The Role of Laws and Lawyers in Helping Avoid Disappointment at the End of Life

• Publication year: 2019
• Citation: Vol. 23 No. 08

The Role of Laws and Lawyers in Helping Avoid Disappointment at the End of life

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by James H. Pietsch

Introduction

Too many times older persons are disappointed at the end of their lives. Some thought they had planned well. Others did not do much planning at all. Most were hoping for the best but got the worst. One just has to read the newspaper or watch the news to see examples of high-profile cases in which matters seemed to have turned out badly for an older person. These cases include fights over an older person's desire for autonomy and self-determination over one's own property decisions,¹ allegations of fraud theft or at least improper use of an older person's assets,² efforts to change the medical treatment choices of an older person at the end of life, and cases where individuals are fearful of extreme pain and suffering at the end of life.³ Just as often, it seems, entire families are disrupted by conflicts involving the care or the assets of an older person toward the end of life or disappointment over an inheritance or lack of an inheritance. Very often lawyers are involved too, whether they represent the older person, the family member or caregiver or, maybe, themselves.

At the University of Hawaii Elder Law Program ("UHELP")⁴ we hear many stories about disappointment from the rich (or more likely the children or grandchildren of the rich), the formerly rich, the not so rich and those in-between. Sometimes the stories are told to us by the older person and sometimes by a caregiver or by a disappointed heir. This is a two-part series of articles about some of the experiences, challenges and disappointments clients, families, caregivers, and attorneys may have in planning for the future, including incapacity and death or in the aftermath, and the role that laws and lawyers can play in avoiding disappointment. Not all persons will experience incapacity or will be subjected to undue influence, but many of the stories of disappointment involve such individuals. For this reason, this two-part series will review some of the information in the "dementia-capable" attorney's article about aging and dementia previously published in the Hawaii Bar Journal⁵ UHELP receives a number of calls from attorneys who are worried about their own capabilities and responsibilities in representing a growing population of older persons with dementia. This series will only touch peripherally on the issue concerning the increasing number of "unbefriended" and underrepresented individuals in our community vexing both health care providers and the legal system.⁶ Part 1 of this two-part series will set the stage about aging, dementia, and several medical-legal theories and ethical considerations relating to capacity, incapacity, undue influence, and abuse.

Part 2 of this series will provide an overview of some of the Hawaii statutes that are commonly applicable to proxy decision-making on behalf of a person who lacks capacity, or who may have limited capacity, or who may be unable to make decisions, or unable to make critical decisions on a timely basis. For the most part, individuals whose proxy decision-maker is trustworthy, existing laws may provide enough protection to those individuals facing important decisions toward the end of life. For others, there is little protection. A few statutes have provisions that appear to be inconsistent with protections afforded in other statutes and may even include what some may fear as a "license to steal" or a "license to kill" to put it dramatically Part 2 will also provide an overview of Hawaii's recent Our Care, Our Choice Act (H.B. 2739, 29th Leg. (Haw. 2018)) relating to medical aid in dying, which, some may sense as having both positive and negative characteristics.

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The Cuckoo's Nest⁷

Working at the university certainly has its privileges, and one such privilege is to be able to learn many new things. One example comes from a call UHELP received in which the caller asked if we knew about cuckoo birds and how they nest. Without much prompting, he described, in some detail, that the cuckoo bird is an avian brood parasitic animal that has been observed by scientists as well as philosophers for thousands of years because of its behavior.⁸ It turns out that the cuckoo lays its eggs in other birds' nests to spare itself the effort of raising its own young and, as it grows, the young hatchling will often shove any other hatchling of the host bird out of the nest.⁹ Some cuckoos will even ravage their hosts' nests out of revenge when the hosts do not accept their eggs.¹⁰

Getting to the point, the caller said that his family may have had a cuckoo in its family nest too, and she took almost everything. He explained that when he and his two siblings (brother and sister) were young, they lived in a household in which their mother and father always seemed to have a strained relationship. His sister, who continued to live with their parents in the old but large family home, even after she married and had her own children, always seemed to need money. The sister obtained powers of attorney from both of their parents, and she was on each of their accounts held in joint tenancy with rights of survivorship. Upon their mother's death, his sister became the trustee of their father's trust as well as the personal representative of his will.

