Cancer Caregiving in Complicated Family Relationships

Some families close ranks around a cancer diagnosis. Others do not. There may be an old betrayal, a divorce, an estrangement, or one sibling who has done everything for two years while three others send texts.

None of that goes away because someone is sick. This page sticks to what you can control:

• who has legal standing
• who gets told what
• who is actually required to help
• where a hard relationship crosses into an unsafe one

Three rules use three different lists. Know which one you are arguing about.

Who decides. A durable power of attorney for health care names someone to make medical choices if the patient cannot speak. That person is called a proxy, agent, or surrogate. If nobody is named, state law picks, and that may not be the person you would choose. In an estranged family, this one signed form settles more than any argument will.

Who visits. Federal hospital rules at 42 CFR 482.13(h) give the patient the right "to receive the visitors whom he or she designates." The designated visitor can be a spouse, a domestic partner, another family member, or a friend. A hospital may not limit visits based on race, color, national origin, religion, sex, gender identity, sexual orientation, or disability. If the patient does not want a certain person, tell the nurse and ask that it be put in the chart.

Who can take leave. The Family and Medical Leave Act covers time off to care for a child, spouse, or parent. The Department of Labor defines a parent as "a biological, adoptive, step or foster parent." It also counts anyone "who stood in loco parentis to the employee when the employee was a child." In loco parentis means a person who raised you without being your legal parent. The term "does not include parents 'in law.'" The fact sheet does not list siblings or grandparents as covered family. Check with your employer or the Department of Labor if your situation is unusual. If an aunt raised you, say so. It may qualify.

Patients can tell the care team who may get updates and who may not. Ask for one contact person for calls. In a family where news gets used as leverage, do this on day one.

NCI's summary for clinicians reports that about 50% of cancer caregivers were employed while caregiving. They worked an average of 35 hours a week. NCI notes "challenges in maintaining employment and social relations." It also reports that "the more social roles a caregiver performed, the more likely the caregiver was to experience stress and negative affect."

Disagreement is normal and measured. In observed talks described in that summary, caregivers "did not always agree with patients and, in one-third of the observations, contradicted the patients."

NCI advises that clinicians "assess caregiver needs independent of patient needs." So say it at a visit. You want your own load looked at, not only the patient's.

Respite means short-term relief so you can leave the house. Ask the oncology social worker what respite, counseling and caregiver support are available near you. You can also call the Eldercare Locator, a service of the Administration for Community Living, at 800-677-1116. You do not have to explain the family history to ask for help.

CDC defines four kinds of harm to older adults:

• Physical abuse is "illness, injury, functional impairment, or death resulting from the intentional use of physical force."
• Neglect is "the failure to meet an older adult's basic needs," such as food, water, shelter, clothing, hygiene, and essential medical care.
• Emotional abuse is "verbal or nonverbal behaviors that inflict anguish, fear, or distress."
• Financial abuse is "the illegal, unauthorized, or improper use of money, benefits, property, or assets."

About 1 in 10 older adults living in the community experience some form of mistreatment. CDC says the abuse occurs "at the hands of a caregiver or other trusted person."

Act today if any of these are true:

• Bruises, burns, or fractures nobody can explain.
• Doses skipped on purpose, or medicine that keeps going missing.
• The patient left without food, water, heat, or clean bedding.
• Money, cards, benefits, or property moving without clear agreement.
• Someone pushing the patient to sign a will, deed, or power of attorney.
• The patient cut off from phone calls or visitors by a relative.
• Fear of being alone with one specific person.

Report it to Adult Protective Services in the state where the person lives. The Eldercare Locator number above can help you find the right office. If anyone is in immediate danger, call 911 right away. For thoughts of suicide or self-harm, call or text 988.

• Who is the named contact for updates, and who is not on that list?
• Is a health care proxy signed, and is a copy in the chart?
• Which tasks am I agreeing to, and which am I refusing?
• What respite can I get through the social worker or local services?
• Can the oncology social worker run the meeting instead of us?
• If I cannot be in a room with a relative, how do we split the schedule?

You can refuse a task without refusing the person. Put in writing what you will do, and let the team hold the list.

• Family Caregivers in Cancer (PDQ), Health Professional Version — National Cancer Institute
• 42 CFR 482.13, Patient's Rights — eCFR
• FMLA Qualifying Reasons for Leave, Fact Sheet 28F — US Department of Labor
• Eldercare Locator — Administration for Community Living
• About Abuse of Older Persons — CDC