Helping With Treatment Decisions as a Caregiver

NCI has a health-professional summary on family caregivers in cancer. It reports survey findings that describe what this job actually involves. They are worth reading before deciding how to help.

• 72% of caregivers assisted with medical tasks.
• 73% were involved in discussions about care during hospitalization. But only 54% of those were asked what help was needed after discharge.
• 50% reported high emotional stress related to caregiving.
• 25% reported high financial strain.
• 50% were employed while caregiving, working an average of 35 hours per week.
• Cancer caregiving was described as episodic, lasting approximately 2 years on average.

One of those figures explains a great deal. Half of caregivers hold a job averaging a full work week alongside the caregiving.

Here is the finding that should change how a caregiver behaves in a consulting room.

One study measured how accurately caregivers reported the patient's difficulties. Caregivers correctly reported 67% of physical difficulties. They got 69% of psychological difficulties. And only 40% of social difficulties. No demographic factors predicted who would be accurate.

Read that last figure again. On social difficulties, caregivers were wrong more often than right.

NCI draws the conclusion for clinicians. The caregiver may not be an accurate informant of the patient's experience. And caregiver needs should be assessed separately from patient needs.

A separate interview study backs this up. Researchers interviewed 23 patients with advanced colorectal cancer, and 23 caregivers. Both groups agreed on four challenges. Emotionally processing the initial diagnosis or recurrence. Managing the practical and emotional sides of care. Facing an uncertain future. And encountering symptom-related suffering.

But then comes the striking part. In no instance did the patient and the caregiver name the same key challenge. Not once. They listed the same problems, and ranked them differently every time.

An analysis of office visits recorded on audiotape found something specific. Caregivers often spoke on behalf of patients without validation by the patients. NCI calls this pseudo-surrogacy. The same analysis found caregivers often merged their own concerns with the patient's concerns.

That is not a criticism of caregivers. It describes what happens under pressure in a short appointment. One person is frightened. The other wants to be useful.

But it is correctable, and the correction is mechanical rather than emotional:

• Ask before answering. When a clinician asks the patient something, wait. Silence in a consulting room feels much longer than it is.
• Say "I think" out loud. Compare two sentences. "I think the pain has been worse this week." And "The pain has been worse this week." The first invites the patient to correct it.
• Check the summary. At the end, restate what was said and ask the patient whether that matches their understanding.
• Keep separate lists. One list of the patient's questions, one of yours. Ask which is which.
• Ask about social difficulties on purpose. Work, money, relationships, isolation. Caregivers read these least accurately. They will not come up unless someone asks.

The same survey data records what caregivers asked for. It is more specific than the word "support."

• 43% reported needing help to manage emotional and physical stress.
• 40% wanted help making end-of-life decisions.
• 33% wanted help keeping their friend or relative safe at home.

Those are three different requests. Each has a different address. Emotional and physical stress points toward a counselor, a support group, or a clinician who asks about the caregiver directly. End-of-life decisions point toward palliative care and advance care planning. Home safety points toward occupational therapy, or a home health assessment.

Naming which one applies makes the request answerable.

This is the least intuitive finding, and it is the strongest argument against self-neglect.

NCI reports that patients and caregivers influence each other's mental and physical health. Researchers call these partner effects. They sit alongside each person's own outcomes. NCI also notes that caregiver well-being seems to shape how patients judge the quality of their care. One survey covered 689 patients and their caregivers. Higher levels of depression in caregivers went with patients rating their care as lower quality.

So caregiver depression is not a private matter running alongside the treatment. It appears to change how the treatment is experienced.

NCI also frames caregiver burden in a specific way. Burden is how a caregiver sees the demands of caregiving, weighed against the resources available to meet them. It is seen as high when the difficulty of the demand outweighs those resources. That framing matters because it gives two levers, not one. Reducing the demand is one. Increasing the resources is the other.

Not all outcomes are negative, and NCI says so. Some caregivers report post-traumatic growth and benefit finding. A minority experience anxiety, depression, or post-traumatic stress disorder.

NCI's caregiver page names concrete things rather than sentiments.

On sharing the load, it lists tasks that others can take. Chores such as cooking, cleaning, shopping, or yard work. Childcare or school pickups. Driving to appointments, or collecting medicines. And being the contact person who keeps others updated. It names two tools for organizing offers of help: SignUpGenius and Lotsa Helping Hands.

On self-care, the numbers are small on purpose. Take at least 15 to 30 minutes each day for yourself. Keep up regular activities where you can. NCI notes that studies show dropping them increases the stress felt. Doing them at a different time of day, or for less time, still counts.

It also prepares people for something awkward. Some people will not help, and NCI says one common reason is that they may be coping with their own difficulties.

Support groups meet in person, by phone, or online. NCI notes that some people go simply to listen.

Related pages: your survivorship care team covers who does what. And how to support someone with cancer covers the part this page keeps pointing at.

• NCI PDQ — Informal Caregivers in Cancer, health professional version
• NCI — Support for Caregivers of Cancer Patients