More detail about this story will be included in Part 2 but, as a preview, the family was disrupted at the end of their parents' lives. Their sister had refused all of the brothers' requests to talk and refused to cooperate in mediation initiatives regarding their father.¹¹ Before their father's death, the brothers had reported allegations of abuse against their father to the lawyer who prepared the documents for their father and to Adult Protective Services, but to no avail. At the end, the caller said, their widowed father died most suddenly. He did not survive even six months in the nursing home in which their sister placed him. Their sister submitted an obituary to the newspaper, stating that their father died of Alzheimer's disease at 94 years old.

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The family home had little equity value since a reverse mortgage had taken most of its value. What little was left in the trust was divided among the three siblings. Their sister, along with her "dead-beat husband," eventually moved to the mainland and bought a house in a gated community. The two brothers lamented that she never shared anything with them—not even the planning of their father's funeral. At the funeral, she told everyone, including her brothers, that she was following their father's explicit instructions to her "about everything." She said he had shown her certain documents that she was "not to share with the boys." She also lashed out and told her brothers that their father "was nuts" and that "he was nothing to me and I am glad he is gone." Then she said she would not talk about either of the parents "ever again." The brothers knew that their father was troubled and that he seemed to have some memory loss, but they did not really know what their father was thinking or what he really wanted. All that the brothers knew was that their father seemed miserable at the end of his life, their sister excluded them from their father's affairs, and they were hurt and disappointed. Their sister had disrupted their lives— whether on her own or at the direction of their father, they may never know. The two brothers have not communicated with their sister in over two years.

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Aging and Dementia

Over the next 20 years, the number of persons age 65 and over is expected to increase from 15.2 percent of the population in the year 2016 to about 21.7 percent by the year 2040. U.S. Department of Health and Human Services, 2017 Profile of Older Americans (2018), https://www.acl.gov/sites/default/files/Aging %20and%20Disability %20in %20America/2 0170lderAmericansProfile.pdf.

By the year 2060, the number of persons age 65 and older is estimated to be 98 million. Id. While the aging population is diverse, their longevity and the pressing need for health care and legal advocacy is summarized by a sobering Administration on Aging report. Id. Since 1900, the percentage of Americans 65 years old and older has more than tripled and the number has increased almost 15 times. Id. In 2016, the older population (persons age 65 and older), numbered 49.2 million which represented 15.2% of the United States population. Id. In other words, over one out of every seven Americans is 65 years of age or older. Id. The year 2030 marks an important demographic turning point in U.S. history according to the U.S. Census Bureau's 2017 National Population Projections. U.S. Census Bureau, Older People Projected to Outnumber Children for First Time in U.S. History (2018), https://www.census.gov/news-room /press-releases/2018/cbl8-41 -population -prqjections.html. By 2030, all baby boomers will be older than age 65. Id. This will expand the size of the older population so that 1 in every 5 residents will be retirement age. Id. By 2035, there is expected to be 78 million people that are 65 years of age and older compared to 76.7 million under the age of 18. Id. This projected growth of the older population in the United States will challenge families, businesses, health care providers, and policy makers and programs, such as Social Security and Medicare. Id.

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The State of Hawaii Executive Office on Aging reports that the growth in the number of older adults ages 85 years or older is even more dramatic for Hawaii than in other states. See State of Hawaii Department of Health: Executive Office on Aging, Profile of Hawaii's Older Adults and Their Caregivers (2006), http://health.hawaii.gov/eoa/files/2013/07/ Profile-of-Hawaiis-Older-Adults-and-Their-Caregivers-2006.pdf. In 1980, there were 113,944 adults age 60 and older, representing 12% of the population. Id. Over a twenty-year period (1980-2000), Hawaii's older...