Goals-of-Care Conversations in Cancer

A goals-of-care conversation is not one talk about dying. It is a working session that sets what treatment is trying to achieve right now. It answers three questions. What does the patient understand about the illness? Which outcomes matter most to them? Which tradeoffs are worth accepting to get those outcomes?

The answers then drive real orders. They shape whether the next scan gets booked, whether a new drug starts, whether an ICU transfer is on the table, and when hospice gets called.

NCI's PDQ summary for clinicians shows how wide the gap can be. In the CanCORS study, 69% of people with advanced lung cancer and 81% of those with advanced colorectal cancer were unaware that chemotherapy was not likely to cure them. Among people with incurable lung cancer, 64% did not understand that the radiation prescribed was not curative.

The mismatch runs both ways. In one study, 236 patients with advanced cancer and their oncologists were each asked to estimate the chance the patient would be alive in 2 years. Sixty-eight per cent of the pairs gave discordant answers, and nearly all the discordant patients were the more optimistic one. Of those patients, 89% were unaware the disagreement existed. Both people walked out believing they agreed.

That gap changes what happens next. PDQ reports that patients who believed their cancer was likely curable were much less likely to enroll in hospice, with an odds ratio of 0.25.

The PDQ summary on communication in cancer care names the structures oncologists are trained on. Knowing them helps you follow the shape of the visit.

Ask-Tell-Ask. The clinician first asks what you already understand. Then they tell you the main message briefly, without jargon. Then they ask again to check what you took away. If nobody asks you the first question, offer it: "Here is what I think is going on."

NURSE. This is a set of five moves for responding to emotion. Name the feeling, Understand it, Respect the effort the person is making, Support them by promising to stay involved, and Explore what is behind the reaction.

SPIKES. This is the six-step protocol for bad news. Setting, meaning arrange privacy. Perception, meaning find out what the patient believes. Invitation, meaning ask how much detail they want. Knowledge, meaning give information in small pieces. Empathy, meaning respond to the reaction. Summary, meaning recap and set the next step.

PDQ documents how late these conversations usually land. In one analysis, the median time between signing a do-not-resuscitate order and death was 0 days for people who died in the hospital, and 30 days for people who died as outpatients. Hospice use rose over time, yet a growing share of hospice stays lasted fewer than 7 days.

Treatment patterns tell the same story. Rising numbers of patients start a brand-new chemotherapy regimen within 30 days of death. PDQ also notes that chemotherapy in the final week of life was linked to worse quality of life, not better.

Researchers track this with a specific set of end-of-life quality measures. They include ICU admission within 30 days of death, use of a mechanical ventilator, attempts at CPR, emergency department visits, and both hospice referral rate and length of stay.

Ask for the conversation when any of these show up:

• A scan shows growth on a treatment you are already taking.
• A new regimen is being offered after two or more prior lines have failed.
• There have been two or more unplanned hospital stays in three months.
• Function is dropping, such as spending more than half the day in bed.
• Anyone on the team would not be surprised if the patient died within a year.

Documents record decisions. They do not make them. NCI describes the main ones.

A living will states which treatments you want if you cannot speak for yourself. It can address ventilators, dialysis, tube feeding, withholding food and fluids, do-not-resuscitate orders, and organ donation. It takes effect only when you can no longer make your own medical decisions.

A durable power of attorney for health care names a person to decide for you. It is also called a health care proxy or medical power of attorney. It also takes effect only when you lose the ability to decide.

A do-not-resuscitate order tells the team not to attempt CPR if breathing or the heartbeat stops. It is a medical order, not just a wish on a form.

One practical warning from NCI: each state writes its own advance directive laws, and a form that works in one state may not be honored in another. If treatment happens across a state line, ask which state's form the hospital accepts.

Medicare publishes hard rules, and knowing them prevents a lot of guessing.

• Both the hospice doctor and the regular doctor, if there is one, must certify a life expectancy of 6 months or less.
• Coverage runs as two 90-day benefit periods, then an unlimited number of 60-day periods.
• After the first 6 months, each recertification follows a face-to-face meeting with the hospice doctor or hospice nurse practitioner.
• The patient signs a statement choosing comfort care instead of Medicare-covered treatment aimed at curing the terminal illness.
• Outpatient drugs for pain and symptoms cost up to $5 per prescription.
• Short-term inpatient respite care costs 5% of the Medicare-approved amount, so the family caregiver can rest.

Note what the 6-month rule is not. It is not a prediction that someone will die in 6 months, and hospice does not end if they live longer.

PDQ reports that only 37% of 332 patients with advanced cancer answered yes when asked whether they and their doctors had discussed any particular wishes about the care they would want if they were dying. Recall of those discussions was associated with lower rates of ventilation, resuscitation and ICU admission, and earlier hospice referral. If nobody has raised it, you can.

Open with the illness, not the paperwork: "Can we talk about what we are hoping this treatment will do, and what we would do if it stops working?" Then ask for a number: "If things go the way you expect, are we talking weeks, months, or years?" Ranges are honest. Silence is not.

Write down the answer during the visit and read it back. That single step catches the mismatch the research keeps finding.

For related reading, see Palliative Care, Practical Help for Caregivers, and Caregiver Burnout.

• National Cancer Institute — Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ), Health Professional Version
• National Cancer Institute — Communication in Cancer Care (PDQ), Health Professional Version
• National Cancer Institute — Advance Directives
• Medicare.gov — Hospice Care Coverage