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. And 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. The National Institute on Aging says the proxy "should be familiar with your values and wishes." The proxy does not have to be a relative. If nobody is named, state law picks. NIA says that is typically your spouse, your parents if they are available, or your children if they are adults. NIA warns that an unmarried partner who was never named may be left out. 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 rule names a spouse, a domestic partner including a same-sex domestic partner, another family member, or a friend. It also protects "his or her right to withdraw or deny such consent at any time." A hospital may not limit visits based on race, religion, sex, gender identity, sexual orientation, or disability. A patient may also bar one named person. Ask the nurse to put that 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.'" Siblings, grandparents, and in-laws are not covered for this reason. If an aunt raised you, say so. It may qualify.

HHS says a provider may share your information with family or friends involved in your care when "you tell the provider or plan that it can do so." It may also share when "you do not object to sharing of the information." If you cannot give permission, "a provider may share information with these people if it seems like this would be in your best interest."

Use that. Name 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.

The National Family Caregiver Support Program runs through the Administration for Community Living. Respite means paid short-term relief so you can leave the house. The program funds five things:

• Information about services in your area.
• Help getting signed up for them.
• Counseling, support groups, and caregiver training.
• Respite care.
• Limited extra services.

It covers adults caring for someone 60 or older. It covers caregivers of a person with Alzheimer's disease at any age. It also covers relatives 55 or older who raise children under 18, or who care for adults 18 to 59 with disabilities. In one reported year it gave nearly 6 million hours of respite to more than 604,000 caregivers.

Call the Eldercare Locator at 800-677-1116, Monday to Friday, 9 a.m. to 8 p.m. Eastern. They route you to your Area Agency on Aging. You do not have to explain the family history to qualify.

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."
• 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 at home experience abuse. CDC says it happens "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 will connect you. If the person lives in a nursing home or assisted living, ask for the Long-Term Care Ombudsman, a state advocate for residents. If anyone is in immediate danger, call 911. 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?
• How many respite hours can I get through the Area Agency on Aging?
• 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
• Advance Care Planning: Advance Directives for Health Care — National Institute on Aging
• 42 CFR 482.13, Patient's Rights — eCFR
• FMLA Qualifying Reasons for Leave, Fact Sheet 28F — US Department of Labor
• Family Members and Friends: HIPAA — US Department of Health and Human Services
• National Family Caregiver Support Program — Administration for Community Living
• About Abuse of Older Persons — CDC
• What If I Suspect Abuse, Neglect, or Exploitation? — Administration for Community Living