is there anything you'd like that would make you more comfortable?"
• "If there's anything you want to tell me, I'm here."

Patients sometimes want to talk about death, state their last wishes, seek and offer forgiveness (what in Turkish is called helalleşmek), or make peace with a relative. Accompanying these conversations rather than avoiding them can lighten the burden that both the patient and the family will carry in the years ahead. I have written in more detail about what can be said to someone with a terminal illness in the article on what to say to a terminally ill person.

The Transition to Palliative Care by Age

If the patient is a child

Palliative care for a child is one of the hardest experiences a family can go through. During this period, protecting the child's play, curiosity and closeness to the people they love becomes the priority. Children understand death differently depending on their age; sometimes they sense much more than adults realise. Paediatric palliative care teams and child mental health professionals can support the family in planning how to talk with the child.

If the patient is a teenager

Young people want to have a say in their own lives. During this period, asking about their preferences, such as whom they want to see, what music they want to listen to and how they want to say goodbye to their friends, is a way of respecting who they are. Teenagers often hide their own fears to protect their parents, and parents stay silent to protect their child. This mutual silence can leave both sides alone. Finding a space where the young person can talk with a nurse, psychologist or another trusted adult outside the family can help them express what they cannot say in front of their parents.

If the patient is an adult

For an adult with children, the greatest worry is often for those who will be left behind. Writing letters to their children, recording videos and completing financial and legal arrangements can give them a sense of control and meaning. Between spouses, too, unspoken words, worries about the future and questions about how the one left behind will live may come up during this period. Although these conversations are hard, for many couples they can become moments of deep closeness.

If the patient is an older person

For older patients, dignity, respect and autonomy remain crucial during this period. Finding out and respecting their preferences, such as where they want to be, which religious or cultural rituals matter to them and whom they want to see, gives meaning to the final period. Some older people want to be at home in their own bed; others prefer to stay in hospital so as not to be a burden on their family. Talking with the treatment team about the circumstances in which this preference is possible also gives the family direction.

Different Reactions Within the Family, and Protecting Yourself

Differences of opinion

The transition to palliative care can also bring differences of opinion among family members to the surface. One sibling may want to go to another hospital or see another doctor, while another may not want the patient to be put through any more. A family member who lives abroad or far away may take longer to accept what is happening. These differences are often different expressions of love.

During this period, choosing a family spokesperson, holding regular meetings with the treatment team and keeping the patient's own wishes at the centre can help reduce conflict. When medical decisions are involved, it is important to take into account the patient's own wishes where possible or, if not, the wishes they expressed beforehand.

How can you carry yourself through this?

• Sleep, food and short breaks are not luxuries. During long hospital days it is easy to forget your own body's needs. Share the time at the bedside among family members.
• Tell someone how you feel. A friend, a family member, or the psychologist or social worker on the palliative team.
• Don't try to make every moment "meaningful". Sometimes simply sitting quietly side by side is enough.
• Get your information from a single source. Suggestions from others, such as "Take her to this hospital" or "Try this treatment", can create confusion and guilt. Write down your questions and direct them to the treatment team.
• Allow yourself to cry and to laugh. Laughing at a memory in the hospital room and crying in the corridor are both part of this time.
• Give the children at home age-appropriate information. A child whose grandmother or father is in palliative care having the chance to say goodbye to the person they love can help them grieve more healthily later on.

When Should You Seek Professional Support?

Intense feelings are to be expected during the transition to palliative care. However, in the following situations it may help to get support from a mental health professional:

• Sleep, appetite and daily functioning being clearly disrupted for weeks
• Intense guilt or anger damaging family relationships
• Finding it extremely hard to go to the patient's side or to talk with them
• Marked changes in the behaviour of the children at home

If the patient or a family member has thoughts of ending their life, or says things like "I can't bear this pain, I want to die", do not carry this alone; tell the treatment team and, in an emergency, call 112 (emergency services). For intense anxiety or low mood in the patient, an assessment by the palliative team and a psychiatrist is important.

How Is the Palliative Care Period Addressed in Therapy?

Psychological support can be an important part of the palliative care team. For the patient, therapy offers a space to talk about their fears, regrets, the things they want to say and questions about the meaning of their life. For the family, it is possible to work on anticipatory grief, guilt, anger and conflict within the family.

Within cognitive behavioural therapy, thoughts such as "I didn't do enough" or "I'm guilty because we gave up" can be examined. Work can be done on tolerating uncertainty, regulating emotions and keeping daily life going. Support can also continue through the grieving process after the loss.

Individual therapy can be a space where a patient's relative can make room for their own feelings during this heavy time. For family members who cannot leave the patient's side for long, sessions can also take place online.

Frequently Asked Questions

Does moving to palliative care mean all treatments are stopped?

Not always. The aim of palliative care is to ease symptoms and protect quality of life; in some cases it can also be given alongside treatments aimed at the illness. Asking the treatment team which treatments will continue in your relative's case is the way to get the most accurate information.

Should we tell the patient that they are moving to palliative care?

This depends on how much the patient wants to know. Asking them what they would like to know is a respectful starting point. When planning this conversation, you can get support from the doctor and psychologist on the treatment team.

What should I talk about when visiting my relative in palliative care?

You do not have to talk about heavy subjects at every visit. Chatting about old memories, family news and the things they love reminds them of who they are. When you do not know what to say, holding their hand or sitting quietly beside them can be enough.

I feel guilty during the palliative care period. Is this normal?

Yes, it is a very common feeling. Past decisions, the exhaustion you feel now or a wish for relief can all create guilt. Remembering that this feeling comes from your love, and seeking support if needed, can lighten the load.

• #palliative care
• #family caregiver
• #anticipatory grief
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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