This article was written for the Diverse Elders Coalition by Five Wishes.
Rosa was age 85, a widow, and doing great. She enjoyed good health, many friends and was involved in social activities at her church and in her community. Her children and grandchildren would say, only half-jokingly, that Rosa was healthier and more active than any of them and would likely outlive them all. Even her own doctor was impressed that a woman of her age was as alert and physically able as any patient half her age.
It really never occurred to Rosa or Rosa’s family that it might be smart to plan ahead in case she had an accident or suffered a severe health reversal. Why should it? Rosa was doing fine and who would ever want to raise such a depressing topic with someone so healthy and alive? Rosa would just wave them off with an “I’ll worry about that when the time comes.”
Not two years passed before Rosa’s circumstance changed dramatically. She was found unresponsive in her house by a niece who had stopped by for a visit. Rosa was rushed to a nearby emergency room and given a diagnosis of a CVA – a cerebrovascular accident, commonly known as a stroke. It was so serious that Rosa was unable to breathe on her own, nor could she swallow or care for herself in any way. Now the doctor was asking her family if she had named anyone to make medical decisions for her in case something like this happened. No, she had not, and nobody in her family had any idea of what to do, because nobody knew what her wishes were. As the doctor waited for an answer, Rosa’s family argued among themselves as they guessed and second-guessed how to proceed. Decisions that could have been made in the living room now had to be made in haste in the E.R. waiting room.
As sad a story as this is, it’s not an uncommon one. Studies show only about a quarter to a third of the U.S. adult population has an advance directive, which is a legal form in which you name the person you want to make medical decisions for you in case you can’t make them yourself. You grant that person the legal authority to act in your place and to make literal life-and-death decisions in your behalf. If you don’t name someone to do this, someone else, possibly even a stranger, will decide what happens to you, depending on the law in your state.
In a way, Rosa was fortunate. She lived in a large city and had a network of support within her family, and with rehab therapy was able to partially recover from her stroke. Rosa also had the financial means to afford private health insurance and not to have to rely solely on her Medicare coverage. But what about the millions of others not as fortunate? What about those with disabilities, LGBT people, those with limited literacy or those from non-western cultures whose first language is not English? Each group is faced with its own unique challenges to effective advance care planning:
- People with disabilities: Nearly one in five U.S. citizens reports having a disability. In a study sampling 53 persons with disabilities, a common theme reported was the desire to have greater control over their lives and the advance care planning process. This suggests health care providers may be excluding them from or limiting their involvement in discussions about these critical health care decisions. Worse, some report feeling pressured to choose one end-of-life option over another, so as not to be a burden to caregivers.
- LGBT people: Data suggest that same-sex couples experience barriers to participating fully in a partner’s care, including advance care planning, because traditional definitions of family inform hospital policy and influence staff behavior. Among older LGBT Americans, many do not have children and too many have been estranged from their families for years, and thus do not have a support network in place. Unless partners are legally married to each other or specifically named, many state laws exclude them from medical decision-making because they are not spouses or blood-related.
- Limited English proficiency: As noted, advance directive completion rates are poor among all U.S. adults, but they are particularly poor among groups with lower literacy levels, including Native Americans, African Americans, and Latinos. Complicating the problem is that almost all advance directive forms are written by doctors and lawyers and thus are written far above the reading level of most Americans, not just those with lower levels of literacy. Ironically, the advance directive form itself becomes a barrier to expressing patient wishes! And the lack of fluency and education in general hinders people of all groups from accessing health care providers and information.
- Cultural challenges: Those people whose first language is not English face even greater challenges to making their advance care plans known. Many state forms are available in English and Spanish, but literally dozens of other languages are spoken daily across the country. Shouldn’t their voice be heard too? In addition to language barriers, in many non-western cultures, personal autonomy comes second to family or group decision-making, and that should be understood and respected.
Five Wishes: A Workable Solution
Millions of individuals, families, health systems, hospitals, hospices, physician practices, financial planners, attorneys, funeral providers, places of worship and others have relied on Five Wishes since 1997. Five Wishes is an easy to understand and use 12-page advance directive booklet that lets you name the person you want to make your health care decisions when you can’t make them yourself. It helps you give direction to that person as to what you would want or not want in end-of-life scenarios. Best of all, Five Wishes lets you express your wishes about your comfort; maintaining dignity; how you want to be treated; what you want others to know; and the many other personal, family and spiritual matters people say matter most during times of serious illness. There are more than 35 million copies of Five Wishes in national circulation, and it’s available in 29 languages to address the broad cultural needs of a diverse society.
Serious illness and death are experienced differently among different groups, and the individuals within those groups have the right to be heard and to express their own wishes in their own words. By focusing on all the needs of the person – not just the medical and legal ones – Five Wishes has helped improve doctor-patient-family communication, diversity and overall satisfaction. It brings real peace of mind, both to the person who signs it and to his or her loved ones.
Learn more at www.fivewishes.org.
The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.