Adult children should talk with parents about health and end-of-life preferences long before these matters become urgent, experts in the field say.
"If you can think early on about options, identify preferences, talk to people about what they would like done, you really tend to have more control over the process," according to gerontologist Donna Fedus, founder of the Connecticut-based consulting company, Borrow My Glasses.
More than a third of U.S. adults provide care for an older relative, according to the Pew Charitable Trusts. As life expectancy increases and health care becomes increasingly complex, Fedus said, that role becomes more difficult.
Talking with parents about their health status, their medications and their doctors while health is relatively good can give children important information and make the transition to the adult child actively managing care less jarring, she said.
Everyone over the age of 18 should have an advanced directive indicating what kind of medical care they would want if they were too ill to speak for themselves, said Anne Elwell, vice president of community relations for the Wethersfield-based consulting firm, Qualidigm. Families should be discussing these preferences with each other and with their primary care provider, she said.
"We have so many opportunities to help people," she said. "So much care is provided that is what we'd call futile. It's not what people want. It's extremely costly to the system. I think we really should focus on: What do people want? And start early so that everyone has the kind of end of life that they choose—not one that is chosen for them or forced upon them."
Advance directives and a form to appoint a health care representative to make decisions for a patient who cannot speak for themselves are available on the Connecticut Department of Public Health website. Elwell also recommends asking your primary care clinician about a Medical Orders For Life-Sustaining Treatment (MOLST) form, in which medical orders will specify that the patient receive only agreed upon treatments. MOLSTs had been piloted in Connecticut, and a new state law will make them available widely.
The Health Insurance Portability and Accountability Act (HIPPA) constrains clinicians from sharing information without the patient's permission. Fedus recommends asking parents to fill out a HIPAA form that authorizes information sharing with an adult child. Barring such a form, she emphasizes that children can always call the office and offer information on how a parent is feeling and functioning—even if the clinician is not able to respond.
All In The Family
Caregiving can put stress on sibling relationships and on relationships with one or both parents, Fedus said. An intermediary, who might be a family physician or a care manager trained in the role, can sometimes be helpful in resolving conflicts.
"I'm trying to bring objective information into the situation, because it's not helpful to have one child's perspective bouncing into another child's perspective without any objective professional opinion about what Mom and Dad need, what the choices are … how much things cost and so on," she said. "Once you provide people with that objective info, they can usually make a decision."
Below is a checklist of what to bring to every doctor's appointment:
• List of prescription medications, including dosages and information on who prescribed them
• List of vitamins, supplements and over-the-counter medicines, including dosages
• All patient information forms you receive from doctors or hospitals
• A log of concerning symptoms or behaviors
• A MOLST form (obtainable through your doctor)
Area Agency on Aging
• Find the agency for your region. They can connect you with supportive services and professionals who can help with care planning and negotiating differences between siblings and other family members.
• Download the organization's Prepare to Care Guide.
• Connecticut AARP has a guide with general tips and specific contacts that can help around the state.
Find a Certified Geriatric Pharmacist
• Get more expertise where you fill your parent's prescriptions by checking with this searchable database.
• Organizations like The Alzheimer's Association are a good place to look for information as well as connections to other caregivers in your area
This story was reported under a partnership with the Connecticut Health I-Team (c-hit.org).