Advance Care Planning in India: Wishes, Documents and Conversations

What advance care planning means

It is a series of conversations, and sometimes documents, that cover:

• What matters most to the person: being at home, being free of pain, being with family, spiritual practices, independence, not being a burden, or any other values.
• What they fear: pain, being alone, being kept alive on machines, being unable to recognise loved ones, financial burden on family.
• What they would want in different situations, such as a severe stroke, advanced dementia, kidney failure or a life-limiting illness; for example, how they feel about hospital admission, intensive care, ventilators, resuscitation, feeding tubes, dialysis or antibiotics near the end of life.
• Who should speak for them if they cannot, and who should be consulted.
• Where they would prefer to be cared for and where they would like to spend their last days, if there is a choice.
• Practical and spiritual matters: rituals, religious or cultural needs, people they wish to see, music or readings; see caring with religion and culture in mind.
• Wills, property and finances, which are related but separate; see legal basics: wills and power of attorney and managing a parent's money safely.

Preferences may change over time, so the plan is reviewed, not fixed forever.

Why it can help

• It gives the person a sense of control and respect.
• It reduces the burden and guilt on family members, who need not guess.
• It helps doctors understand goals and offer care that fits.
• It can prevent unwanted treatment, and also prevent the opposite, giving up too early, when the person would have wanted treatment.
• It opens honest family conversations that often bring people closer.

Who might start the conversation, and when

There is no perfect time, but some are better than others: - When the person is well, not in the middle of a crisis; for example, at a quiet family moment, after a friend's illness or funeral, when updating a will, or at a regular check-up. - After a new diagnosis, a hospital stay, or a change in health. - Before major surgery, or when someone is moving into a different care arrangement. - When the person raises it themselves. Listen.

Some parents never wish to discuss it, and that choice should be respected. Others are relieved to be asked.

How to open the conversation, gently

• Choose a calm, private time and place, without rush, ideally with one or two family members rather than a crowd.
• Start with your own feelings and curiosity: "I have been thinking about what would matter most to you in the years ahead. I would like to understand, so that I can look after you the way you want." Or: "A friend's father was very ill last month and the family did not know what he would have wanted. It made me think of us."
• Ask open questions and listen: "What is important to you now?" "What worries you about the future?" "Is there anything you would not want?" "Whom would you want to make decisions for you if you could not?"
• Do not push or argue. If the person is reluctant, say that the door is open and try another day.
• Accept emotion. Silence, tears, anger or jokes are all normal responses. Sit with them.
• Do not promise what you cannot be sure of, but you can promise to listen and to do your best to follow their wishes.
• Involve other family members respectfully, so that everyone hears the same thing; see sharing care among siblings and talking to parents about ageing and care.
• If the person has dementia, begin as early as possible, while they can still express views; later, use what you know of their values to guide decisions with the doctor; see dementia stages and what each needs.
• Consider a doctor's or counsellor's help. A geriatrician, palliative care specialist or trained facilitator can guide the discussion; see palliative care at home: what it is and how to arrange it and comprehensive geriatric assessment explained.

Conversations with the doctor

Ask the doctor, with your parent present if they wish: - What is the diagnosis, and what is likely to happen over time (the outlook), in honest but kind terms? - What are the treatment options, their benefits and burdens, and what happens if we choose not to have a particular treatment? - What would intensive care, a ventilator, resuscitation, dialysis or a feeding tube involve for someone like my parent, and what is the likely outcome? - What can be done to keep my parent comfortable, whatever is decided? - Who can help us with care at home and with symptoms at any hour?

Doctors differ in how openly they discuss prognosis; ask politely for the information your parent wants. Your parent has the right to say how much they want to know and who should receive information.

Documents: what exists in India, in general terms

Rules in this area have developed through court judgments and guidelines and may be updated; check with a lawyer and the hospital's legal or ethics team about current requirements, formats and how they apply in your state. In general terms:

• Medical decision-maker and information: families commonly decide together, but having the person name a trusted spokesperson, and informing the doctor and other relatives, avoids conflict.
• Advance medical directive ("living will"): the Supreme Court of India has recognised that an adult with capacity may, in advance, record wishes about withdrawing or withholding life-sustaining treatment in specific circumstances, and set out a process for how such documents are made, attested, stored and acted on; the procedure was simplified in later orders. Practical steps vary, and hospital policies differ. A lawyer or the hospital can explain how to prepare and register one correctly, and which authority holds it.
• Hospital processes: medical boards or ethics committees may be involved before treatment is withdrawn; ask the hospital how this works.
• Power of attorney for property or finances is a different document, and it normally ends if the person loses capacity unless it is drafted otherwise; see legal basics: wills and power of attorney.
• A will deals with property after death, not medical care.
• "Do not attempt resuscitation" decisions are medical orders made by the doctor with the person or family; ask what the hospital's policy is.

Whatever documents are made, keep copies with the family, the doctor and the hospital, in an easily found place, and tell people where they are; see emergency contact card and medical summary and keeping a health record at home.

A simple "what matters to me" page

If formal documents feel too heavy, a one- or two-page note in the person's own words is valuable and can be updated easily. It may include: - Things that make life worth living for me. - Things I would find hard to accept. - Where I would prefer to be cared for. - Whom I trust to speak for me, and whom I would like with me. - My feelings about hospital treatment, life support and resuscitation, if I wish to say. - Religious or personal wishes at the end of life. - Anything I want my family to know.

Date it, sign it if the person wishes, and share it.

When families disagree

Disagreement is common and usually reflects love and fear. Helpful steps: listen to each person's concern; return to what the person wanted; hold a family meeting with the doctor; ask a palliative care or ethics team for a facilitated discussion; and allow time. See grief and guilt in family carers.

During serious illness: comfort and support

Planning ahead does not replace compassionate care. Palliative care focuses on comfort, symptom relief and support for the whole family, at any stage of serious illness, not only at the very end; see palliative care at home: what it is and how to arrange it, palliative bedroom comfort and end-of-life care at home. Families may experience grief before and after a death; see grief and bereavement in later life. If you or your parent feel overwhelmed or hopeless, speak to a doctor or counsellor; Tele-MANAS (14416) is India's national mental health helpline (check the current number), and call 112 in an emergency.

Reviewing the plan

Revisit it after a new diagnosis, hospital stay, major life change or at least once a year. Preferences can change. Make sure new doctors and family members know.

When to ask a professional

Ask a doctor, geriatrician or palliative care team to help with the medical side, a lawyer for legal documents, a counsellor or spiritual adviser for emotional and spiritual support, and the hospital social worker for local procedures. In an emergency, call 112; do not delay emergency care because a document cannot be found.