When Carolyn Brent received the shocking phone call in 1997 that her elderly father could no longer live independently, she felt prepared, rather than fearful of what was to come.
Years previously when Brent was 18-years-old, her father first began preparing her for life without him. Brent, who is now 50-something, recalled listening intently despite being in denial.
Brent’s father eased into the end-of-life conversation as they sat on a beach. Father and daughter would have at least two additional specific conversations over the years. A Vietnam veteran and Purple Heart recipient, William L. Brent would eventually file documents, including a medical care directive, a power of attorney and a will with the Veterans Administration. When his daughter received “that call” that he had been diagnosed with dementia, she knew, for example, that her father did not want to be in a nursing home. His advance care directive provided his youngest child with a blueprint that guided her for the 12 years she was her father’s primary caregiver.
Brent, who is the youngest of eight children, is also an elder care advocate, public speaker and the author of “The Caregivers Companion: Caring for Your Loved One Medically, Financially and Emotionally While Caring for Yourself,” as a result of her experience.
The National Institute on Aging defines advance care as planning that outlines specifically the type of medical care you want if you become too ill to make decisions. Each state may have a different name for the document, but these instructions are written in a legal document typically called an advanced care medical directive.
The document has three forms:
- Living will, which outlines types of medical treatment you want such as CPR done to restore your breathing or if you want to endure having to eat through a feeding tube.
- Health care proxy, identifying a person to make medical decisions; and
- Durable power of attorney, which assigns a person to handle transactions such as bank drafts and paying bills.
The advance directive kicks in if the sick loved one can no longer communicate his or her desires. The document can be created with the help of an attorney or hospital administrator, a palliative care program through a doctor or organizations, such as Aging With Dignity, which offers the 5 Wishes Form. The advance directive must be registered with the state where the person lives and it must follow that state’s guidelines.
Too Few People Have Advance Directives
The Centers for Disease Control and Prevention says that only one-third of adults have an advance directive. Among people 60 years and older, about half have one, but only 24-35 percent of their physicians know their patient’s directive exists. Some research suggests having a care plan in place leads to medical cost savings.
Carol Wilson, director of Palliative Care Services at Riverside Health System, works with doctors and patients on end-of-life planning and care. It’s common for elderly or dying patients to be more willing to discuss an advance care plan to “relieve a burden on their family,” she says. If the elder loved one doesn’t want to discuss it, Wilson suggests teaming with their doctor, rather than trying to force them.
An advance care directive is not just for the elderly, though. Wilson said that her advance care directive kicked in unexpectedly 10 years ago when she was hospitalized after an accident. She couldn’t communicate for more than a week. Her husband knew her exact wishes and made decisions on her behalf.
How to Start the Conversation
If a person becomes ill, ends up in the hospital, and can’t communicate for themselves, medical professionals will do what they believe is best for the patient. What “is best” may be inconsistent with what the patient wants.
Wilson said that she eases into conversations with patients by using questions that do not necessarily seem as though the discussion is about end of life.
“We’ll say, ‘Tell me what’s important to you right now. What makes life worth living for you? What is unacceptable to you in terms of treatment?’” Wilson says. “We find those things that are unacceptable and devise a plan that would avoid the treatment that the patient considers unacceptable.”
Invite your family members to Sunday dinner, but don’t reveal the topic until they all sit down. Watching a movie or news story about an end-of-life issue can jump-start the conversation, she says.
Break Through the Wall of Discussing Advance Care Planning
Brent, who also has an updated advance care directive, recommends that families view it as a plan to come together to take care of the person they all love. Brent says the conversation should start before loved ones are sick. Everyone over 21 should have an advance care plan, she says.
Brent interviewed more than 1,500 caregivers for her book. Most of them wished they had gotten their loved one to complete an advance care directive. The caregivers also would have taken better care of themselves along the way, she says.