“I don’t want to be a vegetable.”
Brandi Bailey said she hears that statement frequently when she brings up the topic of serious illness planning.
But “that is not a medical-planning conversation,” said Bailey, vice-president of marketing with Plan Well Guide, a medical planning company based in Kingston, Ont. “There’s a whole lot of grey area between good health and death’s door.” Bailey was speaking at the IAFP Symposium in Edmonton last week.
When loved ones are called upon to make medical decisions in an emergency situation, whether or not a patient will end up “in a vegetative state is [just] a sliver of the different types of decisions one might have to make when they come into the hospital,” she said.
Unfortunately, Bailey said, most people aren’t equipped to make these decisions for themselves or their loved ones.
“Incapacity planning, as it’s currently done, doesn’t give people enough information to determine their values and beliefs,” she said, noting that most of this planning is conducted in the context of end-of-life planning.
“But this does not allow you to think ahead to serious illness planning,” she said. “What if there’s a chance I might live?”
She added that thanks in part to television and movies, many people do not understand how medical interventions actually work. For example, CPR is widely depicted as an intervention that people literally walk away from.
“In real life, chest compressions are often followed by mechanical ventilation, [where] tubes go down your throat to force you to breathe,” Bailey said. CPR “is very hard on the body” and was found to only be successful in 22 out of 100 cases, according to a 2009 study published in the New England Journal of Medicine, she added. (That figure plummets to three out of 100 for frail people living in nursing homes.)
She also said people should know the three types of care available when they have a serious illness: intensive care, which takes place in the ICU; medical care, which is surgeries and medications; or comfort care, which involves alleviating symptoms and providing peace during an illness.
Bailey said that once people understand these concepts, they can connect them to their “values and preferences” regarding those treatments.
Examples of values and preferences could include wanting to live as independently as possible after medical care, or avoiding as much pain as possible.
Bailey shared examples of her preferences: “I like to be clear-headed, so for me a medical intervention that involves medicines that compromise my clarity would be a difficult thing for me,” she said. “Anything that would inhibit communicating with my loved ones would [also] be a big sticking point for me.”
She said determining, documenting and sharing these wishes prepares a client and their loved ones to make decisions jointly with a medical professional.
Clients should also designate someone who can make health-care decisions for them should they become incapacitated. This person is called an attorney for personal care in Ontario, a substitute decision-maker or health-care agent in Alberta, and a representative (via a representation agreement) in British Columbia.
Bailey said a spouse may not be the best person for this role. “[You want] the pitbull in your life: the person who’s willing to be vocal; the person who’s willing to ask a lot of questions; the person who likes a lot of information and is willing to think through things,” she said.
She encourages clients to prepare their substitute decision-maker with as much information about their personal-care preferences as possible.
For example, a client can state whether they want family members or a professional to care for their body during an illness; the types of food they would or would not want to eat; and the types of clothes they’d want to wear. She also recommended that clients address what they would want their caregivers to know if caregiving created a financial hardship.
Bailey said Plan Well Guide offers several guides and resources to educate clients, prompt reflection on serious illness planning, and to document values and preferences.
She cautioned that once a plan is created, “don’t set it and forget it.” When there are lifestyle changes, revisit the documents. “What accompanies all these plans is the conversations around them” with families and other loved ones, she added.
Because financial advisors aren’t medical professionals, they shouldn’t give medical advice and should instead steer clients toward resources and conversations with appropriate experts and service providers, Bailey said.
Nonetheless, helping clients with medical planning is a relatively new service, she said, and doing so can provide advisors with a way to stand out from their peers. She also said that clients can often be receptive to discussing these issues.
“People are far more open to conversations about serious illness than they are death and dying,” Bailey said.
Did you know?
Since 2014, Alberta has had a “Green Sleeve” program, which is a standardized green plastic pocket that holds a personal directive, “goals of care” designation and advance care planning tracking record. The sleeve is meant to be carried around at all times, and all Alberta health-care providers know to review a person’s Green Sleeve if they become unresponsive or incapacitated. When entering someone’s home, first responders are trained to look for a Green Sleeve near the refrigerator.
Disclosure: Investment Executive was a media sponsor of the IAFP symposium. Part of the sponsorship included transportation costs. No coverage was guaranteed in exchange for the sponsorship.